Monday, February 1, 2016

Ch- ch- ch- Changes

If you've followed our journey for a while, you may be thinking that it should've been time for Judith's next quarterly CF visit. You would be right, and if you weren't thinking it, well, we had our latest quarterly visit last week. This one was different, though, as there are a lot of changes and adjustments happening.

Before I talk about how her visit went, I want to take some time to explain the back story, especially since I realize it's been almost 2 months since I last posted.

We've been patients at the CF Clinic at Penn State Hershey Medical Center ever since Judith was first diagnosed in April 2011, and both of her inpatient stays to date have been in their Children's Hospital. Our CF team, consisting of her pulmonologist, CF nurses, respiratory therapists, dietician, and social worker, was a good team, and we were mostly happy with the care she was receiving. Mostly. If you know anything about CF, you'll notice that there is something major that is lacking from the care team: a gastroenterologist (GI) who specializes in CF. Yes, PSHMC does have a pediatric GI program, but none of the doctors are also specialized in CF.

For Judith, whose CF presentation leans more heavily toward GI issues, with pulmonary issues being the second presentation, this was a problem. I know it's a problem for other patients at the clinic as well, as many of the parents in our support group have pointed out. One of the moms led a campaign to try and get a CF GI on staff, and as far as I know this is still a work in progress. I did help by writing a letter, but after months to almost a year of discussion between John and I, we ultimately decided that we can't continue to wait for the needed specialist to come along, especially since Judith's GI and weight issues aren't under control, nor have they been for a while. Our pulmonologist, whom we truly liked a lot, was trying his best, but it boiled down to the fact that he's a pulmonologist, not a GI specialists, and there's only so much you can do when you're starting to get further out of your league of specialty and knowledge.

This means that, to get what we need, we had to switch clinics. We could have opted to keep Judith's pulmonary care at PSHMC, but, since we know we'll be seeing developmental pediatrics at The Children's Hospital of Philadelphia (that's a story for another post) by the end of this year or beginning of next year, it was easier for us and the new team to have all of her care in 1 place. While we were sad to leave our team at PSHMC, we feel better knowing that we'll have all of the specialists she needs for her CF care.

Now, back to her visit. The drive into Philly actually was not bad at all, and I know that this was purely because of timing; since we were going midday, we avoided the nightmares of rush hour traffic on the Schuylkhill Expressway and other major highways en route to CHOP. Finding our way around the building was interesting, because it's massive and we're used to a smaller campus. Now that we know where we're going, it should be easier!

The visit was longer than what we're used to, but Judith will adapt; our past appointments were typically about an hour, sometimes slightly longer, but this time we had a few hours to pass in the exam room while each team member came in to talk to us and check her out. All that to say, I need to come up with an arsenal of entertainment items for her so she doesn't get too bored!

The pulmonary part of her visit went really well! Her new pulmonologist didn't detect anything unusual in her lungs (meaning they sounded clear), so the increased treatments we've been doing due to respiratory infections seem to be helping. We're proceeding as normal for now. We're waiting for her throat culture results, and I'm keeping my fingers crossed that nothing new turns up.

The GI part of her visit was more of a mess. I want to start by saying that both John and I really like her new GI doc, and she was really, really good with Judith! We have some bigger issues on our hands than I thought, though, because Judith actually lost 2 lbs. since she saw a general GI at CHOP in November. New eating behaviors have cropped up over the last few months, one of them being that she often won't eat dinner, mostly by choice, but sometimes because she falls asleep early in the evening, and doesn't want to wake up to eat. I was expecting Dr. M. to want to run a bunch of tests, but I wasn't quite expecting as many as she ordered; she wants to screen Judith for zinc deficiency and Celiac disease, and also ordered a gastric emptying study to make sure that food is passing through Judith's stomach in the time frame they'd expect or if it's delayed. And naturally, because of how CF affects the pancreas, we're going to run another fecal elastice test to get current numbers and see how well it's functioning.

I have a feeling that we'll be opening dialogue about g-tube placement soon, because Judith's percentiles keep fluctuating for BMI and weight. This is another thing John and I have discussed at length, so if/when the team brings the topic up, we're ready and prepared for it. I did mention something about it at her appointment, and Dr. M. wants to wait and see what some of the test results look like before we seriously discuss placing a g-tube, but we know that moving forward with the surgery for placement is definitely in the realm of possibility at this point. Granted that's going to be another huge adjustment for us, moreso than the adjustments we had to make when we added pulmozyme and hypertonic saline to the routine, but I feel confident that we'll adjust quickly, especially since we've already accepted it as a potential solution. At this point, we're all for anything that's going to help us get the necessary calories into her so she can build up her weight/get some reserves in her body so when she is sick and loses weight it's not a critical situation like we're in now, and since it would have the added bonus of removing some of the battles surrounding food and meal times, it's going to relieve some daily stress and tension from those times of each day.

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