Hospital Stay 1 - Day 2

January 13, 2016 - Day 2

We woke up in the morning fairly late, Levi actually slept in. The nurse said that she would need to do a vitals check every 4 hours. So we were expecting her at 12, 4, and 8, but she didn't show until after 8:30. We were able to sleep through the night so that was nice.

The first struggle of the morning was to get his Levothyroxin for his thyroid. The nurses didn't understand the need for him to have that first thing in the morning as he has to wait an hour to eat after. They said it was scheduled to come up from the pharmacy at 9:30. We put our foot down on that one, and thankfully it came up around 8:45. We distracted him until breakfast.

The nurse then needed to get blood for a CBC to see what the plasma had done yesterday. We assumed this would be easy. They would just draw out of his IV and then flush it, but we quickly learned this wasn't going to be the case. The nurses were so scared of losing his IV that they wouldn't even touch it. So he was poked in the arm. Thankfully she got the vein fairly easily and the blood draw was quick.

Playing with Daddy before he left. 

We decided that today would be a good day for Jay to go home and get a few things and to work for a few hours. So we settled in for a long Mommy and Levi day.

Snack and Cuddle with Mommy.

The doctor came up a little later in the morning and said that Levi's platelet count had gone up to 20. An increase, but not a great one. The plan was to wait and see how his body would do on his own. and do another CBC at dinner time. We settled in for a long day.

Waiting and Seeing involved some playing.

The IV in his foot was really frustrating Levi, so we requested to have it moved. The doctors agreed so they sent up the IV team. They tried his arm and weren't able to get it. :( The IV team asked if any staff from the NICU could come over and try as they are more skilled in tiny veins. A little while later a NICU team came over and attempted in his hand, but they also weren't able to make it work. At this point Levi had had enough, and I said "no more" we will just leave it in his foot and deal with the fact that he can't walk.

Thanks Aunt Martha, Uncle Chris, Makayla, Kennedy, and Kyle! I love the balloon!!

Levi and I were playing and relexaing, watching more Christmas Monkey, and waiting for Grammie and Grampa to come for a visit, when the doctors came back in. Change of plans. They had talked to the specialist in Switzerland. Wait and see was not an option. He needs plasma every day until his numbers are back up. They have already ordered plasma number 2 from the blood bank just waiting for it to come up.

While waiting for the plasma Levi fell asleep. The nurses were amazing and were able to start the plasma without waking him up. At the 15 minute check Levi had spiked a fever. The plasma was immediately stopped until a doctor could come in. The doctor ordered the plasma to be restarted but at a slower infusion level, he wanted Levi to be given tylenol for the fever and to be more closely monitored. We were told that fevers are a common side effect. The body is fighting off the foreign blood and that if there is anything in it that his body doesn't like it can spike a fever. It is normal, needs to be watched, but is not alarming. We were also told that it all depends on the blood and the donor on if he will get a fever or not. So sometimes he will and sometimes he wont. Oh boy, more things to think about.

A nap while he got plasma. 

Dr. V came in while Levi was napping and him and I were able to have a long talk without any interruptions. At this point we are unsure what the future will be for Levi. He is hoping that we will be able to do infusions every 3 weeks and keep him healthy, but those will need to be done at the CHaD so we have to think about that. We also have begun discussing having a port put into his chest to help with IV's and blood draws. And Dr. V is ordering an MRI for tomorrow to see if there have been any brain issues. We also talked about getting a visiting nurse out to the house to take Levi's blood draws. And lastly he is also looking into using HCF or Factor 8 instead of plasma as these are able to be administered by a visiting nurse at home, however would be twice per week instead of every three weeks. However this is an off standard use for those drugs, so he will need to work with our insurance. We were told that Factor 8 costs insurance half a million to a million dollars a year, so if insurance doesn't cover it, that's just not an option for us. (Unless I win the powerball!:) )
Grammie and Grampa arrived!! And Levi woke up! He finally ate lunch (at around 4pm) and boy was he hungry. We talked, played, colored, and cuddled while his plasma finished. They had slowed it down to take approximately 4.5 hours, so was a long afternoon.

The hospital takes there toddler food very seriously. His hot dog was cut up before being put int he bun and brought to us.

The evening went off without a hitch, well except for a sippy cup to the eye, but ya know it happens! We all hung out until bed time. Then Grammie and Grampa headed over to the hotel, and the three of us settled down in our comfy beds again.

Tomorrow is MRI day, so will be an early morning. The nurse says that she needs to draw blood for a CBC at 4am to make sure the MRI can happen. So good night for now!