Biopsy day!

Kind of crabby, getting hungry.

Getting weighed

Today was Ben's biopsy. We tried to get to bed early last night in preparation for getting up at 4:30. Of course, I still wanted to feed him at 2:30, just to try to get him to still have a full belly. We left here at about 5:15 am and got to the hospital at 6:15. We were supposed to be there at 6:30 in preparation for a 7:30 surgery time. Well, Ben did not actually get back until 8 am. They did the whole preparation during that time. Weighing him (he's back to 20 lbs 12 oz!) and asking us all the normal questions about eating, sleeping, development, etc. He did pretty well with the whole not eating after midnight and no liquids after 4. He was actually in pretty good spirits until about 7:30. Then he started to get really tired and hungry at the same time. Luckily they got him shortly after that. He was actually smiling as they drove his bed away. It took a little over an hour for the whole procedure.

Playing on the firetruck

We had the girls with us this time, so we went down to eat some breakfast with them. They were a little antsy. They enjoyed playing with the firetruck and they had brought their book bags with and filled them with coloring books, barbie dolls and other little toys. There was also a play area in the waiting room and one of the volunteers was sitting there doing crafts with the kids. The girls did not want to leave when it was time to go to Ben's room!

I went back to his recovery room to see him. I went back first so I could nurse him. Oh man was he mad! They had his legs strapped down using 2 blankets. Ben was NOT appreciative of that! He kept screaming and trying to turn over and get out. They also had tiny little knee braces on him so that he would keep his legs straighter. He was unhappy with all of this and just wanted to get down. The nurses helped me arrange the pillows so that he could lay flat still and nurse. We then went up to the regular room he would stay in. Instead of a crib they got him a regular sized bed so I could lay next to him. He also got some juice and crackers to eat. He really liked the crackers and kept shoving them in to his mouth. Even with me slowing him down, he ate a little too quickly and ended up throwing up, during his echo. So, then they wanted him to not eat for a little bit. He was not pleased with that. But, he was so exhausted (especially after the nurse gave him a sponge bath and changed his sheets), he quickly fell asleep, and slept for over 2 hours!

Eating his crackers

While he was sleeping, the cardiology doctors both came in to talk to us and examine him. We had already heard from the surgeon that everything had gone well. His arteries looked great, his pressures were good, and there was no indication of any rejection. They have to wait for the tests to come back to officially say that he has not rejected. And we will wait until Monday to determine if he will go up on his prograf (immunosuppressant), or stay the same. But, it is looking like most likely it will stay the same. Because he gained weight, he is going up on his cellcept (another immunosuppressant).  He was in a pretty good range for prograf, even with them drawing his blood at around 8. His meds are usually due at about 6:30. That is all the good news. The not so great news was, his hemoglobin levels were really low. They like a kid his age to be at about 12 or 13. He was at 8. So, he has anemia. We have to call hematology on Monday to follow up with them. We are not sure what they will do yet. The cardiologist said she wants us to see them to see if we can discover a reason for his anemia. It is possible it's caused by his medicines. But, she said usually they would see it a little low, but not as low as he has been, and not for as chronically as he has been. He has been really low ever since about 3 mths post transplant. We also mentioned that he has chronic diarrhea. This may be just due to his bactrim, which he got to go off of today! Another yay! Or it could be due to magnesium, though he is on his smallest dose ever. Or it could be norovirus. So many things that it could be. And lucky us, we get to get a stool sample from him. Fun times people. I tell you, I lead a glamorous life ;) They also want us to follow up with gastroenterology for that. Add in the kidney team that is also following him, and we now have 4 teams to consult with. Hopefully, we won't have to deal with kidney very long, and maybe GI will say it's nothing more than the magnesium or the bactrim. It's just all kind of overwhelming to have so many teams following him now. We are most likely going to go down to every 4 months for cardiology visits, with some blood work in there in between. But, even though we will probably only see cardiology every 4 mths, it looks like we will still be at Lurie around the same amount of time, or more often. :/

Waiting for his x-ray

So, after the cardiologists went through all of that with us, they let us know his discharge instructions. Basically, no baths for 3 or so days. Try to keep him calm. He can crawl around, but no crawling up the stairs. Keep the incision site clean. Yeah, that one is fun to do with a kid that has diarrhea :/ Call with any fevers or severe pain. Then when we were done, fed him and dressed him, we had to go down to the 4th floor really quick for a chest x-ray. Then we got to leave. At almost 5 pm. It was a long ride home, but luckily the kids all slept for most of it. Or maybe unluckily. I am pretty sure they will now be up all night, since they slept until a little after 7 pm. It's 9:30 right now, and they're wide awake! We got them McDonalds because they were really very good for being at the hospital for almost 12 hours! They didn't really get crazy very much and they saved the running around for when we were in the kids areas. They also were very good to Ben. Abby helped feed him crackers and Klara was trying to tell him it would all be ok, when he was screaming. :)

So, now we call GI and Hematology on Monday, wait for the results of the biopsy (though we're not too worried about that based on the surgeons assessment) and wait on his prograf level and take his stool sample to CDH. Luckily we don't need to bring it back to Lurie! Then we will go from there. Keeping my fingers crossed that these are all easy appointments, and not going to be permanent teams we have to deal with!