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!
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