Made of Gray

SPML (PERCS) Surgery

Raising the Rare ChildHolly D. GrayComment

Want to read the first post in this series? Start here...

I'm writing from home after our weekend adventures in Houston. Caleigh officially saw Dr. Yngve in his clinic and had the PERCS procedure with alcohol nerve blocks on Friday morning. 

SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com
SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com

Our arrival time at the surgery center was 7:30am. We woke up, showered and made a beeline to Starbucks for some quick caffeine. When we arrived they took us right back to the pre-op area. We were told that Dr. Yngve was in surgery with his first case and that Caleigh was next. 

Caleigh finally went back to the operating room at 9:40 and by 10:50 we were getting the okay by Dr. Yngve in the waiting room. All went well during the procedure. It was another hour before they called us back to see her waking up in recovery. 

SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com

In general, Dr. Yngve's harder cases or more complicated kiddos have their procedures done at the children's hospital in Galveston. For whatever reason he decided that Caleigh was well enough for the League City out-patient facility. There were two anesthesiologists, multiple residents, and several nurses on board for Caleigh's surgery. About half a dozen people were there. I'm not going to lie here... it was a concern of mine. We've never had anything done outside of a children's hospital, but I'm happy with how we were treated and how Caleigh's case was handled. 

Dr. Yngve is a man of little chit chat, but if you have questions or comments he answers them throughly. He knows what he is doing and you can tell that helping kids with this procedure is very important to him. We really felt comfortable. 

There were some issues with the medication for pain that Caleigh was prescribed on our request. Since she can't have the dyes or fillers that most meds have we asked for suppositories. We tried several pharmacies and called others and no one had what we needed in stock. So we made the decision to pick up the regularly prescribed meds and hope for the best in the tummy area. We should know how that works out this coming week. With these meds, the first night and long drive home was relatively easy.

I will say that a stool sample earlier this week was positive for blood. So we were going into this knowing that we will be returning to Boston soon for an upper and lower scope. 

SPML (PERCS) Surgery with Dr. Yngve via madeofgray.com

We are still waiting on her bowels to wake up and start moving again since the anesthesia and morphine. So when we got home we asked Caleigh if she wanted to stand in her stander. She immediately said yes. We decided 30 minutes was enough and helped her out, but she totally conquered the first stand. We have strong instructions to get her back up and going as soon as possible. The more she stands, walks and moves... the better. 

As of last night night we had to slow her feeds down and switch to a pedialyte drip. We've stopped the heavy pain meds and moved to tylenol. We're hoping that her intestines wake up and do their thing soon. As of now her abdomen is large and we pray that we don't have to head to the hospital. She is thankfully staying hydrated as of now. 

UPDATE 1/21/16 - I'm pleased to share that Caleigh's intestines have woken up as of this morning. 

Caleigh is rocking super star purple casts on both legs. She smiles about her choice when we talk about it. This week I will be in search of stylish socks to wear with her shoes while she's up and at it. Caleigh will have her casts for one month and she will have to wear the knee immobilizers for two months at night, which may be the hardest part of the whole procedure. 

Other than our usual short bowel concerns, the whole experience has gone pretty smoothly. We can already tell a difference in Caleigh's intense extension tone. When I expressed concern that she would lose all of her tone; Dr. Yngve said that Caleigh has enough tone for several adults.  One day out and we can see that she is still able to use it. Now we start the therapy needed to strengthen her weaker muscles and hope for a more relaxed state. Overall we are happy, but I'm not counting my chickens until the casts are off. 


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