Week before last Jesse asked me about what upstairs at Hershey Medical looked like. Saturday night (December 13) we got the opportunity to find out.
We started the day with plans to go to Hershey Chocolate Factory and spend time together as a family. First we went to check out the Thousand Trails 15 minutes from Hershey in case we get the chance to come camp this summer. Jesse fell asleep on the ride there.
We did make it to Chocolate World. What a zoo. We made Jesse wear a mask the entire time. Afterwards we went to Red Robin, then to Target. Jesse was having a really hard time staying awake going to Target.
When we returned to the room at 4:30pm, we called the doctor because her tiredness and cough made us nervous. Because she didn’t have a fever, we decided to try giving her back her Singular. I gave her the Singular… and 15 minutes later she threw up.
By 6:30pm, Jesse was running a fever of 99.3. We decided to take her temperature an hour later: 102.4. After calling the doctor, we were on our way to the emergency room at Hershey Medical. This is the first time that Christine has gone the entire process of an emergency room visit.
Chris opted to go with Jesse and I while Mike parked. It took 15 minutes to get checked in because the computer system was down. Afterwards they took us to triage. From triage back to a room to access Jesse’s port. Luckily I had put LMX cream to numb her skin before we left. Turns out that stuff is good for between 2 and 4 hours… who knew!
As I was talking to the resident, the nurses started to access her port. They had asked me her allergies before they started, but I heard the cloroprep pop and they hit her skin with it. I got them to wipe it off, praying it would not send her into blisters. They were very apologetic. (Unfortunately it did cause a place on her that made taking the tape off painful when the de-accessed her on Wednesday.)
They took blood to check her counts and make sure she didn’t have an infection in her line. Then we had to wait for the results. Once we reached the waiting point, Christine started having a really hard time. She kept saying that she wanted to go home. By 11pm, Mike took Chris back to RMH. Around 11:52pm, we were finely upstairs in a room.
We were amazed by the room. I asked the nurse where the parent’s room was. She looked at me like I had a third eye. Turns out here I can sleep with Jesse if she wants. I can use the bathroom and shower in the same room Jesse is staying in.
The nurse swabbed Jesse’s nose for MRSA and RSV. They swab for MRSA every 7 days here.
I asked the nurse if I could get the stuff for a sterile urine sample. I was petrified that Jesse was trying to pop another UTI. The nurse was awesome to bring me what I had asked for and to send it off for analysis.
Jesse woke for awhile, and we watched a movie. When we woke on Sunday morning, the site out the window was mind blowing… hills, forest, and grass. When Mike and Christine arrived, I went with Christine back to RMH to clean the room. I had a fear from being at the Memphis RMH that we’d be kicked out.
We cleaned the room, found a manager to talk to, and found out that we would have to leave. The reason was because Mike and Christine were going home that day and I wasn’t going to leave Jesse at the hospital by herself.
When I returned, Mike and Chris headed for home. Given the circumstances, it was hard to watch them go. Mike was really hoping to see a deer from the window. (The nurse told him deer are seen quite often.)
In the afternoon, we learned that Jesse’s RSV test returned positive. To help her get over the RSV maybe faster, the doctors decided to give her IVIG on Monday. As hard as we had tried, Jesse still picked up a cold from I think someone being here at RMH. So frustrating because this puts her in isolation until she stops coughing, which can be 3 to 4 weeks. I keep telling myself this is better than the months we were in isolation at St Jude.
I will give huge props to the staff at Hershey Medical. I NEVER once heard anyone complain about putting on a mask or the gown. And everyone was really great about wearing it because the last thing we want to do is give this to anyone else. I can’t begin to tell you how much we appreciate the way we have been treated here. Never once have we felt like an inconvenience. Mike even commented driving around town how courteous people are here.
On Monday, the blood cultures had grown for over 24 hours and so had the urine culture. Both were showing negative results. The doctors explained that Jesse’s RSV was all upper. And at that time they didn’t think there were any other infections. Yeah!
The IVIG started at 9am. The plan was to start infusing at 10mls and eventually work up to 70ml rate of infusion.
But at 30ml rate of infusion, Jesse started to shiver violently. The nurse stopped the infusion. And after several discussions with the doctors, it was decided that Jesse could not handle the IVIG protein above a 20 ml/ hour rate.
The nurse apologized because it would take so long, but we weren’t upset because we weren’t going anywhere.
The infusion finished around 5pm without other incidents. Jesse kept begging for people to play with. Our nurse was awesome to offer to come back and play with her. He asked if she liked to play board games. She responded with she wanted to play dolls, which he agreed to do. But he got lucky because when he returned Jesse was into a show on TV.
Monday night Jesse didn’t run a fever, but her blood pressure started to be a little bit higher. I asked her if she hurt, and she told me she didn’t.
Even though she didn’t run a fever, the doctors decided they wanted to check her for C-diff just in case. I have no problem with that. I would rather catch it earlier than later. And since her counts on Tuesday were 260, I definitely don’t want to take chances. (Luckily the results came back with no C-Diff).
The doctors decided to give her Synergist, an RSV vaccination. But they did it through her IV line instead of being a shot. So I am not sure how long it will be effective in protecting her from RSV, or if it was just a one time deal. They also decided to hold her Serafinib (Nexavar) until she has the next dose of gemcitabine and oxalyplatin on Monday.
Her blood pressure increased to 150 over 97 by Tuesday night. This coupled with a headache caused me anxiety. After much discussion, the doctors felt the headache was from the IVIG. And luckily her blood pressure started to return to normal on its own.
Wednesday morning her ANC jumped to 1680. I have never seen her do that without cheating. And by cheating, I mean me giving her a shot of GCSF or GMCSF. Since she was doing well, the decision was made to discharge her.
From our experience with the Memphis RMH, I was concerned about where we were going. Jesse will stay on isolation until she stops coughing. And we definitely don’t want to infect someone else at RMH with this. Turns out here, RMH will allow you to come back. Jesse just has to stay mainly in her room and wear a mask when she is in the common areas. And thanks to our social worker, she can eat in the room. This way we don’t risk picking up something else. Yeah!
Our social worker was busy getting our prescription of GCSF (yes she will start shots again on Tuesday) that he accidentally forgot to tell us we needed to register with RMH. But RMH called us to see if we were coming back. I’m not upset at all because he was having to figure out a lot with getting the prescription to our house, and I really appreciate him doing that.
Back at RMH, we have been hanging out in the room. Thursday night I took her to see the Hershey Sweet Lights. Jesse really enjoyed herself and we picked the perfect time to go.
Friday, we traveled to clinic for Jesse’s counts to be checked.
What is really cool is all her blood counts look to be returning on their own. Yeah! We are praying that she has 50 platelets (the number they would like for her to be at when chemo begins again on Monday). I also learned that IVIG can cause high blood pressure. This is only our second experience with IVIG.
On Sunday, Jesse saw some people donating to RMH from her window. She asked if she could wave to them. She was so excited when the little girl waved back. The family asked if they could meet Jesse. The young man in charge had gathered the donations to RMH as part of his senior class project. And they were really nice to give Jesse a stuffed dog. She has named and renamed her.