What A Difference A Day Makes (Day +12)

I'm sorry I kind of left you all hanging with my last blog post. Alex's fever continued up until last night. We have been in isolation due to the C-Diff. issue. Being cooped up in that room for 10 days straight is hard - on everyone.

We have had quite a few struggles with oral medication, leading up to Alex actually throwing back up a Tylenol pill moments after he gagged it down. With fevers continuing up in the 103 range, we had to get him cooled off. Acetaminophen (Tylenol) is the best way to get a fever down quick. The nurse said that since Alex had started throwing up the pill, and his fever was acute, that he qualified for IV acetaminophen. The FDA only approved an Intravenous version of Tylenol last November, for use beginning in first quarter 2011. With everything else going through his Hickman Line, I was astonished to hear that IV acetaminophen was just now approved. Sometimes science seems to be so quick, and others, it seems impossibly slow.

Alex overheard the nurse tell us that he qualified for the IV version, and promptly said he would wait on the doctors to order it, and the pharmacy to send it up (hospital time...likely 4 hours at least). With his little body roasting in Eric's lap, we had a huge struggle to get the liquid Tylenol into his protesting mouth. Once he swallowed it, he calmed down quickly, and the first words out of his mouth were "hmm, I like it" *doh*! So, no need for IV acetaminophen after all.

There was one other medication that had to be taken in pill form (no liquid or IV alternative), so Eric and the nurse decided to try crushing the pill, and suspending it in the liquid Tylenol. That worked well, and with less protest, Alex took his oral medications as needed. Now that his fever is gone, he doesn't need the Tylenol, so he is back to taking his one oral medication with apple sauce. It is still a struggle to get him to take it, but at least he isn't throwing it back up.

Alex's body is having a hard time holding on to platelets. He has needed a transfusion every day since my last post. Last night, even after receiving his daily dose of platelets, he had a severe nose bleed. It freaked Alex out, and he kept yelling "when is it going to stop...mommy, when?!?" I got the nurse right away, and we had to convince him to let us pinch his nose, and keep it pinched to slow the bleeding. He also wanted to lift his head up to keep the blood from coming out, which the nurse explained could cause him to aspirate blood, or swallow, and subsequently vomit blood. I am so glad the nurse was there, because for whatever reason, with everything both Alex and I have held together, this was really wigging us both out. (I have probably seen too many science fiction movies, where calamity all starts with a bloody nose). Alex kept screaming that he couldn't breath. I started loudly breathing through my mouth, and Alex followed suit, and we both calmed down together. Twenty five minutes later, he was falling asleep in my arms, with the nurse and me taking turns holding his nose. Platelets were ordered, and as soon as they started dripping into his veins, his nose bleed subsided. That being said, this morning was the first morning he didn't need platelets! We'll see how that trend continues tomorrow morning.

On day +9, I noticed a rash on his torso, cheeks, and arms. There was much discussion about the rash. Was it caused by the fever, or was it bacterial (more blood samples to the lab), or was it Graft Versus Host Disease (GVHD). It didn't look too much like a viral rash, and none of his blood samples were growing anything to point to bacterial infection, so it seems to be GVHD. As the U.S. National Library of Medicine states: "Absolute prevention of GVHD is not possible, and is a risk when receiving a transplant from anyone else."

To complicate matters, since Alex was on isolation for C.Diff, some of the symptoms overlapped, so what was C.Diff, what was GVHD, or was something else reeking havoc on our boy? Alex slept a lot the next few days, but felt great when the Tylenol was working.

Today, Alex woke up fever free, and for the first time in 10 days, the nurses and doctors all came in without the protective gowns, gloves, and masks. It is hard to explain the emotional impact that had on me. It really lifted my heart. We were told that Alex had completed his C.Diff. treatment and was "free to move about the ward". We got dressed, and I promptly walked down to the family kitchen to get myself a proper cup of coffee (if what they have there can be called proper). Alex tagged along, dragging his pole with all seven pumps on it. We made one circuit of the clinic, and then went back to the room. Alex quickly ran to the bathroom, had more diarrhea... and we were back in isolation. We made the best of it, but I have to admit, that when the nurse came back in with the gloves and gown back on, I felt like we had taken a step back. A sample was sent to the lab, and we waited for the results.

As I was taking Tessa back home tonight, Eric called and said that the C.Diff. test came back negative (YAY!), which should mean we were out of isolation. Alex hadn't had a fever, his rash was subsiding, and C.Diff. was clear. Eric asked if this meant Alex could go to the hospital school in the morning, and the doctor on duty hymned and hawed, and said they want to wait to see if the diarrhea continues.

ARGH!!!! Alex has been cooped up for 10 days... from my perspective, the diarrhea along with the rash and fever scream GVHD. Eric agrees, and is going to continue to press the doctors and nurses to let him out of his room.

We want to be mindful of the other patients, just as we hope others are mindful of Alex, however, unless the doctors can come up with a test showing that Alex is contagious, or could "possibly" be contagious, we want Alex back in the hospital school. It is amazing how healing "normal" activity can be, even if it is just the freedom to walk out your bedroom door.

So, after this novella, you should all be up to date. To recap:

Fever = Gone
Number of Pumps = 7
Rash = Fading
GVHD = Most likely
Isolation = Being contested
Number of Hemoglobin Transfusions this week = 1
Number of Platelet Transfusions = 5
Energy Level = Improving
C.Diff = Negative
Bacterial Infection = Negative
Rhino Virus = Negative
Liver Function = Excellent
Mouth Sores = Continuing
Bone Pain = Relief with morphine
Hair = Falling Out
Spirits = Determined and strong
Gaming System = Xbox installed and operational
Food By Mouth = None
Drink By Mouth = Sips here and there
Nutrition = Provided by IV
Prognosis = Excellent