Hannah was extubated at 10:05 am today and reintubated at 10:55 am.  Within 10 minutes, I knew that she was not able to breathe the way they expected.  They tried a lot of interventions, but nothing worked.

The attending is waiting to hear from Dr. Roy, Hannah’s ENT.   She wants to talk to him about doing a “deep broncoscopy” in the OR to see if there are some physical issues with her airway, either related to her disease or related to her Gaucher’s.  She seemed very puzzled that it did not work and that she decompensated so quickly, and she wants to rule out sedation issues as the reason.

I’m not getting my hopes up.  About 15 minutes post extubation, I was holding on to Hannah and just apologizing to her.  I felt so horrible for her.  She was struggling so hard.  It broke my heart.   I think watching her struggle to breathe, struggle when agitated, and just overall uncomfortableness is making me stressed out and completely sad.

I was able to fall back to sleep around 4 am this morning and woke up at 7 am.   I usually like being down here by 7 am so I can talk to the night nurse, but I just could not make it in time.  By the time I showered and checked out of my RMHouse room, it was 8 am.  Fortunately, the PICU receptionist had already put my name on the room request list for the RMHouse.

Apparently Hannah had a really rough night again.  The night nurse did not call me because she wanted me to sleep.  Perhaps that is why I woke up at 1 am?

They are going to move up the extubation from late morning until about 30 minutes or so.  Right now, she is out because she got a pentobarb and ativan dose at 7 am.

There are a lot of people milling around, passing Hannah’s door looking in.  I think they are all waiting for her to start waking up again and get agitated.  That way, they know that the sedation is wearing off.  There have been a lot of people coming in to check her lungs, her respiratory settings, etc.

When I woke up (the second time, at 7 am), I woke up at peace with whatever happens today — trach or successful extubation.  Don’t get me wrong, my anxiety level is very high, and I feel my heart in my throat!   I really just want my Hannah back.   I want her sweet smile, her cuddly hugs, and her face she makes when she sees me.

It is 2 am right now, so technically it is the next morning.  Yesterday afternoon was so rough and exhausting that I ended up falling asleep at 8:30 pm, only to wake up at 1 am and not be able to fall back asleep.  Ugh…

This sedation wean is a nightmare.  The narcotics were completely stopped by noon yesterday, and the Precedex was started.

From around 1:00 pm until about 4:30 pm, Hannah was agitated, shaking, and just could not be calmed down.   It was one of the worst things I had to sit through and watch.  She looked like she was going through withdrawals from the narcotics (Versed and fentanyl), and even though she was still on the phenobarbital and Precedex (and Ativan and methadone for the withdrawal), it was just not hitting her.

The nurse called the fellow and resident, but they wanted to stick with the plan of care.  I will admit that I was getting very emotional during this time because there was nothing I could do, she was so out of it that I could not console her, and even the nurse felt horrible and stressed out because there was nothing she could do.  Finally, around 4:30 pm, she fell crashed and fell asleep.   She was just absolutely exhausted.   There was a point towards the end of this that in my mind I was ready to just ask them to trach her so she could start being more comfortable.

No 22-month-old baby should have to go through narcotics withdrawal and sedation wean like this.  She had been so loaded up on the fentanyl and Versed over the past two weeks that it just seemed like the methadone and Ativan (which were raised earlier today) just were not covering it.  It absolutely sucked.

Finally, around 5 pm they were able to get her back under control.  Perhaps the Precedex was finally high enough (almost at the max for her weight), I don’t know.  But as of right now, she is only on the Precedex, Ativan, methadone, and as-needed pentobarbital and chloral hydrate — these are all short-acting sedations (meaning they don’t linger in the system).

Oh yeah, and she did get her Cerezyme yesterday, thankfully!  I had to keep reminding the doctors about it.

All I know this “this morning” they are going to try and take the breathing tube out and get her off the ventilation machine.   I am even more terrified about this than I was 10 days ago when we tried it.  Not only do I have the worry about laryngospasms in my head (less so than last week since she was successfully extubated), but now I wonder how she will do off the vent.

By 2-1/2 hours last time, it was clear she had failed extubation and was reintubated.  However, she started showing signs about an hour after having the breathing tube out.  So what will constitute success is, I guess, if she can go 24 hours or so without needed to be reintubated.   Unfortunately, it is not a quick “yes, it worked” situation, but the “no, it did not” would be answered sooner than that.

I want to go back to sleep… I even made myself stay in bed an hour and not come on here just to try.  Ugh…. my stomach is in knots for my baby girl…

Oh, and did I mention the movers are coming up to pack up our house today, Abigail is graduating kindergarten today (and I’m missing it), and Ethan, Daddy, and Abigail (and the two dogs and cat) are leaving for Vegas tomorrow morning?  I had to say my good-byes to them last night here, as they won’t be able to come down tonight.   I can’t believe I’m not going to see them for a few weeks…

Since Hannah’s attending changed her meds around yesterday afternoon, Hannah’s sedation issues have been MUCH better.   She only need about 8 or so “as needed meds” overnight as opposed to the 30 or so the previous night.  Even today, I have been in here for 4 hours, and she has only needed an as-needed med once!   Things are definitely improving with that aspect, finally!

Rounds just finished up an hour or so ago.  The Versed and fentanyl are now history as is the clonidine patch and the rocuronium (paralytic)!   At 3 pm today, they are stopping the pentobarb drip and starting Precedex, the supposed no-more-than-24-hour superduty anesthetic that wears off very shortly after it is stopped.  The goal is that when they are ready to sedate her tomorrow morning that she will really only be feeling the affects of the Ativan and methadone, and that is more to combat her withdrawal issues from all the other meds than the sedation effect.

Dr. Loftis, the attending, wants to talk to Dr. Roy, Hannah’s ENT, today for what I assume is to come up with a game plan.   Hopefully I will learn more once that conversation takes place.

But there is a concern, of course, that the Precedex will not work as they expected (as it did not have much effect as before), so there is a chance that she may be extubated sooner than tomorrow morning.  They don’t want to do it because there is less staff, but if they need to do it, they can.   Hopefully she can make it until tomorrow when they want to do it and have it as controlled as they can.

I’m starting to get very anxious and nervous now.  In 24 hours or so, we will begin the “trach or no trach” question again.  Even though I am mentally prepared for the trach, I will hope we can avoid it.  Not getting my hopes up, mind you, but I would love to give Hannah at least one summer in a pool, especially since hydrotherapy was her favorite therapy by far.  With a trach – no swimming.

On a side note, when they did rounds today, they said that Hannah was a baby with “Gaucher’s Disease type 3.”  I did not correct them.  Partly because I so wish that was the case and hearing them say that sounded like music to my ears.  Even though I know she is a hybrid of type 2/3, correcting them at this point does not change their plan of care.

Mama is going to be spending the day here again, except for a possible dinner with Ethan and Abigail and Daddy if they come down.  I can’t believe they leave for Vegas on Friday morning!!!   Even though it seemed to take forever to get here with the move, now it feels like it is going so fast!

This morning was a rough one for me.  I only got 3 hours sleep since I did not get a room at the Ronald McDonald House last night (fortunately, I did tonight!).  Also, their “plan of care” for Hannah’s sedation wean for an extubation trial Thursday morning that was created a couple of days ago seemed to be not working.

It started this morning with rounds.  Since it is a new month, that means a new rotation of residents and our third attending since being in the PICU.  Our fellow introduced Hannah as the “sedation nightmare.”   Their plan was the same as it was since Dr. Roy was here a couple of days ago — to wean Hannah from the narcotics (Versed and fentanyl) and streamline the rest of her sedation meds (pentobarb, chloral hydrate, clonidine patch, rocuronian – the paralytic, etc).

Well, the plan of care was to wean down the Versed and fentanyl IV drips and use them as-needed.  Well, as-needed turned out to be 15 or 20 times combined.  Hannah’s sedation flow sheet still easily was onto the second page.  It was not helping.

Also, when Hannah gets agitated or awake, she is not consolable.  She does not even respond to me talking or touching her.  These meds have made her so delirious it seems like that nothing that me or the nurses do has any effect.   The nurses (who have been incredibly fantastic!) even try getting gas out of her tummy by suctioning it out through her NG tube, repositioning her every which way (except on her tummy which she would love but can’t with the vent), and putting on music.  They have really gone above and beyond what I could have ever expected.

So when today’s nurse called the fellow to say “this is just not working,” the fellow (who also has been really good with us) made a comment that they were going to continue the “plan of care,” and think that they need to ‘nurse’ her more — hold her down, comfort her, etc.   I saw the look on the nurse’s face because it was exactly what I was thinking — it is NOT the nurses that are the problem.

Thinking I was getting angry because I was exhausted from lack of sleep, I went up to the RMHouse for a quick shower because it was all I could do but at least be here to help them with Hannah.   I sent Dr. Roy and my friend Cristina an email about what was going on, mostly venting, because I just could not figure out how this was going to work for extubation on Thursday morning.

So I came downstairs and talked to our nurses.  I started getting upset.  I could not wrap my mind around how she was going to get a fair chance and extubation in less than 48 hours.   So I asked the nurse who I could talk to, and she got the attending.

I shared my concerns with the attending, and the nurse corroborated what I was saying.  The attending actually agreed that this was not working and made some real changes to the plan of care (totally weaning fentanyl and Versed, even as needed, and removing the clonidine patch) and putting Hannah on a phenobarb IV drip and continue using rocuronium (the paralytic), chloral hydrate, and the Ativan/methadone (to help wean off the narcotics).    Then, I BELIEVE 24 hours before, they will be adding the Precedex and only be on Ativan and methadone as well…I think…

Though she still needs a lot of sedation, it really seems that since that change this afternoon, she seems as if she has less agitation episodes.  Of course, it has only been a few hours.   But the goal is to get her on all these short-acting sedation meds and off the narcotic and long-lasting ones so once they are ready to extubate, she should be much less sedated.

Thursday morning seems to be extubation time — my guess is after rounds, probably around 11 am or noon.

We are starting week #3 here.   She is still on the vent.  I am missing her terribly.  Even though she is right here, I miss my playful, cuddly, sweet little girl.

The doctors did rounds this morning, and the focus shifted away from the trach to optimizing the next (and probably final) extubation attempt in a few days.  Because she has required so much sedation and so many different meds for sedation, the challenge is to narrow down the eight different types of meds to three kinds (Ativan, methadone, and Precedex) in addition to weaning her down from those so when they try extubating, she has the best shot.

The huge catch-22 is that she still gets incredibly agitated when her sedation wears off.  Partly delirious, partly anxious.  But definitely agitated.  In my mind, to call it a ‘challenge’ to accomplish being able to wean her down from sedation plus being able to keep her agitation down is an understatement.  But that is the plan.

Today was the start, and she actually did better than she did yesterday.  Yesterday, she had 7 doses of the paralytic and “on to the second page” of her as needed doses of sedation meds.    Today, she has only had one paralytic since 7 am.  I don’t know the amount of other meds she has needed today, but it has been pretty consistent.  They are weaning down her fentanyl and versed drips and upping her ativan and methadone drips.

On a separate issue, she has developed pretty significant conjunctivitis (pink eye with a lot of goop).   She has also developed a peripheral blood infection, so they started her on vancomycin today.  Of course, when I hear “blood infection,” my first fear is sepsis.  However, the docs all feel that this was caught very early so it should be okay.

They are going to place a PICC line very soon to help get her meds because her right femoral (leg) central line will no longer draw back blood.  She can get meds through it, but they can’t draw from it anymore.

Dr. Bhakta came to visit Hannah and I today.  He stayed for well over an hour, and it was wonderful having him there to talk with.  I watched him when Hannah was getting agitated and needed more sedation, and he was just so good with her, putting his hand on her head and talking to her.   He has also offered to help us find a medical team to accept Hannah when we transfer her to a vegas hospital in a couple of weeks.

Tomorrow is one day closer to an extubation attempt (my guess is on Wed or Thurs).   One of the doctors mentioned a 40/60 chance of it being successful.  Even with that kind of odds, I just still can not get excited about the possibility of it working.  I hope, hope, hope it does.  I would love to spare her the trach.  I just am scared to get my hopes up.