Dylan (03.01.2011) "I fart more now because I have Daddy's liver" -Dylan age 5
Three weeks ago I could not have imagined being where we are now. Yesterday was a clinic day for Dylan. We are still currently on a twice weekly schedule. Every Monday and Thursday we have labs drawn first thing in the morning with clinic in the afternoon. The phlebotomist has been having a very hard time getting blood from Dylan lately. His veins have been beat up the last few weeks and have had no time to recover. We have resorted to using hand veins but I think our time is limited with them. Once we go to a weekly schedule everything will have more time to recover in between draws. This should make getting a sample much easier.
All of the draws are necessary at this point; a necessary evil. The doctors are closly monitoring his numbers making sure his liver is as happy as it should be. Dylan did not have bad labs prior to transplant. The limited amount "healthy" tissue mixed in with all the cirrhotic tissue gave us good lab values despite the liver being riddled with disease. There is something to be said about seeing the labs all dropping into normal ranges now and knowing that the liver inside my little boy is healthy. I can honestly say that I was never at ease seeing his labs before. I always knew that even though they we normal that his disease was far worse than what was being represented. The true test for me now is too look at my son and SEE how healthy he is. His eyes are bright white and no longer sunken into his head. His skin is soft and he no longer has the broken blood vessels on his cheeks. The big one for me...I can't see his swollen spleen anymore! All of this and his labs, with the exception of a few, were normal yesterday. The labs are dropping and dropping really fast. If everything continues to go smoothly we should be home sooner than we expected.
When we started this process we were told that we would need to stay locally for a minimum of six to eight weeks. This was to ensure that if there was any issue or some type of emergency that we would be minutes from the hospital and immediate care. I don't want to jinx our current situation but we have had a relatively smooth road. Dylan has had his issues with side effects of medications (night sweats, diarrhea, and shaky hands) but all in all it has been manageable. Maybe it is that our life prior to transplant was harder that I thought. At clinic yesterday we were told Dylan could return to school as soon as the steroid he is taking is discontinued. We have already dropped the dosage on this medication twice now. We are in the process of weaning him off. This means that in a matter of a couple weeks Dylan could be going back to school.
School used to be an area of great anxiety and concern for me. This was even more so after his GI bleed in October last year. There was a constant worry that another bleed could happen while he was there and away from me. To be able to send him to school and not fear anything terrible will happen will be wonderful. We are doing a bunch of school work here while Dylan recovers. Trying to make sure he stays up to speed with the other kids in his class. Dylan speaks of school everyday. He talks about his friends like he saw them yesterday. He reminds me that I am not his teacher, I let him know I am more like a substitute teacher. We will also be enrolling Dylan in a Kinder academy that is ran by his teacher. This is a five week summer program that I hope will help him to be at the same level with his peers for the beginning of first grade. Noah and I want to ensure that he stays with the friends he has already made throughout his school years.
On a lighter note we had the pleasure of meeting a fellow liver family. For the past five years I have been actively involved in an internet forum called Liver Families. Most people would read the information on this site and say it is depressing. For me, it is my saving grace. It was a place I can go and seek refuge with people who truly understand what we go through because they live it too. I have never met another liver family in person, but I know each of these kids as if they were mine. At any moment I can tell you what phase in the disease the children are at and how they are doing. I grieve with the families and celebrate with them too. We are one big family spread all over the world brought together for one reason, liver disease in children. Yesterday I met Luca and his parents. What a beautiful little boy. I am a bit bias when it comes to liver babies, but he was beautiful. Luca was recently transplanted in early December. Our paths crossed then but we didn't know it yet. There was an appointment that was canceled for us due to an emergency transplant the night before...that transplant was Luca. I am hoping we can meet up again and spend a little more time together. It was so special to meet them.
Noah has been dealing with some type of infection. He is on antibiotics, but the doctors feel it may be viral. His poor body just can't fight things while it is trying to repair his liver. He is run down and stressed. I know he wants to return to work but I fear if he does too soon he will only set himself back further. Again, Noah is not grasping the severity of what was done to him. He needs to be focused on healing and feeling better, not work and other areas of stress for him. My husband is a strong man. I have realized that more each day while we go through this. He has had a lot of pain to deal with and his recovery has been slower than Dylan's but he would do it again tomorrow if we needed to. It speaks volumes as to what kind of a person he is. I am so fortunate to be married to him. I think all in all we are moving in the right direction. The future is bright for us, I can feel it. I look forward to a year from now when we are looking back at this time as just a memory of what happened and Dylan is stronger than ever.
I want to add that Toast restaurant in Novato, Ca is running a dine and donate today for Dylan. Twenty percent of all proceeds will be donated to Dylan's transplant fund. We appreciate the wonderful support we have received from the community. A big thank you to Shahram Bijan, the owner, and our friends Nicole and Mike Garcia (the amazing Chef) who made this possible.
-Amber
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