I was hesitant to post anything on my blog about what was going on recently because things were changing so quickly from hour to hour. So for those of you hoping to catch updates here, I'm sorry.
Charlie was admitted to the hospital a couple of weeks ago with what they thought was aspiration pneumonia. That is the post below this one. She did a total of 3 rounds of antibiotics. A week or so after we left, her nurse called me to say Charlie was not doing well and was jerking a lot and desatting. She gave her ativan and clonidine and after 30 minutes or so, Charlie went limp in her arms and just hung at 74. She called the squad and I met them at the local hospital. By the time I got there, Charlie looked to be doing well, satting at 97 on a non-rebreather mask and not jerking any more. I was ready to just take her home. They took another xray though and saw the "spot" from the week before actually looked a bit *worse*. So they sent her to children's.
After we got there, I made them hold off on the IV. Charlie was not having an easy time and I wanted to discuss things with the doctors before starting yet another round of abx. In the morning, her regular pulm doc came in (yay!) and told us he wasn't sure what the spot was, but since she was not having any signs of infections, it could just be scar tissue or something. So I decided not to do any more abx. Charlie started jerking again and jerked relentlessly for 2 days. Because nothing so far seems to keep it under control, we decided to bring her home on hospice.
We got the extra oxygen equipment set up at home and had an ambulance transport take her home. We were giving her oxcodone and clonidine for the jerking. Still, she was barely getting a break. Any time she'd wake, up, she'd start right back in again. Her body seemed to be slowing down. We had to cut back her feeds and I had to cath her at one point. Her bowels slowed even before we started the narcotics. Her body temp and pulse were erratic and her skin was mottling.
We started preparing for her death. It certainly looked like she was headed that way! So my sister and dad visited from memphis. Friends and family stopped by. Charlie's dad even got information from the funeral home.
Charlie started desatting even with the oxygen up to 8 liters on her mask and we decided to take it off. The mask was hurting her and the oxygen was drying out her eyes, mouth, lips, and nose. She desatted initially but was more comfortable. But after 24 hours she STABILIZED. Holy cow. We were NOT expecting that! Things still did not look good because the jerking was still out of hand and she would desat badly with the episodes (and no, it's not from the pulse-ox being kicked around, Charlie doesn't even move her legs during the jerks). She generally goes down in the 70's with them but one time went into the 40's. So it appears that all this time the oxygen wasn't even helping her? It looks like she just desats when she has something funky and neurological going on and can keep herself stable most of the rest of the time. She doesn't have the BEST sats and any doctor would probably tell us to keep her on 1 or 2 liters anyway, but Charlie is more comfortable with it OFF, plain and simple.
So as of 2 days ago, we decided to do a consistant med schedule, instead of "as needed" because by the time we get the meds into her when she starts jerking, it SO much harder to stop. And then she can just go for HOURS. So she's on oxycodone around the clock and we are doing fentynol aerosols and clonidine as needed. This appears to be working, but she's knocked out much of the time.
I HATE that Charlie cannot have even a semi-normal life. I came to terms with her disability a loooong time age, but I cannot come to terms with having a child who is knocked unconscious the vast majority of the time. I mean, what's the point of even being alive?
Thankfully today, she did wake up a bit and smiled and played. She started jerking a little about 15 minutes before her regular dose, and we gave it a bit early and it stopped them. I'm not getting my hopes up, but maybe she can adjust to the meds just enough to be conscious at least some of the day.
We are keeping her on hospice for the time being. We still don't know what her body is doing and she's still not what I would call "stable". Hospice said we can do testing and stuff anyway. We know we aren't looking for a cure, just a way to better her life. So my first concern is genetic and chromosomal testing. For some reason, this was never done, even though her injury was never explained. I've noticed some "odd" characteristics she has, plus all the non-CP related health stuff, and just simply the fact that it is NOT NORMAL for a baby with a HR of 140 to not breathe after birth, I think we may actually find something going on with her that might explain some things.
So that's most of it (a detailed post would take hours to type out). Charlie's body appeared to start shutting down. The neuro crap is probably to blame. We don't know what to do except drug her. And maybe somehow, if she's hell-bent on living, we'll find a way for her to actually be conscious through some of it.