Day 103
On Saturday, I got my car back. Jesse and I ventured out to Target to grab some snacks. The rest of the day was low key.
Day 104
On Sunday, Jesse and I rode out to Germantown just to get out of the “cave.” When we returned, she did some school work and read a book.
I downloaded the Disney Junior Appisode App for her. She has loved playing with it. Later we talked to everyone at home. There are times while we are here that I feel Jesse and I are living on the fringe of our lives back home.
Day 105
This morning Jesse complained of being tired. I figured her red blood had dropped. Her counts were halving between Thursday and Friday… I figure by Saturday she was 0 on the ANC.
At 10:15, we headed over to clinic. Jesse and I walked through the double doors of the isolation entrance after a couple with a baby. Cute little girl with a tracheotomy, who stared at Jesse’s glasses and face mask intently.
I called Jesse’s clinic. The phone rang and rang and rang and rang… and well you get the idea. As I was about to give up, a clinician for the little girl arrived. She allowed Jesse and I to walk through the double doors of the holding area into the hospital. She asked if we had called. I told her that we had, but no one answered. I am really starting to wonder where that number on the wall for me to call clinic goes. Is it a separate phone that people can choose to ignore?
The clinician called our clinic. She must have know the right number to call for a response. She left to take the other family where they needed to go (B clinic, which is now on the 4th floor of the hospital). I dressed Jesse in the yellow gown, put gloves on her hands, and contemplated putting on a white gown. Heck we’ve been in isolation so long that they should just tell me the code to go in the back door of clinic. Then I can walk us over to where we need to be.
Our clinic clinician walked through the door 2 seconds before the other clinician returned from her run to B clinic. I know it’s a major inconvenience having to deal with isolation patients, but I am getting tired of feeling like Jesse is a hassle.
At clinic, the clinician took Jesse’s blood pressure and temperature. Jesse asked her to take mine. As she finished with me, the clinic nurse arrived to get Jesse’s blood for labs. Then the teacher appeared. Jesse was very excited to see her.
As Jesse was in school, her main oncologist popped his head in the door. I told Mike last night that he would stick his head in the door, say something and leave, because a) he didn’t want to have to put on the gown and b) you can set your watch by his stomach.
His comment was that her ANC is zero and be ready for a fever. I am praying this time we are not going to have to be inpatient with a fever. Please God let us stay out of extra hospital stays this round and next.
The nurse practitioner came in next. She said that Jesse would be getting red blood today because she is at 8.4 and obviously trending down. She then debated with herself about ordering platelets, but finally decided to wait till that number came back.
She asked if Jesse had been taking the sodium bicarbonate. I told her yes since Thursday morning. Then she asked if she’d been taking the nitrofurnation. Yes since Friday. She decided to wait till all the chemistry information returned before stopping or continuing the sodium bicarbonate.
She left, and the teacher finished up her lesson with Jesse.
Around 12:30pm, the nurse practitioner returned to let us know Jesse’s platelets are at 14, and she’d be getting a transfusion of platelets with the blood. The sodium bicarbonate will continue. And she needs to eat bananas and citrus because her potassium is low again. I left to find Jesse a banana. In the cafeteria, all the bananas had black spots on them. Due to not having any ANC, I didn’t want to chance her eating a banana with black spots. I returned to the room to figure out how to get a banana for Jesse.
I called room service. The woman told me I can ask the cafeteria if they have any unblemished bananas in the back. I went back to the cafeteria, asked a chef, and she was more than happy to oblige. I was concerned that the chef would be annoyed because I wouldn’t (couldn’t) take one of the bananas on the shelf.
At 2:15, the clinician came in. She asked if we were ready to go to the Medicine Room for Jesse’s transfusion. She even made the comment she’d have been there sooner, but she was busy talking. If she was talking to a family in treatment, I have no issue with that. But if she was talking to her buddies, that one will bother me. Jesse and I would love to get out of here. The sun is out today… it’s in the 70s… it’s freezing in these rooms.
As she was handing us a gown for Jesse, someone hollered her name. She disappeared to see what was going on. Jesse and I stood waiting in the hall for her to finish what she was doing to take us to the Medicine Room. I could hear her on the phone. Then I could hear her pager go off. Then I saw the receptionist looking for her. The clinician saw the receptionist too. She commented that she had to go, then to the receptionist she said to tell the clinic nurse she was taking us to the Medicine Room.
I wish they would just let me walk Jesse over. It’s obviously the biggest inconvenience for everyone that Jesse is in isolation.
In the Medicine Room, the nurse was really quick getting Jesse’s Benedryl hooked up. The Tylenol was already waiting on the table. This and the countless people checking to see if we’d gone makes me wonder how long ago they were ready for us.
At 2:30pm, the platelets were hung to transfuse. By 4pm, Jesse’s red blood transfusion was ready. Since she received a half bag, we only had to be in the Medicine Room for 2 additional hours. Jesse was beyond excited to get out of that cave. I keep thinking there has to be a better way. Why are the kids locked in these buildings away from being able to see outside?
By 6:30, I had given Jesse her shot and started the ethanol dwell in her lines. The white line is starting to be difficult to flush. She seems to have perked up a bit from the blood transfusion. But she has not be interested in eating today. I am trying to talk her eating something because she weighs 14.8kg (32.56lbs).