Day 11

Sorry for the lack of an update yesterday; yesterday was HARD. It was possibly the hardest day yet. It started at 1:30 am when our PICU room was needed for another child more urgent than Ethan's needs, so we were moved to intermediate care at that time. Thankfully, we were only in that closet of a room for 9ish hours before being moved to the 8th floor in a private room (yay, my own bathroom and shower!!!). 

Why was it so hard? Withdrawal. Watching your son have withdrawals from the narcotics that kept him sedated for the 10 day stay in PICU is HARD. He was sweating profusely and shaking. He also cried A.LOT. yesterday. I can be Mama Bear all day long when it comes to taking care of my boy, but the second he starts crying, I am a puddle. I cannot take it. Just thinking about him crying makes me cry. Plus, I was entirely too exhausted yesterday to keep any of the emotions in. I was snippy and irritable, I admit it and I apologize to anyone in the crossfires of that.

Sweet kisses from my Bubs

We've determined that most of the crying came from tummy pain because he finally pointed to his tummy when I asked what hurt. His Prevacid had been stopped because the pharmacy said that it would interfere with his C.diff meds/recovery, but it was started again today so I don't know...

Snuggles with Sissy

Scott has brought Cora up the past few days and last night and today she was able to climb into his bed and be close to him. He's not objecting too much.

Progress and able to hold his new gifted spatula

Today has been better. His sweating was minimal and his tears I can link to being bored or pain in his tummy and/or hips. PT came by today and Ethan has a bit of a road ahead of him as far as rehab is concerned. He has lost a lot of muscle mass/use and will need a bit of help to get it back. It was mentioned that he may need inpatient rehab at another facility. Let's all pray that he makes some major gains while we are here so that he can come home! His hips are super tight and he is obviously in pain when they are manipulated. We did get him on his feet twice today- once with me and Scott and another with the PT. He cannot bear weight on his own at all. He is frighteningly thin. I hope to maybe share a before and after picture one day, but not yet.

As far as surgery goes, he looks great. We won't know for a good six weeks and another sleep study how successful it was, but besides some remaining swelling, he looks great around his jaw.

Ethan's lungs sound clear and are doing well according to his RT's. He is still needing 2L of oxygen when he hits a deep sleep, but not for long. We may come home with a pulse ox and nasal cannula to have on-hand for any middle of the night desats.

We cannot be discharged until at least Monday as Ethan's pneumonia IV meds have to be given through Monday. I just don't know if it's a Monday morning dose or evening dose. If it's evening, Tuesday morning will be our earliest discharge possibility.

Lastly, we MISS our PICU team! Man, it's like going from First Class to Coach! We, ahem *I*, really miss them all. How do we begin to thank them? Send me ideas, please. Seriously.

Ok, I'm going to try and go to bed early. Praying for miraculous improvements.