October 12, 2012

Last week, we had our regular clinic visit after a month of runny noses and sore throats. SD and Emma were feeling better a couple of days before clinic, so we were hoping he'd be well enough to continue regular treatments.

Unfortunately, SD's blood counts were very low, in particular his white blood cell count and absolute neutrophil count. So he went off his regular chemo but kept his regular steroid pulse for the next week. During that time he was very susceptible to illness, so we isolated him at home.

SD was supposed to get his counts re-checked yesterday morning (Thursday). However, he developed a fever overnight. After consulting with SD's regular doctor in Grand Rapids, Mandy took SD into the ER at Munson at around 6 am.

Normally, we try to be understanding of medical care providers; they have some difficult jobs, work difficult hours, and most of their clients are under a lot of stress (which makes them difficult to work with)! But I must say we were quite disappointed with our Munson ER visit. Not only did they perform a series of X-Rays (which they do about 90% of the time we've gone there, and it has never shown anything), but they also made him wait for over two hours before they even drew blood for the labs. With all of the doctors and hospitals we've been in over the last 9 months, this was an astounding and unprecedented level of incompetence.

When Stephen learned that SD still hadn't even had his blood drawn, he gave Emma breakfast and they headed downtown, ready to kick butt and take names. Fortunately, that wasn't necessary; we think they already received a talking-to from our regular doctor. By the time the whole family was in ER, they had already drawn SD's blood.

SD was in quite a bit of pain and stayed in the ER bed on Mandy most of the morning. Emma was fascinated with all the hospital equipment; she got quite upset when we wouldn't let her sit on the beds in the hallway! Fortunately, Grandma Cleary was able to come down and take care of Emma.

Eventually, we got the results of the labs back: SD's absolute neutrophil count was practically unchanged since last week. Since SD was neutropenic and had a fever, they decided to transfer him to Grand Rapids. Instead of going by plane, this time he got to go in an ambulance! Mandy traveled with SD, and Stephen joined them later that afternoon, while Emma went to Grandma's house.

Interestingly enough, we are in the very same PICU room that we were in the first time we were transferred to Grand Rapids!

SD did not sleep well that night, even though he was sleeping on Stephen. He was in a lot of pain that afternoon and overnight. We gave him some morphine at around 6pm, and he started really sleeping around midnight. Even then, his sleep was intermittent; with all the fluids he'd been getting, he had to keep going to the bathroom (SD is potty training).

Most of today has been the same; SD has gotten some antibiotics, a bit of steroids, lots of lortab (like tylenol but stronger), and most recently a red blood cell transfusion. He's been mostly watching movies and saying "tata (Stephen) hurt!"

We are still waiting on the full results of his blood cultures. He definitely has a bacterial infection of some kind, probably acquired from his own gut. There are three major possibilities right now of what we're seeing:

• He just has a bacterial infection that we can treat at home. In this case, they'll keep an eye on him here for a few days. We'll be heading home Sunday at the earliest.
• He has a bacterial infection that has to be treated here. In this case, we'll have to stay here a minimum of ten days, going home on Monday the 22nd at the earliest.
• This is a relapse of his Leukemia. In this case, we'll be here an indeterminate amount of time as we completely start over with his treatments.

Update at 5pm:

Our doctor came in at 4:55pm after calling the lab people directly. They had just gotten the results before she called: the test results indicate this is *not* a relapse of his Leukemia, merely a bad bacterial infection. Praise the Lord, and thank you for all your prayers!

SD is finally sleeping peacefully on Mandy after taking a variety of medicines.