PICU Day #9, Mama sad…

It has come to the point where I wander these hospital halls at night going between the 3rd floor (PICU) and the 4th floor (RMH) in a total daze.   Almost like I am on autopilot.  It would be one thing to go down, and Hannah was awake, alert, etc., so that she could interact with me.   But no, I walk down the halls pretty slowly, knowing that I am going to be seeing my heavily sedated daughter in her crib, wrist restraints on, tubes and wires and leads everywhere, totally unresponsive to me.

It makes me very sad.  I wonder if she hears me.  Sometimes she gets very agitated because the sedation wears off, and then she does sometimes notice me, but then there is a look of “Help, get me out of here in her eyes.”  Not sure which is worse, heavily sedated or the look of wanting out.

I don’t feel like going into details about today because it will such a difficult and emotional day.  But long story short, the doctors had a meeting with us today and feel that Hannah will likely fail re-extubation because they feel her failure was more due to her neuromuscular airway weakness then the pneumonia.   They are willing to give re-extubation another try, but the more we have to extubate/intubate over again, the more dangerous it becomes.

Also, she has already been intubated 9 days now, and that is a long time.   She has also developed a bacterial infection in her vent line, so they started her on antibiotics.

They aren’t trying to rush us to make a decision.  But Daddy and I both saw how fast she failed reextubation.  She cannot cough.  She does not have the airway strength, even before she got sick, to clear her throat and cough.  She gags, and she hyperventilates.   Also, if she gets hit with pneumonia again, especially in the next 6 months when she is most susceptible for a relapse, it will be an even harder experience on her.

She is so incredibly weak now.  This virus/pneumonia (and we haven’t even dealt with the seizure issue yet) has really knocked her body out.  Her muscle recovery is going to take much longer than the average child because of her hypotonia.   I felt so bad that she lost the ability to pull to stand a few months back because of a cold at home — we will be lucky if she can even grab for a toy or keep her head up during tummy time for prolonged periods of time.

We met with the trach team this afternoon and went over what would happen if we went ahead with it.  Surgery, then a 7 – 10 day stay in the PICU, 7 to 10 day stay up in the PCU (midcare unit), and then at least a week or more in the regular floor recovering.  When she is on the recovery floor towards the end of her visit when she is all healed up, they would start Daddy and I on trach care education.

In the middle of our conversation, we asked how we would get Hannah to Las Vegas after this recovery period since airlines apparently don’t allow “fresh traches” on flights.    It was at this time, the trache education met with Hannah’s attending and fellow, and they all agreed it may be a good idea to medi-flight Hannah to Vegas before surgery and have the surgery and recovery in Las Vegas.  This way, the surgery team will already know Hannah instead of getting a child ‘post surgery’ to observe.

So the discharge planning nurse is looking into the feasibility of this option.  It would make things so much easier on our entire family.   If we do it here, it would just be me and Hannah here for a month without anyone because Daddy and the kids leave for Vegas on June 4th.  They can’t stay.  We have to be out of the house.  Daddy would fly back and forth, but that would be incredibly stressful.    If we are able to do it there, we would have family support — which would be huge.

I talked to Dr. Bhakta tonight, Hannah’s pediatrician.  He is going to call the attending doctor tomorrow and get full details.  He did not seem convinced that she needs a trach yet, but as he said, he has to know what is really going on.  I so wish Dr. Roy, Hannah’s ENT, was not out of the country this week — of all weeks to be in another country and unreachable by cell or email…

I hope tomorrow brings better news.  I am just really, really sad now.   I’ve been dreading this trach idea for almost 2 years, since she was diagnosed.  It is not just the physical trach itself that makes me sad… it is mostly that this is slap-in-the-face “I told you so” progression of her Gaucher’s disease.

It is that invisible hump that once we climb over, we are in a whole new world — the world of a truly medically fragile child, not a child with just some special needs.