"Outpatient" surgery

Ellie had surgery yesterday.  It was to lengthen her hamstrings so she could stand in a stander again.  The last few years she has not been able to stand in a stander because her legs have gotten too tight.

A stander looks like a torture device that you strap a person into.  Then you raise the device to be vertical and wah-lah now the person who is strapped in is standing and weight-bearing.

Standing is SUPER IMPORTANT.  It helps bones, joints, breathing, circulation, digestion, etc...

I was told it was a super easy, super fast surgery.  I asked if they thought she would be able to start school next week and they said yes.  It was scheduled to be outpatient (come home the same day).

When I talked to the Dr. right before she went into the OR, I found out she would have casts on both legs to keep them straight for 6 weeks.  I did not know about the casts before this point.

Surgery went well.

She also had dental cleanings and xrays in the OR.

While in post-op I mentioned to the nurse that I didn't know how I was going to get Ellie home because her wheelchair footrests do not extend out straight.  We spent a few hours trying to figure things out.

Normally her wheelchair pushes up against the backs of the 2 front seats, so not only is there nothing to support her legs, but there is not room for her to extend her legs.  The plan we decided on was to pull out the front passenger seat of my minivan and somehow store it at someone's house here in SLC for a few days until we could come back and get it.  We thought we could then use a cardboard box for her feet with some pillows on it.

As we were working out the details of this plan, Ellie started bleeding from her nostril.  Then it became blood from both nostrils.  She had been intubated through her nose so they could do the dental cleanings.

We tried various things to stop the blood.  It did not stop.  Finally they called in ENT.  They looked in her nostrils to try and find the source of the bleeding.  They could not locate it. 

ENT very gruesomely pulled out ENORMOUS BLOOD CLOTS from the back of her throat.  They were almost as big as her tongue and there were TONS of them.  I can handle a lot of medical things that don't gross me out, but this was DISGUSTING.  There was blood everywhere.  It was scary and not good.  There was a lot of trauma (damage) to her tongue and lips and arched palette , etc trying to get these blood clots out.

They put a tampon type device up each nostril to try and stop the bleeding.

They did blood-work to see if there was a reason she was bleeding sooooooo much.  Her labs were fine.

We got her admitted to the ICU.  

I fought the ICU Dr's for a few hours to try and NOT do the bipap for 1 night.  I did not want to push all of that blood down in her lungs with the bipap and then she gets pneumonia AGAIN!

They agreed to hold off on deciding about bipap until we had done her night breathing treatments and a chest xray to see if they could see an obvious pneumonia (blood) in her lungs.  They did not see anything bad on xray---just her normal bad---but nothing new bad.

She was snorting and working hard to breathe but was maintaining her sats.  She is a nose breather.  It is hard for her to breathe through her nose.  And now both nostrils had tampons shoved up them. 

Because she was maintaining her sats and her xray looked OK the Dr.'s agreed to hold off on bipap.

After she fell asleep her apna was too bad.  I was having to stand there and startle her awake every few seconds to get her to take a breath (she was forgetting to breathe....Apnea).

I said call the Dr. and tell them I am ready to do bipap.  Which we did.

Both of us had been up since 3 AM to get here for surgery on time.  We got to bed at 1 AM.  (Keep in mind she got out of surgery at 9:30 AM and got to ICU at 8:30 PM then to bed at 1 AM).  It was a long and unexpected day.

She had a terrible night.  Lots of desats.

Today (Friday 8/16/19) they pulled out 1 of the tampons.  And we have not had any additional bleeding.  She has been on blow-by O2 all day and doing much better.  She is breathing much more easily.  She has had several daytime desats, but still doing good.

Her mouth and tongue are super swollen.  Her feet are super swollen, so we were worried about swelling inside the cast.  The Orthopedic surgery Dr. cut the casts open and then wrapped them with coban.

Her pain has been minimal.

Although her regular wheelchair does not have a footrest that will adjust, we have a "Rodeo Tilt" stroller that the footrest will extend.  And thankfully it has tie-downs on it as well to strap into the car.  So Jason brought that down today so we will be able to get her home.

We may go home as soon as tomorrow.  But I am not holding my breath.  For tonight we stay in ICU.

We all believe her desats are caused by lots of swelling in the throat and nose.

She did have blood in her stomach contents today so we are also assuming she has blood in her lungs, but sometimes the lungs can absorb blood and it will be OK.  We will have to see.

She is still unable to use the nasal cannula since she still has a tampon up one nostril.

Overall doing OK today.

On another note.  They sent a social worker to me this morning to tell me that I made a nurse cry yesterday and I was being rude and hostile to the nurses.  I said I was sorry, that was never my intent. 

I wish I could figure out how to stand up for Ellie without being rude to other people.  It is something that I definitely have not mastered yet.

I need an interpreter for my lack of social skills.  I could tell the interpreter what I wanted to tell the person and they could rephrase it in a nice way and a kind tone of voice.  Do you think the hospital can provide me with one of those type of interpreters?

Perhaps I am overly tired?  Perhaps I don't know how to deal with stress?  Perhaps the hospital causes me to have PTSD? 

Probably all of the above.  The struggle is real!