Hayden continues to keep us on our toes. It's been another wild week for the Nantzes. This update is coming a little later than I'd planned, because, well ... sleep deprivation. But who needs sleep?
Last Wednesday our morning started early as we headed back to Riley for a day full of appointments. At 9am we met with Hayden's pediatric neurologist to check in on any progress or changes since her infusion 8 days prior. The neuro team has clinic days where their patients can be seen by a variety of different doctors consecutively. This works really well when your case requires a multi-disciplinary approach. They put you in an exam room and the doctors make rounds, all coming to you. Kinda like speed dating. It's convenient and allows several disciplines to review and assess in a short period of time as opposed scheduling with each physician separately.
After our follow up with neuro, we met with PT. The therapist went through an initial CHOP test with Hayden. Since Hayden has very limited motor skills it is difficult to quantify her motor abilities as well as progress. This test allows us to put a number or score to her current abilities so we can better quantify her progress and improvement post infusion. This test was specifically developed and customized for babies with SMA-1. Hayden's initial score was 8 out of 64. We're eager and hopeful to watch that number climb!
Next up we had a swallow study scheduled. We requested this. We had read that a lot of parents pushed for this early after diagnosis even if the doctors weren't yet recommending, especially if they were seeing signs of breathing or eating struggles. We keep reminding ourselves that while we're being seen by good doctors that are definitely more knowledgeable than we are... they are seeing her for a few minutes at a time once a week, whereas we are with her, observing her all day everyday. SMA is considered a rare condition so even though our doctors are knowledgeable, their level of experience is only as great as the number of cases they've seen. At Riley there have only been a handful of newborns treated similarly to Hayden. So we will continue to play Doctor, pushing for what we think she needs, right along side Hayden's team.
Unfortunately the outcome of the swallow study was where we hit a little speed bump in our day. Hayden had been gaining weight at a healthy rate but over the past couple days I had noticed some changes in her eating. The Speech Pathologist confirmed that she was definitely struggling with her suck, swallow, breathe technique. With some of her swallows she was aspirating milk and it was going down the wrong pipe. After trying a few different things, like thickening the milk to see if she could handle that better, it was her recommendation, that from a safety standpoint we discontinue breastfeeding and bottle feeding and move to something safer for the time being. After consulting with her team, they decided on an NG feeding tube.
This meant our first (and hopefully only) overnight stay at Riley. They won't do an NG as an outpatient so we had to be admitted. Part of being admitted was so that we could learn how to do her feedings through it... and, we had to learn how to place and remove the feeding tube. We both had to demonstrate placing the tube TWICE before they would send us home. Causing your child pain and discomfort is the most miserable experience, even if it's in an effort to help them in a bigger way.
These things never seem to go quickly. After her 11:15a swallow study, it took them about 7 hours before they had a room ready for us. We waited and waited. Ran to Target for the essentials... we will never go to Indy again without an overnight bag, lessoned learned! When we finally received the call that they had a room ready for us, it was after hours so we had to go through registration in the Emergency Department. Being covered in the grossness that is any hospital is bad enough but please don't send me and my compromised 5 week old to the ED.
After getting registered we were told that while they had a room, they were trying to track down a crib, apparently there was a shortage. So we waited some more. The highlight of our stay was while we were waiting (yet again) for her room. We sat in a corridor within eye site of the ED main entrance. There was a tall, bald, security guard patrolling the door. We watched him walk over to a bottle of hand sanitizer, give it a few pumps and lather up his hands. We were glad to see that even the security team was practicing good hygiene. A few minutes later he went back to the bottle, a few more pumps, and gave his head and neck a good disinfecting. Hmm, that's not odd at all. At this point we couldn't look away... curious to know just what he might Purell next. His face, that's what. A few more pumps and a foamy face. NOT TODAY CORONA. We had a good laugh.
While the timeline of the feeding tube is unknown, we hope for it to be no more than a month or two. As the infusion continues to help strengthen her muscles and she begins to work them more frequently, we hope the muscles supporting her swallow function will improve sooner rather than later and we'll be able to return to a more normal means of feeding. Until then, she'll rock this little tubie and look cute doing it!
Thanks for following along and for the continued love and support.
Just a reminder, only a few weeks left to get your #hereforhayden t-shirt and participate in our CureSMA fundraiser, and sign up for our walk taking place May 16th.
T-shirts and donations here:
The Facebook event can be found here:
Love,
Hugh, Logan, Avery & Hayden
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