I know it has been forever since I've posted, I'm sorry! The holidays really ambushed me, but Princess Audrey has continued to grow and shine! We are finally getting into something of a routine. When her first round of four dilations were completed, I had kind of thought we would just go back in every month or two to maintain her open esophagus, and it would be no big deal. But I learned quickly that each day is like a world unto itself-- for the first few days after a dilation, it was easy to forget our troubles. I'd start to resume what used to be our normal routine; getting together with friends, doing normal activities, she'd be making great progress on learning to eat by mouth... and then bam!, she'd start doing something to let us know that she needed to go in again, like choking on her own saliva. We'd go in for surgery again, and resume life, and then much too soon she was needing it again. It appears this will be our system for a while.
After her vocal chord was declared healed in November, she completed her first closely-spaced round of esophagus dilations and we began to work in earnest to overcome her oral aversion. Finally we began to have some big breakthroughs. All that sitting up at the table with us and watching her toddler brother had really been sinking in!
December 1 Facebook Update:
Just seeing her put her fingers in her mouth in this picture was a really big deal. For so long, she had had no control over the awful things being forced into her mouth and throat, that clamping her lips tight was a defense mechanism-- for months she even cried with her mouth closed. But as you can see, that has been healing in exciting leaps and bounds!
December 4 FB Update (written by Justin):
Dec 8 FB Update:
Dec 9 FB Update:
Dec 21 Facebook Update:
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Well, the doctors didn't want to dilate her before we left for our big trip to Grandma's for Christmas because intubation could aggravate her little case of pneumonia. She had been doing so well at the bottles, and then suddenly it started coming back up-- not as though she was emptying her stomach, but just, well, regurgitating the contents of her throat after about a minute. Strange, frustrating, and sad. But, we knew we could always fall back on just giving her G-tube milk, so we went ahead with the plan to visit Grandmas over the course of three weeks. Lots of driving, lots of craziness, and in spite of all of us passing the flu around it was a wonderful visit!
Audrey got her first visit to the beach. She told us that was coo!
Met three of her great grandparents for the first time, and a bunch of her cousins. This too was coo.
And to my surprise, she handled the long car trip really well. Of course, it helped that we let her take the wheel for part of it. And a silly big brother next to her in the car made a big difference too.
We weren't too surprised when she started being unable to swallow her bottles toward the end of the first week at Grandma's, but it was still sad and frustrating to tell her no when she finally was asking for them! We needed to get her established with some doctors out near Grandma's house for when she visits in the future anyway, so we went ahead and called around to figure out where to go. We were a little surprised to learn that it was actually best to take her in to the emergency room at the children's hospital, because otherwise there was just no way we could get in for an appointment or swallow study. So, we took one of our precious days with grandma, and spent it in the ER instead. At first when they planned to dilate her, they told us they were going to keep her overnight for observation. But after a barium swallow study and a couple of calls to Dr Downey, their surgeons determined that we should just stop feeding her by mouth until we got home, and dilate her right after getting home. They felt it wasn't worth the risk of possibly damaging her esophagus, and would rather have her home surgeon handle things. So, we did as they said. It went fine; the only bad part was that Audrey would cry and reach for drinks and we couldn't give her any. On January 9, after the trip, after the dilation, Dr D told Justin that when he got in there to dilate her, she actually hadn't seemed that closed. That seemed so strange to us, based on what we had observed. But we went forward with re-introducing the bottles. She had backtracked a little and needed to get used to them again, but within a little while she was enjoying them again. And then it seemed like just a few days later, BAM it all started up again. This time I was a little overwhelmed with other stuff happening in our life (among other fun, our 8 year old was just diagnosed with a heart defect), our surgeon was on vacation for three weeks, and we just weren't sure about ourselves after the last time when Dr D had said she wasn't actually that shut.... and we began to second guess ourselves. Could there be another reason for her milk coming back up? Could she have swallowed a little bit of paper or something that was blocking her up? We tested it again and sure enough, nothing could stay down. It was simplest just to stop giving her bottles again for a couple of weeks until Dr D got back. But poor Audrey, she let us know that that was NOT coo. She wants food, and she wants it bad. So I finally made some phone calls and ended up driving her to a swallow study early yesterday morning.
The outpatient clinic where we went for the study had a great playroom in the waiting area. Audrey is becoming stronger at sitting--still not super confident but more so every day--so I tried putting her in the little car and to my surprise she grabbed the little steering wheel and held on tight while I wheeled her all over the room, it was SOOOO cute!
February 8 FB update:
Audrey aspirated because she refused to take any more barium, and clamped her lips shut as they tried to give her more, and started to cry, then when she opened her lips to gasp for air, they poured barium in. Yeah. We would have too in that case. The thing that worried them was that she didn't start to cough, in order to clear her lungs. It implies that her reflux has desensitized her defensive mechanisms; the therapist inferred that her Prevacid dose may need to be upped. She's probably right; the dose hasn't ever been adjusted. The dilation surgery will stop most of the pooling and enable her to swallow completely. The past two weeks she has been able to swallow, but then within a couple of minutes almost all of it comes back up... but with nothing from the stomach, if that makes any sense. Not to be gross, but she has been throwing up saliva. The pooling is a lot like an over-full funnel, with a neck that tightens down smaller and smaller over a couple of weeks. the first part she took was pudding, and when it sat there in her throat they wanted to see if they could help it go down by adding liquid. I tried to say it wouldn't help, but they insisted on trying. It was part of the test, and told them more information when they saw her reaction. She slept deeply in her nap that afternoon, and it broke my heart when I saw her having a nightmare (breathing fast in and out as if crying), probably about the test. Her lungs seem to be fine. But.... she is happy and chirpy today. The therapist wanted me to see a GastroEnterologist in addition to our surgeon, to evaluate any swallowing disfunction. I'm not convinced that will help much, but we'll discuss it with Dr D when he gets back. We are going in for another dilation tomorrow-- let's hope we can start getting to the bottom of the mystery for why this is happening so quickly. It would be so wonderful if it was a simple matter of upping her Prevacid!
That's all I have time for for now.... wish it was more witty or eloquent, but I'm kind of in survival mode for the moment and my creativity is feeling pretty depleted. I promise I'll try to do better about keeping the blog updated so it isn't so much info at once. You are all wonderful and your prayers and continued encouragement mean so much to us!
I LOVE the first picture with Justin (big smile!), the 3-kids-on-the-couch picture (darling!), and w/ Giddy in the car. Just love it. Thanks for the thorough update. Love you.
ReplyDeleteSo, so much for a little girl and her mom and dad to go through. I'm glad you're able to sneak some fun stuff in here and there. We're still praying for you and think about you every day. Hugs and love!!!
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