Hospital Stay 1 - Day 3

January 14, 2016 - Day 3

The morning started very early. Blood work needed to be done at 4am so that they could get the platelet count back before his MRI which was scheduled for 7:30. If his platelet count was too low they would put off the MRI until plasma could be administered. Due to Levi's age he had to be sedated for the MRI so no food or liquid after midnight. Once again they didn't want to touch his IV for blood work. This nurse chose to get the blood with a heel stick. He hasn't had one of those since he was an infant, so it was interesting to see how he reacted to it. It definitely ticked him off. But they were able to get the 1cc of blood that they needed fairly quickly and Levi rolled over and went back to sleep, so that was nice.

Good Morning!

At 7:20 they came and got us for the MRI. We were able to walk Levi to pain free and were sitting and entertaining him, getting paper work signed and such. Things were moving slower then I anticipated so that was weird. Then we found out why: There had been a scheduling error and Levi's time slot for the MRI was gone. UGH. We were moved to 9:50. Not such a huge deal, but Levi still couldn't eat or drink and was now wide awake, he was definitely angry. We did find out that his platelet count was at 73!! Yay for WAY better numbers.

We went back to the room to wait. Grammie and Grampa came over from the hotel to help with distractions, and we all survived the two hours, but it definitely wasn't fun.

At 9:45 we went back to Pain Free and things moved right along this time. We changed him into a johnny and hospital pants even though he was wearing cotton PJ's so that the MRI technician wouldn't have a problem. Then it was time for him to be sedated. Was the weirdest thing I've ever watched as a parent. He cuddled right up to me as they put the meds into his IV, and suddenly he just got limp against me. We laid him down on the table, gave him a hug and a kiss and left. Now came the waiting part. My parents took us down to the cafe for a late breakfast and to kill some time. But I was definitely watching the clock. They said it would be about 90 minutes. In the end it ended up being almost 2 hours before we were paged back to pain free, and those last 30 minutes were definitely nerve wrenching and constantly staring at the clock and the pager (the same thing you get while waiting for a table at a restaurant).

MRI Time.

We got into Pain Free to pick him up and he was still asleep. They asked us to let him wake up on his own, and said that he had definitely had a rough time with the sedation. His cold was still going strong, and he hadn't been able to cough while sedated so the had to suction out his nose and throat a lot. I felt so bad for him. Once he woke up, we picked him up and snuggled with him, but boy was he ANGRY!! He was just screaming and screaming. We finally got him calmed down enough and they let us take him back to his room. Once he was there he settled down some and fully woke up and the sedation meds wore off, and then he was hungry. Once again, Grammie and Grampa to the rescue. They had gone to Dunkin Donuts on the way over and there were 2 donuts with sprinkles on them!! Levi licked them both and picked all the sprinkles off. He was having a grand ole time.

Waking up from the MRI.

Dr. V came in while Levi was eating his second donut (well frosting and sprinkles) and told us that the MRI had been reviewed and that Levi has had no mini strokes to date! That his MRI is clear and everything looked good. Oh what a relief. This was a fear of ours. When Levi is in the middle of an episode he gets very wobbly on his feet and zig zag walks, and we were worried that something neurological was going on, but it wasn't!! :) yay!!

Donuts are the BEST!

Then it was time for Levi's third plasma infusion. A positive of being sedated for the MRI, was that they were able to move his IV line, from him left foot to his right forearm. So not only could he walk, but he also had full use of his arms. He was definitely very happy about this. :) The third infusion went off with no problems. No fever this time. He slept through part of it and was awake and watched a movie for part of it.

Plasma time.

After his issues with sedation for the MRI we assumed that surgery was off the table for any time soon. While Levi was napping Dr. V came in and talked to us and said that surgery was on for Friday. He and the surgeon had discussed the options and determined that it was the right thing to do. With a head cold/respiratory infection like Levi's your airways can be restricted for up to 6 weeks after you get over it, so if we were going to put off surgery for that then we should wait 6 weeks, and Dr. V doesn't want that, he wants the port put in, so the surgeon agreed that we can go forward with surgery as planned for tomorrow. At this point we have no time set for the surgery.

After nap and infusion Levi is having a grand ole time zooming around the room and is getting into lots of mischief but is also having lots of fun. The rest of the night is spent playing and eating dinner. We attempt to get him to eat a lot as we know he can't have food or drink after midnight again but he doesn't really want food. We end up resorting to a popsicle and some icecream, at least he ate something.

Running Around. 

Popsicle for dinner.

Night Night all. Tomorrow is going to be a long day.