Made it 2 years

It's been 2 years with no admissions. Quite a record I guess. We were hoping for much longer. But, what can you do? Yesterday we took Ben to the pediatrician because he had really bad stomach pain and a fever. It wasn't as bad while we were there. But he also wouldn't pee in a cup. The dr asked us to go to Lurie to get an ultrasound. I asked if we were just going to get an ultrasound if we could do it at CDH. To which she said that was fine and called ahead for us. I mean, we would much rather be at CDH or Edward for any outpatient stuff. So, I headed over to CDH with Ben. On the way, he started screaming that his stomach hurt. Like screaming so much that I thought his appendix may have burst. Tylenol was not doing anything for the pain at all. So, they gave him morphine in the Er. That helped a little bit. But not a ton. They did some x-rays and labs. His labs looked pretty good, though he looked dehydrated and also his sugars were rather low. His x-rays though, those showed a ton of air all in his colon as well as throughout his stomach. The doctor came in and said that we needed to be admitted to Lurie. I asked her why we couldn't be admitted to CDH and she said that the doctors at Lurie were fine with it, but the doctors at CDH were not fine with taking a post heart transplant child. So, Joe came and switched places with me and he went in the ambulance with Ben and I went home with the girls.

Joe reported that last night Ben was rather cranky, but today he has been feeling better and they want to just keep him one more day for observation because of his lab work. They would like his labs to look a little better before he goes home. His glucose kept bouncing all over and his sodium bicarb levels were low as well. But, he is acting much more like himself. I got to see Ben for a little bit today due to a wonderful friend taking care of the girls for a few hours while I went down to Lurie. Ben was in great spirits and proceeded to tell me many stories about all the shows he watched and what he had eaten that day.

He did keep telling me he wanted to go home, which I wish I could have taken him home with me. But, hopefully tomorrow morning he will be busting out of there.

4 years post transplant

4 years. Happy heartaversary Ben! Ben has had a lot happen in the last few months. In October he had a second set of ear tubes put in due to frequent ear infections. We had been hoping to wait until his biopsy, which is next week. But, we just couldn't wait that long. He was having back to back ear infections that would come back about a week after he stopped antibiotics, either oral or in his ears.

HE also had a follow up with his ENT and an audiology exam which showed that his ears are doing great! 

Then, we had hematology in early December. The hematologist decided that he could go off iron at that time. She said that his iron stores were not terrible and he would probably be able to maintain them with diet. He is not classically anemic, so we are doing a trial without oral iron and will have labs drawn next Wednesday to see how he does. ON Wednesday he also has an appointment with his Kidney team. He follows up with Kidney every 6 months. At this appointment they will most likely do an ultrasound and also labs (at the same time as his hematology. Not 2 separate labs.) This is to make sure his chronic kidney disease is staying at stage 1, not getting worse. Prograf can affect the kidneys and he already had kidney disease due to heart failure as an infant. So, we have to follow up every 6 months. This is also why we can never use motrin/ibuprofen.

We also have his biopsy on Thursday. We are of course hoping for no rejection and good looking arteries! :) It's always a worry that he could be looking great right now, but be in rejection and not showing it. He has been experiencing some leg pain, which is most likely just growing pains, but any normal things worry me because I worry that any typical things can mean rejection or any other organ transplant related things. 

But, here we are now, 4 years! 4 years with his heart! We would not be here if it was not for his organ donor! I do think of his organ donor's family and what they must be feeling and/or thinking. Their child might be 4 or 5 years old by now and it must be very hard to think of how they would be doing at Christmas, Thanksgiving, birthdays, etc. But, maybe they think of the child that their child saved and also wonder how Ben is doing? Maybe they are sad and also proud that their child could save a life? I don't know. All I, and Joe can do is write our yearly letter and tell them how forever grateful we are for their gift of life for our child. We see him grow every day and doing so many things that may not have been possible had he not gotten his gift. Even if he had gotten better and put on meds for cardiomyopathy, he would have had a limited life. But, now, he is able to do many things we never thought he would be able to do, such as karate (the instructor knows he had a transplant, and there is not contact), running around, playing soccer with his sister, etc. His physical therapist has even decreased his PT sessions from once a month to every 6-8 weeks, because he is getting so much stronger. We are so proud of him. And he has his NICU follow up in May to see how he has developed otherwise. He will be discharged from NICU follow up at that appointment.