In the middle of the night, Jesse needed to go #1. As I was getting her up, I noticed that her left nephrostomy tube was tinged red. Mike and I called the nurse. She called the doctor, and he requested a urinary analysis. He mentioned that the tube could have shifted in the kidney. Or Jesse could have a blood clot in there. Either way it sounded like he felt the tube needed to come out.
We all went back to sleep. By 8am, Christine was begging to go eat. Jesse woke up asking for hot chocolate (and on the day the machine was broken… then looked fixed but still sounded funny.) After breakfast, we waited around to meet with the doctors.
The radiologist nurse was the first to stop by. They had obviously talked about removing the nephrostomy bags. In their place, they will put stents in her ureters. I had many questions because of our dealings with a urologist two years ago. I asked her if we’d have to replace them every 6 months. Would she have to live with them forever? What risks to her?
Right now the stents will be placed on Thursday. The nurse said this needed to be done because the bags are only supposed to be a temporary fix.
The nurse was honest that we needed to ask the nephrologist. But we do need to take the tubes out. I do agree that the stents would be better than the tubes because we wouldn’t have to worry with the bags. Or the tape on her back that has torn it up.
As the nurse was leaving, the infectious disease fellow returned. She looked at Jesse and felt the swelling was less in her knee and thigh, but she warned this might change when the neutrophil return.
She left, and was followed by the fellow and attending doctor. They felt that her swelling looked the same.
After they left, the infectious disease doctor came in and said the same thing the fellow said. But he did say she’ll have another MRI after her ANC returns to check for abscesses. This will lead to potential surgery.
When they left, I suggested that Chris and I go check out the Ronald McDonald House after Jesse got her IL-2 and GM-CSF shots.
It is not far at all the RMH (Ronald McDonald House). And it is really, really, really impressive inside. We have a room on the 2nd floor that is bigger than this hospital room (although that wouldn’t really take much… it’s about 150 square feet if that). I think once Jesse gets better, she’ll really enjoy it. They have playgrounds and lots of toys.
Chris and I returned, grabbed Mike and us lunch. Afterwards we began asking about what we needed to do to donate blood for the natural killer cell test. This test will see who has the better natural killer cells to help Jesse. I figured that Mike and I would have to register for medical numbers here. I had tried asking registration yesterday, but they looked at me like I was nuts.
The nurses did a great job helping us get everything in order. They contacted the medicine room, which offered to draw the 2 viles of blood from each of us they needed today. First Mike and I needed to go register for a medical number. As I had feared this took some time because the ladies didn’t know what I was talking about. We finally got it straight.
Then it was off to the medicine room. Jesse was very excited to come along and watch us get poked. Afterwards they each got to pick a toy out of the treasure chest.
I am so glad they let us do the blood draws today versus tomorrow morning at 7:30am. It would have been crazy especially with Mike and Chris needing to leave at 12 to head to the airport for their flight home.
When the blood was drawn, we drove Jesse and Fred the pole to the cafeteria to get popcorn and drinks to have a snacking dinner.
In the room, Chris and Jesse played with the doll house for a bit. Play stopped when Jesse started shivering really bad. And by 7:30pm, she is running a fever. The day nurse and I discussed that we feel the IL-2 might be causing the fevers. This is a side effect of the shot, and Jesse has spiked fevers each night after the IL-2.
Thank you everyone who sent cards. Jesse enjoyed opening them the other day. And they helped brighten her day. Thank you so much 🙂