Peyton has managed to stay ER-free since May 3rd! This is somewhat of a milestone in and of itself. Prior to this, we were showing up at the ER every 2-3 weeks! Big praises to God for allowing this bit of peace in our lives!
This past week has been quite busy with lots of appointments. I'd like to say we're through with appointments for a while, but we're not. Here's an update on what's new with Peyton:
We saw a new doctor last Monday. This one is an "Infectious Disease" doctor. The pulmonary clinic had consulted with him a few times on Peyton's medicines for her respiratory infections, so he offered to see her himself. The thrush we've been treating for a few months, according to him, is not thrush! I'm not sure he knows exactly what it is, but he knows what it's not. We're no longer treating for thrush. It could just be a nasty coating on her tongue from all the meds she takes. As for the treatment for her respiratory illnesses, he's made a change. The pulmonary clinic had already taken Peyton off of the one antibiotic which was clogging the tube. It was changed to a different one. She is also on a second antibiotic. Has been this whole time. The ID doctor has taken her off of that one and put her on a new one. So, she's on two new antibiotics now. She's taking zythromax and zyvox. If she starts to show some improvement in the next four weeks, she'll continue on this treatment plan for a few more months. What's a few more months considering she's been treated on double antibiotics continuously since February 2nd. If there is no change, we'll stop the antibiotics altogether, as we would have basically determined that the bacteria we are trying to treat with these antibiotics is probably not what is causing her to get so sick. She's been on the new drugs (combined) for nearly a week. The only change I'm noticing is in the form of horrible, nasty diarrhea. She's spent the better part of the last year and a half on antibiotics, and this has become a way of life...but this...this is worse than anything she's had in a while. Poor Peyton. Hopefully it will improve in time.
On Thursday, Peyton saw the GI doctor. She's in the 43rd percentile for weight, weighing in at just a little over 38 lbs. There's no muscle to that weight. What "excess" there is is in the form of flabby little upper arms, a face that's rounding out, a belly that's getting bigger, etc. Don't get me wrong...Peyton is NOT FAT. Far from it. We discussed her weight. It's been stable for the past little while, which is good. We don't really need for her to be gaining weight right now. That doesn't benefit anyone. The doctor is happy with where things are at from his perspective, but suggested that if her weight increases a bit, to cut back on her pediasure by half a can a day and replace that volume with water or pedialyte so she doesn't lose the fluid intake. For now, we'll keep doing what we're doing.
On Friday, Peyton had her 5-year check up with her pediatrician. It was relatively uneventful. It resulted in a call to the genetics clinic to discuss some possibilities with the doctor and how to go about testing. This has to do with one of my prior posts where I had said that there was something brewing. I'll keep it under wraps for now, but might involve some Genetics testing (if possible) in the form of a muscle and/or skin biopsy. After speaking with the geneticist, I'm not sure what she'll have tested (if anything), but he's going to see her on June 1st rather than wait til our previously scheduled appointment in September. As for the 5 year check up, all went well. The doctor had recently traveled to Lourdes, France with a group of "malades" (pilgrims) to visit the shrine there. He'd actually talked with us prior to all of Peyton's serious illnesses of late about going on this trip. It would have been last year's trip, I believe. Peyton just couldn't go - the people who determine eligibility for the trip felt it probably wasn't in her medical best interests at the time, since she required certain equipment. Now a year has passed and, while we'd love to go, unfortunately I'm sure it's not even an option with everything we're dealing with now. Anyway, the pediatrician told me that some of those people were asking for Peyton and they prayed for her at the Grotto, which was really special. He gave me a little bottle of holy water from Lourdes for her.
We will start out this coming week with a visit to the ENT Monday morning. Should be fairly straight-forward. This is an area where we could get into "things which we don't want to get into". When Peyton was at her worst over the summer/fall, Ron and I made some decisions with respect to her treatment plan/care which meant deciding to NOT do certain things. One of those things is a trach. There are a few surgical options which *might* potentially help Peyton - they all would involve a trach. Not doing it. Those decisions are fairly personal and they were made with much thought and with Peyton's best interests in mind. So, as for the ENT visit, I expect him to NOT go into surgical options, because he knows what our decisions are. I expect him to check her ears, nose, and throat. I expect he'll say the tubes look good (as no other doctor recently has indicated they are anything other than "good"). I expect he may reference her sleep study which she had a few months back. Maybe we go over that. Maybe we discuss how the bi-pap is going. I expect we'll be on our way fairly quickly.
This week ahead is our last week with our current nursing agency. We'll move on to another phase on the 31st when we do the admission with the new agency. I've got an email in to them to see if they have an idea of what our first week will look like in terms of staffing. Prayers are very much appreciated for this!!
We also have Peyton's IEP meeting with the school, so we'll see how they think she's doing and what our summer plan is. School is out on June 3rd! That sure crept up on me quickly! June 1st is the aforementioned genetics appointment. Back to the ID doctor on the 6th. I think after that we might just catch a bit of a break from doctor appointments!! There always seems to be one or two times a year when we're just overloaded with doctor visits. April/May has been one of those times. Glad it's winding up!
Will update on how those last few items turn out. Praying for improved health for Peyton now that she's settling into these new antibiotics. Praying for some rest for her (she's not sleeping well) and for me (I'm not sleeping well)!