Pharyngeal Flap Surgery- Day 8

Nothing new to say...still hurting!

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Pharyngeal Flap Surgery- Day 7

Will it really be one week since having surgery tomorrow?  I guess the days have been running together.  I don't really have anything new to share.  Red Shoes still is in pain and not eating too much.  I weighed him today and he has lost 3 1/2 pounds since surgery.  Hopefully he will rebound quickly once he feels better.  He slept most of the afternoon again today, that's got to be helping him.  This picture was taken when he was complaining about his throat tonight. 

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Pharyngeal Flap Surgery- Day 6

We've been needing to give Red Shoes his pain medicine every 4 hours religiously, even through the night.  Last night was the first time that we stretched it to 5 hours to see how he would do.  We figured that he could probably use the uninterrupted sleep even more.  It went pretty good.  When he woke up this morning he was in pain, but 15-20 minutes after taking the medication he was in good shape. 

Our neighbor girl came over this morning and played with him. He really enjoyed that. She is one of his favorite people. When we were at the hospital he was crying and wanted to see her.  He would tell you this morning was the highlight of his day.


He finally seems to be starting to catch up on some sleep.  So thankful for that. He slept from 1:00-4:45 woke up for his 5:00 medicine, fell back asleep by 5:25 and then slept until 6:45.  I think that helped him a lot! Pin It

Pharyngeal Flap Surgery- Day 5

We saw a little bit of improvement out of Red Shoes today.  He wanted to go outside this morning...so grateful that it is a lot cooler.  He was outside about 45 minutes and then he was ready to come in and put his pajamas back on.  He was really worn out.  The next two hours were pretty bad for him...until he could get his next dose of medicine.  After that the rest of the day was pretty good.  His appetite seems to be improving.  However, he wants a lot of things that he can't have right now.  He can only have soft foods for 3 weeks, and he can't have anything fried, spicy or crunchy.

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Pharyngeal Flap Surgery- Day 4

Not many changes today.   Red Shoes' medicine seemed to wear off a little faster than normal, so that made for a hard day.  He received a singing Alvin and the Chipmunks card in the mail and that made him really happy.  During the times that he was feeling good he would open the card and dance around.  It seemed like there wasn't a lot of in between today.  He either felt really good or really bad. 

We were able to get him to eat a little mashed potatoes and gravy.  He's still not too interested in food, but he is drinking good. 

We're encouraged by some of the sounds we are hearing him make.  He doesn't feel like trying too much, but there are some subtle differences already.  Pin It

Pharyngeal Flap Surgery- Day 3

Today has been filled with many highs and lows for Red Shoes.  He seemed to feel decent this morning and was taking his medication pretty well.  This afternoon has been bad for him.  When I tried to give him his 4:00 meds he ran into our bedroom and hid in the closet.  When I opened the door he was just trembling because he was so scared to take the medicine.  Since then he's finally been able to rest.

One of the highlights of the day was a sunshine basket that some ladies from our community brought over.  It's a cute backpack filled with presents for Red Shoes.  Each present has a long ribbon on it that hangs out of the backpack.  He's supposed to pick one ribbon each day and then he gets to unwrap that present.  The card said, "by the time you get to the last gift, hopefully you'll be feeling better".  What a cool idea!  I think the sunshine basket deserves a post of its own one of these days.  Red Shoes loved what he unwrapped today...it was Magic Grow Safari Animals.  You put these little capsules in warm/hot water and they turn into Safari Animal sponges...he enjoyed watching the transformation and then playing with the sponges.    What a sweet gesture from some special ladies. Thank you! Pin It

Pharyngeal Flap Surgery- Day 2

Brian stayed in the hospital last night with Red Shoes since I'm ready to have our baby any day.  It was a bad night for both of them (which we totally expected).  The nurses had to put some special monitors on him because his heart rate was too high.  He kept working himself up. 

Brian called this morning at 4:00 a.m. asking me to please come to the hospital.  Red Shoes was crying and wouldn't sleep.  We were all happy to see one another.  Even when I rocked him he still didn't go to sleep for a LONG time.  I've now seen waaaaaay too much Handy Manny and Special Agent Oso!

Red Shoes slept for about 2 hours this morning, which I would say was his longest span of sleep since he's been in the hospital.  When he woke up he wanted to get out of bed and go to the playroom.  That was a nice surprise. 

Brian did a really good job encouraging Red Shoes to try eating and drinking.  He did so good that this is what happened:

I couldn't believe it!  Red Shoes got discharged from the hospital!  He was pretty happy to have the IV come out. 

We have to be very timely with his pain meds.  When it gets close to being time for the next dose he's in a lot of pain.  It really hurts him to take the medication and he puts up a pretty good fight to avoid it.

We are so thankful to the doctors, nurses, care assistants, etc. that made Red Shoes' surgery successful and little more tolerable.  They are a pretty special bunch. 

Oh, and as far as his speech goes...I can't tell too much yet, but I can hear a difference when he says "dad".  It actually sounds like a "d" now. 

It's still going to be a long road with lots of therapy, and Red Shoes will have to learn that he CAN make new sounds now.  It's so exciting though! This was the best birthday ever...to have my Red Shoes home again. Pin It