Made of Gray

Inpatient - Breaking the Six Year Record

Raising the Rare ChildHolly D. Gray3 Comments

I'm not sure where to begin. Honestly I'm out of practice in these situations and gratefully so. I want to make sure I get the details down. Lord knows I can't remember what I did last week much less everything that happens in a day, medically, for Caleigh when things get complicated. I'll start with our flights and appointments...

We arrived in Boston on Wednesday afternoon, got settled into our room and walked to the grocery store and out to dinner. It's Boston Marathon week and we enjoyed dodging tall, skinny runners wearing fluorescent outfits. Thursday morning we walked to lunch and then headed to the hospital for Caleigh's CAIR (Center for Advanced Intestinal Rehabilitation) and Endocrinology appointments. 

The CAIR visit lasted four hours. We discussed the upper and lower scopes for the following day, nutrition, bacterial overgrowth, Caleigh's growth and they examined her thoroughly. She is now in the 10% for weight and still off the charts for height. They're happy with her rate of growth though and we aren't planning any feeding changes at this time. We left the appointment with the expectation of seeing what the scope procedures tell us and go from there. 

Endocrinology was a fairly quick appointment. They're happy with Caleigh's growth over the past year as well. Her premature adrenarche hasn't progressed which is good. We'll follow-up with them when we return to Boston or if anything starts progressing. 

We waited at the lab for over an hour to get some tests in before the scope the next morning. We finally got out of there around 7pm. Scope prep kept us up all night with maybe two hours of sleep. 

Inpatient in Boston - Breaking the 6 year streak via

Friday morning, the hospital gave us the option of coming back to the OR before putting Caleigh under anesthesia. This is a way to reassure kids that things are ok. I was happy to go back with her since we've never been given this option before. We walked down the hall and into the room. Everything was going great. Once they started putting the raspberry flavored (which Caleigh picked out) gas mask on she turned cherry red and panicked. It was a strong, sensory smell overload and fear kicked in. Three people were holding her down. Caleigh started to act like she was going to vomit. I waited a second, no one moved... then I spoke up. Surprised, they turned her on her side, she was dry heaving, and they suctioned a small amount of spit out. I gave her a kiss goodbye and left the room so that they could get her airway stable. 

1) I will NEVER let Caleigh go back to the operating or procedure room again without Versed to help her calm down. They were worried about past history and since this was her first procedure here they asked us not to use it. Never again. Consider this my public service announcement for those of you with kiddos. 

2) Caleigh doesn't remember the event. Thank God. 

3) I will need to see my therapist when we get home. Because watching three grown people hold an object over your child's nose and mouth while they are panicking and can't breathe is one of the worst things I have experienced. Ever. 

On to the scope...

Just as we expected, the narrowings that were visible previously were still there if not smaller. The intestine surrounding the narrow areas is a dull grey color, covered in large veins and it is very inflamed. Much like the findings of last year's scope in Texas. Biopsies and cultures were taken from several areas and we left the hospital knowing that at some point soon we will be addressing these areas surgically once all the information is together for the CAIR team to discuss. We will have the results back in at least a week. Caleigh woke up well from the procedure and we all trekked back to family housing, rested, showered, hooked up Caleigh's food as normal and slept through the night. We were exhausted. 

Inpatient in Boston - Breaking the 6 year streak via

If you follow me on social media, you'll know that Caleigh woke up ok on Saturday morning. I, for one, felt like I had been hit by a very large truck. So we lounged, watched TV and took it slow. We hooked up her morning feed with medications as usual. 

As we were packing up, getting dressed and ready to head out for a day of exploring; Caleigh's demeanor changed drastically. She cried, we helped her out of her chair and then she passed out asleep on me... which never happens. We figured she needed to rest so we hung out some more. About an hour later we realized that she felt pretty hot and this was more than just tired. We didn't have a thermometer, but we gave her tylenol anyways. She seemed to perk up a little bit. So we headed out to CVS to buy a few things and pick up some food. While we were out Caleigh became lethargic, her temp with our new purchased thermometer was 101.2 and she was passing out asleep again.

Long story short (not really, huh?) we went back to the hospital, paged the on-call GI and settled in for 5 hours in the emergency room. They admitted Caleigh overnight and now here we are. We'll be missing our flight out of Boston tomorrow and settling in to the routine of a hospital. 

Inpatient in Boston - Breaking the 6 year streak via

Here are some things we know as of now...

1) They considered a perforation of the lungs or intestines. Thankfully, x-rays show no free air in her chest or abdomen. 

2) Caleigh keeps spiking a fever of 102 and up. Tylenol brings it down to 99ish. I can count on my hand the number of times Caleigh has had a fever and they were all central line related. This girl doesn't get a fever. If anything her temp gets low when she's under the weather. So this is puzzling to us. They ran cultures and started antibiotics last night. We should have preliminaries from the cultures by this evening. It could take up to three days to grow something, if there is a something in the blood. The thought here is that bacteria from the gut could have transferred to the blood or she could have aspiration pneumonia from before or after the intubation. She does have an occasional cough that is new since the procedure, but the chest x-ray looked fine and she usually has a sore throat after intubation. 

3) Another guess is that the narrowing in her intestines is inflamed and closed/closing off more causing this response in her body. She is still passing gas, stooling small amounts here and there and urinating fine. 

4) The team has her NPO, off feeds, and her g-button is to gravity. She's still in quite a bit of pain and sleeping on and off. She perks up some with the Tylenol, but it fades quickly. 

5) The final estimate is that Caleigh picked up a random virus on the way here, in the hospital or otherwise and this is what's going on. Which would honestly be the best scenario. 

Right now we are at the lovely wait and see stage. This could very well be a nasty bug that hit at the wrong time or this could be the start of something else. Eric and I are doing ok. Family housing was able to extend our stay until Thursday morning. We'll know more by then and may be able to get a few more days tacked onto that if need be. It's all up in the air and for right now we are thankful for a place so close to the hospital to escape a bit, shower, do laundry and cook some food. 

I'll be updating here on the blog mostly because I'm having a hard time mustering the energy for much more. For those of you that have been thinking about us, keeping Caleigh in your prayers and throwing your good vibes our way; we truly appreciate your kindness and love. 

It's been six years since Caleigh's last hospital admission. Six years.

Yesterday, we may have started a new chapter. 


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