Vegas, Day #42, Full of Smiles

Vital Jr formula

Now that we have been here for over 24 hours, we have noticed a huge change in Hannah’s personality.  She is just full of life now.  She smiles a lot at us, she cries when the nurses come in (like she used to cry when people she didn’t know well came close to her), and she actually sat and watched the entire 22+ minutes of Mickey Mouse Clubhouse — twice!

They brought down her pentobarb yesterday to the unit of 4 (not sure of the dosage, but we started the weaning process at 10).  She still has bouts of being miserable because of the withdrawals, but she gets quite a bit of benefit from Tylenol.   We are going to go down 1 unit every day of pentobarb until weaned off that.   Then I believe we start the Ativan wean and finally the nighttime chloral hydrate dose (which helps get her to sleep at night).

We stumbled upon a wonderful change in that Hannah has been dealing with a lot of gassy issues since we started feeding her via Gtube and even, to a lesser degree, before her hospitalization.   It got to the point that we had to vent her tummy with her Gtube after every feeding just to relieve the pressure (Mylicon only helped a bit).

So when we got to Vegas, they did not carry the formula that we had been using (Compleat Pediatric).  Instead, they started her on Vital Jr. nutrition, their Gtube formula (nonflavored).  Her gas has disappeared!!!  We have tried venting her a few times, and there is hardly a bubble to come out!  We know now that it was the previous formula that made her really gassy (the same one we used in her bottles before all this started).   Fortunately, we only have a small number of cans left here (that we will keep as an emergency), but I think this “stumbled upon” change has had a huge effect on her comfort level!

Hannah’s chorea movements are still improving.  She finally is no longer pulling out her hair.  Up until yesterday, her movements were such that her arms would flail to her hair, and she would grab on to it (because she likes to try and grab hold of things, especially our fingers).  But because she did not have control of her grasp reflex, she could not let go of her hair, so she would end up pulling out little clumps of hair when her movements were really bad.  Yesterday, I noticed when her hand went into her hair, she grabbed it, but she was able to let go before pulling it out.

So the only areas of concern we have to watch for are the withdrawal symptoms, which we can better control at home by keeping her busy by the kids and our extended family, her tachycardia (heart rate averages 150 to 160 when awake and napping, but drops down to about 110 when deep sleeping) related to her withdrawal and high metabolism, and getting her going on PT and OT to help her regain the strength and skills she has lost (which will be set up for home by Case Management).

Just a happy girl biding time in a hospital room, waiting to go home!

The amazing news is that they are talking about discharging her tomorrow or Tuesday at the latest (depending if everything can be organized in time for Monday)!   Everyone here feels that she will recovery more quickly being at home in a normal environment that being in a hospital bed, especially since she can be closely monitored with Home Health nurses and many followup visits to various doctors.  So, orders were being prepared all day today for medications, Home Health nursing, multiple specialist and pediatrician visits, and we will be working closely with the case management specialist on getting Hannah all the equipment we need to bring her home.

Hopefully, hopefully, hopefully, we can bring our baby home!!