Well, it was bound to happen sooner or later. Yesterday morning Norah was admitted the hospital after having a fever and being incredibly irritable and unable to sleep for over 24 hours. We had a regular scheduled appointment on Wednesday with our transplant team but didn’t make it since we were instructed to go straight to the ER. Normally in babies there isn’t a major concern with fevers unless it’s consistently over 102 for her age group, but because she is at risk for several kinds of infections (cholangitis from her Kasai procedure and sepsis or a blood line infection from her Broviac site) they are very cautious about any sign of trouble and fever of 100.4 or higher.

Tuesday when we drove to LA Norah only got a few 30 minute naps before she would wake up and cry, though typically on these trips she sleeps like a champ and makes the drive relatively easy. The good news is, she was willing to take several ounces from a bottle while in the car, but the bad news is that feeding her and changing her still didn’t make her happy and we knew she was uncomfortable in some way. That night Jason and I were losing our minds because she barely slept at all, crying hysterically each time she woke up. We did everything we could think of to get her to sleep and finally just after 3am, Jason took a shift of taking her to the car so that I could sleep for an hour or so and then at 6ish we switched at I took her while he tried to get a little rest. To say it was a miserable night is putting it mildly! Around 7am I took her temperature at it was 100.2, and so I decided nurse her, then check her an hour later to see if her temperature would change one way or the other. Around 8am her temperature had shot up to 101.3 and I started making phone calls and leaving messages for both her doctor in Vegas, Dr. Baron and also her nurse coordinator at UCLA, Greg. About 30 minutes later I got phone calls from both Greg and Dr. Baron’s assistant instructing us to go to the ER immediately.

Fast forward to today and we are still here in the hospital waiting to see if any of Norah’s blood cultures grow any bacteria within 48 hours of admission and to see if another fever occurs. She has also been given several rounds of IV of antibiotics as a precaution, and we have to stay at least 24 hours to make sure nothing funky happens off of IV antibiotics so they can feel comfortable sending us home on oral antibiotics. The doctor thought there is a good chance we could be home on Sunday, so fingers crossed!

In the meantime, I think we finally found a medication that actually works to dampen the itchy skin that is a result of Norah’s high bilirubin levels. It’s blood-red and makes her “output” turn orange, but we will take it for less itching, irritability, more smiles and more sleep! In fact, after her first dose yesterday, Norah was able to go about 6 hours between feedings and only needed her pacifier and a back rub to get back to sleep a couple of times during that stretch. Thankfully I was also able to get some sleep, which I desperately needed. Jason stayed at the hotel and was able to sleep well also, so all 3 of us felt much this morning and throughout today. We shall see how well this new medication works in the long-term, but we are happy so far with the results!

Now we are just hoping all her blood work and temperature readings continue to look good so that we don’t have to buy more clothes and camp out in the hospital past Sunday!

***Side note: The doctors, nurses, and hospital in general have all been impressive to say the least! If we have to spend a month here for Norah’s transplant it won’t be so bad!!