1/3/2015 Team Everly Update — Everly has been doing really well the last 24 hours, but she has some obstacles to overcome in the future.
We’re getting better at identifying why Everly is fussy. She consistently has a fit an hour after she eats, so I might start timing it so the nurse can get ready ;) Colby helped change Everly’s diaper for the first time today.
So far, the test of giving Everly Tylenol looks to be successful, at least from our layman’s perspective. Typically, Everly will need about 4 extra doses of her pain medicine Fentanyl on top of her base dose over a course of a day to preemptively calm her before she receives care or after she gets too worked up and needs to be calmed down.
With Tylenol in the mix, Everly has only needed 1-2 extra as-needed doses. See also seems to be tolerating care better. For instance, she didn’t need an extra dose of pain medicine when we changed her diaper this afternoon. The advantage of giving her less Fentanyl overall is that she’s less drowsy and therefore is doing more of her own breathing rather than letting the ventilator do more of the work.
Everly’s left eye is starting to get more puffy, which is sad to see. The caretaker on today’s shift has been trying to keep her cooler and has repositioned her bed so her eye is less below her. There’s not much we can do, except for trying to slowly reposition her at her own pace.
The biggest obstacle for Evelry in the coming days is figuring out where to put a second IV, or figuring out a plan for how to give her the medicine she needs without an IV. Her current IV is in her umbilical cord. But the vein in your umbilical cord closes up naturally in about a week after you’re born. The medical teams wants to stop relying on this IV within 7 to 10 days and is discussing alternative access points. Tuesday is likely the day it will come out and it’s also the day we’ll have all teams caring for Everly in one room to make sure we have a plan.
The team is currently working on alternatives to a second IV as putting in a second IV in somewhere her her arm or head has disadvantages for her. We could break her arm, and a scull IV apparently isn’t a good longterm solution. Rather than giving Everly what she needs via a vein, the team is seeing how much we can pass along through her mouth.
One of her goals is seeing how much we can increase her feedings. Today she’s up to 23 ml from 16 yesterday. She gets 23 ml of milk every 3 hours. That’s one and a half tablespoons every three hours. The more she gets in her stomach, the more she can tolerate medicine we give orally. We can tell if we’re over feeding her because before each meal we check to see how much she has left in her stomach from the last meal. So far she’s been enjoying the bigger meals. She must have her daddy’s appetite.
We gave her a dose of morphine via her stomach today when she was fussy and she seems to tolerate it well. Morphine would replace Fentanyl as Fentanyl can’t be given orally. Some drugs can be given orally and some can’t. Pamidronate can only be given by IV for instance. That’s the drug that can strengthen your bones, but Everly’s second PAM treatment is still scheduled out for another 2 months so we have time to figure that out when the time comes.
It’s pretty funny my wife works at a natural wellness school because we’re so thankful and reliant on non-natural drugs at the moment. When they are needed, they are needed in a big way.
Today we had one of our favorite nurses so we didn’t camp out at the hospital all day and we’re getting more used to our new normal, but it’s about time to ditch our hotel and setup camp from our house again.
The other day I was holding Everly’s hand and I was thinking my arm is getting a little sore in this position. Then I heard Everly say, suck it up dad. I’ve got 40 broken bones. I think you can handle your arm’s restlessness when you hold my hand.
Before we had Everly, we had a phone conversation with an adult with OI. He told us that he’s always had breaks and that he’s always had a high pain tolerance. It’s his normal. He even told us the thought of walking scares the bleep out of him, but breaks don’t. Normal isn’t the middle most point in a spectrum. Normal is every single point on the line between the beginning and the end.
Thank God for bringing us such a fighter :)
Today’s lesson: Hardship makes you deeply thankful for everything God gives you.
Please pray that:
- Everly will be able to breathe more on her own.
- That God will bring us all closer to Him.
- That we’ll figure out a good plan after Everly’s umbilical cord IV is no longer viable around Tuesday, and that
- We can reposition Everly without upsetting her so her left eye becomes less swollen.
On Sunday we celebrate Everly’s first week outside the Baby Bump Motel.
Much love from Team Everly