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!!!!