I certainly was not expecting or planning another post until next week, but things do change.
Nick got up this morning with a high fever and feeling really bad. I called the oncologist in Birmingham, which is the protocol we have to follow, for instructions. I was told the Nick needed to be taken to Huntsville Hospital Pediatric ER for an evaluation, blood tests, and to have blood cultures drawn out of his port. The results of this ER visit would allow the oncologist to decide if Nick needed to be admitted to Children's Hospital in Birmingham.
The ER doctor and nurses were wonderful. The blood cultures were drawn from Nick's port, and lots of other blood tests were drawn. A chest x-ray was done to rule out pneumonia. Nick was also swabbed for flu and strep throat.
The initial blood tests were fine and didn't really show anything. The blood cultures from the port will take up to 5 days for any infection there to be ruled out. The flu test was negative, but the strep test was positive.
I have never been so glad to have a positive strep test. This is something normal, not cancer related.
I know that this may not be easy to understand, but things with Nick can become very bad, very quickly. When a body runs fever, it is an immune response to whatever bacteria or virus is present. With Nick's immune deficiency, his body does not always react with enough of an immune response. Usually by the time Nick is running a high fever, it means that he is very, very sick. It's for that reason that the oncologist wanted Nick evaluated in the ER.
My prayer requests are that Nick feels better quickly, the medications work effectively, and the blood cultures will come back negative.
If the blood culture results show the presence of some kind of bacteria, it is likely that Nick will need surgery to remove his port and IV line. Then at some point, either during that surgery or in an additional surgery, a new port and IV line will need to be placed. The port and IV line are necessary for the administration of the chemotherapy. It also provides Nick with the additional benefit of not having to be stuck in his arms for blood tests. Nick has very limited vein access in his arms due to so many needle sticks during the last 15 years.
The thought of Nick needing to undergo surgery to remove the port and line is frightening for me. When Nick had to have his last port and IV line taken out many years ago, he nearly died from a very rare surgical complication. The IV line got stuck inside the vein and broke when the surgeon attempted to remove it. The broken IV line traveled through the left ventricle of Nick's heart, down into one of his lungs, and punctured that lung. Nick aspirated (vomited while a breathing tube was inserted and fluid entered the lungs) during the surgery. The surgeon had to call in a team from the Cardiac CATH lab to come and fish out the line from Nick's femoral artery (located in the groin area in the bend of the leg/hip). The surgeon also had to make other incisions to remove the pieces of line near Nick's collar bone and under his left arm. We spent a very long night in the Surgical Intensive Care Unit at UAB Hospital with Nick being very closely monitored. Prayers were answered when the chest x-rays were done the next morning and all of the fluid was gone from Nick's lungs. Nick's oxygen levels had improved and we were moved to a room. Later, we were able to come home and Nick had to take antibiotics for a long time. Everything ended well, but it was a very frightening time for all of us.
I am worried about there being a repeat performance.
Please cover us in prayer. I know that there are many prayers being offered up on our behalf. I truly appreciate them. I don't know how I am going to get my little family through this next journey, especially when I don't feel properly equipped.
The events of today showed me that I can handle whatever happens...at least during the moment. I still know how to take care of whatever needs to be done. I still know how to talk to the doctors and nurses. I can still turn into hospital mom in the blink of an eye. The difference is I don't have Keith fighting along side me.
Please continue to pray us through the fire.
In Christ,
Kristy Baxley
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