Last night dh came to the hospital to switch places with me for the evening, since we learned that Yirmiyahu will need to be here longer than I anticipated when I came on Sunday morning. (I thought he would be released the day I came or a day later and only came with the clothes I was wearing.) He stayed here while I went home to shower and bring back some clean clothes and toiletries.
I didn’t think I would bring my laptop because I don’t like having to worry about the theft risk, and I also enjoy the quiet time to spend with Yirmiyahu and then to rest without any competing agendas. Hospitals really aren’t the best place to catch up on a serious sleep deficiency, but I’m trying to take the opportunities I have here and there between staff coming in and out all day and all night. But at the same time, I enjoy being able to post and connect with others and I’d like to start preparing for the seder and Pesach in general…so the laptop is here but I hope to be cautious about how much I use it.
I was only gone for three days at the hospital but that was after being home just three days after returning from the US. I really missed the kids and it was nice to spend time with them again. While I was home today, I took ds3 and ds5 shopping for Pesach groceries with me – this is a three way win-win: they enjoy going shopping with me, so they’re happy. I’m happy because I get to spend time with them and I can do something that needs to be done at the same time. And the older kids are happy because then the kids who need the most active maintenance and oversight aren’t around, so they don’t need to watch them and can spend time getting things done that they want to do.
As far as Yirmiyahu, we are hopeful that we’ll be able to come home on Sunday or Monday afternoon, just in time for Pesach! My oldest three kids who are home (ds19, dd16, ds14) are working together to get things ready for Pesach, with dd12 and ds10 helping out. I’m lucky to have such amazing kids and I feel incredibly lucky that this situation coincided with school vacation, which has made everything much easier for us all.
A bonus of this hospital experience is that I’m able to take care of some medical checkups that were due around now – I missed several appointments last week because of the trip to the US. As part of his blood workup in the intensive care unit, they tested for the hematology issues and happily there’s no trace of leukemia. He had a heart echo done a couple of days ago, something that I would have had to do after Pesach; usually there’s a six month follow up recommendation with this but because an issue with his lungs as part of this bigger issue he came in with has caused extra pressure on his heart, we need to check it again in a month. But it looks fine right now. Another of last week’s missed appointments was an ultrasound for his kidneys and bladder, and yesterday we had that taken care of as well.
After the ultrasound I spoke to the nephrologist (kidney doctor) yesterday – she is amazing, very caring and extremely competent and professional. In the pediatric intensive care unit, no one really told me what was going on and I didn’t push it because I wasn’t able to talk to the doctors one on one, and having a sensitive conversation as part of a group of three to ten staff members wasn’t comfortable for me. I got most of my information by listening in on the rounds when they discussed Yirmiyahu’s situation with the incoming staff at each shift change. This was the first time that I was able to directly get detailed information.
When I learned that the main concern right now is a serious urinary tract infection, I was afraid that was another side effect of him getting so dehydrated. But she said that it was caused by the kidney/bladder issue that we’ve been tracking since he was born. So we’re lucky that it showed up now when we can take care of everything at one time and in one place. Staying here longer is better than having had to come back another time! I took him for the last ultrasound for this on erev Sukkos, and was told there was no sign of a problem. When I took the results to the pediatrician, she told me that wasn’t reassuring since something structural wrong at birth and it didn’t disappear. She said that many ultrasound technicians aren’t experienced with such small infants and because of that they probably missed the issue. But she said it wasn’t urgent and I could wait another six months to check it again, which is why I had made an appointment for last week.
The ultrasound results have showed the small malformation is still there, and the nephrologist felt we should bring in a urologist to consult with in case surgery is indicated. I met with the urologist yesterday as well (I didn’t expect to be so busy at the hospital!), who will be doing a procedure tomorrow to track some things. This procedure will determine if he needs surgery to correct this or not. If he does need the surgery, we won’t have to take care of that for another month, so there will be a breather before having to come back to the hospital.
Yirmiyahu is still weak and his little arms and legs have bruises all over from all the blood tests but is otherwise doing great! I don’t have a camera here but when I get home hope to get a picture with a smile for all of you to enjoy after you’ve shared in the scary stuff we’ve gone through with him.