Friday, March 15, 2013

5 Days In the Hospital


Miles was transferred to the Abercrombie building on Friday after 24 hours in the PICU.  He had been officially diagnosed with Staph Scalded Skin Syndrome (SSSS), and was on morphine and antibiotics, along with allergy medication to control the itching, and Aquaphor rubdowns to protect his skin as much as possible from the blistering.

Besides knowing that a regular room meant that his condition was improving, the room itself was a big improvement over the PICU: there was a bathroom in the room (with a shower!!), which meant Jamie and I no longer had to make the quarter-mile walk to the visitor's restroom; there was a couch (plastic, but present) and an armchair to sleep in; and Miles no longer had to have the monitors all over his chest, so there were fewer cords to deal with.  Of course, the stickers from the monitors tore all of his skin off when they came off, so they had to stay until they fell off on their own.  But the cords could be unclipped!

The next few days are a bit of a blur.  There was constant DVD watching (more shows and movies than Miles had ever watched before in his life), frequent trips to the bedside commode (one of us carrying Miles while the other managed the IV cord), and nonstop monitoring of Miles's improvement, by us and by the medical staff.

Miles did have another eye exam (his third, I think), along with a topical treatment to try to heal some of the skin damage on his inner eyelids.  Jamie and I were asked to leave the room for the procedure, and when the shocked nurse spoke to us afterward, she said she would recommend that he be sedated if another eye exam had to be done.  She had no idea it would be as traumatic as it was.

Miles's diagnosis and treatment, seen under his Lightning McQueen balloon
A brief respite from DVD-watching
Watching The Jungle Book with all of his animals - kangaroo, Nemo, Logan the buffalo...
One of the "Child Life" specialists even brought in some toys and books for Miles to enjoy during his stay.  He loved having the cars to play with, since he was stuck in bed!

Playing with cars with his damaged right hand and new IV in his right arm

At one point, Miles IV came out, which was awful.  When the IV had originally been placed (at the first hospital), they had tried to place it in his right hand.  That vein was blown, and when they removed the tape, just a few seconds after placing it, the skin on the back of his hand went with it.  They then placed the IV in his left hand, where it remained for the next few days. At one point, a nurse undertook a long and delicate process to try to remove all of the tape and gauze surrounding it without damaging Miles's skin and arm.  She did an amazing job, and replaced it with a contraption that put as little tape as possible back onto his skin.  When the IV in his left hand came out, his nurse called in a special unit that did nothing but place IVs for their entire 12-hour shift.  They came in with an ultrasound machine and used a wand to find the vein in his right arm; the IV was placed quickly and fairly painlessly, and I could have kissed them for sparing him more trauma.

Slowly but surely, Miles began to improve.  His skin started to get better; I even posted some pictures of his healing face online - something I didn't do at the beginning of the ordeal, since his condition had been so bad.  He even got his energy and personality back, and started making jokes again.  After a while, he was able to walk to the potty instead of having to be carried, though we had to watch him carefully since he was still weak.

My favorite times were the times his bedding was changed - I got to hold him!  I would wear a soft hoodie that completely covered my arms, and I couldn't really put my arms around him since I had to be careful not to put any pressure on his skin, but it was the closest I could get to cuddling him.  He would sit on his lap, leaning back a bit against me, and I could have my arms up against his sides a little bit.  Heaven.  

Watching a show

Watching The Jungle Book

Making silly faces
And along with the healing came the ability for him to SLEEP.  The last 2 nights in the hospital, Miles slept the longest he had slept in... well, ever, I think.

He enjoyed eating breakfast in bed, and loved to order us about - "Juice! Cwanberry!"  And we were so happy to have our boy back.  We had more visitors Sunday - my friends & colleagues Terri & Therese.  Miles had a lot of energy back by then, and bounced around (naked, of course) on the bed the whole time they were there.

One thing he loved about the hospital, at least the last day or two - getting full-body rubdowns with Aquaphor by his nurses. He would lay on the bed with a huge grin on his face and inform them of any spot they may have missed.

Sunday night, Miles's IV was disconnected and he was given an oral antibiotic instead of IV.  He was also given a dose of Tylenol with codeine instead of morphine - the last painkiller he took.  The switch to oral antibiotics and the pain tolerance were the last things the doctors needed to monitor before he'd be able to be discharged.

Breakfast in bed. 

Monday, we had our final visit from the team of pediatricians, who gave us Miles's discharge orders.  We were able to leave the hospital room at 12:30pm, with Miles clothed (in pajamas, anyway) for the first time since Thursday morning.  Jamie brought the car around, and we headed home.

Miles is doing great now, a week and a half after being discharged.  He finished his oral antibiotics yesterday, and the only thing we're doing now is rubbing Aquaphor on him where needed.  (He's continuing to peel, though it's just superficial now.  We're assuming this will go away in a couple of weeks, and is just a residual effect.)

Jamie and I both seem to have a bit of PTSD from the whole thing.  We both get emotional about it still, and have times during the day when we feel a desperate need to just give Miles a big hug and see his twinkling eyes.  Gisèle had a wonderful time with Nana, but she occasionally says, out of the blue, "I hope Miles never has to go the hospital again."  She also has had some abnormally bad behavior lately (as has he), which could be related to the recent upheaval in our lives.

But things are settling back to normal.  And everyone is fairly healthy.  (The definitive strep test on Miles from the hospital came back negative, by the way - he never had strep.)  And God is GOOD.  Thank you all for the many prayers you sent up during this time; every one of them was felt.

Trish signature for blog


Grandma said...

We are so thankful Miles is well again. There were a lot of prayers for him.

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