Getting used to our new "P.A." System

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:
You'll never guess who just drank 3/4 of an ounce from a SIPPY CUP like a regular baby. In lots of little sips, but the stuff went down, and stayed down. And then just to prove how awesome she really is, she rolled from her back to her tummy. :)

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):
Two days ago, Audrey was reclined in her bouncy seat and Gideon stuck a sippy cup with (cooled) hot chocolate in her mouth and to our surprise she took a drink without complaining or gagging. (Audrey often stares at her baby brother when he eats and keeps a close eye on his sippy cups.) Susie didn't say anything and just watched. A moment later Gideon put a blanket on Audrey's chest and propped the sippy cup in her mouth and walked off. Audrey let the cup stay in her mouth and took a few drinks. Who needs to pay for a doctor to teacher Audrey how to eat? It seems her 23 month old brother has things well in hand. Since then, Audrey has drunk an ounce of milk several times and she appears to be asking for the drinks.



Dec 8 FB Update:
Poor baby is choking on her spit again and everything coming up again.... wow, a month like clockwork, as predicted. Back to the hospital for a dilation in the morning, this time for the first time we get to go to our own local hospital instead of driving an hour away!

Dec 9 FB Update:
Everything went smoothly today, Justin even got pics from the surgeon's scope of her stenosis. (It's amazing to see how convoluted and kinky her throat shape is-- ugh, poor girl!) Audrey woke up from the anesthesia sucking her thumb and rubbing her fuzzy head to self comfort-- both new tricks in the past week. After attacking about a half ounce from a sippy cup, she just drank about two ounces of mom's milk from a bottle.... first time ever accepting a bottle. Yeah, life is better. :)



Dec 21 Facebook Update:
It's been one of those "Insanity Mom" kind of weeks, and it's only Wednesday. On Monday night, Audrey's little headcold turned into pneumonia and we had to take her to the ER. She's doing much better now, but spooked us last night with throwing up her own spit again--something she usually only does when she needs a dilation. Yeah you're right, she just did that like... two weeks ago? Three weeks on the west coast would not go very well if she was already at that point, so the surgeon is doing another dilation surgery (under anesthesia) at the hospital just to help us get through. Then, we got the whopping bill for our home health company stuff so far-- they are billing it as though they are making a home visit every single day, and the per diem is the same as our daily copay, so a dozen phone calls later we are working with the insurance to perhaps buy our own pump and supplies. Eeesh. Oh, and it's Christmas week. School programs, gifts for teachers, wrapping and last shopping, packing for Grandma's, letters and photos and cards printed and assembled.... and fussy babies, whining kids. Good thing there's all the sweet stuff in there too, like reading my favorite Christmas storybooks to all of the kids around the fire. And Grandmas to look forward to still. And thanks to home health we met our deductible, so all of our medicines and doctor stuff for the rest of the month are free. Yaaay. *collapse*

***********************

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:

Today is a special date for our family. Today at last, baby Audrey has lived at home longer than she lived at the hospital. Although I had hoped to make it a special day of celebrating for her, we'll have to look forward to that after Friday's dilation surgery. She had a traumatic swallow study this morning, where she was forced to drink barium dye beyond the point when she knew she could manage it. It was pretty terrifying for her and hard to see that look her eyes as she asked me why I was helping the doctors instead of her. Amazing but tough to watch the monitor as the stuff pooled in her throat and went into her lungs as she freaked. Sometimes maternal empathy is a rough bag. Once her throat is open again, she's getting her first chocolate pudding.

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!