Face of hope

Face of hope
Courtesy: TIffany Kay Photography

Wednesday, April 10, 2013

Chiari Decompression: Day 2

Today has gone pretty well for Meagan after a rough start.  By pretty well I don't mean she is snuggling, or eating, or even really awake all that much - but she is comfortable...for the most part.  That is always my first  concern after she goes through a procedure, a surgery or a seizure  - comfort.  It seemed like it would be an impossible goal this morning because she was certainly a very unhappy little girl.

Last night Meagan's pain kept her up quite a bit.  We started to have some success, as I wrote about yesterday ... but as the night went on she became increasingly uncomfortable. She also spiked a fever so we had to add Tylenol.  She had hours of whimpering and crying and that heavy almost "walking on eggshells" breathing that happens when one is in pain.  Around 1:30am the nurses were finally able to get her on a good regimen of the valium/morphine rotation again and we had quiet in the room - she was sleeping!  I took advantage of the peace and also slept from 1:30 until about 5am but then awoke to her whimpering again. My poor sweet girl!  She wasn't screaming but just seemed extremely uncomfortable.  I knew coming into day 2 would be hard - it is always that second and third day of recovery that is almost worse than surgery day itself.  The nurses worked hard again to change up some of her meds and once again we had a comfortable, sleeping Meagan.

Boo for fever

Yay for sleep

My mom was able to stop by and visit as she left town.  It was nice to see her and to have her be able to give Meagan some snuggles before she left.  As soon as she leaned over the crib to talk to Meagan, Meagan's eyes turned towards her.  She definitely recognized my mom and slowly she reached one hand up towards my mom's face.  Still not a lot of smiles or activity, but a definite sign she was happy to see my mom and enjoyed her visit.  Soon after she left my friend Lori also stopped by.  She brought Meagan her favorite two things: a stuffed animal and a pack of Pediasure. She knows Meagan well!  Meagan once again reached her hand up towards Lori, showing recognition and also contentment with her visit.  I was happy to see these little glimpses of Meagan's personality.
Nanas make it all better

A sweet gift from Miss Lori

The rest of the day went fairly quickly. Her pain was managed constantly by meds.  The Neurosurgery resident from Dr. R's office stopped by to check on Meagan.  He realized her pain level was high, but, as far as surgery results and recovery went, he was happy with her progress thus far.  He said she was free to have her catheter removed and he put an order in for her to be moved out of the ICU. She had gone through the night and most of the day with steady vitals, so he said there was no reason to keep her in the PICU.  He called in for her to be moved where she may be a little more comfortable and have her pain managed a little more without all the "chaos" that the ICU brings.

Some good news that happened in the afternoon was receiving a callback from Nurse J, Dr. B (GI doctor)'s nurse. She had already spoken with Dr. B and they had gone ahead and scheduled Meagan's g-tube surgery. Yay! She is all set for two weeks from now to have her g-tube placed.  It might sound strange to some, especially those outside the special needs community - but I am beyond excited for her g-tube.  Meagan has struggled so long with weight, it feels awesome to take something else off her plate.  Take another battle away from her and just let her have some peace! She can always eat orally, but now the pressure is finally off.  No more worrying about calories from eating... no more worrying about if she was burning too many calories by trying to eat... no more worrying about losing weight when sick or having surgery.  Meagan gets to eat now just for the joy of eating. And we can take care of the rest (including her meds) through her g-tube.  What a blessing it is to have a way to help her and let her retain the joy she finds in food.  I also feel like we are one step closer to checking another box in the "list of things Meagan needs to do" column which hopefully will lead her to have an uneventful Spring and Summer.

**Warning** Incision picture

Meagan's incision - from the base of her head to the base of her neck between her shoulders.

As we stand tonight, the goal  is simply "staying ahead of the pain."  Her nurses have her morphine and valium set on a really good schedule and hopefully it keeps working.  Her incision was leaking a little bit on her pillow but they are confident it's nothing bad.  If we can manage the pain and keep that incision healthy these next few days I know Meagan will get the rest she needs and will have a much more pleasant recovery experience.  Dr. R did stop by later tonight to check on her personally.  He said although she seems uncomfortable, it was not unexpected.  The nature of the incision and the surgery was intense and invasive in a highly vascular area with a lot of nerves and soft tissue.  So we just need to give her time and let the medication do its job in helping her to relax.  He was hopeful that as long as no surprises arise, he may be able to get her home before the end of the weekend.  He said he would check in on her tomorrow and for now both of us try to rest.

So we can scratch off day 2 of recovery. We were pleasantly surprised, again, to receive a few more gifts for Meagan.  I love how the happy dancing colors of the balloons and the sweet soft feel of the stuffed animals are tangible reminders of just how much our sweet girl is loved. She is (and we are) truly blessed with our dear friends and family.  I'm  happy that Meagan's pain is definitely under control now and that other things, like her g-tube, are falling into place.  I can actually, dare I say it, see an "end in sight" to our crazy few months (I think).  I miss my older girls a lot, but I'm very blessed to have them in good hands so I can be here with Meagan.   Not exactly all roses, but what is? You don't get that beautiful red flower without a few thorns on the stem.

Thank you Aunt Amy and Parker...

...and Audrey Sue and family...

...and all Meagan's wonderful family and friends.

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