Ben's biopsy and anniversary

On December 11th, Ben had his annual biopsy. Ben and I stayed overnight at the Ronald McDonald house Wednesday night to Friday morning because we had to be at Lurie at 6:45 for labs before his biopsy, and then we also had his NICU follow up on Friday, which also happened to be the 3 year anniversary of when all of his heart issues started. Wednesday evening consisted of doing everything I could to fill up Ben's belly without making him vomit ;) He was not allowed to eat after midnight and could only have clear liquids up until 6:30 am.

Eating his dinner

Having his first snack-chips and hummus

Last snack-ice cream

Of course, when I woke him at 5:45 to get him dressed, and eat some jello, he went right back to sleep, negating any time for jello. We got to the lab area, and of course, they were not open until 7. And were not at all prepared to do his labs, even though someone had told us to show up at 6:45 the day before. So, we went back up to the pre-op area and they said they would take us back and do his labs right away. Which I was skeptical about, but went along with. Right away, turned out to be 7:45, which is not horrible, but his labs are supposed to be drawn before 7 because of a timed med that he has to get at 7 am. Consequently, when we got his prograf levels back, they were 3.2. They are supposed to be in the range of 6-8. Which was really worrisome. Now, 45 minutes late on the blood draw couldn't account for it being that much off though, so they did raise his prograf to 3.6 and we are doing a redraw next week. We also were placed in isolation due to Ben having had a questionable MRSA when he was pre-transplant. Apparently this never goes away until he does a series of 3 tests. So he also had one of those done at the hospital and will have one done next week and one at the pedi so we can hopefully get the isolation precautions lifted when we go there next time. Around 8:15, Ben started getting really antsy, and started saying how HUNGRY he was ;) So, they gave him his sleepy medicine around 8:30, and he started calming down. And getting a little loopy. When Joe called, he told him, "Daddy, they STICKED me!" about the phlebotomist. :)

A little sleepy here 

He went back around 8:45, and the procedure took a little over an hour. They told us everything went really well. All of his pressures looked good, the arteries looked good. The next day they called and said the biopsy results were 1a, which is not a 0, but still really good and they weren't going to do anything about it. But, obviously still wanted that follow up on the prograf level. Also, the x-ray looked good. No cardiac changes and no pneumonia. Ben fell asleep really early that night. Around 8:30. But, not before putting Winnie the pooh to bed first (they gave him Pooh in order to calm him down that morning when he was getting fussy about having to stay flat on his back after the procedure.) 

Put Winnie the pooh to bed too

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Fell right to sleep

12/12/14-This was the 3 year anniversary of the day all of Ben's heart issues started. And we had his NICU developmental clinic today. I love that on this day, the day that was one of the worst days 3 years ago, I had a psychologist and a speech therapist and doctor telling me just how wonderfully he is doing. The speech therapist said his speech is very typical of a 3-year-old's. She didn't see anything to worry about. We should work on his L's, because he substitutes Y for L, where most kids his age would substitute W. But it is not something to be concerned about. And cognitively, he is doing very well too. He is even doing stuff that is more advanced than some of his peers in some areas. Gross motor skills stll need some work, obviously. But, even the PT said, "well, his skills have always been slower. He is just working on Benjamin time. He will get there, it will just be on his own time." She is also going to help us try to get Aetna to pay for his services. Hopefully they will, because he definitely needs it! She did see him climbing all over the tables and standing on chairs, so he does have some skills that are right on target ;) We are very happy with how well he did the last two days. So, we also bought him a little lego set at the lego store. He also got a couple of little toys from The RMH, and from Santa and Lurie. So, he had lots to play with the last few days.

Looking out the window before the Dr came in

Showing off how he can climb on a chair