A bit of a more difficult biopsy this time

So I know I updated everyone on Ben's biopsy on Facebook and that all the relevant parts went well. He had no rejection. His arteries looked great and all that. But, I didn't get to all the other parts. We all know we got there at 6:30 am. Which in and of itself was tiring. Ben did not get to eat until after the biopsy. So, I didn't eat breakfast until they took him back at around 7:45 because I didn't want him to see me eating of course. Biopsy went well. No issues there. Dr. Gossett came out to talk to me and everything was fine. It did take Ben a little longer to wake up from the anesthesia this time. But, no one really thought that was a problem since he had had versed before, then the anesthesia, and they gave him fentanyl to ward off any pain from the procedure.

Well, everything was going fine. I went to get lunch at about noon. The nurse sat with him while I got my lunch and when I came back she said she was going to get some tylenol because he was complaining about pain in his leg. Ok, no problem. We were still on track to leave around 3 or 3:30 after his 6 hours of lying flat and then a chest x-ray. Well, just as we were getting ready to be discharged at 3 and go down to x-ray, Ben starts screaming that his leg hurts and he can't walk. The nurse looked concerned and asked him where it hurt. Now, Dr. Thrush had *just* been in and examined Ben and everything was fine. Not 20 minutes before this. So, the nurse took his temp and vitals. Well, his temp was 102.1. So that earned us an extended stay in the PACU. :/ Dr Thrush had to come back down to examine him again and called him a troublemaker ;) They checked his vitals around every 30 minutes and his heart rate was quite elevated (in the 140's) for a long time. Until his fever came down, basically. And he refused to walk until around 7. We even had to wheel hims down on his bed to x-ray. I decided to order him food around 6:15 since I had no idea how long we would be there, and the cafeteria closes at 7:30.

Basically, they agreed that the anesthesia was probably the cause of the fever. But, we still couldn't go unless it came down. We were allowed to go if he *just* had pain. IF I wanted to. If I didn't want to or didn't feel comfortable managing the pain at home, they could admit him for observation to the CICU. But, I kind of felt like, if it was going to just be tylenol every 4 hours and vitals checks, I could do that at home. If it was anything more, then, yeah, we could admit him. So, the fellow that came down later, around 7 said that she was fine with us leaving since his fever had come down and stayed normal. As long as he would try to walk. So we we did a couple of walks up and down the hall and he was ok. We FINALLY got discharged at 8:45 pm. It was such a long day! Joe nicely offered to take the girls to school the next morning, but I had to be there for their sock hop anyways because if I wasn't there, then Ben wouldn't be able to go. So, up again at 6:45 after getting home at 10:15. But, it's all ok now, because he is fine. Rejection level 0. Coronaries are great. And everything is good!

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.