Vegas, Day #41, Settling in!

We are in Vegas, baby!!  When the TCH transport crew came to pick us up at 7:30 am, I had the biggest grin on my face!   I was so excited to see them that I think I was talking much faster than normal and could not stop smiling.  They loaded Hannah up on the stretcher, grabbed our suitcase and bags, and we were off!

After a quick 30 minute ambulance ride to the airport, I saw the Cessna Kangaroo Crew jet.  It was awesome!  If I could find my camera adapter, I would upload the pics, but those will have to wait.  I will admit, it was pretty cool flying in a personal jet to Vegas.  The nurse and the respiratory therapist on board were fantastic and very engaging with Hannah.  She needed a bit more suctioning than usual, and they ended up giving her just a bit of oxygen support because the air pressure changes brought her O2 sats to where they hovered in the low 90s. 

I saw the most incredible view of the Grand Canyon as well.  It was so much more massive than I had ever realized!

Once we touched down in Vegas, we were met by a local EMT ambulance who drove us to Sunrise Children’s Hospital.  The “rule” is that they have to transfer ICU to ICU, so since Sunrise did not have a PCU step down unit, we were back in the PICU.   We got settled in fairly quickly!  

The rules were different than at TCH so that Ethan and Abigail could actually come into the PICU and spend time with us in Hannah’s room.  I was thrilled because they had not seen Hannah in almost 6 weeks!   We also got to put Hannah in her regular clothes instead of naked/diaper or hospital gown. 

As soon as Hannah saw Ethan (he ran to her bedside), she lit up like I have not seen since she was hospitalized!  He was making her laugh, making her want to move, and just so happy to see him!   When she saw Abby, she even tried rolling over on her side towards her!    It was beautiful, beautiful to see her not only recognize her brother and sister, but obviously she missed them too!

I also could not stop hugging Ethan and Abigail.  I had not seen them in almost a month!  Abby was attached to me like crazy, but I did not mind one bit. 

We met with the ICU attending, and he felt there was no reason to keep her in the ICU because she was doing “much better than he was told.”  His logic was that most of weaning can be down as a closely-monitored outpatient, because she would likely recover better being at home than sitting in a hospital bed all day.  At first I was very nervous about this because I was told by TCH that it could be a couple of weeks in this hospital, but then I realized that we basically just spent the days in the hospital room, never really needing any medical support or assistance other than just regular care help like getting Tylenol, getting a bath, or trying to silence the heart rate monitors that would not stop giving errors because of Hannah’s movements. 

And after seeing how motivated Hannah was after seeing her brother and sister, I know that she will do much better with a normal home life than lying in a hospital bed all day long.

So the tentative plan is to start the weaning process again at Sunrise tomorrow and use them to help us come up with a lifestyle plan for us to settle in here.   This includes a G-tube class, nutritional guidance to figure out a feeding plan, setting up PT and OT, coming up with a med schedule, setting up home medical supply services, setting up home health services, finding follow up physicians, etc.   Fortunately, we took all our trach care and change classes at TCH, so that is off the list!

If all goes as hoped, we could get Hannah home in less than a week!!  

As for me, I am now sitting in my new home in my new office on my computer I have not touched in a month and a half.   My father-in-law came to the hospital to sit with Hannah so that Daddy could drive me to our new house, give me a quick tour, and then he was off to spend the night with Hannah at the hospital.  My inlaws took my kids for the night so that I could just crash and relax.

And I did.  About 5 minutes after Daddy left, I went upstairs to my new bedroom, crawled into bed, and went right to sleep.  I just woke up a bit ago after a 7-hour “nap.”  Of course, my days and nights are still off too, but hopefully I can get some more sleep later today.   So for now, I am just vegging at my new house, having quiet “not having to worry about beeps and monitors” time, and trying to decompress.  After 6 weeks in a hospital and coming to a new home, I feel a bit out of place, but I will get over it.

We are “home” now.  In Las Vegas.  Our family is back together in the same city.  If all goes as hoped, we will all be back under the same roof soon.  Hannah has a long, long recovery ahead of her to get her back where she was, but if her attitude she had when she saw Ethan today is a sign of anything, she will get there!