He’s one tough little dude and for those who follow or have read this blog know that I am telling the truth. Tomorrow it will be two weeks since he came home and things are still a little crazy. We have to visit Gastro once a week (for now), had a translant clinic visit yesterday, and OT/PT come to the house to work with Lennon and soon he will also start school…well he will receive a few hours for four weeks (extended school year) before actual school starts in August, and then he will be homebound for one year with the teacher coming to the house.
But how is Lennon doing, you ask?! Well, I think he’s doing good and continues to improve (in some things). His eating is not going so well and while he nibbles on a few things, it isn’t enough to say that the ND tube can come out. Instead, we have chosen and talked with the doctors about going ahead with the gastro-tube for several reasons. 1) His food issues/aversion is going to take a long time ~ say a year or better 2) we constantly worry that the ND tube will come out and we have to see fluro to have it replaced and its taped to his face on the side etc …so its a safety thing .. but a safety thing on more than one level.. the ND or NG tube can damage his nostrils and/or esophagus while the g-tube tends to be a little safer in that regard. The docs are currently getting a plan together, because remember he does have a stent that needs to come out so we are looking at one anesthesia and 2 procedures one overnight at the hospital (cross fingers, toes and knock on wood). This will happen in about 2-3 weeks but the big thing is figuring out where to place it exactly due to his belly still being swollen, the new liver and so forth.
Yes, his belly is still extended but it doesn’t seem to be bothering him. What bothers him is his leg(s) hurting. For now in the morning he watches cartoon and tries to follow people around the house. By the afternoon ~ depending on his activity level during the morning, he has become quite stiff and will complain about his legs hurting. But he continues on ~ with assistance ~ determined to walk through the house and do what he wishes. Discussion with his docs are done as he could be at risk for osteoporosis and osteo-athrities. Lennon has unfortunately never received the “required” amount of calcium and other minerals and vitamins for his bone development. Due to the last 7 month and loss of muscles etc. he may also have a bone density issue…His pediatrician had X-Rays done to see if his bones are ok i.e. no fracture because of his walking a little weird, but we won’t know until next week…say Mon or Tues…
Lennon at home is beautiful, funny and witty .. Lennon in public not so much. Lennon these days is shying away from adults and other kids, even people he knew quite well and played with before the transplant. Becuase he will receive homebound schooling I am going to have to try and find ways for him to be sociable but currently in public he only responds to animals with a whisper. I try not to dwell on this so much, keeping in mind what he has been through but it does have me little worried.
Overall I am (we all) are just very happy that he’s home. Now we live in a different kind of stress ~ but I think I prefer this over the alternative…wouldn’t you agree?