The next step

 

Bridget had her swallow study follow up today. This was an appointment that I believe our family, as well as Bridget’s team from school, has been anticipating for quite some time. 

Essentially, the swallow study is a test that involves us bringing in food and liquids for to be observed on a monitor while Bridget is eating. Barium is applied to her food and liquids so that you are able to visually see where they go when Bridget is swallowing. I had gone to the last assessment a couple years back, so this was Michael’s first chance to watch the test being performed.

With Bridget’s decline in using utensils, they had me hand feed Bridget, while they monitored how she did and where exactly everything went when she swallowed. We were able to see in real time the big gulps that she has acclimated herself to do in order to swallow her food, and also on 3 separate occasions we were able to see liquids going in the opposite direction, which we then would be worried about leading to aspiration. 

The test is fairly simple, but only a snapshot of what a true meal or snack time is like now for our family. The overall consensus is that she did well in that short minute and a half of eating, but what they caught with her liquids and bread getting stuck in the back of her throat, was concerning. We were given tips about eating (ex. small 1 inch bites, eliminating all dry foods, bread, crackers, etc). The tricky part of this….is that we had already made those modification, minus some crackers here and there for snack. 

So what happens when you have already followed through with making the changes, and they still aren’t working? We were referred on to a pediatric gastroenterologist to discuss the next steps.  Before heading out the door, we were also reminded that it is always best to be proactive when it comes to safety with eating…and the g-tube was brought up.

I had been feeling sick to my stomach since her appointment last week. We keep a very close eye on her while eating at all times, as I know they do at school too. Just imagine not being able to allow a 9 year old a simple snack to be eaten while watching a show or hanging out in their room. It’s pretty fair to say now that Greta (at only 15 months) is a way more competent eater than Bridget is now. As difficult as that is to admit, I know that the overall goal here is safe meals, and also precaution surrounding dehydration and aspiration induced pneumonia. 

Going in to the appointment today, I told Michael I could handle it alone. With so many appointments needed, we do our best to try to spread them out between the 2 of us. I knew that this appointment was also weighing on Michael, as he is so tender-hearted when it comes to Bridget. It never fails, within the first 5 minutes of the appointment, I started to cry to her GI dr. Thankfully, he was absolutely phenomenal, and talked me through every avenue and all of Bridget’s past history that has lead her to being in his office today. 

One of the comments that he made to me, was that with her syndrome he was surprised that Bridget has made it this long without needing any gastro medical interventions. I have honestly thought the same thing myself as well. It is commonplace for children with Sanfilippo to have a regular place on all specialist visit schedules (ex. Pediatrician, neurology, cardiology, multiple therapies, vision, hearing, etc.). This was the ONE specialist that we haven’t made it to yet…but now here we are.

The main issue with Bridget’s syndrome is the regression aspect of speech (she is no longer talking), loss of mobility (using a helmet and her stroller chair daily), and then the loss of the ability to self feed safely (where we are at now). These skills do not always regress in that same order either. With that being said…we knew a g-tube would be right around the corner.

There is a major difference between knowing something will happen “soon”, and having a medical professional tell you that it is time for that intervention. I went into the appointment prepared for this news, but you never really know how you are going to react when it is presented before you. 

I think the part of this news that hits me the hardest, is how unfair it is to Bridget. Her whole life she has had to deal with setbacks, delays, and difficulties…all the while facing them with a giggle and a little smile on her face. I want to take her pain and setbacks away from her. I want to not feel like a failure of a parent because she has to go through yet another procedure. I want to KNOW that I have years and years more to cuddle her and get long gazes from her big, sparkly, blue eyes.

Another piece of sand in the wound of this news for me, is that I have always felt like I could adjust for Bridget’s needs. We have found ways around her feeding before. We have worked with other professionals to determine medicines that help her get through each day, and I have also become a pro at public diaper changes of a 9 year old. But this. THIS is beyond the realm of what I know. This will require me to need to  learn yet another new skill. THIS is something that I truly wasn’t ready to hear yet…even though in my heart I know she does need it. 

In the timeline of Bridget’s life…a g-tube to me meant “near the end”. I know that it’s not. I know that this is something that will benefit her. But it also makes me question, after all of the other big changes…and being at the next level of loss for Bridget….when will that FINAL level creep around the corner? I cannot help but to go there in my mind. I have spent the day thinking of every possible thing to do to allow Bridget to enjoy whatever amount of time she has left. So here I am. Crying while typing this out…trying to organize my thoughts and figure out a way to preface this for Luke because I know he will have questions. And also searching up different varieties of meals that I can purée for Bridget.

We have an appointment on November 24th to meet her surgeon and her surgery will be scheduled shortly after that. I would appreciate any kind thoughts or prayers, as this appointment is something we will really need to adjust and prepare ourselves for. 

Thank you again for all of your kindness, patience, and love for Bridget.