Post surgery update

After some horrible time just now with the x-Ray techs, Eden was given a dose of morphine and is now sleeping pretty peacefully. It's been about 20 minutes straight which is the longest she has remained clam so I figured I might as well keep myself busy and do some updates.

The surgery lasted about 7.5 hours from start to finish.  Fortunately we had a nurse from inside the OR who called us about every hour to let us know things were going well and Eden was stable. She couldn't really give us any details at all as to what was happening, but she assured us each time that Eden was well and that's what was most important.

The time actually went by fairly fast.  I slept horribly last night so I thought I would try to get a little nap in between update calls but that was a bad idea.  Definitely for me, keeping my mind and hands busy with netflix and my poor attempt at crocheting was the best way to go because being still and trying to rest gave my brain way too much flexibility to start thinking...

We had a good visit with Dr Prager after he left the OR.  He showed us pictures of her airway, and drew us diagrams of what he did and what the graft looks like in her trachea.  He took a rib from the same side as last time and even used the same incision site.  This time he just did a graft in the front (last time he had to do a posterior and an anterior graft).  

She has drain tubes in both her chest site and her old Trach site.  These have dressings over them which are already starting to get pretty saturated.  I know changing those is going to be bad and I'm expecting it's going to have to happen sometime tonight. 

So here's all the good news: he said the operation went as best as possible.  There were no unexpected complications or problems.  The Trach is out! (So weird) He got the graft sewn in tight and it didn't appear to have any air leakage.  

She currently has a pretty big breathing tube (size 5.0) in her nose and down through her trachea.  In her other nostril is a feeding tube because with that breathing tube in she can't swallow.  The plan is to keep the breathing tube in for about a week to allow some time for the reconstruction site to begin the healing process with the tube holding it open.  Next Friday he will take her back to the operating room and do a bronchoscopy. If all looks good, he will downsize that breathing tube and then it will probably come out all together the next day.  When that comes out the feeding tube can also come out.  And that's when things will get interesting, which leads me to the not so good news.

Eden has pretty bad tracheomalasia. Her airway below the Trach and reconstruction site is very soft and squishy and her Trach was helping to hold that open.  Now that the Trach is out, we don't know what her trachea will do.  Even if everything in the reconstruction heals beautifully, things could get really bad if this malasia in the lower airway prevents it from staying firm and open down below the reconstruction site.  This week will most likely be pretty uneventful, just working to keep her comfortable and the pain tolerable, but once that breathing tube comes out the real informative stuff will start to happen.  He said it's not likely, but there is a chance (maybe 10%) that the Trach would have to go back in. Before doing that though there are some other options we may try first.  We will just cross that bridge when we get there.

So that's all the informative stuff.  As far as the emotional stuff goes, I'm doing ok.  The exhaustion of the day is starting to set in, but I know I can't sleep because she is waking up so frequently and I can't hear her so there's no way I'll be able to relax enough to go to sleep.  Brad is sleeping right now, we decided it would be best to take shifts, but even when my turn comes around I'm not sure how much rest I'll be able to get. 

 The first little bit is always the worst.  When I reunite with her and see how horrible she looks it takes everything in me to hold myself together.  We got into the PICU just as she was waking up and it took all of two seconds for me to realize she was sobbing but not a single sound was coming out. The breathing tube in her throat has completely blocked all sound.  Several times she has attempted to tell me something and sometimes I can figure it out, but most times I don't know what she is trying to say and it breaks my heart.  What I did understand from her was that she needed a drink, and then she kept saying, I just want to take it out.  Most times though she looks like she is talking so fast and I can't tell what she is trying to say.  She is on an anti anxiety medication and it's helping to keep her a little more relaxed.  So when she is awake she isn't completely aware and awake, but enough to ask for me, or answer our questions, or try to figure out why she can't lift her arms (they have her tied down to the bed so she won't pull her tubes out).  She is only awake for short periods at a time though before she goes back to sleep which is good.

We have a great nurse tonight. I can always tell within the first 15 minutes whether it will be good or bad.  I get great vibes from her, and she is completely on the same page as far as pain control and doing everything possible to keep Eden as comfortable as possible.  I'm very grateful for her and hope she will be working the next couple nights.

So now we wait.  We know from the past that the first 24 hours is always the worst.  I'm not sure how we will do all this, as far as time with the other kids or sleep is concerned, but we will figure it out one day at a time.

Thank you grandma Malarsie for the beautiful "Frozen" blanket.  She was awake and crying at one point and I told her I was snuggling her up in it and reminding her about the cute snowballs on the edges, and she nodded and said "ok mom".  

I love this girl, she is amazing.