My Mom came and sat with Ellie while I took the other kids to the zoo.
She was awake for about an hour while Grandma was here yesterday. Then once I got back her eyes were doing vertical nystagmis (eye"bulbs" bouncing up and down...my kids call them eye bulbs instead of eyeballs...kind of an inside joke). They were bouncing for about 45 minutes. We called the Dr. in. We didn't really think it was a seizure because she could still smack her lips and when we turned on the lights she opened her eyes wider. It seemed like she couldn't control her eyes, but she could control the rest of her body. Our best guess is that she was between awake and asleep, or REM (rapid eye movement). But it went away.
Her urine started having blood in it. They sent in a urinalysis and a culture. Urinalysis only showed blood. No infection. Culture is not back. They said it could be irritation from the cathedar. It could be kidney stones. They decided to wait 24 hours and see what tomorrow (which is now today) brings.
She woke up a few times through out the day.
She kept desatting when we would suction her or sometimes vice-a-versa she would desat and then we would suction her and she would come back up. It is never for very long and we can typically catch it and keep it above 85%. Not too concerning. You also have to put a shoulder roll (rolled up towel) behind her neck to prop up her chin and open the airway (like doing CPR).
I rode trax and frontrunner home last night. I have a free pass for being a WSU student and I was too tired to drive anyway plus gas costs about $50 for a roundtrip.
It was great to be home for a night and sleep in my own bed.
Between 7 and 8 last night her heartrate dropped into the 30's (very very low) temporarily for an unknown reason. They didn't really do anything before or after to cause or fix it. It just came back up.
She desatted once during the night...same thing as during the day.
Jason had a conference in SLC today, so he came down with me this morning to see Ellie for a bit. When we got here she was awake for about 2 hours. Not terribly awake, but about 60-70%. Better than a few days ago. She is back asleep now.
They are going to do a bladder and kidney ultrasound to see if they can pinpoint the cause of the blood in the urine. If she has a kidney stone...I...I...I don't know what I'll do. I'd like to say scream or cry. But I know I really wouldn't. And what are you going to do...deal with it...right?!?!?!? Besides it could be something worse like cancer or kidney failure or who knows what else. So for now...let's just wait and see and not play the "what if" game. After they do the scan they are planning on taking the cathedar out.
They are going to try and lower her bi-pap settings. I don't know...I'm hopeful, but not too optimistic.
They are going to give her lasix. If she seems to be getting worse they will do another x-ray and then a lung ultrasound to see if they could drain some of the fluid that is around the outside of her lungs. But they are hoping maybe the lasix can do the job. (She has fluid both on the inside and outside of her lungs.)
4 comments:
What a day. It seems like the zoo was lots of fun for you and the kids! That's good. The pictures are cute. I bet it was kind of fun to ride Trax and Front Runner. Isn't that one of your first times? Way good savings on gas ;) And! You got to sleep on your water pillow!! Neck relief...ahhh.
I can't believe Ellie's heart rate can get so low. That's amazing and scary. Will you please remind me what desatting means? I can't remember. I know it's a bad thing.
This was probably my 5th time riding trax. I will most likely be taking it again tonight. Because Jason has his work party at the Roy aquatic center with catering by Famous Daves. I will go as long as Ellie seems pretty stable. I'm not sure if I'll come back down to the hospital after or go home. We'll see. It's hard to plan too far in advance because I don't know how Ellie will be doing.
Ahhh yes...my beloved water pillow. I know...her sleeping heart rate at home is usually in the 50's. But sometimes it is in the 40's or even high 30's. I hate those nights. I worry all night long.
You know how they put that little red light on your finger? That checks the amount of oxygen in your blood. Otherwise know as your "saturation". The device it is measured by is a "pulse ox" or "pulse oximeter". So if you "desat" it means the oxygen in your blood is low. You are not getting enough oxygen. She normally "sats" above 95. Here they would like her stay above 90. Above 85 is not too scary...it will usually come back up with just a little extra oxygen or repositioning. Below 85 is when you start worrying more.
Thanks for asking questions. I know sometimes my blogs are a little scattered and rambling. Also it gives me something to do (answer the questions). I know somebody cares and is thinking of us. And it makes me feel medically savvy to know the answers. (I do firmly believe I should be given an honorary nursing degree).
Nurse Mikael? I like it!
Thanks for answering my questions and teaching all of us about everything. I'm impressed with how much you know medically. There are so many different combinations for her health needs and you seem to be on top of it all. It's inspiring and makes me wonder if I would be as good at all that too. We know where Ellie gets her drive and determination from...you! Love you Mikael.
Hope you get to make it to Jason's party tonight and have Famous Dave's!
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