We went home on Sunday afternoon around 2:30 in the afternoon. It was really great to be home. It was a long night with very little sleep. Between getting up every 3 hours to nurse her, give her the feeds through the tube, and pumping (a total of 90 minutes every time) and not being able to fall asleep because I was constantly listening for Lucy to wake up, it was a long night.
On Monday morning, we went to the local clinic to have Lucy's blood drawn. Of course, the clinic did not have the lab slip, so it took a little time. Unfortunately, they had to poke Lucy twice so she ended up with matching pink bandages on her arms. Daddy also made sure that Lucy got a sticker. (I will post pictures later.) Kris then spent a couple hours at the hospital pharmacy trying to get Lucy's prescriptions filled. There was issues with her insurance and then it turned out that insurance didn't even cover her prescriptions.
We all then went to the pediatrician. This was just the standard follow up after being discharged from the hospital. After the pediatrician, we went back to the pharmacy to finish the prescription fiasco.
Around 5PM, we got a call from the Nephrology nurse. Lucy's potassium from that morning had come back at 6.0. The doctors wanted to redraw it to confirm, but by that point, all the outpatient labs were closed, so we had to go to the Emergency Department. As we were packing up our things to go back to the hospital, Lucy pulled out her NG tube. We keep warning her that if she pulls it out, we were going to put it back down, so that is what we did. We arrived at the ED around ED at 7PM. They did and EKG on Lucy which was fine, and redrew her blood. The potassium was 5.9. Because the potassium was right on the border, the doctors gave us the option of being admitted that night or rechecking the potassium in the morning. Kris and I didn't want to get stuck bouncing back and forth, so we decided to just stay at the hospital.
We didn't get admitted back to the NICU, but rather they put us on a general pediatric floor. (It's the same floor where my patients are admitted when they get diagnosed with diabetes, so I know a lot of the staff up here.) On this floor, there are 2 patients per room, but we were fortunate to get a room by ourselves. It was nearly 3AM by the time were able to go to bed.
Since our admission we have been watching Lucy's potassium levels. Every time we get close to being discharged, the potassium level spikes back up. The doctors have been increasing both her sodium chloride and sodium bicarbonate levels. They also gave her an IV bolus and one dose of Lasix. Lasix is a medication that makes you pee. And Lucy did pee. When I got up to change her diaper in the middle of the night, she had soaked the diaper and all the bedding under her. She was swimming her own pee!
That same day, Lucy's white blood count came back high, and she was acting very tired and lethargic. Because there was a concern that she might have an infection, the doctors decided to work her up to rule out an infection. Lucy had another lumbar puncture (she had one soon after birth), blood cultures drawn, and urine collected. The nurse put a urine collection bag on Lucy but with the Lasix, she peed so much that the bag fell off. In order to give her IV antibiotics, she got another IV placed in her forehead. Also with that blood draw, she hit the limit of blood they are allowed to take from an infant in 24 hours. Needless to say, it was a rough night.
Lucy's potassium levels have been good for the last few days. If that continues, and once we get the cultures back and do the antibiotics, we will go home again. We were only home for 29 hours the first time, so our goal will to be at home for longer than that.
Lucy is still working on breastfeeding, so we are using her NG tube. (She is starting to wake and is due for a feeding, so I am going to wrap this up.)
Although we have a lot going on, we are celebrating that Lucy has been with us for 4 weeks. She will be one month old on Sunday. She is gaining weight appropriately, still has her gorgeous hair, and is the cutest baby in the hospital. I love watching her hands and face.
We appreciate all that everyone has done for us and for the prayers that we know are being said for Lucy.
No comments:
Post a Comment