Since we didn't feel comfortable having Staussen stay at all three hours of church, Ron dropped me off and now both the kids are finally asleep so I'm just going to finish the update.
December 31:
An update has been needed for a while. We were in Utah for Russell’s wedding but scheduled to return to Virginia on Christmas day since Staussen had a scheduled chemo session the day after Christmas. Things were smooth with Staussen, health-wise, until the Monday before Christmas when he began to seem more clingy to Auna and me. We assumed it was because it was getting towards the end of the trip and his schedule had been off for a week; however, that was only partly true. His behavior was explained on Wednesday night when he came down with a fever.
It was Christmas Eve and all the relatives were coming to the house to celebrate Nanay’s 85th birthday. I was working on a surprise Jeopardy game about Nanay’s life when I felt Staussen’s skin was warm. I assumed it was because he had just recently removed his jacket. About 30 minutes later, Auna brought him to me because he was acting very fussy. Auna felt that he was warm, too, and so did our cousin, Niko. After feeling him again, it was obvious that he had an elevated temperature. We took it officially--101.6F. We took another one a few minutes later--101.0F.
Suddenly, Christmas Eve plans changed.
After talking with his primary oncology team in Maryland, we went to the Utah Valley Regional Medical Center emergency room. Good thing we had all the equipment necessary to access his port. A pediatric ICU doctor came to the emergency room to access Staussen’s port. Not to be harsh, but he wasn’t very experienced. He placed the needle three times into Staussen’s port before he was finally able to draw his blood. I had to request a tegaderm patch to secure the port because I didn’t see that one was ready to be placed. Even though we had put emla cream over his port, Staussen was still crying.
We were finally admitted to the pediatric ward around 10pm. On Staussen’s bed was a Simba pillow and a couple of wrapped presents. How thoughtful!
My parents and siblings came over to visit a little after midnight.
**** Okay now I (Auna) am writing the rest.... Sorry it won't be as technical and detailed as Ron. Maybe he will be able to contribute more details later.
When we first got to the ER and they finally drew his blood and we heard the results we were amazed that his counts were low across the board (just like when he first got diagnosed). So we had to give him a blood transfusion.
It was an interesting feeling being at the hospital Christmas Eve. But for the situation, it really was nice as far as the staff and atmosphere goes! We really loved the nurses and they were very generous!
When we first got released from the hospital the doctors told us that that would be the longest time we would spend at the hospital. They said occasionally we might have to spend a night or two there if he gets a fever or depending on occasional treatments that would make him stay a few nights. So even though we were not thrilled about being at the hospital Christmas eve/day we were expecting for Staussen to recover soon and be leaving.
I guess when the doctors said that they forgot that staussen likes to be atypical in many medical scenrios so far. So he proved this once again (in not really a great way this time). The day after Christmas a doctor came in and said that she had bad news to tell us. Ummm, okay I'm holding my breath what could it be? She said that in the blood culture (from christmas eve) they found an infection in his blood. They recommended going to primary children's hospital to remove his port and receiving the rest of his care over there.
A few hours later we were driving in an ambulance to primary childrens hospital... It wasn't with sirens or anything though. He was just in the ambulance in case something came up on the way. I was kinda confused for a while if this was an emergency or something less that just needed somewhat prompt attention. Depending on how much was in his body and how fast it was growing it could have been an emergency but we just didn't know and they said things could change quickly. But for the time being his vitals were looking decent and he seemed okay.
Once we got to primary children's hospital everyone seemed really chill when we arrived. So I was assuming they weren't overly worried. They said they were going to draw his blood and do another blood culture just to MAKE SURE it really is a yeast infection in his blood and not a contaminant. They are not super anxious to take out his port unless it really is necessary. Also since his vitals were okay they were just going to wait.
The next several days were just hanging out in his small hotel room. He was on isolation because he had a fever and basically 0 immune system. His fever would persist on and off for several days. He also was developing a pretty crazy rash all over his body. His immune system was just not making any progress and so the doctors finally decided to give him a shot (sorry I don't know the name) that helps give it a boost. Several days of giving him that shot once a day his ANC started getting a lot higher! At day 5 at primary childrens hospital staussen was without a fever for longer than 24 hours and his blood culture was still negative for a yeast infection. So we were starting to get ready to go home... but then shortly before getting ready to leave we received news that the blood culture came back positive with the same infection as the one from christmas eve.
Okay the kids just woke up... I am a slow typer... Basically we had surgery the next day to remove his port and several days later he was stable enough to leave from the hospital. Hopefully Ron can get to filing in a few more details that I missed tonight.
