Home soon.

Almost ready for home.  Looks like Wednesday. 

Mallorie is having some trouble getting in as much as she needs (by feeding tube) under normal circumstances, and since she's actually 2 lbs or more below her pre-February weight, this is a big deal.  I've started a list of high-calorie foods that can make her feedings more concentrated, like nut butters and avocado, but right now we're working on increasing the volume she takes in at a feeding.  There seems to be a back-up plan of nighttime continuous feedings, and even though I am not crazy about that option (I think stomachs need to rest, sometime), I am even less crazy about having to continue waking up to do nighttime periodic feedings like now.

I love the attending who is overseeing the team caring for Mallorie right now.  She is all about the details, and isn't missing the fact of Mallorie's weight loss and the need to make sure she will be able to continue doing well at home.  She reminds me of Dr. B in some ways.  So if she has a plan, I'll do it and stop trying to figure it all out myself.  Also, there's an interesting dietician somewhere around here who came to see us last week when we first got to this floor, and she has some recipes she wanted to share.  I think if she comes up with what she thinks is a good "formula" for weight gain, then it will be a good place to start.  I know that as tired as I am, when I start adding going back to work into the mix, it will be easy for me to lose sight of the whole picture.  So I'll happily take all the advice and help I can get from them. 

Our house was broken into and some things taken when John was out here with us this time.  It's been hard on the kids, and hard on us, and it's emotional for me going back knowing that this happened.  It really stinks.  It was just "stuff," thank God.  That's the part I'm trying to keep in my mind.

Why we are here

I wrote this yesterday, at about 2 pm, but I needed to get permission before posting it:


We are on the PCU unit now. Mallorie's doing GREAT. And today I know why we are here.

Sometimes it's only clear to me later on, that there were very good reasons for the specifics in my life. But it's a happy time when I can see good things in the present. My "outside" job involves working for a state program for children with medical needs. I love it. Times like now, it's hard, though, to think of being away from Mallorie at all, so it is really helpful for me (because we do need the income from me working) to be reminded that I am doing what I am supposed to be doing, when I work outside the home. If it ever becomes clear to me that I'm not, I'll be happy enough to stay at home all the time.

So today we moved back to the PCU unit, and into another one of those four-bed "pods." Here's why you won't hear me whining this time: Today I met Evan's sister. She's Mallorie's nurse. In our state, among people who work much with the program I work for, Evan is a legend. And his mom, Chava, is a warrior. She has poured hours of her life and much of her energy into keeping people who influence policy aware of the needs of children with medical needs. (She also works outside of her home, which really helps me not whine.) I've heard her name and Evan's several times over the years, because I originally worked in the same region where they live, but she sort of seemed to me like a far-off celebrity.

When Mallorie was still in the NICU, a friend in Austin kept telling me to go meet Chava. She told me that Chava worked extremely close to where Mallorie's NICU was, and my friend said she would not only provide a wealth of information, but as a mom of a young man with medical needs, she could provide encouragement the way only someone who has "been there" can know how to do. Those were crazy days, and I never did manage to get in touch with Chava, but I still hear her name from time to time. Parents who have been helped to find supportive programs sometimes drop her name, like they've personally met a celebrity, and I swear they look to see if I recognize the name. I get that, now, because today, I met Evan's sister. And I sort of feel like I've met a celebrity, too. Meeting her reminded me of Evan, and of her mom. It reminds me that Mallorie does make a difference for others, too. Not just for our family. And because we get to have her in our family, she's changed us, and we make a difference, too. And John and I and our other children go out and impact the world, just as Evan's parents and sister do.

Recovery

Mallorie's surgery was done by 1 pm, and the surgeon, Dr. O, said she did well.  Her anesthesiologist, Dr. T, told us this morning that it was a big surgery and there would be a lot of pain, so she spent a lot of time collaborating with Dr. O and with the PCU attending doctor about what would be the best way to keep her pain-free and still manage her airway.  As no one could predict how much pain medication it would take to keep Mallorie comfortable, and whether it would impair her breathing, the anesthesiologist was not sure that taking out her breathing tube, only to potentially have to replace it in an emergency situation, was the best plan.  She said that she and the attending doctor from the PCU had discussed the possibility of having her spend the first night in the PICU, so it was no surprise when the surgeon told us that she was definitely going there. 

A lot of time and concern went into making sure Mallorie had a safe and pain-free surgery, and planning for her recovery.  The PICU nurse who first had her today asked us a lot of questions about how Mallorie would show discomfort, and she spent a lot of time advocating for her to have more pain medication. It was a very busy "admission" for her, but by the time she left, Mal was resting comfortably and her heartrate and blood pressure were lower than when she first got here. 

Mallorie has been blessed to be in very good hands all day today. 

Here are the gentle hands of Dr. T: