7:15- check Clayton in for MIBG scan and CT with sedation.
8:45- Anesthesiologist running behind, Clayton just put to sleep.
Grab Breakfast...and wait...9...10...11...meanwhile parking my rump in a super stellar hospital chair.
11:45- see them roll a sedated Clayton back to recovery
12:15 p.m- head back to recovery to see Clayton and wake him up.
My travel buddy for the morning (my mother) notices a shaking coming from my sleeping child periodically. We also can hear he has some rattling. Doctors and nurses think he's fine so,
1:00- we're discharged. Head home. We both note he is much more rattly/wheezy than normal.
2:00- get home give him a dose of steroid for the respiratory issues...watch him.
2:40- he feels as though he is starting to get warm, acting like his teeth might be sore, give him Tylenol. Keep watching him...
3:00- think his breathing is getting better. Feed the chicks, collect eggs, start to plan dinner
3:15- maybe he's not getting better
3:30- grab book bag and hightail it to Sacred Heart.
3:45- explain thing to hemoc/onc nurse on phone. Debate going to Thomas or trying to get to Sacred Heart. Clayton is awake and his O2 is in the 90's so we decide Sacred Heart is best. The problem was not that his stats were dropping, but rather than he was "pulling" excessively. He should not have been working so hard to breath in and out. His body behaving that way can only keep his stats up so long before his body tires out and function diminishes.
4:00- continue driving like a (safe) crazy eyed mom with my flashers on trying to get my kid to the ER
4:40- arrive at Sacred Heart Pediatric ER. Immediately get taken to a room, see doctor and do chest x-ray. Everybody says Clayton sounds like crap, good thing we brought him in.
5:30- George gets there. Both feeling relieved Clayton is safely where he needs to be if his respiratory problems persist. Start breathing treatments and they give him more steroids.
6:30- go grab us dinner
7:00- eat dinner, doctor comes in, says he's undecided about Clayton. They don't see a reason for the respiratory issues, yet he sounds crappy. However he has improved slightly since his arrival with more steroids and breathing treatments. The doctor would admit him, but the peds floor is full so we would essentially be staying in the ER and he doesn't want him catching germs either. So if we're comfortable, he'll discharge us with the same instructions and meds he would have in the hospital if inpatient and we can come right back if there is a problem. We talk it over and decide our best bet is to stay nearby. Begin discharge arrangements.
9:00- As luck would have it the Ronald is full for the night. So then my Nana graciously puts us up at a nearby hotel. We check in and I leave George and Clayton so I can run home, grab clothes and let the dog out.
9:30- I get to Seminole and realize in all the crazy earlier, my keys ended up in Clayton's book bag...which is back at the hotel...in Pensacola. (Insert curse word here). Turn around. Head back to hotel.
10:15- after all the crazy and the hiccups, I'm not headed back to the hotel to then go home and come back again. So I just send George home for the night. (Somebody had to go let the dog out and nobody back home has a key...note to self: give someone a key). So George leaves.
12:00 a.m- Clayton pukes. What?
12:30- more puke...much more
1:30- more puke...Clayton and I now smell like green beans covered in fermented apple juice and all we have are the clothes on our back- the same clothes we wore out the door when we left our house at 6:15 the morning before. Call George to come back-with clothes for me and the kiddo.
2:30- more puke. George arrives.
3:00 - we finally get to bed...with one eye open of course hoping the puking is over.
We then get up early, grab breakfast and George drives in to work while Clayton and I stay behind for an appointment with the pulmonologist at 11. The pulmonologist seems to think that everything was a reaction to some combination of the injections Clayton got, the steroids, the SSKI or the sedation. Not sure what specifically. The odd thing is last September after this exact same MIBG scan with all the same components, we got home and within 3 hours Clayton had a fever so high he was nearly unresponsive and beginning to have respiratory issues. So of course we whisked him off to the hospital then too. It must be something connected to that test specifically because he has been sedated 2-3 times with the same sedation between September and now with no problems. Whatever it is it's new and potentially getting worse each time. Moving forward we will be cautious and I think stay at the Ronald on nights following any sedations (it's right beside Sacred Heart). Which brings us to more Pensacola appointments this week and another procedure (with sedation) this Wednesday. The good news is that the scan and it's components that might be causing a problem are now something we only have to do every 6 months...yay!
Anyhow, just another day in the life of Clayton. While the situation usually isn't the same, these kinds of hiccups seem common with my sweet little bug :(
Not gonna let it keep us down...
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