Someone who does not get mentioned very often on this site is Dorrie’s grandmother, a.k.a. Grammy. She has been coming to spend the day every Friday to help with the housework, and usually every other Sunday just to hang out with her granddaughter and give Mom and I a break. While we were in the hospital, we were always being asked by the staff, “Do you have any family living nearby who can help out?” And Grammy was always our go-to relation. If not for her, the kitchen and bathrooms would never get cleaned, the bed would never get changed, the laundry would pile up… it would not be a pretty scene. So, I just wanted to start out by posting a thank you to Grammy, without whom Mom and I would be a couple of burned-out zombies by now.
The other reason I wanted to post was to report Dorrie’s first outdoor excursion last weekend. Grammy has been saying all winter that once the weather was nice, she was going to make sure that we found the time to take Dorrie outside for a walk in her stroller. Mom and I suffer a lot of intertia when it comes to moving our daughter around, because along with her must come her ventilator, her oxygen, her suction machine, her pulse oximeter, and her emergency oxygen, plus we have to rearrange her ventilator circuit to take out the humidifier and replace it with an HME. However, we both also agree with Grammy (and the developmental specialists we have talked to would agree too) that it is good for Dorrie to get to experience places other than the living room where she spends nearly all of her time. So, last weekend, while Mom was off at a book sale all morning, Grammy and I bit the bullet and packed Dorrie up for her first official stroller ride.
We did not go very far — just down the street, around the corner, down to the next corner, then back up. For the first half of the trip, Dorrie was more interested in staring at the little warning sticker on the inside of her car seat, but we stopped in each place where there were trees providing shade, and eventually she decided she felt like checking them out a little. Since it was our first trip out, we did not stay out for very long, but Grammy is planning on motivating us to make it a regular thing whenever she is around and the weather is nice, so I am sure there will be more tales of Dorrie’s adventures in the great outdoors to come.
In news I’m sure everyone is tired of hearing about, the nursing problem continues unabated. After managing to show up for two whole nights in a row, the latest superreliable nurse dispatched from the agency called in both nights last week. I expect that means she’s gone for good, but we shall see if they continue to string us along with promises of her return.
The rest of the week has been pretty calm, and Easter was nice. Dorrie was in the mood to perform, and spent quite a while lifting up her head to look at the mutant singing ducken brought by Grammy. Then I went out to lunch with mom and my brothers while Bob stayed at home to watch her. We brought back food for him and Dorrie decided to scoot around on her back to investigate what was going on at the sofa. She discovered that the sofa is surrounded by evil ceramic tile which does not feel nice to someone pushing herself around on her back.
The biggest negative to the day was Dorrie’s failure to take an adequate nap, which led to a meltdown, a pukey and finally a so sleepy baby who couldn’t stay awake until bedtime and instead slept from 6-9:30pm and then woke up again.
We also had a fun adventure with the ventilator! Since Dorrie was asleep at the usual time we get her ready for bed, I wasn’t able to change the vent circuit. As she was still up around 11:30pm, I decided to do it then and just get it over with. Bob had already gone to sleep, but we do it by ourselves often enough, so I didn’t figure it would be a big deal. (I bet you think you know where I’m going with this, and perhaps you do, but bear with me anyway.)
The change itself went off without a hitch. I fired up the vent again to run a leak test before reattaching Dorrie to it. FAIL! The worst failure I have seen yet, accompanied by a sort of sucking straw noise I was sure meant one of the hoses had a hole in it. But I could not see one or feel air coming out, so I ran the test again and this time it passed. This time I noticed that the bag of inhalation water that runs to the humidifier was not only empty, but that the leak test had caused the bag to inflate like a balloon. Ha ha, I thought, how amusing. I changed the water bag and got Dorrie hooked up.
Then the ventilator began to alarm. HW FAULT it said. WTF I said.
The vent manual, which had been hanging around the living room getting in everyone’s way for nearly a year, was suddenly nowhere to be found. The vent seemed to be working fine. Dorrie’s sats were 100. WTF I said again. HW FAULT said the vent, then beeped some more.
So I went upstairs and woke up Bob and made him come down and see it. Neither of us could guess exactly what the HW FAULT meant, so I got out the computer and started trying to find the manual online. I found it quite easily TODAY, but for some reason last night Google was being obtuse. We called our vendor, who paged the on call person, who paged the on call RT. By that point the vent had changed its mind about alarming and was quiet again. The RT was at least able to assist us in figuring out that HW FAULT meant that probably one of the sensor leads had gotten moisture in it and was helpfully letting us know in the most confusing and panic-inducing way possible. Our best guess is it happened when the vent decided to inflate the saline bag with air.
Finally a picture of Dorrie in her Easter finery. I’ll try to upload a more extensive picture post some time this week.