Soooooo many things I want to say about this wonder-kid of ours. And then I get overwhelmed with trying to say it artfully or at least coherently and then someone comes and asks for a drink, someone falls down, someone gets their toy taken away, it’s time to go to bed, to work, to eat, to clean…etc…anyway.
Before I lose the general gist of today’s swallow study results, let me mark them down for posterity. We have seen so many fabulous speech therapists over the years that have helped us from a variety of perspectives understand the logistics of what goes into safely eating and drinking since the Quail was a few months old.
Shortly after the Quail was born and all the extra pokes and prods receded along with the delivery room lights; we settled into our room with the required dozen or so pillows to prop ourselves up and begin our nursing career. At the time we didn’t have any idea all that lay ahead of us. We only knew that there was a chance she had Down syndrome and that breastfeeding might be a challenge. We knew that teaching Zuzu to nurse had been difficult in the early weeks as well though and figured we’d master it with the help of our trusty Lactation Consultant. There was such a feeling of love and amazement between Lovey, her and I as this sleepy little baby rested in my arms with her dark swirls of hair and her chipmunk cheeks working the moment I lifted her to me. What a miracle a new baby nursing is to see.
In those early weeks that followed as I tried to nurse her, milk would pour out of the side of her mouth. She had difficulty pulling any milk out and I would often leave a nursing session as or more engorged as we went into it. We started with the usual help. We went back to our super-hero lactation consultant who had taught me how to nurse when Zuzu was a babe, and did a couple feed and weighs, which only quantified what we suspected- that she was barely pulling anything out of me. After 20 minutes, the most was ¾ of an ounce. We tried the nipple shield, different positions, an SNS, massage while nursing. Really, we went the distance, until the LC finally said she couldn’t really do anything else to help us, we had gone through her bag of tricks. So back we went to our EI and pediatrician for a referral to a feeding specialist. While the new SLP was kindhearted- my best guess is that the combination of the Quail’s heart-defect coupled with her inability to pull milk out of the breast overwhelmed her, and her first priority was to get milk safely into the baby. So she helped us with bottle-feeding, confirming that this act wasn’t stressing or taxing the Quail’s heart or system. Yet, still milk ran out of her mouth, she threw up multiple times a day and she fought me like the dickens most times I put her to my breast. We asked around and found another feeding expert who was trained by Sara Rosenfeld Johnson in oral-motor strengthening and placement and I called to explain our situation and ask if she thought she might have anything else to add to our repertoire. The Quail was 5 months old at this point and we still hoped to learn to nurse. We started feeding therapy to teach us to nurse and strengthen the Quail’s oral musculature twice weekly. In the meantime Zuzu, ever the wonder-nurser, gave probably the best gift she ever could to her sister, she happily continued to nurse and keep up my supply so that I could pump and we could bottle-feed the Quail with it.
We spent August through November of 2009, with regular feeding therapy and a hit and miss success rate, one time we’d nurse and the feed and weigh would show she had taken in 4 ounces only to have her then throw up 3 of them and then the next time she would fight the entire session with every position, exercise and accommodation. I still remember with a huge feeling of gratitude the last nursing session with our therapist where the Quail settled in and nursed like there had never been any issue and Kathy writing the word, “Beautiful” on a note and silently passing it over to me. I had left there that day full of hope .
Then one day in November, we hit a wall. For the last week, every single nursing session had been met with tears and frustration, on both of our parts. It had become a matter of course that I would bark at Zuzu whenever she came bursting into the room while we were trying to nurse. What had started out as a sweet bonding time amongst the three of us, had devolved into anger, sadness and frustration for all of us. It was time to let the nursing go. Fortunately, Zuzu still happily kept nursing at bedtime so between her and my pump I was able to provide milk to the Quail with all it’s benefits for 15 months.
Around the time she turned one, our therapists office staffed her case and an SLP who was not actively apart of our team made the recommendation to get a swallow study and Upper GI done to see if there were any physical reason for the daily throwing up since she showed no signs of outgrowing the reflux as we would have expected by a year. So we did. And there was. She had a duodenal stenosis that involved a web covering over that portion of her intestine and left an opening the size of the writing tip of a pen for her to push her food through. Most food stayed in her esophagus, expanding it like a water balloon, until she was able to apply enough pressure and push the pureed food through the pin-prick of an opening. It also meant that any solid pieces of food mixed in her purees stayed there until she threw it up. Surgery was scheduled and the web covering removed and the throwing up reduced to plain,old run-of-the-mill reflux. She stayed on Prevacid and continued to throw up, but really, it was more positional and only a time or two a day. Since she had always continued to grow well; well- “well” that is for a child with Down syndrome and a VSD, no one had been concerned about the frequency of her reflux since it could easily be attributed to her low tone.
The first swallow study also showed that our child who had been through RSV, the flu, pneumonia, two bouts of bronchiolitis and two hospital stays in the previous 6 months needed honey thickened liquids in order to prevent aspiration. What was found was micro aspiration, which we were told we were lucky what was aspirated was breast milk as any other substance, including water being aspirated in her lungs could have resulted in her being even more sick. While it was hard to say what the exact cause of her previous season of illness was due to, suspects included- her VSD, being in a daycare setting, just bad luck catching the flu and an unfortunate delay in receiving her RSV vaccination due to insurance paperwork snafus. And now the complication of her aspirating on thin liquids added to the puzzle as well.
In the meantime, we continued to meet with Sara Rosenfeld Johnson when she came through town with her travel clinics and work with our private speech therapist on her oral-motor exercises multiple times a day. At one point in the next year the reflux seemed to increase again so we scheduled another swallow study and Upper GI to see if perhaps scar tissue had formed or if there was a new issue. This time the Upper GI showed a congenital malformation lower in her intestines and showed a slowing of her stomach’s ability to empty. We were told that if we weren’t able to get the reflux under control we might need to go to a more serious medical management plan in order to keep her healthy, either stronger drugs to help speed up the delay of food passing through her system or the possibility of a feeding tube. The dose of Prevacid was upped but the liquids could now be thickened only to nectar consistency and the amount of food offered at one time became carefully portioned. Eventually we were able to see an improvement both in her ability to manage her liquids and food and her general health.
We did one more swallow study 6 months later, hoping for even more improvement and a reprieve from the thickened liquids altogether. This time, the news was worse and we needed to move the thickening back up to honey consistency. It was disappointing to say the least. The SLP, Dru, who does the studies explained that each time the Quail experienced a growth spurt, it would be like getting a new set of equipment that she would have to learn to use all over again and that we couldn’t really expect to do any active exercise to remove this issue until she was at least cognitively 12 years old, due to the complexity of trying to explain what she needed to do to her. In the meantime, we needed to continue thickening and following the straw cup protocol that we had been doing and probably there was no need to come back every 6 months.
So life went on and we reached our new normal of always mixing, bringing or sending along thickened liquids wherever the Quail went.
Today it has been about two years since that last swallow study. We scheduled another one realizing that some time in the last six months we had been able to entirely wean the Quail off of her Prevacid and she had only thrown up 2-3 times since then. I knew from the last couple of studies that it wasn’t wise to expect much progress and to be prepared for new precautions to be suggested.
We were, happily, no amazingly surprised! The Quail, she wasn’t so keen on doing the study this time. It took more than one suggestion of time out, offers of cake, validations of her feeling scared, multiple rotations of which parent was in charge of offering the barium-coated goodies and which needed to hold down her arms. This time we got the following results:
*Her swallow delay is now down to .5-2 seconds.
*She still has decreased tongue base retraction
*She has improved coordination in her ability to move the food and drink from one section of her mouth to the next.
* It still doesn’t look pretty when she moves it, but she is in control of it.
*The coughing that she exhibited (lucky for us she did this on film, as we often see it during meals and during water play) was not due to her aspirating or food getting stuck, it seemed to just be a response to her not liking a food or texture of the food.
*The cough was strong enough to expel said, undesirable food/drink in a way that helps her stay safe.
And here-is the cherry on the top- SHE CAN NOW DRINK THIN LIQUIDS WITHOUT PENETRATION OR ASPIRATION!!!!!!!!!!!!
We really didn’t expect to get to hear this for a number of years if ever. We had accepted the need for thickened liquids as just a part of who the Quail is. Of course we were warned, there is a chance that today’s study was just one wonderful moment in time, the best of her ability to swallow, so we need to watch for signs that she may be aspirating- which include coughing, choking and repeated illnesses. And of course that is going to be difficult to tell what the cause is. Cause you know, she goes to daycare, and she’s starting public school in the fall and will be exposed to a whole new set of germs, and each growth spurt may very well mean that she’ll experience difficulty controlling her swallow again, and she’s prone to ear infections and her tubes have come out in the last year and the ENT says we need to see if she starts getting sick again repeatedly before we’ll know if she needs a new set of tubes, but odds are she will since her eustation tubes are naturally tiny; and she has a VSD, and she has Down syndrome and all of these things are likely to lead to a weakened immune system. So it will be hard to pinpoint the exact culprit and what the plan of action should be if we do end up spending our days in the pediatrician’s office begging for antibiotics and a new nebulizer this winter. Time will tell.
In the meantime, little girl is cleared for drinking thin liquids as long as they are through a straw so she has control of them and the opening in the back of her throat when she swallows is minimaized (as opposed to the size of the opening when you tip your head back to drink), although it would be better if we transition her back down to that with cold liquids and much to our delight she is cleared for swimming!!!!!
To swim or not to swim has been a longstanding question for us that it was really hard to figure out who would help determine what was safe. I asked her pediatrician, her EI, her SLPs, her geneticist and Zuzu’s swim teacher. If a girl aspirates on thin liquids, is it a good idea to give her swimming lessons so that if she were to find herself around water she can learn to be safe, or do we need to need to work like nobody’s business to ensure that she never comes anywhere near ANY body of water. I have such a strong memory burned into my momma heart of one night’s tubby when she was under two and slipped in the bathtub and her entire head went under. Her sweet, scared eyes locked with mine for the two seconds it took for me to pull her back up to safety. Yes- water- it’s everywhere and of course she’s as drawn to it as a moth to a flame. Of course she would still be at risk, but it’s only slightly more than any other child learning to swim.
The other two pieces of information that were new were two other therapeutic options for treating what is at this point a neurogenic swallowing disorder. Essentially these are desensitization techniques. I’m not a fan of that category of treatment at all. When one of our first therapists who was repeatedly experiencing the Quail’s temper throughout her sessions with her suggested we need to try brushing the Quail and that she has a sensory processing disorder we balked. We weren’t willing to try it until we had tried another therapist first and lucky for us, it turned out the only thing that the Quail was sensitive to at that time was her dislike of that therapist. We had other explanations for the behavior that the therapist felt represented a sensory processing disorder. What she saw as over sensitivity to nursing, we feel in hindsite was the fact that our kid was aspirating on the milk I was trying to force her to nurse from me with and she was trying to stop me. What she saw as sensitivity to touch was a non-verbal toddler’s way of letting us know that she didn’t want to be doing the prescribed activity with that therapist.
The first option that we’ll receive a referral for is called therma-tactile-stimulation. This involves, taking large, frozen, lemon gelatin covered swabs and brushing them on either side of her tonsils three times in a set, 4-5 sets a day, for 5-6 weeks. This is meant to essentially stimulate the low toned muscles that the brain usually activates to swallow immediately in a typical person. Apparently with this procedure, once you’ve done it for a number of weeks, you should see fairly immediate improvement in her ability to swallow and that improvement should be long-lasting assuming no further neurological insults happen. The downside, well; have you ever tried to give a small child or a cat medicine when they are aware that they don’t want it? You haven’t, well lucky you. I have- both of those scenarios. It’s not pretty, it’s not fun and no one comes out a winner. That said, the thought that we may be able to stimulate those muscles to a point that they would function typically and remove the risk of her getting sick from the daily, necessary act of drinking and eating, well I’m willing to try and see just how much she will protest. There is a small part of me that has hope it won’t be too much since she is the first kid I’ve ever met that flops her mouth open at the site of dental floss inviting you in to meet her molars. Neighbors might prefer we wait till it’s closed window-season to start I’m sure though.
The second option is called vita-stim. This SLP started being trained in this technique a couple of years ago, essentially after the last time we saw her and she said from what she has experienced it has had great success. She did warn us though, to be careful of the experience level of the therapist administering it, because if administered wrong, it could do harm. It essentially involves taking a very low dosage current and applying to the muscles that are not functioning typically in order to stimulate them back into a regular motion. She said it would feel like buzzing on her skin and we would each do it on our own arms so we are aware of what she will experience. It would mean going to have this done about 3 times a week for a series of weeks. She said that the last two children that she has worked on involved an infant and a toddler with Ds and there was immediate and vast improvement in their ability to swallow. Typically this is something used with muscles that have atrophied.
We are to try the therma-tactile-stimulation first though to see if we get an improvement first with that and wouldn’t need the vita-stim route, which would be good because apparently there is a long waiting list to even be seen.
In the meantime, we celebrated our swallow-study results with a hospital cafeteria lunch and giggled our way back into our day.