(Originally published to Sam’s Caring Bridge site on 6.4.19. To read all previous entries from Sam’s NICU journey, visit his Caring Bridge site: https://www.caringbridge.org/visit/samueldwenger)

It has been over a month since we wrote Sam’s last update after his visit at Johns Hopkins and we wanted to give a few details about what he’s been up to:

Since we got back from Baltimore at the end of April, life has been a whirlwind of one doctor appointment after the next.  One of the appointments included a sleep study at Dayton Children’s on May15th, which was something his doctor at JH recommended we do.  I (Liz) spent the night at the study with him, and Sam was connected to over 30 sensors (which he was not fond of) which kept track of all aspects of his sleep and breathing.  Needless to say it was a long night for both of us.  The following day we received the preliminary results of that study which were disheartening:  Sam has both “obstructive” (a narrowing of his airways) and “central” (lack of inflation of the lungs due to chest size and/or neurological reasons) sleep apnea.  The doctor prescribed oxygen during sleep and ordered a follow up sleep study for the following week.  Once we got him home and figured out how to hook up his oxygen cannula, we both just felt like we were back in the NICU with a baby hooked up to machines – it felt like such a setback.  And the nights were exhausting – we had to check him every hour to make sure he kept the cannula in his nose.

The following week we went back for sleep study #2, which they used to determine what settings Sam would need on a CPAP machine when he sleeps, instead of oxygen.  It was another long night, but Sam adjusted to the CPAP fairly well.   The machine he uses is actually called a BIPAP which helps keep his lungs inflated both when inhaling and exhaling.  And it allows him to use his own breath to “breathe over” the machine and then kicks in with artificial breath if Sam’s body forgets to take one.  It’s pretty high tech, and at first it was a little scary – again, another machine on our sweet boy.  But he’s been using it at night for a few days and each night is a little better.  Jim and I take turns sleeping on an air mattress in his room to comfort him when he wakes up in a panic with the BIPAP mask on his face.  During the day he just uses oxygen for nap time until he’s fully accustomed to the BIPAP mask.  And he now has a pulse oximeter on his toe, which beeps if his oxygen level drops too low, eliminating the need for us to check his oxygen cannula while he naps.  

The week after his second sleep study we met with his Sleep Clinic doctor who went over a lot of information with me about both studies.  I left the appointment feeling reassured that he will be a great addition to Sam’s care team – he was helpful, thorough, and understanding and was working hard to understand the complexities of Sam’s genetic diagnosis and how it relates to his sleep apnea.  Although we still feel discouraged by Sam’s need for his BIPAP, we do feel like it is something that will benefit him long term.

In the midst of all that, Sam has also seen doctors in Pulmonology, ENT, Genetics, as well as his pediatrician checkups and vaccinations.  The poor guy is pretty sick of doctors and nurses!  Tomorrow he will have his spinal MRI and need to be under anesthesia.  We are nervous about Sam being under anesthesia at such a young age, so please pray for peace for us and for the procedure to go smoothly.  It will be an outpatient procedure as long as he recovers normally, but the doctor may opt to keep him overnight for observation if they feel it is necessary.  The MRI will be checking for some spinal abnormalities that go along with Metatropic Dysplasia, and we’re praying that we will receive some good news and that the images won’t reveal anything more severe than we already know.

Jim and I are worn out physically, mentally, emotionally, & spiritually.  Sometimes it feels like we’re just functioning in survival mode.  But amidst the difficulty of the last several weeks, there have been a few bright spots.  One blessing that came out of Sam’s sleep study is that the knowledge of his apnea with regard to his procedure tomorrow – without the information about his need for extra breathing support, there could have been complications when he is under the anesthesia.  So we are grateful for the timing of all of his sleep appointments.  Sam has also been a very busy boy learning to crawl!  He went from a sort of combat-scoot to a full on army-crawl, and he’s quite proficient at it!  He hasn’t quite figured out how to crawl with his belly lifted off the floor, but he sure can get wherever he wants to go!  We also celebrated two big milestones in May:  Sam’s first birthday, which we celebrated with friends, family, and plenty of sprinkles, and also a new cousin – congrats to my sister and brother-in-law who adopted a son (and Sam’s only cousin on my side of the family), Miles!

Right now we’re working with Sam to overcome some of his “stranger danger” (which no doubt comes from all the strange doctors and nurses who poke and prod him at his appointments!), and to say his first words.  We know that speech delays come along with MD, but we’re trying hard to encourage him to make all kinds of sounds.  We continue to be so appreciative of your prayers and encouragement, please pray both for Sam’s physical health and for strength and peace for our family.

Sam is One!

August 13, 2019

By

Liz

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  1. Leslie Neuenschwander

    September 22nd, 2019 at 9:24 pm

    Thank you for the updates. Continued prayers for all three of you💙

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