Clinic days.

12 May

Thank you all so much for your kind words on my last post. I can’t tell you how many times over the past months I’ve started an update post like that only to get frustrated and depressed in the recapping of it all. Sometimes it’s just easier to talk to my husband or our care providers or my parents or anyone who knows the ins and outs of everything, instead of explaining it in detail, in writing no less. The weight of explaining everything is heavy and for so long I just couldn’t bear it.

That said, after your comments, I’m so glad I did! Now I feel like I can come here and update you much more easily on how she’s doing, now that you’ve had a primer in all things bowel rehab. This Thursday we go to clinic. Clinic is where all of her care providers – the home PN team, the surgeons and the nutritionists all come together to see how she’s doing and see whether or not any changes need to be made in her “plan,” aka PN, meds, etc. A lot of their decision is based on her weight, so every time we go we’re always holding our breath when we get taken back and she is weighed.

We stopped her last round of antibiotics on Friday and already we’re seeing signs of the overgrowth returning. It’s crazy how fast it rears its ugly little head. She’s already taking less formula, which makes us worry what her weight will be. We try to compensate with more high-calorie solids if we can but sometimes she’s not so interested in those either. We’re also a little nervous because when we were at clinic three weeks ago, her bloodwork looked a little “dry,” aka dehydrated. This is concerning because even if she’s able to maintain her weight without PN, if she can’t maintain her hydration then we may need to keep the line in for longer (who knows how long, some folks have them indefinitely) to continue giving her IV fluids to support hydration.

This is her first weight and bloodwork since we stopped PN altogether so there’s just a lot riding on this appointment on Thursday. And it’s such a long day. We first take her to the lab for bloodwork. Even though she has a central line from which you can draw blood, they always insist on an arm stick for the blood draw. So that sucks to watch. Then we’re at clinic for a good 2-3 hours while we wait to give them our update and then wait for them to go huddle and make a plan and then wait for them to come back and discuss it with us. She usually ends up missing her afternoon nap altogether which is tough for all of us. I’m so glad that DH always takes the afternoon off on clinic days to come with and help us. It’s such a huge help to have him there and talking to the surgeons, asking questions, making the plan, etc. is really a team effort.

So that’s what we’re looking at for this week. But once we get through clinic, we have an awesome weekend ahead of us! We’re celebrating Juni’s birthday on Saturday and cannot wait to come together with our family and friends to celebrate the gift she is. I’ll have more on that soon.

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One Response to “Clinic days.”

  1. Courtney May 12, 2014 at 8:42 pm #

    She’s turning one already? Good god, this year has gone fast!

    Good luck on Thursday. It sounds brutal. I hate that they have to stick her arm. 😦

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