Dr. recommendations

 


Receiving a call from your child’s school is always an unnerving experience (and that’s coming from a 2nd grade teacher). I know that the team that takes care of Bridget does a phenomenal job, so the fact that they chose to call me about an event that occurred during the day, must have meant that it was pretty serious. 


I had just gotten home early for the day, as I was going to be taking Bridget to her annual developmental clinic doctor appointment with one of our favorite doctors. I noticed that Bridget’s school number was calling as I was finishing up a few things, I assumed that maybe there was a time mixup as I was going to be picking her up shortly, so I had Michael call them back quick while he had stopped home. As it turns out, it was not a mixup of times, but they wanted to inform us that Bridget had a pretty scary experience with choking during lunch that day.


I could tell by the conversation with the nurse, that it wasn’t just scary for Bridget, but for everyone involved. I had a moment where I felt like I was floating outside of my body visualizing the experience. Her one-on-one cutting her food up and feeding her very small portions at a time…just like we do at home, and suddenly becoming frantic attempting to do back blows, and eventually the Heimlich maneuver. I saw the reactions of the other adults in the cafeteria and the fear that immediately takes over you. And I also focused in on how terrifying it had to be for the rest of the children who were also eating lunch at the same time.  We’ve been there…several times. And to be honest, it’s a completely helpless and anxiety-ridden experience.


We were told that many students were concerned, some of them even going over to Bridget after the event to ask if she was ok. 


Sometimes I feel as though I am coasting through my very own fog. Like no matter what I do, or how quickly I move, this fog is constantly chasing me and engulfing me with yet another problem. Now we aren’t just hyper focused on Bridget’s eating at home, it’s officially happened at school where she has choked and other people have witnessed it. Not only does she choke on food, but liquids as well. This has lead me to be very fearful that she will become dehydrated…or much worse. She isn’t able to drink as well out of straws anymore, and it’s hit or miss how she does with certain water bottles.


So naturally, we reached out immediately to our pediatrician about setting up a referral for yet another swallow study. Is this the appointment that will “upgrade” us to a g-tube? The thought of that makes me want to throw up. This young lady has just been through so much, and I want to take all of her pain away…I don’t want to inflict yet another procedure upon her.  But we also are terrified of what each doctor mentioned to us….about the major possibility of Bridget aspirating on food….leading to possible pneumonia….or worse.


So here we are, waiting for her next swallow study (at the end of October), when we realize that something is very wrong with her hands. She tends to clench her fingers together often, and she also likes to chew on them as a way to calm herself. We have little chewy toys that take the focus off of her hands at times, but the amount of saliva and drool is unexplainable with Sanfilippo. As the person that typically bathes Bridget, I am adamant about making sure she is clean and safe, and I noticed just how damaged her fingers had become from her chewing. I’m talking about the skin between her fingers literally peeling off in thick sheets, even though we are constantly drying her hands. Not only is her skin peeling, but it has turned into deep purple/red open wounds covering most of her hand. I feel guilty as her mother, because we have allowed it to get so bad.



Friday I took Bridget to the doctor because I was very worried about an infection in both of her hands. Upon investigation, she has pretty severe damage and deterioration to her skin, as well as ulcers which may be why she clasps her hands so closely together. I hate that she can’t even use her voice to tell us if she is in pain. So now we add on yet another routine to her daily schedule. She was put on 2 steroids to assist in the attempt to heal her skin, and she will need to wear items similar to gloves, without fingers, to protect her hands allowing the medicine to do its job. Another Sanfilippo mama also sent us some elbow restraints that will hopefully assist in keeping her hands dry and allow her skin to slowly repair itself with the help of the steroids.  We have been referred on to another special dermatologist to stay with us in this journey to hopefully mend her hands. 


And not to make it about me at all, but there are times that I find myself praying and crying out for a break in all of this for Bridget. It’s just so unfair. She doesn’t deserve all of these setbacks…and I fear there will only be more to come. How do you…as a special needs parent, not get lost in all of this? Almost every moment of my being circles around problem solving, analyzing, and creating game plans on how to keep my daughter safe…in addition to caring for my other children, my husband, and somewhere in there myself as well. 


I wish there were more hours in the day. I wish there was more time allotted to just spend with my family. And mostly, I just wish for Bridget to be happy, and healthy, and to not need to be poked and prodded all the time. 


Please say a little prayer for her as we anticipate her swallow study at the end of this month. I’ve never been so apprehensive about an appointment with Bridget before. I know the pros to the procedure….but a little piece of me has always viewed a g-tube as something that happens near the end of the Sanfilippo battle. I know that isn’t always the case…but I can’t help but to have my mind go there.


Cherish the time spent with your family. Hug your kids while you can. And treat others with kindness…as you never really know the underlying pain someone else might be up against. 

Comments

  1. Continuing to pray for Bridget, your family, and your heart Mama. (Holiday Streakers member)

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