4th trach change for us complete

Val and I did our fourth trach change last night and it went really well, if I do say so myself.  We have to do two more and then take a CPR-trach class. Next up will be a 24 hour stay in the hospital where the staff does not help us at all and we do ALL of Sam's care by ourselves (including a trach change, vent circuit change, walk around the hospital etc).  After the 24 stay is deemed successful they schedule a discharge meeting and we are then "allowed" to take our girl outta here. Apparently we get to ride in style (ambulance) all the way home.

As I am here all of the time I have been doing the majority of Sam's care anyway, so the 24 hour stay doesn't scare me.  What does scare me is trying to figure out how to get everything "ready" at home.  In addition, we've had a bunch of showings at the house and a potential offer is coming our way.  Trying to buy a new house and moving so close after discharge should be a good time. Lots to do, to say the least.

In other news, Samantha continues to do really well. Her turn around has been nothing short of amazing.   I would say she is doing better than prior to her hospital stay in terms of energy and speech. Each day she says longer sentences and is remembering things that happened months ago--odd for even a typical toddler.  Heck, odd for me!  Sadly, I can't remember what happened yesterday.  Samantha still is not where she was in terms of trying to walk (very shaky and can't take independent steps), but I think that is to be expected.

Samantha continues to tolerate her short times off of the vent really well and is on CPAP mode while awake the majority of the time. She no longer has the weird breathing patterns (while off of the vent that I have noticed) that she had prior to the hospital stay. And, she doesn't have those odd "zone out" periods I was noticing prior to the hospital stay.

Sam is doing so well that at times I wonder if we rushed the trach decision.  Of course, I probably am forgetting (or more likely trying to forget) just how sick and weak she was just weeks ago. If we didn't trach when we did, we would have had to keep her sedated for even longer and there is no way she would be doing as well as she is right now.  Also, it is comforting to have the support of the trach/vent.  We can give her the support when she needs it, and allow her time off of the vent when she can tolerate it.  If she has a set back we can just adjust her vent settings and not have to worry about intubating/not intubating etc.  So really, there was no decision.  We had to do the trach, and we did, and it's been so great for her.  I think the g-tube has been very beneficial to her as well.  She can eat as tolerated, but we have the g-tube as a constant source of nutrition/hydration. There is no more fighting and pleading with her to eat, thankfully. As scary as all of her new "stuff" is, I believe it will give her a better quality of life and lots more energy--so that is a good thing.

Yesterday, Sam tried a Kimba stroller and she really, really liked it. Sammy was off of her vent and the respiratory therapist busted us out of our unit and we took the elevator to the atrium downstairs. She was so excited to be free and was smiling, saying "Hi" and waving at EVERYONE.  It was really sweet to see her so excited.  Although Sam has been semi-mobile, I always suspected that if she needed a chair of some sort she would be fine with it. The kid loves to be pushed around. And, the Kimba allowed her to be higher up (and sitting up straighter) than her regular stroller.  Hopefully we'll be able to get the insurance companies to agree that this type of stroller/wheelchair is what she needs.  Although it is heavier than I would prefer, with all of her new equipment it needs to be.  We can get it fitted with a vent tray, IV pole and o2 holder.  I hope she doesn't need ALL of that stuff all the time.  But we will need to take it with us "just in case", so it's good to have the ability to take it with us.

We are still paying attention to some things with Sam's labs, as she is still needing a bicarb supplement (which also doubles as a sodium supplement).  But otherwise it's been a good week and we are grateful.

We love the weekends around here because Val gets to be here with us and nothing makes Samantha happier than having both of her mommies around, spoiling her with attention, hugs, and snuggles.

Until next time,

Monica