He's got a good angel

I must start out by apologizing to you all first... if I had any sense in me I would have written this a week ago, but alas, I didn't.  Last week was an eventful one for us at the Short household.  Tuesday morning I woke up at 5 am with kids in our bed so I decided to bring them back to their bed.  After I did this I went in to check on Dominic.  He was sleeping soundly in the nurses arms when not even 10 seconds later the vent broke.  Go ahead, re-read that last sentence.  The vent broke.  It started making an awful wheezing and squealing sound and a panicked alarm with a "HW malfunction" message flashing.  Quickly I grabbed the ambu bag and had the nurse start bagging him while I changed the circuit (tubes that lead from the vent to Dominic).  I had never seen this alarm before so I had no idea what was going on.  When this didn't work I ran into Mike and my room and grabbed him.  The nurse was still bagging Dominic while we were trying to figure out what went wrong.  I called our home health company's on-call respiratory therapist who said she would go by the office, pick up a vent, and bring it right over.  We turned the alarming vent off and just decided to bag him while we waited.  We have a back up vent but I had never practiced with it so I though bagging him would be just as good as going through the trouble to hook him up to the back up.

During the two hours we were waiting for the new vent to arrive, Mike and I sat in Dominic's room, sipping coffee and having a good little date.  We laughed how funny it was to us that we thought this forced time together could count as a date, but it was nice.  After the new vent arrived and we got it up and going we put Dominic on and all was well.  He had done beautifully during those two hours and even helped me bag him for a while :).

Fast forward a few hours.  Our date was over and the nurse and I brought Dominic to his regularly scheduled pulmonology appointment.  It's funny because before we left Mike asked me several times if I wanted him to go (which he normally doesn't do) but I declined saying there would be too many of us in a cramped little doctor's office.  I thought it was just because we didn't want our date to end, but maybe he had a feeling something was going to go wrong.  After the doctor came in and saw Dominic, as soon as she left the room actually, he went into respiratory distress.  His blood pressure plummeted, his heart rate went up to 220 (normally 130) and his O2 saturation went down.  He was pale, mottled, and sickly looking.  I called a nurse in, we started monitoring him, gave him a breathing treatment and cranked his oxygen up.  The doctor came in and immediately called a med alert, summoning a whole crew of people to his room.  She said she didn't feel comfortable sending us home, so she admitted him to the pediatric ICU.  That first day was bad.  He started having high fever, his heart rate too was high and we couldn't bring it down and he just felt terrible.  This is the happiest baby in the world, and he was just laying there crying.  Poor baby.

We were in the ICU for 5 days and since Mike was sick, he was unable to come up but 2 times for a short visit with a mask on.  He manned the house and with my family took care of the other kids while I stayed up there and slept there.  Dominic started to look better the 2nd and 3rd days and by the 4th day was looking like himself again.  We had to monitor him for one more day and we were cleared to go home.  Now he is back to his normal self again, smiley and spunky (when we can manage to wake him up!).  Man, normal life is so sweet after you go into survival mode from having the family split up for a hospitalization.

starting to feel better, but still a little sad

"Don't worry mom, I've got this!"

The doctor said that maybe he had a little virus (he had been having symptoms for a few days prior to this) that weakened his immune system enough to allow a bacteria to colonize his trach site.  The bagging may have been what threw him over the edge.  He is finishing a course of antibiotics now and hopefully we can get that nasty bacteria away from the trach!

We are well aware and humbled that our Guardian Angel's were watching over us.  There is no reason that I happen to wake up at that time and no reason I should have been in Dominic's room at the exact moment the vent broke.  There is no reason we were already at the hospital in the pulmonologists office when he crashed.  No reason except for the protection of God through His angels.  It is so strange that He choose us.

He loves being sang to

4 Friars and a baby :)

Now you see why he is so spoiled

It's hard to feel sorry for him, huh?

And I didn't get a picture of this, but sure wish I had... Dominic pooped on my sisters leg.  Is that TMI?  Sorry if so, I thought it was hilarious!  You can create a mental picture now...

Decannulation #3... awesome.

I'm not sure how to start this post.  I can't think of anything clever so I will just start.  Yesterday we started with a new home health company which is anxiety producing because you have to learn to trust a whole new group of people.  Dominic gets private duty nursing hours and we have been with the same company since he came home, but just recently we switched to get better shift coverage.  Change is hard.  I have learned  you can never assume what a nurse is experienced in, so this time I have a sort of check list of things I have to watch the nurse do before she is independent.  I spent 2 1/2 hours checking one of the new nurses off on how to do everything last night, including 2 trach changes.  The first was planned; I wanted to see how she did.  The second was soley the fault of this clumsy woman right here.  I tripped over the vent tubing and fell, in the process pulling the tubing off the trach.  He looked fine though so I got back up, hooked the tubing back up, and started to change his diaper.  It was dark in the room, but even with the small lamp I noticed his lips were turning blue and he was struggling.  I flipped on the light and sure enough I had decannulated him.  Awesome.  So, I moved fast and changed the trach and everything was fine.  Phew was I scared.  That would be my 3rd time to do that.  Mike has done it zero times, as has everyone else.  Just me, his clumsy, two left feet having momma.  The first was in the ICU right after he got the trach (before I was trained, I just screamed), the second was in the TCU when we were training on how to care for him, and now here at home.  Awesome.  After everything was done I said to the nurse "well, that is an emergency trach change."  Good training I guess.

It sucked last night for many reasons, but the biggest one was the reminder that he really does need the trach and vent.  It was only out for a matter of seconds but in the short time he turned blue.  I hate the trach.  Well, I don't hate the trach, I love the trach (it is keeping him alive), but I hate what it represents.  I hate that he can't breathe on his own.  I hate that I can't just carry him across the room without pulling 50 lbs of equipment behind me.  I'm thankful it is doing the work of breathing for him.  I hate having someone in our home all the time.  I'm thankful for the nurses though, there is no way I could do it without them.  I'm tired.

In Jesus and Mary,
Chasity