Josh age 4

Josh age 4 1/2

This is a long one, detailing our stay in St. Louis with some extra info at the end if you want to skip down to the end.

Hello all, and thank you for keeping Josh in your prayers during his surgery last week:)

The surgery went well and Josh is still recovering, and is doing fairly well considering it's only been a week since his tongue reduction.  I thought I was prepared on what I was going to see after surgery, but it definitely was worse than I imagined.  When I was told the tongue would be swollen, I thought it would just look like it already did, but it's actually swollen underneath the tongue.  We couldn't even see the top of his tongue until a couple days later.  Here's a little review of the surgery for those who will be going through with it soon.

Josh didn't go into surgery until 3:30p.m. (which made it hard to keep him busy without having anything to eat since 7pm the night before) due to all the last minute x-ray's and concerns about his lungs being strong enough for the surgery.  After the surgery, the doctors didn't want to give Josh too much morphine because they were extra cautious about his lungs and they didn't want him to stop breathing.  Josh was in a lot of pain and was thrashing around for about 5 hours, when they finally decided to do a morphine drip.  This finally helped with keeping him at an even keel and getting him over the initial hump of pain.  He did bleed, but it wasn't bad, just kind of drooled out of his mouth.  He stayed in ICU for the first night and then was transferred to the floor the next morning and was able to get off the morphine drip and just receive it when needed.  While in the ICU Ken and I took 2 hour shifts, one would sleep in the parent lounge while the other sat bedside and watched movie videos as Josh slept, we had to be there to lay him back down when he would suddenly try to stand up due to confusion.  Tip-The videos helped us stay awake, the nurses will give them to you.

Day 2
Josh was still needing morphine every 2-3 hours and wanted to be held all the time.  He never would get comfortable enough to sleep in his crib.  The bleeding did stop, he just had pink drool.  The tip of wearing dark shirts was definitely nice to know about, however, it's not just the bloody drool but how much his mouth and drool smelled.  It was and still is pretty bad.  Ken and I took button down jean shirts to use as smocks to take off when we would leave the room so that the smell wouldn't offend anyone else.  They also have the yellow gowns most of you may remember from the NICU days, however, they were quite warm to wear. 

It definitely was better now that we had the pain relief under control and he was not thrashing as much.  Ken and I decided to take shifts again, but longer intervals.  Ken would leave at night and then I would leave in the morning and if I didn't get any sleep I would take a nap and shower and return about lunch time.  Doing the shifts helped us stay calmer with Josh being so needy.  We stayed at the Ronald McDonald House, which was fabulous, it was only $5 a night and since all we needed was a bed and a shower it worked out great.  It is really nice and if you don't mind sharing a bathroom with another family then I highly recommend trying to stay there.  To do so, you just need to call the social worker at the hospital 3 days prior to surgery and she can call to get you on the waiting list.  Cancer patients do get first bids though. The social worker also gave us food coupons for the cafeteria, which at first I thought we didn't need.  But, after eating 3 meals a day for 5 days, it was greatly appreciated to have them to help incur some of our cost.

Day 3
Josh was starting to play a little more, but still needed the morphine.  However he would get his last dose at 9pm and finally have a good night sleep.  He still wanted to be held during the day, but finally didn't mind sleeping in the crib this night. 

Day 4
After having a good night sleep, Josh was ready to play.  The doctor ordered for his IV fluids to be lowered in hopes of getting him to eat.  He was really starting to hate his hospital room and we did many rounds around the floor in his stroller, a wagon and crawling.  In fact, he would fight us to get on the floor in his hospital room so we put him down and he would go straight for the door.  After my shift of rest and showering I stopped to get McDonalds as Ken was craving something other than hospital food.  We decided to eat in front of Josh hoping in addition to less IV fluids he would get hungry and eat, the McDonald's french fries were the trick.  He grabbed one and tried to eat it, but it just got soggy, I ran out to the nurse to get some pudding and voila he ate it along with another bowl of pudding and mash potatoes.  Yeah!! 
He had a horrible night this night because he was so tired of nurses and respiratory coming in and bothering him.  He's such a light sleeper as it is.  We were unable to get a private room, but by day 2 our roommate was transferred, so the rest of the stay we had the room to ourselves.

Day 5
The resident came in around 6:30am and I asked since he was eating if we could go home and because we were running out of ideas to keep Josh occupied.  He wanted Josh to have at least 6 ounces of fluids before we could go.  Well, this was a problem since Josh wouldn't drink out of anything we tried, the syringe trick didn't work as he's scared of anything medical.  So, I went back to the House and then to some grocery stores trying to find other cups or bottles or anything that would help him drink.  But I couldn't find a thing and returned to the hospital.  As I went to our room, the nurse said he took 6 1/2 ounces, I asked how and she said that Ken spoon fed him all 6 1/2 ounces while he had Barney on TV.  She immediately called the resident and we were out of there within 30 minutes.

Josh was so glad to be home and to see his big brother, who was spoiled rotten by both sets of grandparents while we were gone and I'm still trying to get him back to realty.  I thought I was going to be able to say Josh isn't that clingy or whiney, but today all he wanted was to be held.  The hard part is in the morning before we are able to get him motrin, which is hard to get him to take since he doesn't want to eat quite yet because it hurts until he has the motrin.  I'm thinking about getting some suppositories.  He sleeps pretty well at night with getting up only once, but going right back down after a couple sways (knock on wood).

I've been catching up on everyone's e-mails since we've been gone and I wanted to mention something on the lines of teasing.  This was not something we thought of as a reason to get the reduction until Dr. Marsh mentioned that it's not just teasing but how people will portray him and treat him, even teachers may treat him as he had a learning disability. This made us even more in favor of the reduction.  I have to say that I noticed that Josh does look different now, but it's hard for me to really tell, it's comparable to someone who has had a mustache for years and then they shave it off and you can't tell what is different about them.  However, I did mention to my husband that I now see Josh more as a toddler than an infant.  I didn't realize it until now, that I always treated him like he was so fragile, when really he is so tough and so independent this could also be because of all his other health problems.  So, even a mother can subconsciously treat their own child differently.

I also wanted to mention that while we were at the hospital, Dr. Marsh had a 10 year old BWS patient come in for a check up who had the tongue reduction when he was 13 months old.  He and his mom and step father came up to see us, it was so great to finally meet another family in person.  Dr. Marsh said that Jordan had about the same under bite that Josh has and all he has needed was a retainer and his jaw has recovered.  This gives me hope that Josh won't need any other interventions to help correct his underbite.

Well, I need to go and get some rest so I can be ready to hold Josh all day tomorrow.  Sorry so long and for any spelling/grammar errors as I'm still trying to catch-up on sleep.

Mikki