Before IV albumin and lasix on 9/11.

So we got out of the hospital last on 9/2 and were so so happy to be home. Norah seemed to be tolerating the TPN well, and was even happier, even more energetic than usual. We felt good about the extra vitamins and nutrients that her body was getting. But as I said before, the ascites is the price we pay for proper nutrition. I noticed that her belly continued to appear more and more distended over the next week, so we called our gastroenterologist and got in for a more emergent follow-up appointment. When talking with him, he also noted how big her belly seemed… again. Then he looked at us and said, “So when do you guys want to go in to the hospital?” He suggested to do it over the weekend since he was on service till Monday.

**Side note: On Friday we found out that our PELD score went down slightly to a 20 down from 21 in August, 22 in July, and 20 when we had first went on the list on 7/7. The main reason why our score dropped was that her bilirubin levels went down to 19.5, she grew, her INR was better, but luckily her albumin level was quite low.**

So yesterday we were admitted to the hospital at 11 in the morning. The plan was to do 3 rounds of IV albumin, then IV lasix and be out by the next late morning/early afternoon after a 1 night stay. The doctor suggested that we bring our home meds and TPN so we didn’t have to wait for pharmacy and we could start everything right away and get out in less than 24 hours. Well as usual, nothing is ever easy. The pharmacy decided that they were not comfortable with us using home medications because they couldn’t be certain that they were mixed correctly since an outside pharmacy mixed or filled them. Soooooo… we did the first round of albumin and lasix right after we got there around noon (which took 2 hours to administer), but then had to wait till 9 for the next round of albumin, which the pharmacy again decided was not safe enough to administer simultaneously with her TPN, which they don’t mix until 9pm anyway. Long story short, we did albumin and lasix but didn’t get the TPN started until about 11pm.

Now Norah was scheduled for 3 total rounds of albumin and lasix, so we were scheduled for the last round at 5am. The kicker was, because they wouldn’t let us run TPN at the same time, we had to do a 2 hour taper down to avoid low blood sugar, then do the albumin over 2 hours, then IV lasix and restart the TPN. If we had done the full bag of TPN, it would have taken us until 4 or 5 in the evening just to finish the bag.

Thankfully this morning the doctor found out about the hiccups with the pharmacy dictating things, and decided that Norah would be fine if we cut her TPN early and then just restarted later tonight. So she was finally taken off TPN around 3pm, and we were discharged around 4:30 this afternoon. So it wasn’t a 24 hour stay like we had hoped, but it was only 1 night, so we are thankful to be home all together tonight, sleeping in our own beds, with our Stella (who is acting incredibly unloved and neglected). And the other good news is, Norah’s belly is 2.5cm smaller than it was on Tuesday. She lost about a 1/2 lb of fluid and seems much more comfortable. Her breathing isn’t as labored, she wants to sit up more, she wanted to stand a little today, she tolerated a little tummy time, she hasn’t thrown up since yesterday morning, and she was very happy today! So overall, for one night’s worth of a hospital stay (which she was actually very well-behaved and even slept in the crib – not having to cosleep with me) it was worth her comfort and well-being. The question is, how often are we going to have to do this type of hospital admission just to keep her ascites under control? I will be so glad when she gets her new liver and her belly will STAY small!

For now, we are just thankful to be home, to be together, and to be doing well. Thanks again for all your thoughts, concern, prayers, and support!

https://www.youcaring.com/norah-booth-409688

Finally getting some good rest after her first round of albumin and lasix. She loves side sleeping and having a blanket to hold onto or touch while she’s sleeping.