This weekend is looking so much brighter for Quinn and the family. We planted flowers, he about rode the wheels off of his schooter and ate like a horse!!! What a wonderful feeling that was for Mom! His copies dropped significantly in his body and am expecting that by weeks end they will be much less. They dropped 1100 with new meds in one weeks time. Currently we are weaning him off of the Tacrolimis which is keeping his counts low. Once we get him off of this, his baby immune system should be smart enough to kick in and attach whatever shows up including the copies!
Thursday morning we go to get the Hickman out at 8:00. What a blessing that will be all the way around. It hasnt been used for a long time. Just maintaining it everyday. It has been ages since he has needed a transfusion. Yeah Quinn! His WC and Platelets are holding steady.
All in all he is doing well and I am starting to rest a bit easier. It is hard going through this process ... the wondering and waiting. I am not patient at all so that makes it harder and the other stresses of life come into play also. Just knowing Quinn is getting better is at the top of my list.
Next week Juen and Ming are coming for a week long visit. We are so excited! I promised him back in January that as soon as he was up to it we would have them out. That was his only wish to me. Well, he has earned that wish over and again. Juen comes in on Sunday and Ming comes on Monday. These beautiful girls were in the orphanage in China with him and they were known as "The Three Musketeers" or so he calls them. Both girls were adopted to families that are awesome! And we are able to keep the kids together. What a blessing that is in itself!
Monday, June 4, 2012
Wednesday, May 23, 2012
Day +93 Still looking Ugly!
Today is another day of worry and new meds! Last night I received a call from the BMT office. The copies of HHV6 have increased quite quickly up to 1600 in just a few days. This morning Quinn will start a new med which is much stronger than the other. Hopefully, this will kill the copies in his body. If they continue to climb we have one more medication that will need to be given at home. So, all fingers and toes crossed that this med works. It is such a worry to me for fear of rejection, blindness, heart, lung, renal and liver functions could shut down. I had really thought that we were past the copies coming back - Unfortunately, I was wrong.
Tomorrow morning we head back to the BMT office for more labs to see how many more copies have developed since Monday morning. Hopefully, not many! Also, it is the last day of school for the girls. I have decided to treat them to Red Lobster for the graduating 5th graders and 3rd grader. I know they will enjoy this and will help to keep my mind free for a few minutes.
Tomorrow morning we head back to the BMT office for more labs to see how many more copies have developed since Monday morning. Hopefully, not many! Also, it is the last day of school for the girls. I have decided to treat them to Red Lobster for the graduating 5th graders and 3rd grader. I know they will enjoy this and will help to keep my mind free for a few minutes.
Wednesday, May 16, 2012
Day +86
So far so good! Quinn is still sleeping. Normally, he can sleep about 12 hours a day. Which at this point and time is really good for his body. Hopefully, it is hard at work on breaking those copies down.
Tomorrow morning we head out to the doctor for more labs. The thought of getting the Hickman out is probably not going to happen for a while unless they decide to go ahead and remove it due to the length of time it has been in. I may need to start an IV several a week for medications that arent oral if they make the decision to go there. Which I can do easily, and Quinn trusts me. Preferably, I would love to see the Hickman go due to the heat of summer and risk of infections. I am very nervous about having him out for a very long period of time due to the heat and humidity. However, if they switch him over to IV meds it may be a challenge getting them as they are new and come from out of the country and made specifically for the HHV6 virus. Will do whatever it takes to make sure he gets what he needs. Fortunately, for him he has a mother with a strong spirit we'll say for the sake of argument! Not sure if that is good or bad. When I get keyed up about something his eyes become huge and he sits saying nothing! Which for him is very unusual.
I still have not come to grips with the information that I received yesterday. Very hard to understand why this is not leaving his body. His counts are up and I was under the impression that once that happened his body would fight the copies. However, if his counts did drop, it will be harder for his body to fight the copies. The medicine alone will drop his counts as well. The doctor and I will have a private session tomorrow and will get more answers. He is such a caring and good doc that I have to put my faith in him.
Tomorrow morning we head out to the doctor for more labs. The thought of getting the Hickman out is probably not going to happen for a while unless they decide to go ahead and remove it due to the length of time it has been in. I may need to start an IV several a week for medications that arent oral if they make the decision to go there. Which I can do easily, and Quinn trusts me. Preferably, I would love to see the Hickman go due to the heat of summer and risk of infections. I am very nervous about having him out for a very long period of time due to the heat and humidity. However, if they switch him over to IV meds it may be a challenge getting them as they are new and come from out of the country and made specifically for the HHV6 virus. Will do whatever it takes to make sure he gets what he needs. Fortunately, for him he has a mother with a strong spirit we'll say for the sake of argument! Not sure if that is good or bad. When I get keyed up about something his eyes become huge and he sits saying nothing! Which for him is very unusual.
I still have not come to grips with the information that I received yesterday. Very hard to understand why this is not leaving his body. His counts are up and I was under the impression that once that happened his body would fight the copies. However, if his counts did drop, it will be harder for his body to fight the copies. The medicine alone will drop his counts as well. The doctor and I will have a private session tomorrow and will get more answers. He is such a caring and good doc that I have to put my faith in him.
Tuesday, May 15, 2012
Day + 85 Not so Kind!!!
I just received a call from the BMT office and spoke to the nurse. In the beginning Quinn had copies of antiobodies come up in his body of things that he had as a child that were left untreated. Bear in mind, he joined us at the age of 7 and there was no way to kinow what he had or not had. He has continually had a fever blister quite often on his upper lip mostly in the same place. One of the virus' that was detected in his body is HHV6. It can be quite serious especially to a person who has had a Bone Marrow Transplant and could cost them their life or to reject the transplant. This time there were 200 copies detected in his body which is a low number but still there, none the less and in fear of jeopardizing his transplant. If that happens ... Life will never be the same for anyone again!! I am so beside myself over this and had hoped that we were past this part. I was wrong. At this point he will be put on strong medications that can affect his Kidneys once again. Worst case scenario would be Renal Failure. We will take the meds for 2 weeks and wait again for the Engraphment Study and HHV6 tests to come back. I should know before Monday at the very latest.
Please say a prayer for little Quinn that this Monster leaves his body for good this time. At this point, I am so upset and am beside myself over this! Just those nasty thoughts of what the outcome could be for him. Having a hard time keeping it together just now. Sorry!
Good Luck to me trying to sleep again tonight!!! NOT
Please say a prayer for little Quinn that this Monster leaves his body for good this time. At this point, I am so upset and am beside myself over this! Just those nasty thoughts of what the outcome could be for him. Having a hard time keeping it together just now. Sorry!
Good Luck to me trying to sleep again tonight!!! NOT
Tuesday, May 8, 2012
Day +78 and Further Away From the "BMT Monster"
Wow! It has truly been a long time since I have posted. Many apologies!!! Exciting stuff to see Quinn at Day +78 and further away from the dangers of the BMT Monster that could have exploded on us. We were being watched very carefully by someone special!
Quinn seems to be doing very well and I hope that we are far away from the "Bone Marrow Transplant Monster". His meds have been cut back substantially and is down to 4 pills a day to 1 liquid. That is super progress. He actually would be less if his blood pressure would cooperate. Unfortunately, not until he is off of the Tacrolimus. He has eliminated the 2nd blood pressure medication which is great.
Our White Count 2 weeks ago was 6.44 and platelets at 86K. We have another appointment on Thursday and will be very anxious to see how the progress is coming along. At this point, his white count is considered "Low Normal". He is also make his own red cells and Hemaglobin for him is wonderful at 10.1. I am very proud of his progress. The latest studies show that he is 100% engraphed with donor cells. Perfect!!!!! His platelets were such poor quality that not surprised that they are all gone.
Yesterday, I called the office to see about getting his Hickman out. This week they will draw labs on him without the line. And if he does well then they will take it out the next week. Like he isnt going to do well!!! I have been sticking him for the last 4 years and starting IV's, etc - he has done fabulous and is a star patient. He may surprise the staff tell them that I will do the labs on him! He has been known to do that before. And that is what happened. I sat with the cart full of supplies many a time taking care of him in the hospital! That is trust! A mother over a trained nurse or the specialized vascular team.
Quinn's energy is slowing coming back each day. I think that Alex is keeping him busy and making sure that he takes care of himself. They are stuck together like glue. I call them the "twins". Amazing stuff how close they have become. Quinn sits and waits for her to come home on the couch everyday where he can see Alex come in and she never says hello to me before running to him. Alex has gotten to where she doesnt want to participate in any outside school activities because she wants to see Quinn. He is sleeping still about 12 hours a day still. Very good for his body to recover! Outside unfortunately, is limited. He is allowed to ride his bike and scooter for a bit. However, he tires so easily that it is hard on him. He has to rest before putting the scooter up.
We have had a few dots of blood and he quickly heals up. Nothing significant. I think he bleeds less than my girls when a tooth is pulled. I actually look forward to pulling a tooth now as opposed to planning around platelets and spending the night up with meds, IV and Factor in place. Whew! Life has changed for the good! He tells me that no one loves him like his mother and he is so glad that he had the transplant. The other day he also told me that he had never felt so good in his whole life. No Anemia will make a huge difference to a little body.
Quinn still has some difficulty eating and is very slow with food. Upset tummy still comes around several times a day. But, he is ahead of the curb and this is normal. Poor little guy is a tad under 50 lbs. now but has grown so tall. Sure, he will probably be the size of an American by any stretch of the means. I would like to see him at least 100lbs later in life.
At the moment Life is Good on the Medical Side!!!!
Quinn seems to be doing very well and I hope that we are far away from the "Bone Marrow Transplant Monster". His meds have been cut back substantially and is down to 4 pills a day to 1 liquid. That is super progress. He actually would be less if his blood pressure would cooperate. Unfortunately, not until he is off of the Tacrolimus. He has eliminated the 2nd blood pressure medication which is great.
Our White Count 2 weeks ago was 6.44 and platelets at 86K. We have another appointment on Thursday and will be very anxious to see how the progress is coming along. At this point, his white count is considered "Low Normal". He is also make his own red cells and Hemaglobin for him is wonderful at 10.1. I am very proud of his progress. The latest studies show that he is 100% engraphed with donor cells. Perfect!!!!! His platelets were such poor quality that not surprised that they are all gone.
Yesterday, I called the office to see about getting his Hickman out. This week they will draw labs on him without the line. And if he does well then they will take it out the next week. Like he isnt going to do well!!! I have been sticking him for the last 4 years and starting IV's, etc - he has done fabulous and is a star patient. He may surprise the staff tell them that I will do the labs on him! He has been known to do that before. And that is what happened. I sat with the cart full of supplies many a time taking care of him in the hospital! That is trust! A mother over a trained nurse or the specialized vascular team.
Quinn's energy is slowing coming back each day. I think that Alex is keeping him busy and making sure that he takes care of himself. They are stuck together like glue. I call them the "twins". Amazing stuff how close they have become. Quinn sits and waits for her to come home on the couch everyday where he can see Alex come in and she never says hello to me before running to him. Alex has gotten to where she doesnt want to participate in any outside school activities because she wants to see Quinn. He is sleeping still about 12 hours a day still. Very good for his body to recover! Outside unfortunately, is limited. He is allowed to ride his bike and scooter for a bit. However, he tires so easily that it is hard on him. He has to rest before putting the scooter up.
We have had a few dots of blood and he quickly heals up. Nothing significant. I think he bleeds less than my girls when a tooth is pulled. I actually look forward to pulling a tooth now as opposed to planning around platelets and spending the night up with meds, IV and Factor in place. Whew! Life has changed for the good! He tells me that no one loves him like his mother and he is so glad that he had the transplant. The other day he also told me that he had never felt so good in his whole life. No Anemia will make a huge difference to a little body.
Quinn still has some difficulty eating and is very slow with food. Upset tummy still comes around several times a day. But, he is ahead of the curb and this is normal. Poor little guy is a tad under 50 lbs. now but has grown so tall. Sure, he will probably be the size of an American by any stretch of the means. I would like to see him at least 100lbs later in life.
At the moment Life is Good on the Medical Side!!!!
Wednesday, March 28, 2012
Day +37 Home At Last
We came home on Friday March 16th (Day +25) !!!!! Finally we are home and getting settled into a routine again. Spring Break is over and the girls have went back to school ... not so happy I might add! Quinn wore himself out playing with the girls last week and his clinic appointments. We have clinic appointments every Monday and Thursday so far. We have been checking his labs/counts and receiving platelets. So far his Hemaglobin is holding strong at 10.3-10.78 which is really good! Especially for Quinn and is within the normal range. We are thinking that he might be spitting out a few red cells. I have never seen his hands and feet so red before. It is like the blood is circulating in a normal body! His White Count is not as spiffy as the RBC unfortunately. Monday he received another dose of GCSF again to try and boost his white cell count up. I will be anxious to see what that number is tomorrow. As of Monday he was at 1080 which is much lower than it was the Thursday before. It is possible that he will have to have some cells added. We will know within the next several weeks I believe. The Dr. mentioned that he would try to wait until Day +45 or there abouts before he made a decision.
Quinn's energy level is slowly returning and see him making strides to his old self. His eating is not back to normal that is for sure. But, is trying and at this point he lives for Chipolte. We should buy stock or something in the company I think!
I am slowly getting back into my routine and trying to take my house back so to speak and get things organized the way it was. Owen and the girls tried to keep things up but it wasnt the way I left things. At least it was cleaned very thorough before we came home and was safe for Quinn. Hopefully, a few more days and I will have it back together. Just in time to get the short sleeve spring/summer clothes out for the kiddos and order long sleeve shirts for Quinn (no short sleeves allowed out of the house). Then my office will be the next spot. My wonderful little 4 legged creatures somehow made it in while the door was left open and made a huge mess with my papers that I had sorted! Fun Stuff!
Thanks to all for the continued prayers. Unfortunately, we are not out of the woods just yet but are on much safer grounds!
Quinn's energy level is slowly returning and see him making strides to his old self. His eating is not back to normal that is for sure. But, is trying and at this point he lives for Chipolte. We should buy stock or something in the company I think!
I am slowly getting back into my routine and trying to take my house back so to speak and get things organized the way it was. Owen and the girls tried to keep things up but it wasnt the way I left things. At least it was cleaned very thorough before we came home and was safe for Quinn. Hopefully, a few more days and I will have it back together. Just in time to get the short sleeve spring/summer clothes out for the kiddos and order long sleeve shirts for Quinn (no short sleeves allowed out of the house). Then my office will be the next spot. My wonderful little 4 legged creatures somehow made it in while the door was left open and made a huge mess with my papers that I had sorted! Fun Stuff!
Thanks to all for the continued prayers. Unfortunately, we are not out of the woods just yet but are on much safer grounds!
Wednesday, March 14, 2012
Day +23
What a day for good news!!!! YEAH... Quinns ANC is now 800!!! Yep, that is right. So excited that he jumped that much in one day. The doctors tell me that it will go quickly from here. Will see but know that we were given a number of 2000 to reach today. Disappointing news on some levels. But do need Quinn to go home and stay home. However, if the numbers come up and his blood pressure is under control it is POSSIBLE that we could potentially go home on Monday! Yep, that is right - Monday!
Quinn needed an infusion of platelets today. We have known that since 5am this morning. He was at 18k which is extremely low. Now it is after 8:30pm and still no platelets. They have finally arrived but not been given. At this point, he probably has absolutely no platelets in his body whatsoever. The doctors planned for lots of platelets to be on hand for Quinn in a minutes notice and were furious when they learned of this situation. Just wait until they come to visit me in the morning expecting to see a smiling face and a cup of Joe!!! Not gonna be pretty at all. From what I can tell they have had them for over 2 hours. The folks at the blood bank seemed to speed up after the last call and Quinn's name was given. The understood the need after that. We have received so many platelets from them that they should be on my christmas list!!
Eating and drinking has gone really well today! The TPN has been cut and he is on his own. All of his meds except for one have now been converted over to oral meds. Doing really well. He cant wait to get home so that he can choose what he wants to eat rather than what someone has a slim menu of. We are both tired of the food!!! I would love to have a steak with a good drink and sit down to relax!
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Quinn has been energetic today! He has walked alot and gotten out of the room quite a few times. We had breakfast in the playroom this morning together. That was fun! A nice change of scenery.
Owen and the girls came up tonight. We were both quite surprised. Sweet Little Alex wrote a paper on Glanzmanns and Bone Marrow Transplants. She didnt miss a beat and wrote it intelligently all 5 pages of it. She has certainly been paying attention to this whole process!!! Good job dollie! A special thanks to Ms. Allen!!!!!
Today only a few growing pains! Once he is off of the one medication he will not have the pains any longer. Tonight I gently patted his back and I thought he was going to come unglued. It was very painful he said in the back and shoulder blade. BAD MOMMY!!!!! I felt terrible and almost cried. The doc was sitting there and said that was the case and it probablly really did hurt him. He said the ribs and shoulders were extra sensitive because of the lungs and breathing.
Thanks 5th Grade Renner Class for sending the great pictures of Quinn the Monkey!! We so enjoyed them!
Cross your fingers everyone for a Homecoming on Monday!
Quinn needed an infusion of platelets today. We have known that since 5am this morning. He was at 18k which is extremely low. Now it is after 8:30pm and still no platelets. They have finally arrived but not been given. At this point, he probably has absolutely no platelets in his body whatsoever. The doctors planned for lots of platelets to be on hand for Quinn in a minutes notice and were furious when they learned of this situation. Just wait until they come to visit me in the morning expecting to see a smiling face and a cup of Joe!!! Not gonna be pretty at all. From what I can tell they have had them for over 2 hours. The folks at the blood bank seemed to speed up after the last call and Quinn's name was given. The understood the need after that. We have received so many platelets from them that they should be on my christmas list!!
Eating and drinking has gone really well today! The TPN has been cut and he is on his own. All of his meds except for one have now been converted over to oral meds. Doing really well. He cant wait to get home so that he can choose what he wants to eat rather than what someone has a slim menu of. We are both tired of the food!!! I would love to have a steak with a good drink and sit down to relax!
Sw
Quinn has been energetic today! He has walked alot and gotten out of the room quite a few times. We had breakfast in the playroom this morning together. That was fun! A nice change of scenery.
Owen and the girls came up tonight. We were both quite surprised. Sweet Little Alex wrote a paper on Glanzmanns and Bone Marrow Transplants. She didnt miss a beat and wrote it intelligently all 5 pages of it. She has certainly been paying attention to this whole process!!! Good job dollie! A special thanks to Ms. Allen!!!!!
Today only a few growing pains! Once he is off of the one medication he will not have the pains any longer. Tonight I gently patted his back and I thought he was going to come unglued. It was very painful he said in the back and shoulder blade. BAD MOMMY!!!!! I felt terrible and almost cried. The doc was sitting there and said that was the case and it probablly really did hurt him. He said the ribs and shoulders were extra sensitive because of the lungs and breathing.
Thanks 5th Grade Renner Class for sending the great pictures of Quinn the Monkey!! We so enjoyed them!
Cross your fingers everyone for a Homecoming on Monday!
Tuesday, March 13, 2012
Day +22
Todays ANC is a whopping 557!!!!!! Yeah ... way to go Quinn!!! That is a large leap from yesterday. Those growing pains are paying off in a big way. The plan originally was to stay at 500 for 3 days and we could go home. Now that they have reduced the TPN on him they want to make sure he can hold his own on that and keep the numbers right. I have been working with him on that. Even though he gets mad at me. He will say "Quit pushing me Mom". I let him know that it was my job to push him and give him the support needed to go home! This is a big step. All of his meds have now been pushed over to pill form except for the TPN and blood products. Another big hurdle passed! This morning he received a unit of packed red cells and will not receive platelets until tomorrow.
During breakfast this morning he developed "growing pains" in his left arm and leg. Usually, they are in the leg. So, pain meds early today. All part of the process. Everything seems to be on track except for our sleeping. They even unleashed him from the IV pole today for a while until the next antiobiotic runs. I think when I go home I am going to crawl into bed and sleep for 2 days straight!!! Sheer exhaustion and am so tired of my back hurting. Not sure what it is about being in the hospital that is so exhausting.
Hoping tomorrow will be a better day with less nausea.
During breakfast this morning he developed "growing pains" in his left arm and leg. Usually, they are in the leg. So, pain meds early today. All part of the process. Everything seems to be on track except for our sleeping. They even unleashed him from the IV pole today for a while until the next antiobiotic runs. I think when I go home I am going to crawl into bed and sleep for 2 days straight!!! Sheer exhaustion and am so tired of my back hurting. Not sure what it is about being in the hospital that is so exhausting.
Hoping tomorrow will be a better day with less nausea.
Monday, March 12, 2012
Day +21
ANC count this morning is 364. His hemaglobin took a big jump on its own. So something else good is happening in his body. The platelet count fell about 40k so that caused the overall ANC to be lower. Today he will receive platelets at some point. I will be happy when his body starts making its own platelets.
Today we should find out if the antiobiotic is helping the HHV6 (Rosiolla) and CMV (bad case of Mono) virus' from childhood. I am hoping that the CMV is gone now and forever. For whatever reason it decided to be strong and try to come back. Unfortunately, the test did not come back and am being told that it will be late in the week.
Alex and Janie were out of school today so they came to visit today. The kiddos just hung out and want movies and played electronics. I barely slept last night so it was easy and fun to watch with them.
Quinn had growing pains again later in the day! He went to sleep early. However, managed to meet his goal of eating and drinking! This has to continue so we can go home without TPN!
Today we should find out if the antiobiotic is helping the HHV6 (Rosiolla) and CMV (bad case of Mono) virus' from childhood. I am hoping that the CMV is gone now and forever. For whatever reason it decided to be strong and try to come back. Unfortunately, the test did not come back and am being told that it will be late in the week.
Alex and Janie were out of school today so they came to visit today. The kiddos just hung out and want movies and played electronics. I barely slept last night so it was easy and fun to watch with them.
Quinn had growing pains again later in the day! He went to sleep early. However, managed to meet his goal of eating and drinking! This has to continue so we can go home without TPN!
Sunday, March 11, 2012
Day +20
ANC counts came back at 280 today!! That was a nice jump. Again, he was having alot of "growing pains" in his legs so that is a help for the white cells to come out. But so painful. I feel sorry for the little guy!
Quinn continues to try solid foods today. The nausea seemed to be a little worse than yesterday. I am going to try and see if they can give him some meds before he eats to help with that.
Alex and Janie came up for a while today. It was fun to see them again! Alex and Quinn sat side by side in the bed as usual! Those two are soldered at the hips I tell ya! Janie wanted to be here but got a little bored, but she would never admit it. Tomorrow is a non school day so am sure they will come up for a while again.
I have been down in my back again for the past 4 days and am ready for this junk to leave me!! Honestly, I think alot of it is stress and this couch thing I am sleeping on. Oh how nice it will be to get back to my own bed again once and for all! I am really hoping for next week if all continues to go well!
Quinn continues to try solid foods today. The nausea seemed to be a little worse than yesterday. I am going to try and see if they can give him some meds before he eats to help with that.
Alex and Janie came up for a while today. It was fun to see them again! Alex and Quinn sat side by side in the bed as usual! Those two are soldered at the hips I tell ya! Janie wanted to be here but got a little bored, but she would never admit it. Tomorrow is a non school day so am sure they will come up for a while again.
I have been down in my back again for the past 4 days and am ready for this junk to leave me!! Honestly, I think alot of it is stress and this couch thing I am sleeping on. Oh how nice it will be to get back to my own bed again once and for all! I am really hoping for next week if all continues to go well!
Saturday, March 10, 2012
Day +19
No ANC counts today. It is evident that his white cells are going up. However his platelet count is figured into all of this. By him being "platelet dependent" for the next month or so, this will make the ANC lower.
Quinn did have more solid foods today with some nausea. The switch over could be difficult with all of the fluids he is receiving still. He also managed to drink the required amount of fluids as well! Today Quinn had his first 4oz. of grape juice. Yep, grape juice and no bleeding! What a treat for him and me. For some reason grapes, onions and tomatos caused him to bleed before. I would imagine that having donor platelets on boards is what helped him along. Unfortunately, until his new platelets come in we will continue to get platelets probably every other day or hopefully three. Will see how his body handles all of this
The girls went to the triplets birthday party today with Uncle Chad and Aunt Megan. They had a nice time it seemed and was glad that they could all be together. They dropped the girls off at the hospital and came up to see Quinn for a bit! What a refreshing breath of air that was to see my brother and his family!
Quinn did have more solid foods today with some nausea. The switch over could be difficult with all of the fluids he is receiving still. He also managed to drink the required amount of fluids as well! Today Quinn had his first 4oz. of grape juice. Yep, grape juice and no bleeding! What a treat for him and me. For some reason grapes, onions and tomatos caused him to bleed before. I would imagine that having donor platelets on boards is what helped him along. Unfortunately, until his new platelets come in we will continue to get platelets probably every other day or hopefully three. Will see how his body handles all of this
The girls went to the triplets birthday party today with Uncle Chad and Aunt Megan. They had a nice time it seemed and was glad that they could all be together. They dropped the girls off at the hospital and came up to see Quinn for a bit! What a refreshing breath of air that was to see my brother and his family!
Friday, March 9, 2012
Day +18
Today Quinns ANC count was at 210! Yeah what a jump and almost half way there. He has finally began to agree to continue to eat real food. That is a huge bonus. He seemed to think that he didnt have to eat with TPNand Lipids running. I educated him really quick about that. So, the food of the day for him was hot roast beef with brown gravy. He did manage to drink the 9 oz. ofwater required too!! He just has so much fluids running that he needs to get off of some of them.
Some of his meds have been moved over to pill form. So, that is a huge bonus to not have that extra running. I managed to get one changed over also. The nurses and I have been working on that. I expect more to be moved over this next week in preparation of him going home if all stays the same. BTW, he is a champ at taking pills! Truly, he can swallow a cup of pills in nothing flat. Much more than I can do.
Quinn has started the past few days have serious "Growing Pains" in his legs. I have been told that it is very painful and have encouraged him to tell me when he starts to get them so that we can get some meds on board. This is from the bone marrow trying to release more white cells. Usually, this will show up in the counts soon thereafter. Go Quinn!!!!
Some of his meds have been moved over to pill form. So, that is a huge bonus to not have that extra running. I managed to get one changed over also. The nurses and I have been working on that. I expect more to be moved over this next week in preparation of him going home if all stays the same. BTW, he is a champ at taking pills! Truly, he can swallow a cup of pills in nothing flat. Much more than I can do.
Quinn has started the past few days have serious "Growing Pains" in his legs. I have been told that it is very painful and have encouraged him to tell me when he starts to get them so that we can get some meds on board. This is from the bone marrow trying to release more white cells. Usually, this will show up in the counts soon thereafter. Go Quinn!!!!
Thursday, March 8, 2012
Day +17
Yeah!!! It is now Day 17 after transplant !!! So happy we have made it that far!
Today we have made a few strides in a good way. Quinns ANC count was 163 and his white cells took a leaping jump. He had the music teacher by and the school teacher also to see him. The read books and worked on homework. He really enjoys working with them!
Tonight, Quinn was able to keep about 1/2 of a roast beef and gravy sandwich down and 2 bites of potatoes and gravy. Earlier in the day he had a package of peanut butter and crackers and some strawberry jello. I am trying to encourage him to eat so that we can get him off of the TPN or at least reduce the amount before going home and explained the cons of it as well. He told me he would "try his best"!
Several of his meds have now been switched from IV form to pill form. He is doing great with them! So, in a few more days we will try another med. Exciting stuff!
Quinn has had a relatively good day all the way around! I am happy for him. And there is "NO FEVER" tonight!!!!!! Yeah, our first night without a fever! The engraphment rash is trying to improve as well. He did have a "growing pain" in in left leg and foot tonight and had to take some pain meds for it. Finally, he is starting to feel better. Poor Little Quinnie!
All and all a good day - just hoping for a higher ANC again tomorrow and the CMV/HHV6 virus to go away and play in the rain and lose their way home!
Today we have made a few strides in a good way. Quinns ANC count was 163 and his white cells took a leaping jump. He had the music teacher by and the school teacher also to see him. The read books and worked on homework. He really enjoys working with them!
Tonight, Quinn was able to keep about 1/2 of a roast beef and gravy sandwich down and 2 bites of potatoes and gravy. Earlier in the day he had a package of peanut butter and crackers and some strawberry jello. I am trying to encourage him to eat so that we can get him off of the TPN or at least reduce the amount before going home and explained the cons of it as well. He told me he would "try his best"!
Several of his meds have now been switched from IV form to pill form. He is doing great with them! So, in a few more days we will try another med. Exciting stuff!
Quinn has had a relatively good day all the way around! I am happy for him. And there is "NO FEVER" tonight!!!!!! Yeah, our first night without a fever! The engraphment rash is trying to improve as well. He did have a "growing pain" in in left leg and foot tonight and had to take some pain meds for it. Finally, he is starting to feel better. Poor Little Quinnie!
All and all a good day - just hoping for a higher ANC again tomorrow and the CMV/HHV6 virus to go away and play in the rain and lose their way home!
Wednesday, March 7, 2012
Day +16
First off a Happy Birthday to my Triplet Nieces - Ava, Sophia and Bella who are 9 today and I love you very much!! They all want to work in the Veterinary business one day so I hope that they received alot of doe rae me today! And also to my sweet Jessie Ray who is 22 today. Shoot, I remember very well the day these babies were born and now look at them. Almost half grown and grown!!!! Man, I am old!
This morning started like all other mornings except I woke with major hot flashes and couldnt seem to get cooled down at all! The young sweet nurse was laughing at me! Just wait sweetie ... you will find out one dayand you wont be laughing! :)
After our morning routine and everyone and his brother coming in to see us ... the doctors, the nurses, the house keeper, the morning shower and other requirements ... finally it was noontime and I felt whipped already. It wasnt until then that I was actually able to get in the shower. However, I did have a cup of coffee or two which was helpful. The mornings are crazy around here sometimes and can feel a little frustrated at times. The nurses come on staff at 7 and do a 12 hour shift. It takes alot of planning on their parts for the day to keep the medicines scheduled timely and running around the clock on Quinn. Right now there are alot. However, we were able to get rid of an antiobotic and give him oral meds in its place on another med soon ... a good thing! Right now, there are lines upon lines upon lines running off of his Hickman! It takes a velcro wrap to keep them all together. Then when someone comes in to add something else it takes more managing to put it all back orderly. That is my frustration to work with!
Quinn had a good morning and was very social again. He crashed around noon and slept until 2:30 or so today. Good that his body is actually resting. There was no fever today at all until 8:30 pm which was very short lived. I am happy to see that change. He enjoyed being lazy in bed the rest of the day. And I am not joking about the lazy part. We have been talking about him trying to keep his strength up and do things for himself without assistance unless he actually needs me to help. So, he learned a few short cuts ...... and I will leave it at that!! Not a happy Momma! The TV and DS are actually a good entertainment piece at times for him but other times they are a negative. Today I suspensed the DS for a while to let him know that it is serious business to be able to take care of his personal needs. Maybe this sounds harsh to some ..... but believe me he seems to look like a picture of health except for the shiny head. He needs to be able to maintain himself and keep strength up to get the heck out of this hospital. The hands and fingers from the DS will be fine!
So, while Quinn was sleeping today the doctor came in to see me this afternoon. Ok, so something is going on I am sure. Since the transplant they dont stop as much in the afternooon. Well, they found another virus that was trying to reactivate itself from a child. The HHV6 which is the Rosiolla virus. This hits most kiddos between 6*18 months. And am certain that it wasnt treated since he was in China at the time. They found 12,500 copies in his body. A little higher number than I would have liked to have heard. This virus would have been a threat to the engraphment process and have caused it to fail if they had not of caught it in time. So, he had another medication added back again for this. Actually, the one that they just took him off of several days ago. He had a 5 day course with it for the CMV Virus. From what I understand the dosage wasnt high enough to kill the HHV6 and that is why it showed up again. This time he will be on it for at least a month depending on how his counts look. He will be sent home on this and I will be administering this along with several other meds and the Hickmans. So, my "Quinn Home Health" job just got me hired again! Unfortunately, we will be here for about 2 more weeks.
Early this morning he received Platelets and tonight a unit of blood. There must be more repairs in the intestinal tract that have yet to heal. Hopefully, this will happen soon. He actually did well to not need a new unit of blood for a week.
I am hoping for a good nights sleep and higher ANC counts in the morning and a less sassy child tomorrow!
Please continue to pray that the virus' have all been found and that this ANC counts will continue to climb up.
This morning started like all other mornings except I woke with major hot flashes and couldnt seem to get cooled down at all! The young sweet nurse was laughing at me! Just wait sweetie ... you will find out one dayand you wont be laughing! :)
After our morning routine and everyone and his brother coming in to see us ... the doctors, the nurses, the house keeper, the morning shower and other requirements ... finally it was noontime and I felt whipped already. It wasnt until then that I was actually able to get in the shower. However, I did have a cup of coffee or two which was helpful. The mornings are crazy around here sometimes and can feel a little frustrated at times. The nurses come on staff at 7 and do a 12 hour shift. It takes alot of planning on their parts for the day to keep the medicines scheduled timely and running around the clock on Quinn. Right now there are alot. However, we were able to get rid of an antiobotic and give him oral meds in its place on another med soon ... a good thing! Right now, there are lines upon lines upon lines running off of his Hickman! It takes a velcro wrap to keep them all together. Then when someone comes in to add something else it takes more managing to put it all back orderly. That is my frustration to work with!
Quinn had a good morning and was very social again. He crashed around noon and slept until 2:30 or so today. Good that his body is actually resting. There was no fever today at all until 8:30 pm which was very short lived. I am happy to see that change. He enjoyed being lazy in bed the rest of the day. And I am not joking about the lazy part. We have been talking about him trying to keep his strength up and do things for himself without assistance unless he actually needs me to help. So, he learned a few short cuts ...... and I will leave it at that!! Not a happy Momma! The TV and DS are actually a good entertainment piece at times for him but other times they are a negative. Today I suspensed the DS for a while to let him know that it is serious business to be able to take care of his personal needs. Maybe this sounds harsh to some ..... but believe me he seems to look like a picture of health except for the shiny head. He needs to be able to maintain himself and keep strength up to get the heck out of this hospital. The hands and fingers from the DS will be fine!
So, while Quinn was sleeping today the doctor came in to see me this afternoon. Ok, so something is going on I am sure. Since the transplant they dont stop as much in the afternooon. Well, they found another virus that was trying to reactivate itself from a child. The HHV6 which is the Rosiolla virus. This hits most kiddos between 6*18 months. And am certain that it wasnt treated since he was in China at the time. They found 12,500 copies in his body. A little higher number than I would have liked to have heard. This virus would have been a threat to the engraphment process and have caused it to fail if they had not of caught it in time. So, he had another medication added back again for this. Actually, the one that they just took him off of several days ago. He had a 5 day course with it for the CMV Virus. From what I understand the dosage wasnt high enough to kill the HHV6 and that is why it showed up again. This time he will be on it for at least a month depending on how his counts look. He will be sent home on this and I will be administering this along with several other meds and the Hickmans. So, my "Quinn Home Health" job just got me hired again! Unfortunately, we will be here for about 2 more weeks.
Early this morning he received Platelets and tonight a unit of blood. There must be more repairs in the intestinal tract that have yet to heal. Hopefully, this will happen soon. He actually did well to not need a new unit of blood for a week.
I am hoping for a good nights sleep and higher ANC counts in the morning and a less sassy child tomorrow!
Please continue to pray that the virus' have all been found and that this ANC counts will continue to climb up.
Tuesday, March 6, 2012
Day +15
Today Quinn's ANC came in at 129. His Hemaglobin stayed about the same as everything else did. He did however, spike a fever later in the evening but went away quickly. This means, that we are unable to leave the room and are in isolation again. He is feeling a little stir crazy just like me.
Quinn had a few good hours today and sat up for a while and was very social. He did however, sleep until 2pm. It seemed like he was stronger today than he had been. Some little changes are a good thing. Once his social wore off he became grumpy bear to his Momma and became sassssyyyyyy! He later admitted that he was tired of being in this room and was ready to go home. We had a talk about that as well as his behavior. Things seem to be going rather well and are in hopes that we will be able to go home soon.
The engraphment rash continues but is fading the same as his fevers. Once he reaches an ANC of 500 for 3 days he will be considered full engraphed and the white cells should really begin to start munching away at those things that arent cleaned up and take over. They still have alot to learn yet but are catching on. Platelets are still a part of our life and will continue to be for several more months when his new platelets come in. Hopefully "Mother Platelet" will spit out some nice ones and release them with the "Protein" and undamaged! His own platelets did not function as they did not have the Protein covering on them which cause them to stick together to form a clot. He is still receiving units of blood as the counts go down or are necessary. It has been close to a week and his Hemaglobin is still holding strong at 7.8. Hopefully, the mucocitis in his gut is healing and will lessen the use of blood. The mucocitis in his mouth and throat seem to be clearing and from tests it appears that his abdominal area is better as well. He is not complaining about it any longer. So, that is a great thing!
Quinn discovered Chevy Chase and is in love with his movies. Luckily, he have several of them that he can watch and of course there is always Net Flix too. Just when I think we have all bases covered and shared everything with him, one will creap up. Shame on me for missing Chevy Chase!
Good night all! Hopefully, tomorrow will bring us a nice ANC for breakfast!!
Quinn had a few good hours today and sat up for a while and was very social. He did however, sleep until 2pm. It seemed like he was stronger today than he had been. Some little changes are a good thing. Once his social wore off he became grumpy bear to his Momma and became sassssyyyyyy! He later admitted that he was tired of being in this room and was ready to go home. We had a talk about that as well as his behavior. Things seem to be going rather well and are in hopes that we will be able to go home soon.
The engraphment rash continues but is fading the same as his fevers. Once he reaches an ANC of 500 for 3 days he will be considered full engraphed and the white cells should really begin to start munching away at those things that arent cleaned up and take over. They still have alot to learn yet but are catching on. Platelets are still a part of our life and will continue to be for several more months when his new platelets come in. Hopefully "Mother Platelet" will spit out some nice ones and release them with the "Protein" and undamaged! His own platelets did not function as they did not have the Protein covering on them which cause them to stick together to form a clot. He is still receiving units of blood as the counts go down or are necessary. It has been close to a week and his Hemaglobin is still holding strong at 7.8. Hopefully, the mucocitis in his gut is healing and will lessen the use of blood. The mucocitis in his mouth and throat seem to be clearing and from tests it appears that his abdominal area is better as well. He is not complaining about it any longer. So, that is a great thing!
Quinn discovered Chevy Chase and is in love with his movies. Luckily, he have several of them that he can watch and of course there is always Net Flix too. Just when I think we have all bases covered and shared everything with him, one will creap up. Shame on me for missing Chevy Chase!
Good night all! Hopefully, tomorrow will bring us a nice ANC for breakfast!!
Monday, March 5, 2012
Day #14
Quinn is still asleep in "MY BED"! He came over and woke me up about midnite saying he couldnt sleep and wanted to know if it was ok for him to laydown. Of course, no problem. Little did I know he was going to take the whole bed for himself .... so, I slept in his hospital bed and was up and down all night. Glad that isnt my bed!!!!
This morning they brought my sheet in with his counts on it. His ANC count is now down to 70. Sometimes, these numbers bouce around alot because the little "White Cell Warrior" isnt sure what it is supposed to be attacking and goes back to hide. Normally, until the counts reach about 500 they are still pretty nieve and will cause the numbers to go back and forth several times. No worries.
Also one of the docs was in early this morning so I asked him about when he would expect Quinn to go home. He said that all numbers, etc looked great and as soon as he could get his ANC (which is made up of white counts) up to 500 for 3 consecutive days he could probably go home. He said that would happen pretty fast. The biggest hurdle now is the Platelet Dependency. Currently, he is having to get platelets every other day. The fever just knocks then down. So, hopefully as soon as he can get over some of the side effects of engrafting we can be on our merry way out the door!!!! Nothing would surprise me .... he is such a trooper! His sisters will be super happy also! And I know that his kitty's will be super excited to see him too!
I will have to think of something creative for a "White Cell/Engraphment Party" since there should be as few people in the home as possible ..... Hummmmm .... Let me think on that one for a while.
So, for today hopefully it will remain quiet some his body having a good time"Engraphing"!
This morning they brought my sheet in with his counts on it. His ANC count is now down to 70. Sometimes, these numbers bouce around alot because the little "White Cell Warrior" isnt sure what it is supposed to be attacking and goes back to hide. Normally, until the counts reach about 500 they are still pretty nieve and will cause the numbers to go back and forth several times. No worries.
Also one of the docs was in early this morning so I asked him about when he would expect Quinn to go home. He said that all numbers, etc looked great and as soon as he could get his ANC (which is made up of white counts) up to 500 for 3 consecutive days he could probably go home. He said that would happen pretty fast. The biggest hurdle now is the Platelet Dependency. Currently, he is having to get platelets every other day. The fever just knocks then down. So, hopefully as soon as he can get over some of the side effects of engrafting we can be on our merry way out the door!!!! Nothing would surprise me .... he is such a trooper! His sisters will be super happy also! And I know that his kitty's will be super excited to see him too!
I will have to think of something creative for a "White Cell/Engraphment Party" since there should be as few people in the home as possible ..... Hummmmm .... Let me think on that one for a while.
So, for today hopefully it will remain quiet some his body having a good time"Engraphing"!
Sunday, March 4, 2012
Day + 13 Praise The Lord!!!
Yes it is true ... I am praising the good Lord this morning. WE HAVE A WHITE COUNT OF 125 !!!!! I had to wonder last night if today could be the day. We have had 0.10 then 0.11 and lastnight it was 0.14. Just a slight increase..... but an increase at that. Wow!!! I was wondering when all of this was going to happen! May wearing my "Life Is Good" shirts has brought me luck after all. I was just trying to sych myself up and keep the faith.
Make no mistake, even though I have a super trooper son who has barrelled through all of the chemo and hurdles that have been thrown at him. He has had a fever since 2/20 (transplant day), mucocitis from the mouth to the bottom, a really red rash, swelling (he has gain 7.5 lbs since coming in), then there is the multiple units of platelets and RBC. Unfortunately, this is not over yet. He has to get more white cells in so that they can clean up his body. In many cases the counts will double or triple each time. Just depends on the "mother of white cells" in the marrow. There will be many doctor appts once we leave here up to a year. We can deal with that as long as we arent admitted again!!!
All in all, this is fabulous news and am looking so forward to having my family back together again and no more crying kids when I leave. Best of all is that Quinn should be cured of Glanzmanns' and can live life like a normal child!!!!!!!
Make no mistake, even though I have a super trooper son who has barrelled through all of the chemo and hurdles that have been thrown at him. He has had a fever since 2/20 (transplant day), mucocitis from the mouth to the bottom, a really red rash, swelling (he has gain 7.5 lbs since coming in), then there is the multiple units of platelets and RBC. Unfortunately, this is not over yet. He has to get more white cells in so that they can clean up his body. In many cases the counts will double or triple each time. Just depends on the "mother of white cells" in the marrow. There will be many doctor appts once we leave here up to a year. We can deal with that as long as we arent admitted again!!!
All in all, this is fabulous news and am looking so forward to having my family back together again and no more crying kids when I leave. Best of all is that Quinn should be cured of Glanzmanns' and can live life like a normal child!!!!!!!
Saturday, March 3, 2012
Day +12 No News Yet
Ahhhhhh ... am wondering if I am ever gonna hear any news of engraphment!!!! I am starting to worry a bit. Which is no surprise. When I returned this morning and bathed Quinn I could see that the rash was more that what he had had yesterday.
They also started him on a new med and found that as a child he had the CMV virus but the numbers were very low on it. They said that if the numbers were higher his transplant would have rejected. It is hard to know what he did or didnt have as a child. I have few records from 3.5 up until the time we got him at 7
Dad left to go fishing and the kiddos stayed with me and are watching a movie! Just chillin and enjoying company. Quinn really looks forward to them coming.
They also started him on a new med and found that as a child he had the CMV virus but the numbers were very low on it. They said that if the numbers were higher his transplant would have rejected. It is hard to know what he did or didnt have as a child. I have few records from 3.5 up until the time we got him at 7
Dad left to go fishing and the kiddos stayed with me and are watching a movie! Just chillin and enjoying company. Quinn really looks forward to them coming.
Friday, March 2, 2012
Day +11
Aunt Aron had college games in Kansas City today. She is the Head Softball Coach at the college she teaches at. What a great fit for her. Her number was retired so that tells you how good she is. Very proud of my sister. She came up to visit Quinn early this morning and visit with me. Was nice and refreshing to see family.
Tonight Owen brought the girls up and I went home with them to sleep in my own bed for a change. We stopped for some KFC and then home to eat dinner in bed. All my kitty cats surrounded me escept for my little Siamese Mia. She let me hold her for a while and ran off. I think she is upset with me for "teasing her" with coming and going.
Dad stayed the night with Quinn
Tonight Owen brought the girls up and I went home with them to sleep in my own bed for a change. We stopped for some KFC and then home to eat dinner in bed. All my kitty cats surrounded me escept for my little Siamese Mia. She let me hold her for a while and ran off. I think she is upset with me for "teasing her" with coming and going.
Dad stayed the night with Quinn
Thursday, March 1, 2012
Day +9 Happy Birthday Uncle Chad
Today Bags of Fun came into Quinns room with a backpack filled with goodies! He got a portable DVD player, and all kinds of fun games and toys. Wow, what an unexpected surprise! So very thoughtful!
The girls and I treated ourselves to lunch at Red Lobster! Wonderful treat! Hospital has good food but unfortunately wears on a person after a while and you grow tired of it.
Today Quinn's rash is greater and he continues with the fever and high blood pressure. He is now officially on high blood pressure meds. They are telling me it is due to the meds he is on. It doesnt usually start going down until evening for whatever reason.
Quinn and I took a few hour nap this afternoon and seemed to be much needed. The girls wore me out out along with the errands that I had to run. All and all it was a great day. I think Quinn missed me. He hugged me and wouldnt let go!
The girls and I treated ourselves to lunch at Red Lobster! Wonderful treat! Hospital has good food but unfortunately wears on a person after a while and you grow tired of it.
Today Quinn's rash is greater and he continues with the fever and high blood pressure. He is now officially on high blood pressure meds. They are telling me it is due to the meds he is on. It doesnt usually start going down until evening for whatever reason.
Quinn and I took a few hour nap this afternoon and seemed to be much needed. The girls wore me out out along with the errands that I had to run. All and all it was a great day. I think Quinn missed me. He hugged me and wouldnt let go!
Wednesday, February 29, 2012
Day+8 Mom Escapes
Today Owen came up early to let me go home for the night. First time I have left the hospital! I picked up the girls from school to hear lots of hooting and hollering. We had an early dinner at Applebees with 2 of my friends and then off to shop. Too much TV watching had Quinn finding a few things he wanted. Well, he got his wish list!
Next day I had errands to run and kept the girls out of school because they begged and pleaded with me.
When I got here I noticed that Quinn was breaking out in a rash. Which is one the signs of engraphment. Unfortunately, it hasnt happened yet. The doctor said that he would give him 30+ days before he did a Bone Aspiration and consider another Transplant. We have 2 Umbilical cords. Our first choice was a 5/6 match and the second is a 4/6. The research that I found on the internet from the 1960's of the 3 cases of BMT were sibling donors. The engraphment times were 13 * 14 days on one and 19*20 on the other. So, I sure do hope that this happens soon. I would hate to see my boy go thru all of this again! He has been such a trooper and SO SO strong. Much better than I would have ever done. He is ready to get out of his room. Unfortunately, he cant do that either due to the fever he has. No reasons that they can find. So is assumed that it is part of the engraphment phase. God be with us us here!!! Momma is weak and losing her patience. I am sure you are trying to teach me a valuable lesson. Just waiting to see what it is.
Next day I had errands to run and kept the girls out of school because they begged and pleaded with me.
When I got here I noticed that Quinn was breaking out in a rash. Which is one the signs of engraphment. Unfortunately, it hasnt happened yet. The doctor said that he would give him 30+ days before he did a Bone Aspiration and consider another Transplant. We have 2 Umbilical cords. Our first choice was a 5/6 match and the second is a 4/6. The research that I found on the internet from the 1960's of the 3 cases of BMT were sibling donors. The engraphment times were 13 * 14 days on one and 19*20 on the other. So, I sure do hope that this happens soon. I would hate to see my boy go thru all of this again! He has been such a trooper and SO SO strong. Much better than I would have ever done. He is ready to get out of his room. Unfortunately, he cant do that either due to the fever he has. No reasons that they can find. So is assumed that it is part of the engraphment phase. God be with us us here!!! Momma is weak and losing her patience. I am sure you are trying to teach me a valuable lesson. Just waiting to see what it is.
Friday, February 24, 2012
Day +5
Quinn has had another great day. He has been out of the room most of the day except for this nmorning. He has been in the playroom watching several movies including Harry Potter. Today I was able to go check out some movies for him. I hope he likes my choices. They have 2 areas to our floor. One for the cancer patients and one for the Bone Marrow Transplant patients. So, he isnt able to leave the floor due to bacteria that may be laying somewhere. Our room keeper is Maria and she does such a good job!
This morning we received news that his white count showed up a bit and is at 0.11. Not much of a count bus it is something. The doctor told me not to get too excited because the counts dont usually show up until days 7-9 on cord blood donors. So, if it isnt there tomorrow then I wont be disappointed ... will just be something that is to come!! But, would love to see something.
Today he received a unit of blood. No platelets as his counts were good.
Have a great weekend everyone --- Auntie Lorrie Happy 50th!!!! We will be thinking of you please.
This morning we received news that his white count showed up a bit and is at 0.11. Not much of a count bus it is something. The doctor told me not to get too excited because the counts dont usually show up until days 7-9 on cord blood donors. So, if it isnt there tomorrow then I wont be disappointed ... will just be something that is to come!! But, would love to see something.
Today he received a unit of blood. No platelets as his counts were good.
Have a great weekend everyone --- Auntie Lorrie Happy 50th!!!! We will be thinking of you please.
Day +4
Today Quinn has a great day...he was up and out of the bed many times, played in the playroom and sat in the big chair. Keeping those big muscles of his in good shape.
He doesnt feel like eating alot at this point but has food suppliment connected to his Hickman line.
Today I shaved the remaining pieces of his hair. He gave me the word that he was ready. He looks so adorable!!!!
Things seem to be going along well and I will leave it at that so nothing comes up to bight us in the beind. The docs are pleased with his progress as well.
He doesnt feel like eating alot at this point but has food suppliment connected to his Hickman line.
Today I shaved the remaining pieces of his hair. He gave me the word that he was ready. He looks so adorable!!!!
Things seem to be going along well and I will leave it at that so nothing comes up to bight us in the beind. The docs are pleased with his progress as well.
Thursday, February 23, 2012
Day +3 Nightmare on Elm Street
We have had a rough day. Quinn is doing ok. He is resting alot so that the transplant can be successful. Last night he had a horrible nose bleed - actually 2 of them. Luckily I had my nosebleed bag and was able to help him out. He received a unit of platelets and also a unit of blood. He is taking quite a few medications for the moment, which is not uncommon at all after a transplant. Most recently, they discovered that he had an infection in his blood stream. Which they are successfully treating. So we will remainon the antiobiotics for a total of 10 days just to make sure. Good News is that he hasnt ran a fever since they started the meds. So,it must be the correct meds.
Unfortunately, the doctors that we work with are specialists in the Bone Marrow Transplant area and not so much in the Glanzmanns Thrombasthenia area. Last night we had a "Fellow" on call while Quinn had his nosebleed. That caused alot of turmoil and she had no idea what to do and then tried to think of ways to take care of him. None were successful. And she refused to listen to me. I am not a doctor by any stretch of the means but do know alot about Glanzmann's Thrombasthenia and what works and doesnt work for my son! I felt like I was living on Elm Street or something. I am trying to be patient and wait until the main doctor comes in so that I can speak to him. There will have to be a few ground rules set. I love my son dearly and refuse for him to receive care that isnt acceptable.
It will be another 1 week or so before we will start seeing the new cells creap into his counts. Since they were cells from an umbilical cord, they have to stay inside the bone marrow to grow. This is called "Engraphing". I am anxious for that day to arrive.
Quinn received a new haircut today. After all of the Chemo that he had, he lost the majority of his hair. I had brought my clippers with me just in case. He wanted to keep his longer hair but unfortunately, that didnt work out so well. BTW, he looks adorable and his beautiful almond eyes just stand out!! The ladies will be going crazy over him!
Hoping tomorrow goes much smoother than today! Everyone say prayers and cross your fingers.
Unfortunately, the doctors that we work with are specialists in the Bone Marrow Transplant area and not so much in the Glanzmanns Thrombasthenia area. Last night we had a "Fellow" on call while Quinn had his nosebleed. That caused alot of turmoil and she had no idea what to do and then tried to think of ways to take care of him. None were successful. And she refused to listen to me. I am not a doctor by any stretch of the means but do know alot about Glanzmann's Thrombasthenia and what works and doesnt work for my son! I felt like I was living on Elm Street or something. I am trying to be patient and wait until the main doctor comes in so that I can speak to him. There will have to be a few ground rules set. I love my son dearly and refuse for him to receive care that isnt acceptable.
It will be another 1 week or so before we will start seeing the new cells creap into his counts. Since they were cells from an umbilical cord, they have to stay inside the bone marrow to grow. This is called "Engraphing". I am anxious for that day to arrive.
Quinn received a new haircut today. After all of the Chemo that he had, he lost the majority of his hair. I had brought my clippers with me just in case. He wanted to keep his longer hair but unfortunately, that didnt work out so well. BTW, he looks adorable and his beautiful almond eyes just stand out!! The ladies will be going crazy over him!
Hoping tomorrow goes much smoother than today! Everyone say prayers and cross your fingers.
Wednesday, February 22, 2012
Day +1
Today was a resting period for Quinn. He slept most of the day and evening. We Watched his blood presssure, fever, headache and heart rate closely throughout the night. He seems to be much better today. He got alot more sleep than his mother.
Quinns sisters are anxious to see him but we felt that it was better for him to rest. A few things concerning came back on his labs. But all is ok.
Renner Roadrunners we thank you greatly for all of the words of inspiration and caring that you have shown Quinn! He needs support at this time.
Quinns sisters are anxious to see him but we felt that it was better for him to rest. A few things concerning came back on his labs. But all is ok.
Renner Roadrunners we thank you greatly for all of the words of inspiration and caring that you have shown Quinn! He needs support at this time.
Monday, February 20, 2012
Transplant Day 0
Today was the big day for Quinn - a day he has been waiting for a long time. The big event happened around 12:45 or so. Such a small bag of cells with alot of power in it. I have great pictures of the event. I haveto admit it was both scary and exciting at the same time.
He did not have a reaction to the cells except for a horrible headache. The headache became so much he vomited and couldnt stand. Then the blood pressure shot way up as well as the heart rate. I thougt I felt a fever coming on but went away. About an hour it came on at 102% something. He was given meds to assist with the blood pressure, headache and fever. Quinn has slept since afternoon and still continues to sleep.
I am glad that the day is almost over but will be glad to see tomorrow come!
He did not have a reaction to the cells except for a horrible headache. The headache became so much he vomited and couldnt stand. Then the blood pressure shot way up as well as the heart rate. I thougt I felt a fever coming on but went away. About an hour it came on at 102% something. He was given meds to assist with the blood pressure, headache and fever. Quinn has slept since afternoon and still continues to sleep.
I am glad that the day is almost over but will be glad to see tomorrow come!
Sunday, February 19, 2012
Day #10
Today was a free day. Quinn's sisters came up along with Cousin Kel, Auntie Aron and his Papa and Dad. The kids played in the game room several times shooting hoops and playing game. Too much fun. Quinn was especially excited to show Papa how he could shoot hoops.
Quinn ate well and is excited for tomorrow to arrive.
Quinn ate well and is excited for tomorrow to arrive.
Saturday, February 18, 2012
Day #9
It seems like the time is passing quickly so Quinn says. He finished his chemo this morning at 2am. So,we have had a relatively free day. Alexandra and Alice Jane came up this morning to see him and stayed until later afternoon. The kids got to watch a movie and play in the playroom. It was nice to see them all together. Quinn was certainly excited. Tomorrow is another free day of rest. I believe his sisters will be able to come back tomorrow.
Quinn has developed those nasty sores in his mouth from the chemo. So far, he is tolerating them very well. He is a trooper and not complaining much at all.
Monday is the Bone Marrow Transplant. Actually, it wont be like a surgery at all. They will hang the donors cellls and put them into his body via a central line. The baby cells they tell me are pretty "Stupid" and dont know what to do so they hang out in the marrow until they mature a bit. Then they start c0ming out and his counts will start going up. Hopefully, this will take care of his rare bleeding disorder. So far, he has had a bloody nose and lost a tooth. Nothing major at all. I was so excited that I jumped up and down!
Quinn's Papa and Aunt are coming tomorrowto see him. He has talked about that alot!
Thank you to all that have made comments, Quinn loves them and is so excited toreceive them!
Quinn has developed those nasty sores in his mouth from the chemo. So far, he is tolerating them very well. He is a trooper and not complaining much at all.
Monday is the Bone Marrow Transplant. Actually, it wont be like a surgery at all. They will hang the donors cellls and put them into his body via a central line. The baby cells they tell me are pretty "Stupid" and dont know what to do so they hang out in the marrow until they mature a bit. Then they start c0ming out and his counts will start going up. Hopefully, this will take care of his rare bleeding disorder. So far, he has had a bloody nose and lost a tooth. Nothing major at all. I was so excited that I jumped up and down!
Quinn's Papa and Aunt are coming tomorrowto see him. He has talked about that alot!
Thank you to all that have made comments, Quinn loves them and is so excited toreceive them!
Thursday, February 16, 2012
Day #8
We are almost through all of the Chemo!!! Yeah! Quinn has handled it beautifully. I am so proud of him. Not sure I could be as tough as he has been. Very brave little man!
Today he has slept about 90% of his day. He met with the teacher and did a little homework, took a bath and ate 2 meals and of course was woke up many times by the nurse. But managed to go back to sleep.
I have caught up a few things that I needed to do and went for a few walks inside the hospital. Was nice to see a different part of the hospital for a change.
Monday we are all set for the Bone Marrow Transplant! He is ready to move on and so am I. There is alot to learn yet. I learned glanzmanns and am sure that I can learn this too. Just need some time and info.
Today he has slept about 90% of his day. He met with the teacher and did a little homework, took a bath and ate 2 meals and of course was woke up many times by the nurse. But managed to go back to sleep.
I have caught up a few things that I needed to do and went for a few walks inside the hospital. Was nice to see a different part of the hospital for a change.
Monday we are all set for the Bone Marrow Transplant! He is ready to move on and so am I. There is alot to learn yet. I learned glanzmanns and am sure that I can learn this too. Just need some time and info.
Wednesday, February 15, 2012
Days 6&7
Chemo time seems to be flying fast and Quinn is doing so well on it. He has lost some hair but not enough to notice a difference. He has only been sick 2 days in all. Which is outstanding in my book. Today they doctors feel that he is at the end of of Glanzmans and will be ready for the transplant on Monday. The old Platelets were so weak and work out that it didnt take much for them to go. He has new donor platelets on board. At this time, they have decided not to give him any more platelets unless needed. The good news is that since he has a new system the Antiobodies to the platets is gone!!!! Yes, Gone!!!!! That is great news. Our last chemo day is Saturday. The chemo that he is taking now is specific for Bone Marrow Patients to prepare the body for the transplant. Next week he will have a complete turn from what he has now. He will probably be in alot of pain and on pain pills most of the time. My poor baby!!!! I sure wish i could do this for him. Once he has completed the transplant we will continue to see the doctors for 1 year. At that time the new system should be in tact and all ready to go!!! I can hardly wait! Hopefully, this will be a memory of the past very soon. It is so hard to see your child suffer or go through any of this.
Aunt Tammy came up for a few hours today. I stayed close to the hospital just in case there was a nose bleeding episode. Not quite trusting yet. It will take a while.
Thanks 5th grade class for allowing "The Monkey In My Seat" to join your classroom! You will have so much fun with it. Quinn is sleeping with his everynight and thinking of you all! :)
Monday, February 13, 2012
Day #5
What a cruddy day lot of snow. Quinn opened the day with a massive bloody nose. He is now sleeping finally and the bleeding is slowing up. I have been caring for his bleeds succussfully for several. And these docs are treating it like a minor bleed and wont listen to me. When he bleeds he needs to be medicated and packed immediately. After filling up 2 large bowls they had to check to out to see if I could really do it. Immeciately, I got permission to use my own packing and to pack it right away. My voice was heard this morning. Will see. A bit ticked that the hematologist is now involved again. She has ordered Factor VII for Quinn along with the platelets. That is totally not necessary. The platelets should be all that is needed along with the packing. The hospital charges $60k for a unit of Factor. She is on her last leg with me. Well thismorning I was quite miffed with her. I tried to fire her several months ago and shepromised all this and that .... shemay get fired yet. I guess I am just a xxxxxxx. Don't care!!!!!
The girls and Owen camefor a minutes tonight. As always nice to see them but hate hate hate to see them go!!!! School was out today due to a snow day so they stayed with cousin Kelly and had a ball!
Tomorrow we start a new chemo - Busulfin. Seems like the ATG Rabbit has been very hard on his sleeping pattern. He is sucha trooper and told me tonight "Momma I am sure glad we had this one Marrow Transplant" So he super great attitude which I am forever thankful for.
The girls and Owen camefor a minutes tonight. As always nice to see them but hate hate hate to see them go!!!! School was out today due to a snow day so they stayed with cousin Kelly and had a ball!
Tomorrow we start a new chemo - Busulfin. Seems like the ATG Rabbit has been very hard on his sleeping pattern. He is sucha trooper and told me tonight "Momma I am sure glad we had this one Marrow Transplant" So he super great attitude which I am forever thankful for.
Sunday, February 12, 2012
Day #4
Well,we have made it to day #4 so far. Quinn is such a champ and handling the fever, multiple chemos and sleeplessness along with nausea and vomiting. He just takes it in stride and goes with whatever comes along. Very proud of him! One more day on this hard chemo and we move forward to another. The next chemois known to cause seizures. Not looking forward to that at all.
The girls are having a hard time as well as I. However they are happy to see each other. The girls were up both Friday and Saturday night,
Well, they are calling us for bath to get the bacteria off of him. Fun Fun!
After getting out of the bath, he got sick to his stomach and developed a bloody nose. Luckily, it wasnt too bad. Unfortunately, they will not let me pack his nose or anything. Platelets were ordered stat. So, in the meantime I have an angry boy becuase I cant pack his nose! He told the nurse that this was a really crappy policy to just let him bleed !!!! I couldnt agree more. The chemo will have to be stopped while the platelets are going in. So, it will be a late night finishing up chemo tonight.
The girls are having a hard time as well as I. However they are happy to see each other. The girls were up both Friday and Saturday night,
Well, they are calling us for bath to get the bacteria off of him. Fun Fun!
After getting out of the bath, he got sick to his stomach and developed a bloody nose. Luckily, it wasnt too bad. Unfortunately, they will not let me pack his nose or anything. Platelets were ordered stat. So, in the meantime I have an angry boy becuase I cant pack his nose! He told the nurse that this was a really crappy policy to just let him bleed !!!! I couldnt agree more. The chemo will have to be stopped while the platelets are going in. So, it will be a late night finishing up chemo tonight.
Friday, February 10, 2012
Thursday, February 9, 2012
Day #2
Today a second chemo was added for Quinn. He developed a high fever and developed nause and some vomiting.
Later in the evening, his sisters came to visit him. They miss us terribly. Poor little Alex is having a hard time without her brother. For some little girl who wasnt so sure about having a brother in the beginning ...... Heck, they are like mut and Jeff tied to the hip. I felt so sorry for her,s he stood at the door telling him goodbye and I love you! Tears were about to roller down her sweet little face. Quinn looked at her and said "I Love You Too Alex". Those words for Quinn are hard to come by .... So, it was a true blessing to hear him tell her! He even admitted that he missed her and Janie!
Janie has been busy taking pictures of my kitty cats with her IPOD. I must say, she is quite the photographer. The pictures of a few of them are picture perfect!
Later in the evening, his sisters came to visit him. They miss us terribly. Poor little Alex is having a hard time without her brother. For some little girl who wasnt so sure about having a brother in the beginning ...... Heck, they are like mut and Jeff tied to the hip. I felt so sorry for her,s he stood at the door telling him goodbye and I love you! Tears were about to roller down her sweet little face. Quinn looked at her and said "I Love You Too Alex". Those words for Quinn are hard to come by .... So, it was a true blessing to hear him tell her! He even admitted that he missed her and Janie!
Janie has been busy taking pictures of my kitty cats with her IPOD. I must say, she is quite the photographer. The pictures of a few of them are picture perfect!
Today is the Day!!!!
We made it early this morning to Hem/Onc and were held up due to the Hives from the platelets. So with that, we were late getting to Same Day Surgery to get his Hickman put in. It was 3:15 before we got out of there and then had to get to the room. I had 2 wagon loads of stuff to bring up to the 4th floor. I didnt think I was every gonna get done with that. Quinn mentioned he was hungry. He had 8 orders of tater tots!!!!! and a sprite. Wow!!!!
All went pretty well for the most part. He did have some bleeding after the line was put in but nothing unexpected. His platelet count dropped to 6.1. We are waiting for them to come to the floor to be administered.
My Janie is tore apart and can hardly understand her when she calls because she is crying so hard. Poor Baby! Alex is upset but is able to contain herself. Now, they have me looking like Rudolph the Red Nosed Reindeer.
Tomorrow bright and early at 8am the Chemo begins. It will run in 4 hour incrimentsover 16 hours a day .... everyday until transplant! Poor Baby!
All went pretty well for the most part. He did have some bleeding after the line was put in but nothing unexpected. His platelet count dropped to 6.1. We are waiting for them to come to the floor to be administered.
My Janie is tore apart and can hardly understand her when she calls because she is crying so hard. Poor Baby! Alex is upset but is able to contain herself. Now, they have me looking like Rudolph the Red Nosed Reindeer.
Tomorrow bright and early at 8am the Chemo begins. It will run in 4 hour incrimentsover 16 hours a day .... everyday until transplant! Poor Baby!
Wednesday, February 1, 2012
Almost There!!
Sorry it has been so long since I last posted. It has been busy and we have had alot of bleeding since my last post; along with a couple of visits to the hospital for platelets. He seems to be so much worse over the past few months and the blood runs like water out of his little nose. With that comes a quick drop of the Hemaglobin. Very scary stuff when that happens.
We made it through of our Pre Examinations for the Transplant. He was not happy with the 24 hour Urine Collection test that had to be done since we had to do it twice. Looks like everything is ready to go along with the approval from the Insurance Company. Everything except me that is. I have so many things to get ready before I go.
Both girls are having a very hard time with me leaving them. They have been fighting alot this week. Finally, when I talked to Alex about it she just broke down and then came Janie right behind. They are both a mess about the separation. We had a talk about family and what it means and how this will be so awesome once Quinn is home and feeling better. They were pleased at the thought of a girls day without their brother and how he could go fishing with his Papa and Daddy without Mom being right behind them. Quinn is so excited at the idea of going to Papas farm and then go fishing or whatever it is that Dads, Grandfathers and boys do fun together! Very cute. He also figured out that Papa was off work the day of his transplant and asked him to come up to be with him that day. So, I am hoping that the majority of the bugs are worked out with the girls. Just trying to line up some projects for them and get the electronics lined out where they can actually see us. It will be hard but am hoping that they make it ok. As long as we can talk through this as it comes I think it will be fine.
So, next Thursday is out Admit date. He will get a port and a feeding tube at that time. I am very nervous about the bleeding he may encounter. We will go several hours before the surgery to get Platelets and Factor. Hopefully, this will be enough! Chemotherapy will follow everyday until the transplant on the 20th. From there I hope that it is uphill and the Transplant does not have to be re-done. If his numbers arent coming up enough then they will pull the 2nd Umbilical Cord and Transplant that as well. I am very greatful to the families that donated the cords so that my baby can be given life!
I look forward to calls, texts and email from friends and family. Unfortunately, we ask that there be no visitors other than our household. The flu is so horrible right now I dont want to take a chance at all. He can not have anything brought in from the outside either. So, no flowers and balloons or yummy foods. I know, those things really cheer you up. However, you can email me for Quinn and I will make sure he gets it. I will have my smartphone and computer equipment there with me and will check it frequently. if you dont have my phone# and email address send me a PM and I will send it back across. I know the "September Leaves" will be watching closely but to let you know the email address differs from what you have on the site.
I fell a week and a half ago on my left knee and went for an MRI last night. The swelling is horrible and can barely get a sandle on my foot. Range of Motion stinks and can hardly go up the stairs at all. Waiting to hear from the Doc this afternoon what the outcome is going to be. I sure hope that it is better by the time that we go. There will be so much to bring in by myself and lots of steps to take at the hospital. Childrens Mercy is pretty big.
Fingers Crossed!
We made it through of our Pre Examinations for the Transplant. He was not happy with the 24 hour Urine Collection test that had to be done since we had to do it twice. Looks like everything is ready to go along with the approval from the Insurance Company. Everything except me that is. I have so many things to get ready before I go.
Both girls are having a very hard time with me leaving them. They have been fighting alot this week. Finally, when I talked to Alex about it she just broke down and then came Janie right behind. They are both a mess about the separation. We had a talk about family and what it means and how this will be so awesome once Quinn is home and feeling better. They were pleased at the thought of a girls day without their brother and how he could go fishing with his Papa and Daddy without Mom being right behind them. Quinn is so excited at the idea of going to Papas farm and then go fishing or whatever it is that Dads, Grandfathers and boys do fun together! Very cute. He also figured out that Papa was off work the day of his transplant and asked him to come up to be with him that day. So, I am hoping that the majority of the bugs are worked out with the girls. Just trying to line up some projects for them and get the electronics lined out where they can actually see us. It will be hard but am hoping that they make it ok. As long as we can talk through this as it comes I think it will be fine.
So, next Thursday is out Admit date. He will get a port and a feeding tube at that time. I am very nervous about the bleeding he may encounter. We will go several hours before the surgery to get Platelets and Factor. Hopefully, this will be enough! Chemotherapy will follow everyday until the transplant on the 20th. From there I hope that it is uphill and the Transplant does not have to be re-done. If his numbers arent coming up enough then they will pull the 2nd Umbilical Cord and Transplant that as well. I am very greatful to the families that donated the cords so that my baby can be given life!
I look forward to calls, texts and email from friends and family. Unfortunately, we ask that there be no visitors other than our household. The flu is so horrible right now I dont want to take a chance at all. He can not have anything brought in from the outside either. So, no flowers and balloons or yummy foods. I know, those things really cheer you up. However, you can email me for Quinn and I will make sure he gets it. I will have my smartphone and computer equipment there with me and will check it frequently. if you dont have my phone# and email address send me a PM and I will send it back across. I know the "September Leaves" will be watching closely but to let you know the email address differs from what you have on the site.
I fell a week and a half ago on my left knee and went for an MRI last night. The swelling is horrible and can barely get a sandle on my foot. Range of Motion stinks and can hardly go up the stairs at all. Waiting to hear from the Doc this afternoon what the outcome is going to be. I sure hope that it is better by the time that we go. There will be so much to bring in by myself and lots of steps to take at the hospital. Childrens Mercy is pretty big.
Fingers Crossed!
Friday, January 13, 2012
Waiting!!!
I am not a patient person and really dislike waiting!! I am ready to get this show on the road and moving.
Tuesday I met with the school to come up with a game plan to get Quinn through the 5th grade. As it turns out the hospital offers tutoring services and will work with his school! Awesome News ~
With all of the cold we are trying to stay inside away the weather and sick people. Certainly dont want to hold anything up that is for sure! Plus this old body hates the cold!!! Each year it gets harder on me, especially with RA.
Trying to concentrate on the girls and preparing them for what is to come. It could be days once we get there before I am able to see them! We have never been separated since we went to China for our children and they were babies at that time. Wow! I remember how hard that was all those years ago. My heart break thinking about it. But have to concentrate on Quinn. I worry about Alex. She and Quinn are awfully tight. We call them "the twins" alot. And Janie is so soft hearted and will probably cry every day. However if she can talk her dad into taking her shopping everday and spend money on her she will be happy until the next day! She is my shopping girl and daddy will feel sorry for her and take her!
I am trying to get all of our technology up and in the right direction so that the kids can communicate with each other. It is hard since I am technically challenged. Things change so fast about the time that I think I have one down then a new one comes along. It will be easy for anyone wanting to say "hello" to Quinn or I to comment on the BLOG page, text or email me. If you are in need of those addresses, please let me know. I also bought him an IPOD Touch and believe that he can have Face Time on that as well and can receive emails through there also. It is hard to say if he will feel up to checking them or not. But I can certainly pass along messages to him.
Quinn talks about once we are home and he is feeling good that he would like to have his "China Sisters" (from Calif and TX) come and visit him and how they can all be together again!
Monday we go to the Transplant Clinic to sign paperwork to request the Umbilical Cords officially and sign off on them to get them here. They are being held for us momentarily. The following will be a bust and be super busy with quite a few clinic appointments and physical examinations and our last appointment with the Transplant Docs before the Transplant and Admission date on 2/9.
Quinn will be 11 on 2/6 ~ What a wonderful birthday present! More than I could ever give to him.
Tuesday I met with the school to come up with a game plan to get Quinn through the 5th grade. As it turns out the hospital offers tutoring services and will work with his school! Awesome News ~
With all of the cold we are trying to stay inside away the weather and sick people. Certainly dont want to hold anything up that is for sure! Plus this old body hates the cold!!! Each year it gets harder on me, especially with RA.
Trying to concentrate on the girls and preparing them for what is to come. It could be days once we get there before I am able to see them! We have never been separated since we went to China for our children and they were babies at that time. Wow! I remember how hard that was all those years ago. My heart break thinking about it. But have to concentrate on Quinn. I worry about Alex. She and Quinn are awfully tight. We call them "the twins" alot. And Janie is so soft hearted and will probably cry every day. However if she can talk her dad into taking her shopping everday and spend money on her she will be happy until the next day! She is my shopping girl and daddy will feel sorry for her and take her!
I am trying to get all of our technology up and in the right direction so that the kids can communicate with each other. It is hard since I am technically challenged. Things change so fast about the time that I think I have one down then a new one comes along. It will be easy for anyone wanting to say "hello" to Quinn or I to comment on the BLOG page, text or email me. If you are in need of those addresses, please let me know. I also bought him an IPOD Touch and believe that he can have Face Time on that as well and can receive emails through there also. It is hard to say if he will feel up to checking them or not. But I can certainly pass along messages to him.
Quinn talks about once we are home and he is feeling good that he would like to have his "China Sisters" (from Calif and TX) come and visit him and how they can all be together again!
Monday we go to the Transplant Clinic to sign paperwork to request the Umbilical Cords officially and sign off on them to get them here. They are being held for us momentarily. The following will be a bust and be super busy with quite a few clinic appointments and physical examinations and our last appointment with the Transplant Docs before the Transplant and Admission date on 2/9.
Quinn will be 11 on 2/6 ~ What a wonderful birthday present! More than I could ever give to him.
Tuesday, January 10, 2012
Fabuloso News Today!!!!!!!!!!
Early this morning I received a call from the BMT Center regarding Quinns transplant. He will be admitted on the 9th of February and Transplant on February 20th!!!!!! Yeah!! Unfortunately, it was unable to be set up any earlier due to our doc being out of town. But we are a go and packed with several appointments before that time. He has a series of tests to go thru, special consents to be signed since it will be an umbilical donor. Thank You Mr. Government! And our last appointment is 2/26 with the Physician to go over all test results etc. And then we wait, again!
The live donor did come forward but turned out to not be a match. Thank you for trying "unknown person"! So, we have 2 umbilical cord donors. One will be a backup just in case we have a problem with engraphing or need the cord for other reasons.
Quinn will celebrate his 11th birthday on February 6th! What a birthday present he will receive. Better than anything that I could ever give him.
The live donor did come forward but turned out to not be a match. Thank you for trying "unknown person"! So, we have 2 umbilical cord donors. One will be a backup just in case we have a problem with engraphing or need the cord for other reasons.
Quinn will celebrate his 11th birthday on February 6th! What a birthday present he will receive. Better than anything that I could ever give him.
Saturday, January 7, 2012
What a Rotten Week !!!
On Monday Quinn had a significant bleed and again on Thursday. Finally quit bleeding in the night on Thursday. I knew when he woke that he needed blood so I made the call to get labs done. Unfortunately, it was later in the day when they called me back and advised us to go to the ER to get packed RBC - probably 2 units. His heart rate was 165 from being so low on blood. And the docs and nurses were horrible about dragging their heels. One doc had the nerve to tell me that I didnt know what I was talking about and that I was just there to cause trouble for him!!!!! How dare he! That man wanted to give Quinn Platelets and he wasnt even bleeding! So, the Beulah Bell (my wonderful grandmother who has passed) came out in me!!!!! He called me sour names and all kinds of stuff. Last words for him was he was not allowed in my sons room again and to get our Hematologist on the phone for me now!!! Giving platelets to him when he is not bleeding is totally not necessary and should be reserved for him since he is on the cuff of building antiobodies to the platelets anyway! He even managed to tell me that I had no idea what I was talking about and knew nothing of my sons disease!!!!!! OHHHHHHHH! Every one that I touched base with gave me some sort of business and made me cry even harder! Horrible, because I am not a cryer at all! I felt so rotten that I called my cousin to come and sit with me!
Finally, we were admitted to the floor and given RBC about 6 hours later. It was totally unacceptable for me to see him with a high heart rate and no RBC's being administered. Not good quality of care at all! This will be passed along!
Finally, we were admitted to the floor and given RBC about 6 hours later. It was totally unacceptable for me to see him with a high heart rate and no RBC's being administered. Not good quality of care at all! This will be passed along!
Thursday, January 5, 2012
Some News Today and Some Not So Good
Today the nurse from the Bone Marrow Center called me back. She is so nice and takes time to answer your questions. Yet, she is a busy woman. At this point, this is the news that I know and hope to hear the full scoop on Tuesday morning. Quinn's file is "Actively being worked on".... Hold Please!!!
OM Goodness, Alex just came blasting in the house that Quinn was bleeding from the walk down the street from the bus stop. I honestly, didnt know that I could run that fast. I yelled for her to grab toilet paper since it was the closest and swooped him up quickly. Just finished with another IV and Factor Infusion. Wow, this one is bad also!! Oh Lord, please be with us and allow us to stay at home and not visit Childrens! I have asked so many times of you and have been given the experience as you see fit. At this time, Lord, please do not allow any more platelets for my son until this process is in place. His life is hanging in the bows. Please grant me the strength to protect him and be a good caregiver to him at this time. Thank You!
Ok, so back to the story .... It sounds like the "Live Donor" may have come forward but can not be for sure as their privacy is protected. But was told that all information on the 3 were due back today and Dr. Meyer and her would sit down and review the information. At that time they would choose the best candidate for him. Tuesday morning I am to get a phone call back from her with information and an examination date for Quinn. It sounds like we may be able to set a date for this process to begin. Will cross all fingers and toes that this is what happens. It will take about 4-7 days for an umbilical donation to arrive from the Marrow Center. If we get a "Live Donor" then the marrow will be sent on a commercial airline by courier to guard it and could arrive quicker. Depends on where the contents are coming from world wide.
OM Goodness, Alex just came blasting in the house that Quinn was bleeding from the walk down the street from the bus stop. I honestly, didnt know that I could run that fast. I yelled for her to grab toilet paper since it was the closest and swooped him up quickly. Just finished with another IV and Factor Infusion. Wow, this one is bad also!! Oh Lord, please be with us and allow us to stay at home and not visit Childrens! I have asked so many times of you and have been given the experience as you see fit. At this time, Lord, please do not allow any more platelets for my son until this process is in place. His life is hanging in the bows. Please grant me the strength to protect him and be a good caregiver to him at this time. Thank You!
Ok, so back to the story .... It sounds like the "Live Donor" may have come forward but can not be for sure as their privacy is protected. But was told that all information on the 3 were due back today and Dr. Meyer and her would sit down and review the information. At that time they would choose the best candidate for him. Tuesday morning I am to get a phone call back from her with information and an examination date for Quinn. It sounds like we may be able to set a date for this process to begin. Will cross all fingers and toes that this is what happens. It will take about 4-7 days for an umbilical donation to arrive from the Marrow Center. If we get a "Live Donor" then the marrow will be sent on a commercial airline by courier to guard it and could arrive quicker. Depends on where the contents are coming from world wide.
Monday, January 2, 2012
New Years Eve
We were very excited that Ming and Sue landed in Kansas City Thursday evening to visit. That was all that Quinn asked for before his transplant was to see Ming! They had a wonderful visit with each other and left Sunday afternoon. Ming and Quinn were in the orphanage together for many years. Ming is 15 and Quinn will be 11 in a couple of months. They are so cute together and he listens to her better than he does me! They have quite a special bond with each other. He asked if Ming could come back after his transplant. Of course, I know it will make him feel better to see her!
We Survived the Holidays!
We survived the holidays quietly and the kids had a ball. I fixed a Christmas dinner in the afternoon just for us. The kids played and the house was a wreck!!! All was well
Prior to Christmas we went to my sisters. Mom and Dad was not going to make it. But surprisingly did and Dad met me on the steps! That was the best present I had received! Everyone was suprised to see Quinn also!
The day after Xmas we went to my sister in laws. What a full household that was with lots of kiddos. Especially, it was wonderful to see my Brother In Law in the kitchen cooking his favorite stuff. He himself has had 2 liver transplants. The latest was April 20th of 2011. Amazing how wonderful he looks. Another wonderful Xmas gift to see.
I made a call to the Transplant Unit today to talk to the nurse. Unfortunately she had left for the day. I am seriously hoping for a call tomorrow and an appointment to be set up! Cross your fingers and toes!
Prior to Christmas we went to my sisters. Mom and Dad was not going to make it. But surprisingly did and Dad met me on the steps! That was the best present I had received! Everyone was suprised to see Quinn also!
The day after Xmas we went to my sister in laws. What a full household that was with lots of kiddos. Especially, it was wonderful to see my Brother In Law in the kitchen cooking his favorite stuff. He himself has had 2 liver transplants. The latest was April 20th of 2011. Amazing how wonderful he looks. Another wonderful Xmas gift to see.
Today Quinn started bleeding a bit before noon. It started off slow and turn into a Tsunami very quickly. We both looked like we had been in the battlefield with bows and arrows. What a mess. I had to start an IVon him quickly. He has slowed a little. However, I am very concerned about him having to have platelets. We are done most likely if that happens. I am just hoping that I can get this stopped at home and not make a trip to Childrens Mercy.
I made a call to the Transplant Unit today to talk to the nurse. Unfortunately she had left for the day. I am seriously hoping for a call tomorrow and an appointment to be set up! Cross your fingers and toes!
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