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I know yall gotta be wore slap out..glad for the improvement

Great news on the improvement and her high spirited personality! Still praying for full recovery.

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Glad to hear she is doing better.

I would offer to come visit, take you out for a meal or bring you some jerky amd reading material but I am coming down with something and definitely don’t wanna infect y’all and especially her

Probably best if you stay a few blocks from the hospital in general

But thank you

It’s the thought that counts

Still praying

Glad to hear she is doing better Gomer.

Glad she doing better Gomer!

Been following this. So glad to hear she’s getting better. You guys must be exhausted from all of this.

UPDATE:

Some positives, some negatives...

Maddie was moved to a regular room yesterday evening. Originally, she was to be moved from PICU to "Special Care" (a "step-down" unit) on Saturday, where she would have stayed for 3-4 days before going to a regular room. The Special Care was slammed, so she basically got a "Special Care" level of care while in the PICU department (the only real difference is they come in less frequently for vitals and such). So, ultimately she ended up in a regular room pretty much on schedule, as expected.

They did a swallow study yesterday morning to see how she handles eating/drinking. She can drink perfectly fine (this is HUGE). She ate a little bit of pureed food but kinda struggled with it. The therapist attributed her struggles less with her condition and more with the fact that the pureed food is nasty and they gave her an adult-size spoon. She got us some smaller/shallower kids spoons to try today, and brought some yogurt/pudding/etc to try.

The only 2 things keeping her there currently is the supplemental O2 in her nose, and her ability to get nutrients by mouth instead of feeding tube. The O2 is already on the lowest setting and they expect to be turning it off all together today or tomorrow. As long as she continues progressing with eating/drinking, there may be a light at the end of the tunnel. If, for whatever reason, she cannot eat/drink consistently, they would have to send her home with a temporary feeding tube - they REALLY don't want to do that, and obviously neither do we. Their opinion, which we agree with, is that if we need to keep her there for a few extra days in order to avoid being sent home with a feeding tube, then that's the way to go.

Now, for the negative...

MrsGomer and I nearly made a nurse cry last night. After getting moved a general room, they swapped her O2 nose tube out for a different (low-flow) one. It wouldn't stay in. we told them they'd need to get a smaller one b/c this one wouldn't stay in. 45 min later they came back with the same one, realized it was the same and left, but didn't immediately return. Also, at some point the nurse disconnected her feeding line after finishing a bag of "food", but spilled a lot on her sheets. We told them they needed to change them....30 minutes later it hadn't been done.

Called the nurse in and jumped her ass over the nose tube we'd been literally holding on her face for 2 hrs, and the unchanged sheets. She was visibly upset and on the verge of tears, apologized and said something about they were just "busy"....(that was the wrong thing for her to say). I told her I didn't see any beds in the hallway and that if "busy" just meant a patient in each room, that isn't "busy", that's normal. At that point, she said (and I quote) "mom and dad, what can I do right now?" (again, wrong response).

I stared at her for a moment and said "Right now, you need to get a damn nose piece that will stay in her nose and change the damn sheets!"

She did, with a quickness. The rest of the night was uneventful.

Talked to the doctors this morning and explained the frustrations from last night and they assured us they'd make sure it gets taken care of immediately.

We have no doubt she is where she needs to be from a "Level of Care" standpoint, it's just a matter of making sure the personnel are capable of doing their jobs. Up until this point, everyone has been pretty exceptional, so it was a little unexpected to find someone that wasn't. We're just going to have to stay on them I suppose.

Prayers still going up. May God give y'all strength to get through this. Be sure and let us all know if there is anything we can do,

Hang in there, Gomer. Continued prayers for baby girl and the family.

I'll also add, we spent quite a bit of time @ UAB with my oldest daughter. 95% of the staff were exceptional. As an "educational" hospital, one of the things some of the staff learns is that they just aren't cut out for that work. Be patient, be kind, but be aware and persistent .

As an aside......Hollywood always gives the impression that nurses, in general, are young and good-looking, but that never seems to be the case in the "real world", for the most part.

Well, if you've ever wondered where all the hot young nurses actually hang out, it's the PICU and Special Care units at Children's....even MrsGomer commented that the staff, as a whole, on that floor was "well above average", and not just from a professional standpoint. My response was "really? I hadn't noticed..."

Prayers sent !!

i might need to get some special care .... glad to hear Maddie's doin' better bro

Another Update:

I had to come into the office for a few hours today (now that she is quite a bit improved, we're comfortable not BOTH being there all the time on occasion). I talked to MrsGomer a few minutes ago....the "personnel issues" from last night seem to have been resolved. She talked to the charge nurse this morning, as well as the entire team of docs assigned to Maddie's case. They assured us the issues we ran into last night won't happen again. The staff that we've dealt with this morning have been back on par with what we've had up until yesterday, so that seems to be taken care of.

Maddie is TOTALLY off supplemental O2 as of a couple of hours ago. The physical therapist came in to do her daily deal with Maddie, and today they wanted to get her up walking around. She brought a portable O2 tank to use, but wanted to see how it went without it. She did great, so they'll continue to monitor her O2 levels but will not hook her back up to it unless it's needed. She got up and walked up and down the hall a bit and did great. Now, it looks like the last hurdle to jump is the eating/drinking situation. MrsGomer said she drank more juice this morning so we're pretty confident drinking with a straw is a non-issue. If worse comes to worse, she can drink Pediasure for a while if needed. She took a couple of bites of yogurt this morning and did fine with it, but said she didn't like it and wouldn't eat any more. I still think she can eat by mouth (at least soft/pureed foods) if they could just find something she liked.

Wonderful news about Maddie and prayers continue for all of you. Seeing our children suffer is absolutely awful cause it makes us feel so helpless. Stay on top of the staff!!

That's great news gomer. I know yall have to be exhausted. Again, let me know if I can help yall out any while at UAB.

That is great to hear. Sounds like very close to going home. Stay on them about discharge plans. Sometimes you can get screwed cause one dr didnt sign off on something or its too close to the weekend so they try to keep you until monday. Make sure you have a clear list of what has to happen to go home and what you can do to speed that process up and what could potentially hang you up.

Unfortunately when you are in the picu and not in "picu condition" it is a ghost town in your room. They spend most of their time with the kids setting alarms off. I've been on both ends of that situation.