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!

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…