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.

I didn’t update last night.  Not much happened yesterday, pretty much same old, same old.

Hannah has started developing some gastric issues in the past couple of days.  She has not been ingesting all of her feeds and has had residuals in her belly.  So they had stopped the feeds for a few hours this morning and gave her Colace, suppository, and milk of magnesia to help her body go poop and to get her digestion moving again.  No luck yet.  She did have a big blowout diaper a couple of days ago, so it is not a dire issue at the moment.  They started her feeds at 1/3 the rate (10 mL/hour) a few hours ago.

Sedation is still a horrible issue.  They are just not able to fine tune what works best for her and when.  They added rocuronium, a paralytic, to the regimen to help keep her calm when she gets agitated.  The problem is when she gets agitated, she fights to get on her stomach to sleep (can’t do that with a tube in your mouth).  We have tried getting her to sleep on her side, which works for a while, but it is not what she wants.  They also won’t let me hold her to calm her down because of the vent.

Dr. Roy, Hannah’s ENT, came to visit us today.  We are so lucky that he cares so much about Hannah that he came on his day off, just after arriving off an airplane from South America for a week!

He does not seem to feel that Hannah got a fair shot at extubation last week.  She still had a lot of junk in her lungs, and she was not “optimally” weaned from her sedation at that time.   He thinks it would be best to give her one more chance now that her lungs are much better and once the TCH docs can wean her down on her sedation.

Then, if she fails re-extubation and has similar issues, then we can go ahead with a clearer conscience with the trach, knowing that we get her another shot when she was better.

He made the comment that even though she gets trached now, it does not mean that she will have to have the trach forever.  It could be that she is just too weak right now to do it on her own.  However, trying to be a realist, I just have a gut feeling that if we get a trach, it will be forever for her.

So we are going to give the docs a few days to get her sedation weaned and under control, and we hopefully will try again Wednesday or Thursday.  I don’t want to get my hopes up that she is going to be successful, however.  I would rather be fantastically excited that it worked than be horribly disappointed and crushed again if it doesn’t.  It is not that I’m a pessimist, I just feel like I need to protect myself from having to grieve all over again as I did a few days ago.  If she is not successful, she will get the trach and Gbutton a day or two after.

Thank goodness for Dr. Roy, seriously.  You don’t know how comforting it is to be able to put complete faith in a doctor’s opinion, knowing that they truly have your child’s best interest at heart.   Had he said that it was time to trach her, then I would have felt very confident that it was the right decision.   But the fact that he did not feel comfortable with jumping into this without giving her a second chance leaves me with some hope.

He made a very good point when he was talking to the fellow about this.  He said that Hannah has never presented as a classic case of Gaucher’s.  Since her airway is normal, and since she underwent general anesthesia 10 days ago with her ear tube surgery, he said he found it difficult to believe that her disease has progressed so fast.  He feels that this may likely be an acute illness rather than disease progression (just like when Abby had pneumonia 4 years ago and had to be hospitalized for 2-1/2 weeks).

So we just need to get her through these next few days until they try extubating her again!