Breakdown

I need to get caught up on the events of this past week. So I'll take it day by day and hope I don't forget anything. 

Sunday, October 5--

Dru hadn't been acting like herself. She slept in til 11:30 and I was constantly going in to feel if she was breathing. She woke up for about an hour then took another 3 hour nap. She threw up around 3:30 so we turned off her pump to give her a break. 

Monday, October 6--

Dru is still pretty lethargic. Our home health nurse came to draw blood for labs and all her vitals looked fine. Right after the nurse left, Dru threw up so I took her off the pump for about an hour. 

She went down for a nap at noon and I had to wake her up at 3:30 to take her brother to baseball. As soon as I walked in I knew she had thrown up. It scares me that it was so much and it didn't wake her up. I was a bit of a basketcase as she slept that night. I kept running in to make sure she was breathing and not laying in throw up. 

Tuesday, October 7--

Our liver clinic called to discuss her labs which weren't terrible (yet) and I told them my concerns. We made an appt for Wednesday. 

Wednesday, October 8--

We had our appointment at the new outpatient building (which is beautiful by the way). We had labs done first, then went up to talk to Dr. Jensen. He asked us how things were going. Bill said that he can just see that Dru is tired of fighting. 

I sat in my chair looking at her in my lap and just cried. 

I've never done that before at an appointment. Dr. Jensen just handed me a box of tissues and said he thinks we are getting as far as we can with keeping her at home.

 He thought another infusion of albumin would help and we could have it done at the hospital or we could have home health come do it. 

We opted to do it at home and keep her out of the hospital til absolutely necessary. 

And then her lab results came up. 

Her kidney numbers were very high. Her kidneys had shut down and she was extremely dehydrated. 

We were admitted immediately and she was given fluids and medicines to jump start her kidney function. We wouldn't know if it was working til the next day. The word "dialysis"was being thrown around--not cool. 

Thursday,October 9--

Her kidney numbers were about the same. The attending doctor said that they are hoping they would plateau and then start trending down. So Dru was on the same medicine regime all day and night. 

Our schedules have been turned upside down. 

I stay with Dru and sleep at the hospital. Bill spends the night with the boys and gets them off to school. After finding somewhere for B after kindergarten, he spends the afternoon with his girls at the hospital. 

I know it breaks his heart to leave her here. 

Friday, October 10--

This morning her labs look better. Her numbers have been reduced by half!!! 

I'm getting hopeful they'll send us home. 

Dr. Book comes to talk to me about what the team is discussing. 

I ask her if we get to go home. She doesn't answer like I expect. 

She says " you know, it's not unusual for babies that are this high on the waiting list to be here until transplant"

I can't decide if this relieves me or not. I miss being home after only 2 days, but I also feel some peace knowing she's being monitored so well. 

Anyways, her belly is still quite large so our team wants to do another tap to see if the fluid in her belly is infected and could be causing her kidney problem. 

Before we schedule the tap they send us to ultrasound. Turns out there is not a lot of ascites, but her bowels are huge and full of fluid. There is a concern that her digestive system is slowing down and may stop working altogether. 

The first plan of attack is to put her back on NG tube feeds at a low volume (she had been on 24 hour TPN since being admitted). 

Saturday, October 11--

The tube feeds are not working. She just throws them up. So now they are adding miralax to her feeds to see if things will start moving. 

Today is pretty quiet at the hospital. Dru is pretty tired so we spend most of our day just snuggling, waiting for dad to come see us.

 And he is sweet enough to stay the night so I can spend time with the boys and sleep in my bed!!

Sunday, October 12--

Bill says he and Dru slept really well. And she pulled her NG tube out--that's the third time!!! They had also given her Benadryl to help with her itchiness. 

The boys and I are heading up this afternoon for some much needed family time. 

That is the hardest part for me--my heart is in two places. I miss whichever part I'm not with. So much it aches.