Wednesday, November 12, 2014

Leaps & Bounds

It appears as though Natalie is ready to get out of the hospital. Since Sunday, she has made incredible strides in her recovery. It's as though a light switch flipped, and she decided she wanted to breathe on her own.

Since extubation last week, she was on the high flow (blended flow) nasal cannula. It's a step down from the large BiPap mask, but still provides a little bit of pressure to help her breathe, as well as some oxygen support. It makes her so happy to have the mask off!

On Sunday, the plan was to let her do a 40 minute trial on the blended flow. In the past, she hadn't done very well with it. The first test on Sunday went really well that a second test was planned for later that evening. It was supposed to last 45 minutes, but she did so well that it lasted over five hours. She went back on the BiPap overnight, but it was so encouraging that she was showing us she was ready to breathe on her own again. Maybe it was because Daddy visited on Sunday and got in some Natalie time.
Natalie got out of her bed for a while on Sunday while her sheets were changed
I know it gets to be a lot of medical terminology, but basically what happened was that Natalie's lungs healed enough, that what looked like another two weeks (at least!) in the hospital turned into just days. For the past few days, the doctors have been weaning her off of the oxygen support, in the hopes of getting her on a regular cannula -- or even just plain room air.
A peaceful afternoon, resting with the high flow cannula
This news is wonderful! I can see the end in sight...but the biggest hurdle right now is getting her off of the medication she's received over the past three and a half to four weeks. Being on the ventilator means being on some really addictive medicine, including morphine and Precedex (a sedative). She's no longer receiving the morphine, and she's now nearly done with her Precedex. I can't even begin to imagine how difficult this is for her, but I'm able to witness it with her high heart rate, jitters, sweating, and general grumpiness. I don't blame must be horrible. She does get some medicine to combat those side effects, but mostly she'll have to just get through this, and hopefully it won't last much longer.

In the meantime, she has a new g-tube and is dealing with whatever pain is felt following that surgery. She also has a new anti-seizure medication, so we're also cautious of how she's reacting to that. So far, so good.

It seems like a lot for a little girl like Natalie to handle, but the most important thing of all is that we've got our old Natalie back. She's smiley. She's happy (when she's not having a rough spot with her withdrawals). She's snuggly. The sparkle is back in her eyes.
She couldn't stop smiling when she got back on the cannula
So the million dollar question is: when will she get to come home? I''m hoping it will be in a few days or so, but it's hard to predict something like this. She still has her PICC line, and needs a bit of oxygen support, which means she still is ICU status. Pretty soon, we'll be moving out of the PICU to a regular room, which seems weird. I was hoping we could just go from the PICU right back to home, but it's best that she's not taking up a bed in the PICU if someone else needs it.
Our home away from home
This room has begun to feel like home to me...isn't that sad?!? So much has happened in here in the past few weeks. She arrived here via helicopter, nearly died here, celebrated her 8th birthday and Halloween here. There have been many tears, smiles, and laughter in this room, along with a lot of suffering. We've prayed, read books, sung songs, and whispered thoughts here. The walls are lined with colored pictures and get well signs, and balloons and stuffed animals are everywhere. I've slept for four weeks on the uncomfortable little couch...I'm fairly certain my bed at home is going to feel like a cloud. I've met some incredible men and women of the nursing and respiratory therapy staff. It's our little corner of the world.
Snuggle time is much easier now that she's on the cannula
And yet, I'm so excited to leave it! But leaving means I'm taking Natalie home, and this will be much like taking home a newborn fact, it's even more intimidating! With her new g-tube, we will have a whole new regimen for feeding and administering medication. We'll also be doing much more preventative therapy to keep her lungs from failing again. It seems a bit scary, but it will all be much easier than before once we get used to the new schedule. She's also getting a new wheelchair -- that was in the works before she was hospitalized -- and we'll soon have a new wheelchair-accessible van. Life is going to be so much different in the weeks to come!

P.S. Many people have encouraged me to take care of myself during this whole process, and it's easier said than done. However, a very good friend in Minot set up a special treat for me the other day -- a pedicure! Thanks to the help of another friend here in Fargo, I was able to enjoy a little time away from the hospital.
Pedicures were a fantastic treat


Anita Nettleton said...

So excited for Natalie and you all. What fabulous news. Continuing prayers for a fast track on the road to healing for her.

Barb Eltz said...

Soooo happy for those smiling faces!

Jamie said...

Yay!!!! So excited for her to come back home and to be back in school!! The kids and I can't wait to have her back in our class! Way to be a fighter!

Shan Haarsager said...

So happy to hear the good news! It's so heart-warming to see Natalie's smiles! All of you continue to be in my prayers.

Jane said...

This is wonderful news. It is been a long journey for all of you and it is so exciting that it will soon come to an end. Natalie is a strong little girl who is obviously happy to be on the mend.

Tera Melaas said...

Awesome news keep up the good fight. Praying for all you