Archives for June 2010

Yesterday was a nightmare.  Today was even more of a nightmare.

Yesterday’s facebook update (because I don’t feel like rehashing right now):
Having a fantastically crappy day — Hannah is a mess now that she is trying to be weaned off her meds to the point where after 5+ hours of thrashing around and finally crying, we had to give her another heavy dose of sedation meds to knock her out so she could get some sleep. Catch-22 from hell.

Early this morning’s facebook update:
Just had a one-on-one with Hannah’s attending for the first time ever. Unfortunately, there is no better way to wean Hannah off than to “just do it.” After yesterday, not the answer I want to hear. How ironic is it that we are no longer dealing with the virus and the pneumonia is gone — the things she originally was hospitalized for?

This evening…
Today’s nurse was awesome (as most of them have been).   We had never had her before, and I think that may have been a saving grace today.  After talking about it with another nurse who has had Hannah before, neither of them believe that was she is doing, the constant jerking/flailing/agitatedness for many, many hours on end, uncontrollably, was not completely withdrawals but could be neuro related.

After discussing all the withdrawal symptoms with the two nurses, Hannah only has a couple of them.  The flailing/jerking motions, but hers are completely full body from her head to her feet and everything in between, including her eyes.  Also, her pupils are slightly dilated whereas most withdrawal patients have really dilated pupils.  Hannah does not sweat profusely nor does she have loose stools.

After talking about this, they called the resident who came to talk to me, and I asked them to consult Neurology.  They were down within an hour, but they had ordered an EEG in the meantime.  While she was flailing and jerking around, they did an EEG on her, just to rule out seizures (which they did, thank goodness).     When the neuro attending and fellow came around (same fellow I had met when we first got into the PICU for seizures), they both said that it did not look like withdrawal to them either.

They believe Hannah has developed a “movement disorder.”  Of course, my first thought when I heard that was Hannah’s dear friend, Bertrand.

They explained to me that her movements are of a chorea type.   Whether this was brought on by her seizures (doubtful), the sedatives she has been given (likely), or her Gaucher’s disease (also likely), is unclear right now.   However, it is incredibly important to figure this out because if it is not drug-induced, we are in deep trouble, as it may likely be able to be controlled, not for certain.  I cannot imagine Hannah living with this condition, it is just outright cruel.

The attending neuro and Dr. Schiffmann talked via phone later in the afternoon.  I don’t know what was said, but hopefully Dr. Schiffmann was able to give him some insight into the neurologic part of this disease and how if could play into this movement disorder, if indeed this is the case.

What is worse, it could be a combination of this movement disorder and her withdrawal, so we still have to wean her off the sedatives.  But the only time she gets a break from this constant jerky movement is when we can sedate her.

Hannah is so exhausted.  In the past few days, the only sleep she has gotten from this horrible condition is when they load her up on sedatives.  Even then, she only gets between 30 to 90 minutes of sleep.   She is averaging maybe 6 or 7 hours of sleep a day now, and it is not a comfortable sleep as well.

I am pissed off about this whole situation.  My heart really hurts for Hannah.  I sit there with her, at least 10 to 14 hours a day now, just holding her hand and trying to let her know I am there while she is constantly jerking around.  There is nothing I can do to help her except try and hold her arms and legs down so they don’t go flailing all over the place.   At least when she is mommy-swaddled or pillow-swaddled, we are conserving some of her energy — even though her body still tries to throw her muscles all around, we can keep them from doing it.

The downside is that she develops a fever every time she gets more riled up, to the point of 102.4 today.  Then of course, the doctors want to do cultures AGAIN, to see if there is an infection in the line, which there isn’t.

Hannah needs a break.  She needs to be able to start feeling better.  She needs a chance to recover.

I just feel like it keeps getting worse and worse for her, and there is nothing I can do to stop it.

Dr. Albright did Hannah’s trach change very early this morning, even before I came down!  According to the night nurse (who was still on), everything went great, the stoma (hole) site looks clean, and she now has a regular trach collar on.

So during rounds today, it was decided that they were going to work on stopping the paralytic (rocuronium) today first.  So they halved her IV drip for about 7 hours, and then they cut it completely around 4:30 pm this afternoon.  Truthfully, by the time they halved it, she was already moving around quite a bit.  Sadly, she needed a bit more sedation because of this (her heart rate would start going into the 140s and 150s because she was so agitated).

I asked at rounds today if I could hold Hannah now that she had her trach change.  The fellow did not think it was a good idea until Hannah was off the paralytics, but her attending overrode that and said “absolutely.”  I was so nervously excited!  It had been more than 3 weeks since I held her.

As soon as rounds were over, the nurse asked me, “Are you ready?”  “Yes, Yes, Yes!”   It took 3 people to move her from the crib to the chair I was in about 2 feet away from the crib because they had to disconnect her IVs, leads, feeds, and then move her with the Foley catheter and vent.  It was such an undertaking getting her to me.  It must have taken about 10 minutes.  But they were happily willing to do it for us.

She laid in my arms, and she was wrestling about.  Uncontrollable, spastic type of movements.  She never really looked at me or noticed me.  Her nurse says that now that the paralytic is wearing off, she is wanting to move her body, but it is going to take her a few days to really get it out of her system and can control her movements.

I feel horribly guilty for admitting this, but it was not a comfortable and heartwarming experience as I had hoped.  She laid on me, shaking about, not even realizing it was me.  I was holding onto the vent tubes in order to keep them perfectly in line with her chin with one hand and trying to keep her legs from kicking around so much that she would fall off.   She never looked comfortable in my arms at all.

The whole time I held her, I was overwhelmed by feelings of guilt and discomfort.   Guilt because I knew she was not comfortable – not just with her sitting on me but overall.  Guilt because I wanted them to put her back in the crib after 30 minutes because I felt like she was just not safe in my arms with all the equipment attached to her while she was thrashing around.  Guilt because I wish she would recognize me and realize that I was there to comfort her.  Guilt because she has been in this state for more almost a month now, and I really can do nothing to help her but just sit there and hold her hand and rub her head and legs.

Later in the afternoon, the nurse asked me if I wanted to hold her again, and I just said “not right now.”   I felt like such a horrible mom for not wanting to hold her baby, especially after wanting to do it for so long.   I just kept picturing her squirming uncontrollably in my arms and trying so hard not to let her fall out of my lap or disconnect from the vent, not having a good grip because she was attached to so many different things.

Hopefully tomorrow, they will remove her Foley catheter that was put in during surgery since she is off the paralytics now.  Tomorrow, the plan is to start the weaning process from the sedatives.  Seeing how active she was while sedated when just getting off the paralytics was rough – I can’t see how the heck she is going to be able to get weaned off the sedatives without even being more agitated.

But I will do exactly what I have been doing.  Be right there by her side, caressing her face, holding her hand, kissing her nose and forehead (since I can’t reach her lips because of the dang vent), and just letting her know I am there.   My hope (based on the long-term plan from rounds) is that she can get off the vent in a few days.

Tomorrow is (hopefully) going to be a big day for Hannah.  She gets her trach changed out by Dr. Albright, Dr. Roy’s partner.  This is a huge event for me because it means she is ready to be finally weaned off the sedation and paralytics.  It means that we are one step closer to getting her to Vegas.  It means, most importantly, one step closer to getting to hold my baby girl.

I miss holding Hannah so much.  It is something I took for granted, even though I lived every day thinking about her condition.  I go back to thinking about the last time I really got to hold her, and that was 22 days ago in the TCH ER downstairs.  She was so inconsolable, thrashing back and forth on me, trying to get comfortable.

There is a reason I have not left the hospital here, and it is not because I am now “homeless.”   It is because I physically NEED to be here.  If something were to happen, big or small, I want to be right there for her.  I NEED to be there listening to rounds in the morning so I know exactly what the doctors are talking about and what they are thinking.   Even before we “moved,” I would not go home and switch nights with Daddy.  I just couldn’t.

I realize that this is not a new thing for me.  Looking back to when Abigail was in the hospital for almost 3 weeks for her pneumonia, pleural effusion, and empyema, that I lived here at TCH once she was transferred from our local hospital.  Even then, I think I went home for just one night, and I could not sleep that night, even though the hospital was just 15 minutes away.  That was the last time I would ever let one of my children be at the hospital without me.

Is it healthy?  Probably not.  Can I change it?  Nope.  Do I want to change it?  Absolutely not.

I will not leave this hospital until Hannah is ready to leave with me.  I don’t need “breaks” away from the hospital because if something were to happen, I don’t think I could live with the guilt of knowing I was not here.   I do go outside on occasion, maybe for a walk across the street to Chipotle or CVS, but that’s about the extent of my “away” from the hospital.   I spent most of my time between Hannah’s room, the PICU waiting room, the Ronald McDonald House, walking the halls (of which I have probably logged quite a few miles already), and going to the cafeteria/McDs/food court for meals (I have never eaten by  myself so much in my life!).

Let’s face it.  “Getting fresh air” when it is 90 degrees and 90%+ humidity is not really getting any fresh air, but rather it is just giving you another reason to take an additional shower!  (Trying to inject humor here).

With the exception of having two friends come to visit, I have really not asked for any visitors because I am just trying to “get through this.”   My two wonderful friends who did visit cried after they saw Hannah, and it was just too hard on my heart to put anyone else through that.    I have made friends with some of the families that have been here a while, and I have become such a “regular” down in the PICU that I don’t even request to have my name on the RMH room list for the night, the PICU receptionists automatically do it for me.

I am hoping, hoping, hoping for that time when Hannah finally turns around so that I CAN enjoy visits from all my local friends before we get transferred, so I can feel comfortable around them, just relaxing a bit, knowing that Hannah is on the mend, and not having to worry like I have been.

I keep reminding myself that this period of time is just another chapter in my crazy life.  Hopefully, this chapter will end soon, and I can dive in, full force, into the next chapter.

Hannah has been sedated and paralyzed all day, again.  Day #2 postop.

Daddy and the kids (and animals) all arrived in Vegas in the early afternoon at our new home.  Suddenly, it just all hit me at once that I am homeless right now.  I feel like a resident of TCH, wandering the halls at all hours to my room, my meals, and my new daily life.   Tomorrow will be the beginning of week #4 here.   My “home” is now 1600 or so miles away.

I miss my family.  I miss Daddy and the kids horribly.  What I would give for a hug and a kiss from them right now.

I miss Hannah, my Hannah.  I spent a lot of time in Hannah’s room, many times just sitting in the chair holding her hand, stroking her face, and massaging her legs.   She just lies there.  I want so much to just scoop her up and cuddle with her.  I would give anything right now to be able to just see her look at me and smile.   I see this beautiful little girl, lying in the crib in the PICU, completely still, still on a vent through her trach and about a dozen other leads and IVs, nonresponsive…

I miss my Hannah.  It has been too many weeks now since I have seen her just “be.”  It still will be a few more days until she gets taken off “fresh trach precautions” and may be even able to hold her again.

I worry about Hannah once they wean her off, her addiction to these narcotic sedatives they had to use.  I fear that they will change her.

I just want my Hannah back, exactly as she was 3-1/2 weeks ago.

When I checked at 5 pm to see if I got a room tonight at the Ronald McDonald House, I was bummed to find out I didn’t.  As I settled into the recliner in the PICU waiting room at 11 pm, I got an excited message from the PICU receptionist saying that there was an opening and to go upstairs and get my key!  Seriously, I felt like I won the lottery!

Anyway, today was a very mellow day.  Hannah did well through the night with some occasional agitation, but nothing like previously.  Then again, she is on so many dang meds including a paralytic drip that it was surprising she was agitated at all.  During rounds today, the docs saw her being agitated and were shocked.  I don’t know why it shocks them anymore, but maybe since this is the first time they have seen it, they realize the nurses weren’t being dramatic or something!

Because she was completely out of it, I spent quite a bit of time up at the RMHouse.  I had breakfast up here,  took a 2+ hour nap, and did my laundry up here.  Nothing like wearing clean clothes after recycling them for a week or so!   I spent a lot of time just sitting in Hannah’s room watching TV.

Dr. Roy called to check on Hannah this morning, and his partner, Dr. Albright, came to check on her when I was up at the RMHouse.  From his notes in her chart, everything with the trach and the trach site look “great.”

Tomorrow is going to be another heavily sedated day, but hopefully Monday we can start coming up with a game plan to get my Hannah back!

Oh yeah, Daddy and the kids, dogs, and cat made it to Flagstaff, Arizona tonight.  They should hit Vegas tomorrow!

When I woke up this morning, the plan was for Dr. Albright, Dr. Roy’s partner, to do the trach late in the afternoon.  Hannah would also get a gastric tube as well to help with the feedings, and Pediatric Surgery would do that.

I came down around 8 am, and Hannah’s room was completely empty and being scrubbed down by the cleaning staff.  My heart skipped quite a few beats!  I asked the nurse where she was and apparently she was downstairs getting an Upper GI series to make sure her GI tract was clear for the Gtube.  Nice of them to let me know!  Apparently, they did not expect to have to “rush” to do the Gtube today (as it usually is about 3 days or so after it is decided upon – and it was decided upon yesterday when she failed extubation), so they wanted to make sure the upper GI was done.

Around noon, the residents and fellows were asking me for Dr. Roy’s office number because they wanted to get information on what lab tests Hannah needed and to find out timing and everything for Dr. Albright’s surgery.

Around 1 pm, Dr. Roy calls me on my cell and tells me he is coming over to TCH to do Hannah’s surgery himself.   I handed my phone off to the fellow, and I could tell by the look on her face it was almost disbelief.  Apparently, Dr. Roy was coming over in 30 minutes from his phone call to do Hannah’s surgery!  it was a rush to get a Pedi surgeon available, and the fellow even warned me that there was a chance that they may not be able to do the Gtube at the same time because of Dr. Roy’s short notice.    Even one of the surgery residents came in and said basically “we are going to try our best to accommodate this, but we cannot guarantee it.”   Sure enough, they found the surgeon who was going to do it later that afternoon, and she was free so she was able to do the Gtube at the same time.

About 10 minutes later, I had surgical nurses, anesthesiologists, and other surgery-related people coming in and asking me questions, taking a look at Hannah, and getting all the portable gear ready for transport.

Dr. Roy showed up and got everything moving pretty quickly.   Even though I was a nervous the entire time, Dr. Roy’s part of the surgery only lasted less than an hour.  He came out to the waiting room, said she did just fine, and gave me a description of what I would be seeing.  I had asked him why he was doing the surgery instead of Dr. Albright, and he mentioned that Dr. Albright was not able to do it this afternoon.  I don’t know how Dr. Roy was able to get an opening in his busy schedule, but I am so dang thankful that he did because this way Hannah did not have to wait until Monday!

Then I waited for the Pedi surgeons to do their work.  Hannah ended up coming back to her room in the PICU, and the first thing I saw was her face.  I saw her lips, her nose, and her cheeks.  Even though I also saw the trach and its accompaniments, I got to see Hannah’s face after 2-1/2 weeks, and it made everything okay.  I missed seeing her beautiful, beautiful face!

She had her gastric tube in place, and she also had about an inch-long incision nearby the Gtube.  Finding out why that was there took about 8 hours, but we later found it was because they did not do her Gtube laparoscopically, but they did an actual incision instead.  I never did see the surgeons who worked on Hannah (unlike Dr. Roy who came out after), so I never had the opportunity to ask them what the incision was for and, now that I know what it was for, what were the reasons they did it that way?  My guess is her enlarged spleen, perhaps?  But I don’t know.

Dr. Roy called later this evening to check on her and see how she was doing.  She is on a paralytic drip and more sedation meds (argh….).  But for now, she has to be paralyzed and completely sedated as to let the trach settle and heal.  Unlike her gastric tube which is sutured in her body, the trach is a freestanding hole so it needs more precautions as it heals — as the sign on her crib says, “fresh trach precautions.”

It is over and done now.  Hannah has a trach and a Gtube.    We have now gone into the world of the medically fragile child instead of one with just special needs.  Our family has a LOT to learn in terms of how to care for Hannah, not only in terms of  how to deal with the trach, but also in terms of what limitations having a trach has for her (no more hydrotherapy, so sad!).

Tomorrow is another day.  I really am looking forward to getting her weaned off all this crap as soon as we can.  That is really the MAIN reason I am so glad that Dr. Roy did this today instead of waiting 3 more days through the weekend.

One more positive thing, we are now one step closer to getting to Las Vegas.  In a few days (probably Monday), we will have a better idea of when Hannah can be transferred to finish her recovery at Sunrise Children’s Hospital in Las Vegas.  I’m not sure who makes that decision — Dr. Roy or the PICU team, but I know that between the two of them, we will get it figured out!