Archives for June 2010

Today just sucked.  No other way to describe it.  Can’t even say it was a roller coaster type of day because it wasn’t.  It was just tough, emotional, and painful.

I found out that her night last night was absolutely horrible.  She was so angry and agitated from being weaned off the sedation meds that apparently she threw up a number of times, and her wrists became red from wrestling against the restraints.  The nurse decided against calling me last night because she did not feel I needed to see it, and truth is, Hannah does not recognize me as Mommy right now.  Maybe that is the reason I woke up at 1 am last night and could not fall back asleep until 4 am?

It is so obvious to me that Hannah is going through withdrawals from the narcotic sedation they have been given here.    I’m not the only one it is obvious too, but I can’t say who else agrees with me on here, but there are at 3 people in the medical field who also agree.  I also came to find out later this evening that seizure medications (she is on Keppra now) also may have a conflict with sedation meds.

ARGH!!!!!!!!!    In my heart, I truly believe she did fail extubation in part because she was still dealing with all the drugs in her system.  She was shaking horribly during the time they took the tube out (withdrawal type), and she just never really got a hold on being comfortable.

I thought about it, and when they first extubated her, her lungs were still junky, she still had pneumonia, and she lasted a good hour before the problems started (being reintubated 2-1/2 hours later).  This time, her lungs were clear, the pneumonia was mostly gone, and she did not even last 10 minutes before the breathing problems started.   During her first extubation, she was still a bit shaky and spastic, but it was not anywhere near as bad as it has been in the past week.  In my head, that tells me that the meds are a good part of the problem.    We know from her ear tube surgery a few weeks ago that she can undergo general anesthesia without any problems and that her airway is good.

Regardless of the reason she failed, meds and/or airway issues, she needs a trach.  That is a given.  The difference is that if it is sedation-related that we can revisit this in a few months to see if she still needs a trach.  If it is airway related, well then, it was time.  Since Hannah is a bottle-fed baby, and a messy one at that at times, we decided we need to go ahead with the gastric tube so we have an alternate feeding method to make sure she gets her calories.

Dr. Roy came by to visit again tonight.  We talked for a while, and he had scheduled that his partner do Hannah’s trach surgery tomorrow.  He is going to try and be involved in it, but with his schedule, just even offering to try is a wonderful gesture.   I found out after he left that the “catch” is whether they can get the pediatric surgical team to do the G-button at the same time tomorrow.

I’m frustrated, incredibly frustrated.  I shared my frustration with her attending (our third one in the PICU, and the first one who I feels actually listens to me).  She also believes that the ‘sedation nightmare’ issue may be involved with her failed extubation attempt.   That was the reason she was considering a bronchoscopy to be done in the OR — to see if the airway was damaged for whatever reason or if it was neuromuscular in nature.  Dr. Roy nixed that idea because regardless of the outcome, she is going to need a trach at this point to get her through this — whether it is permanent or temporary.   There is no reason to put her through anything she does not need if it does not help the outcome.

So, we will see what happens tomorrow…

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.