Sorry I didn't update yesterday. My laptop has been freezing every 10 seconds and I haven't been able to figure out how to update on my phone. It has been frustrating, so I didn't want to deal with it. So this morning I left Ellie for a few minutes to go to the Ronald McDonald Family room.
This is such a wonderful service for families. It is different from the Ronald McDonald House. (Same Organization). The Ronald McDonald House is a LARGE house not at the hospital. They provide bedrooms for families to stay at while their child is at the hospital. They have a large stocked kitchen that families can prepare meals for themselves. They have a shuttle that goes back and forth to the hospital several times per day.
The Ronald McDonald Family Room is in the hospital. It provides several bedrooms that a parent could reserve to stay at overnight while their child is inpatient. For example...you are sick of sleeping in the recliner in your child's room and would like one night of sleep in a real bed. You may also reserve a room during the day for a nap.
There is a really nice large kitchen stocked with pot/pans/stove/oven/dishes/microwave/fridge/freezer/utencils etc. The fridge, freezer and pantry are stocked with food that is free for parent to eat and or prepare them selves a meal.
There is a TV area with couches. A library with books you may borrow. A craft area. Laundry facilities to do some wash. Nice private shower facilities (much nicer than the ones in the hospital). And computers for parents to use (which is where I am at now).
There is also a parent resource hospital employee here. She helps parents with whatever they need. Recreation, hotels, restaurants, support groups, etc... If she doesn't know, she will find it for you. Shout out to Cindy!
The very best thing about the Ronald McDonald Family Room are the meals that people/businesses/organizations provide. People who want to help call in and sign up for a day that they agree to come cook and serve a meal to the families staying in the hospital. You prepare the meal for 60 people. It is usually at 6 PM. You supply all the food and labor. It is soooooo nice. Please consider signing up. Once in a while there are breakfasts or lunches...but it is typically dinner. If you want to volunteer call PCH 1-801-662-1000 and ask to be transferred to the Ronald McDonald Family Room. (I'm sure they have a direct phone number...but it is easier for me to use one phone number for everything). They are usually booked out a few months.
Wed night she desatted once or twice. This is where she obstructs her airway. We have recently found that if you do a jaw thrust (push her jaw forward) like they do when doing mouth to mouth it helps almost immediately. This desatting and obstructing is something we have struggled with multiple times per week and sometimes multiple times per night for years now. This new jaw thrusting has been great. It has been really effective.
So Wed night she desatted to the high 70's and we brought her sats up with jaw thrusting and cranking oxygen up to 100%. Previous to the desat she had been at 45% O2. The resident was there when the desat happened and he wanted to bump her o2 back up to 60% after. I tried explaining that she was just obstructing and that we didn't need to bump it up after the fact. Bump it up during the desat for sure, but not after. We had words. ALMOST nice words. I was trying to be nice...but just couldn't quite get there. He wanted to take it conservatively. I consented although I disagreed. It's fine. It is now slightly awkward when I see him.
It is hard because they tell you to "speak up"...literally those are the words they use. And yet when you do, it becomes awkward.
So we spent yesterday (Thurs...day 3) slowly lowering her o2 back to where it had been on day 2. When the attending came around without the resident I spoke with her about my concerns and she was fine with it and said she would pass the info on to the resident.
The rest of Wed was uneventful. She was awake all day. We watched a bunch of movies. She did not care for the new Tarzan movie. She was doing fairly well. She is not in pain. She is still needing bipap to help her breathe. But thankfully no intubation or sedation.
Thurs afternoon they moved us to a different room. I am bummed about it. We were in a HUGE room with a private bathroom. AWESOME!!!! They closed down that wing because they had less patients.
The room we got moved to is in the new part of the ICU which is nice and we now have windows (which the HUGE room had no windows) so that is nice too. But now we have neighbors and no private bathroom. Boo! It is still a pretty big room. (they all are in the new section). It' is fine. We are in lucky bed 13!
The family came and visited yesterday (Thurs). The kids were happy to see Mom and Ellie. They all got a slushie (one benefit is PICU is free slushies)!
Thurs day we got down to 30% o2 for a few hours but then she couldn't quite maintain it. So we had to go back to 40% o2. That's OK. She's just not quite strong enough yet. She will get there.
After going back to the 40% o2 we bumped down her bipap settings (this is her first bump down since being admitted). So this is huge. It was a tiny step down...but tiny steps are what are going to get us home.
Thurs at midnight she had another desat. More jaw thrusting. But they did not bump up o2 after. So yea! Desats are normal for her it does not mean her virus is progressing.
She slept through the night.
She has been coughing up a bunch of junk (this is good). We changed up her nebulized treatments a bit to try and help her thin out and cough stuff up.
Fri (day 4) she has been awake and doing well. She has been able to tolerate that small step down in the bipap settings and the 40% o2. I am assuming they will try to step down again today. We'll see if she's ready for it.
It is mostly a waiting game (with lots of movie watching). Her sister (Millie) is jealous she gets to watch movies all day.
She is headed in the right direction. Hopefully we can avoid catching something else while here.
Thank you all for your love, prayers and concern. Keep it up!
(Sorry for the lack of pics...technology difficulties)
4 comments:
When will the doctors get that you are way beyond the expert on Ellie? Back a few posts ago you talked about her seizure meds. At Brian's last appointment with the neurologist we discussed the cannibas. He is a candidate. She said she only has one patient who uses it alone with full control of seizures and no side effects. She does not see perfect results for everyone that uses it. We decided against it. Besides having to get spend $200 just for a paper that says you can have it on your possession. He is beginning keppra for the first time. We'll see if it works. I'm Nervous about three side effects. Such a hard thing to manage!!
*the not three
Yes, we would love cannabis...but I am nervous about the money also. At first I thought the Keppra made her agitated. But I think she is OK with it now.
Good baby steps Ellie. You're doing great! Thanks for the detailed post Mikael. I love to read it.
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