What a Day!!!

Before I attempt to get all of you updated on our happenings since about 4:30 yesterday afternoon, I think it only right to give you fair warning this post may be long!!! So, may want to grab a coffee, pack a lunch, and go to the bathroom before you proceed.

I have said before that if there is bad luck to be found, Keenan will run right into it! Now he always ends up just fine, but getting there is met with more obstacles than I could count, or even want to at this point. Thank goodness God is always watching over my sweet, little trooper, for without the assurance that God is in control, even when life is out of control, I would have no place to turn back to when I just don't understand and need reassurance. Now is another one of those times.

Kee has been on a seizure medication for 12 days and I have been watching him closely for side effects. This medication is one that can have a very serious side effect known as Stevens Johnson syndrome. Each day I have journaled the dose given and any side effects, which were none. That is, until yesterday. About 4:30 I noticed a couple of red spots on his ear and a little area of redness on his cheek. Talked to our neurologist and they were not alarmed at this point, so I tried not to be as well. Got in to St. Louis and as the evening progressed he felt feverish. The rash was also getting a little worse, but not alarming. I did talk to a nurse before bed, to try to calm the horrible pit in my stomach and the gut feeling I had about the medication. Needless to say, I did not give him his night dose (or his morning dose). No way, no how!!!!

I did manage to get some sleep, but never fell into a restful sleep. Moms will know what I mean. Oh, on top of my worries about this rash, Keenan's anxiety is high and he is not wanting the surgery at all. Who can blame him, right??? If I took my eyes off the "big picture" for even a moment, I would have pulled the plug and headed back home.

This morning when we awoke, the rash was worse. More red and on both cheeks. Also on his arms and some on his legs. However, the most concentrated area was his face. We called the hospital to make them aware of what was happening and they told us to come on in to the hospital a little early so they could evaluate and make a decision how to proceed. Keenan is quite upset and scared by now, wanting us to call off the surgery. I am hoping at this point they proceed because the odds of getting him back here without going completely nuts were not in our favor.

They evaluated and determined the rash was probably viral (but I was still not convinced). So, they decided to move forward. He did have a low-grade fever, but they felt it was related to the rash. Kee was pretty upset, so they gave him some medicine to help him relax and the medical team decided Brad could go in to the OR and stay until Kee was asleep. That made a big difference to him. Yea! We needed a small victory at this point.

After surgery they brought us back to recovery and let us know Keenan had aspirated during surgery. I guess it can happen, especially when the patient was already anxious and upset. So, now, on top of the rash, that is still concerning to me, we had the worry of fluid in his lungs with the possibility of pneumonia. No, I am not kidding!!!!! Did I mention it was not even noon yet?

So, as is so often the case, you do a lot of "hurry up and wait" at the hospital. The nurses and staff kept a close eye on his breathing much of the afternoon. He had to have one breathing treatment and has had oxygen close by his mouth off and on since surgery. The breathng improved, but one of the doctors still wanted to do a chest X-ray to have a better idea what was happenng. That sounded good to me...a definate answer about something...count me in!

The X-ray showed some grayness in a lung, so he would be given antibiotics for that issue. As far as the rash, I guess it was secondary to the lungs. We have spent the entire day in a little room in surgery recovery. At the time of my tying this portion, it was 6:55 and they were still trying to decide where to put him. It has been a long day in a very tiny room.

So, about 7:30 we finally made it onto a floor! A little to our disappointment, we ended up in a room with another patient. Oh well, there are worse things. Then we spent the next hour and a half going back through the last two days and current medications, with everyone but the janitorial staff.

FINALLY, at about 9:00 or so, two of the pediatric residents came in to do their assessment and get some history of the day from us. They listened to him breathe and said he sounded better than the X-ray they did, which can happen. So, they turned their focus a little more toward the rash. After assessing him, as best they could at this point in the day with no sleep, these two doctors did not think we were dealing with a worst case scenario of Stevens Johnson Syndrome. Now, whether the rash was viral or a reaction to the medication he was taking, they could not be certain. Her gut was a viral rash, but she wanted to start gathering some data that might be helpful, so she did a strep test and a viral test. This was a nose swab that can test for some of the most common viruses. At least I felt like something was being done to find answers, or at least eliminate some unknowns.

Due to the swab they did for staph, at 10:00 we had to move rooms. They wanted us to be in a private room just in case that test came back positive. Guess that was God "throwing us a bone" after a day that seemed to keep going and going and going...

At the time I finished this, Keenan was sleeping very peacefully. Brad was looking at pictures of Hondas, and I am doing what seems to bring me some comfort...writing. maybe a little bit of normal to end this bad day.

I was reading some scripture this afternoon as I waited and watched Kee, and I was reminded in Psalms that our God never sleeps. He doesn't even need a power nap. As I get ready to try to take in more than a power nap, there is comfort knowing that The Great Physician is watching over this WHOLE situation, the many facits of it, and has it under control. He will not turn His face from Keenan even for a minute tonight. Thank you Lord, for being faithful, even in those moments I doubt. Thank you for watching over him and keeping him safe.

I think tomorrow will look brighter. One of the residents told me this evening that the plan is to get us out of here tomorrow. She didn't really see an issue with that happening.

So, please pray that he continues to improve and has no more issues of ANY kind. Also pray that if there are answers we can know about this rash that they will be made knows through the cultures they took.

That is all. My brain, eyes, and mental capacity has been exhausted with this day.

Tammy