Vocabulary

I learned a lot of new vocabulary words today...concentrator, Posey wrap, Tender Grips, swivel connector...Hudson's room now has a concentrator and a pulse ox machine in it.  There's a whole lot of tubing running over his floor and into his bed.  There's a big emergency can of oxygen sitting outside of his room in an out of the way hall space.

Most of our mito friends know exactly what I'm talking about, for everyone else, let me explain.  We saw the pulmonologist today to get Hudson's sleep study results.  It did not go the way I expected, at all.  I knew there were some findings, but I just didn't think they'd be what they were.  She told us that he has central sleep apnea.  There is obstructive sleep apnea, where your airway is blocked, like with tonsils that are too big.  Central sleep apnea is much less common, and it is where your brain just "forgets" to send the signal to your muscles that you need to breathe.  He did this multiple times an hour.  During these times, his oxygen levels went down into the 80's and his carbon dioxide levels skyrocketed.  These are not good things.  So, now Hudson is on oxygen when he is sleeping.

We left Houston at 1:00, and by 3:00 the DME was calling to come over and set everything up.  It all moved so fast.  I am having a very hard time accepting this, and it all happened so quickly that I feel like it hasn't really sunk in yet.

The fact that his body just stops breathing many times every night is terrifying to me.  I know he needs this, and I know that his body will benefit from it.  When I think of it that way, it's easy to accept, and I am so grateful that a therapy as simple as oxygen will keep him safe.

The fact that is so hard to accept, and that hit me right over the head today, is the progressive nature of mito.  I know mito is progressive, but when Hudson is doing relatively well it is easy to ignore that fact.  You can't ignore the hum of a concentrator and feet of tubing all over his room, and a cannula in a 3 year old's nose.  I hate it, it's another medical intervention that we didn't need even just a few months ago.  Progressive.  There's a vocabulary word that can really suck.

Hudson's first year of life involved reflux medication and supplemental G-tube feedings.  His second year involved pretty regular daytime G-tube feedings.  His third year has brought us a mito diagnosis, a slew of medications, continuous overnight G-tube feedings, some supplemental daytime G-tube feeds, worsening GI function, blood problems, and now the need for oxygen.  What will his fourth or fifth year of life bring?  It's a scary thought and one I don't want to think about right now.

The woman who came to set up his oxygen stuff from the DME looked around his room and said, so all we have in here is an enteral pump and oxygen?  He's doing pretty good!  And in that moment I thought, you know, we do have it pretty good.  Why am I getting upset over some stupid oxygen?  Right now, there's two very sick, very brave children with mito that I know of who are fighting for their lives.  I pray for these precious children daily, and realize that in the grand scheme of things right now, Hudson is doing ok.  In this Christmas season, I will choose to be thankful for the blessings we do have, and not focus on the impossible question of "what if?"  I'll continue to pray so hard that Alex and Eithene will get better, and I hope that you'll do the same.  Merry Christmas everyone...I hope your hearts are full with love and thankfulness this season.  I know mine is.