Happy Thanksgiving!.....& December!
GOODNESS.
Nothing bad, all good things - just busssyyyyyyy.
Sunny's first Thanksgiving NOT in the hospital was really great. We took her on her a road trip to spend her first night away from home - & not in a hospital.
It was daunting, a tad overwhelming, and we had very little motivation Wednesday afternoon.
But we decided to plan on going, but just know & remember that we could pull the plug at any point.....on the plans, not Sunny's equipment.
We were both stressed about different aspects of packing Sunny's things; I was intimidated at the thought of packing Sunny's home ventilator that's on the stand with all the things. Heater/humidifier, water bag for the heater/humidifier, oxygen tank, feeding pump, and trusty fan. Chris wasn't at all, so he tackled that while I pulled together Sunny's other supplies - trach care things, g/j-tube supplies, more water bags, medications, syringes for meds, drying rack etc etc, plus all the usual baby thinks like clothes, blankets, clothes, food, diapers....
Like I said, it was a lot and it was daunting. But we did it, and it feels so good having it under our belts. I'm proud of us, and I'm proud of Sunny & grateful for her being so kind and patient with us.
Earlier that week, her heart rate had been a tad elevated and she was ever so slightly more nauseous. She'd normalize in the evenings, but I was still anxious about being far from home and "our" hospital. Sunny's most perfect home nurse Erik said, (bluntly, lovingly, and encouragingly) "She'll be pukey wherever she is." And that was, oddly enough, encouraging enough to get us on our way.
Sunny's first Thanksgiving was spent with her intubated and heavily sedated. We had a Thanksgiving dinner at the Ronald McDonald House, they did the best they could & it was good, but it wasn't the same. Even though it wasn't, this Thanksgiving felt like her first. She met some more family and friends, and took a reputable thanksgiving day nap on the sofa. She was a champ, and we are so, so grateful.
We remembered to do our homework, and did some trials with deflating the cuff on Sunny's trach. It was a few hours each time, and she never seemed to notice. We watched her, and her pulse oximeter number to make sure there weren't any changes that weren't good.
This last week, we had a marathon of Doctors appointments. A visit with her Cardiologist on Tuesday - she agreed with GI's suggestion(from 2 weeks ago) to lower Sunny's feed amount because she's big, and she also adjusted the dosing frequency of one of her medications(!).
Sunny's pulmonologist from Nemours had told us that he sometimes does clinics at the Cardiologists office, and that he'd happen to be there the day of her appointment. He stopped in to ask how the deflating of the cuff trials went. I told him she didn't seem to notice, and he said, "Great! Well, the net step is doing some trials off the vent!" (!!!?!!!!)
Ever since her flow-restrictor was placed, it's something we have wondered and thought she could possibly do. While we've hoped for this day/these words, it's scary to think about not having her connected to a machine that would let us know when she wasn't breathing. Even just having her breath rate number lit up on the screen has become a helpful parameter in gaging how she's doing. I forget that most parents aren't privy to their child's pulse at any given moment. Your brain is a weird thing. It's amazing(and scary) how adaptable they are, and how quickly norms can be established.
Anywho. This week we'll begin those OFF THE VENT trials.............
It's small. He said to start off doing 5 minutes off, twice a day - watching her blood oxygen saturation and her work of breathing, and then slowly adding a minute daily. So, slow and steady lung workouts for sweet & chunky Sunny-buns.
She had her 1 year appointment with her pediatrician, that went well. And then her last appointment this week(it honestly feels like we ran a marathon), was back at Nemours for her Developmental Evaluation. It was done by the Psychologist that had come to visit with me, they check-in on the parents of kiddos who've been admitted to the hospital for longer, and it was so nice to see her again. She had a student with her and together they were assessing Sunny's strengths, and ways to help support her more. They commented on how engaged she was, and how she curiously eyeballed them while they talked about her like she wasn't in the room;) Her neck strength continues to improve, and they said that overall, she was doing well and was showing progress since the time she spent in-house!
As we were walking out, I mentioned how she was given a 5% chance of survival and something about how amazing she's doing now. Erik later asked what the percentage was again, and just looked at her and shook his head. We are so grateful for him, but we are NOT grateful that he's just temporary until a nurse can fill the position. Erik has a different role at the agency & isn't anyone's full-time nurse, he fills in the gaps, so unfortunately he'll have to move on at some point.
We're so grateful for Sunny. We're grateful for friends and family that support us from near and far. We're grateful for people who travel to see us for even just a few hours. We're grateful for Erik. We're grateful for being able to spend thses cozy, cool months at home with our girl. We're grateful for you, and for your prayers and care for miracle Suns.
OH! a night nurse started this week! It was marvelous having him so that I could sleep the nights before 2 out of the 3 appointments this week. He's still new, and it always takes some time for both parties to get used to how we all do things, but I'm SO THANKFUL to be able to sleep at night again without taking rest from Chris during the worknight.
Prayer requests:
- Nursing for the day shift. I seriously canNOT imagine someone fitting as PERFECTLY as Erik (and trust me, we are trying to bribe him with homemade lattes, fresh baked sourdough bread, croissant donuts, and Sunny's cute cute self). But hopefully, there is someone out there that can fill the LARGE shoes that Erik will leave.
- For general health for all of us, and for UTIs to stay OUTTA here/Sunny's urinary tract.
Thank you!
Love,
Chris, Alyssa & Sunny
Comments
Post a Comment