Friday, October 17, 2008

Reid's home!

Getting a little rest....because of "blankie" from home. That makes everything better!

He hated his IV's....couldn't get cozy.

Friday morning....swollen, but in good spirits.

A little play time with Daddy.

Going home from Rainbow. We were treated so well again, and had a fantastic support team there. As you can see from Reid's smile....he loves his team of doctors that have totally changed us all.

Reid and Ellie's mom here.
We are home...and exhausted to say the least! Reid did well for his palate surgery. I am amazed at the resilience of kids. It truly astounds me. Reid was taken back to surgery at 9:45 am Thursday morning and arrived in recovery around 4:00 pm. It was a long day for us all. Reid was given some pretty strong pain meds in recovery and was out of it until we got to his room around 5:30 pm. Dr. Gosain was able to construct the palate with the tissue that Reid had and did not have to go any other route, which we were grateful for. He was also able to create the front gum line and get it all aligned. One tooth had to come out (which we have for the tooth fairy!) but the other top teeth are still there. They may have to come out later, we'll see. Reid did require a blood transfusion in the OR due to the amount of blood loss that he had. They also checked him through the night by taking more blood to check his levels to make sure all was ok....or he would have had to have another. Thank goodness, all his levels were ok throughout the night. Reid made life tricky for me last night, but I can't blame him. He just felt cruddy. He had some drainage from the nose throughout the night and HATED his IV lines. HATED THEM. So, I held him all night in a horribly uncomfortable rocking chair, and I felt so bad for him because neither of us could get comfy....but he would have NOTHING to do with laying in bed for longer than about 10-15 minutes. It was a long night. Then, right when we would get cozy and comfy.....(for a brief period, at least) a nurse or doctor was in to check things out and would wake him up. Not fun. I know they have to....just not fun!

Ok, my cleft family friends...we DID NOT get arm restraints....or instructions to use any from past surgery. Sersioulsy. Mistake???? I don't know. Reid is on a soft diet for 6 weeks and nothing in the mouth except a sippy cup.....but no restraints????? I don't know. I put him in bed not more than 10 minutes ago...and I am going to sleep near him....but dare I let him go without restraints? I don't want him to poke his mouth and cause an issue, that is for sure! He has a blankie that he holds at night and puts by his cheek....but hasn't had the guts to try for the mouth yet. Too sore. Advice? Lay it on me! I'll take it. During lip repair surgery, we used them for about a week...and then he really did ok because he wanted nothing to do with his mouth/lip area. This time around, I feel a bit more nervous. With all the tissue involved...I just don't want to mess it up!

He has eaten fairly well today. He wants to eat more than drink. He took about 4 ozs. of apple juice today and maybe 3 ozs. of milk. He ate yogurt, ice cream (2 times) , applesause (2 times), a jar of carrots, some bananas w/ pudding...and some pedialite. He has had wet diapers today, which is good, and seems to be happy to crawl around. So, again to my cleft families.....I am so worried about him bumping his face and hurting himself. Did you watch your kids CONSTANTLY during this time period? Reid was NUTSO tonight. Wanting to just get into everything and just dive in to his toys. I was constantly within reach so he doesn't bump himself. So, my question to you....when can I relax a bit? Or do I freak out for 6 weeks? : ) Let me know. I am going to send Brian off the deep end, I think!

Lastly, thank you ALL for your support, unending love, and time you have dedicated to our family. We are grateful to you all. We value each of you....and thank you for being such an important part of our family! More updates to come soon....I am sure. We'll hope for a calm night tonight.....

****Abby....Reid's gift came in the mail today! What AWESOME timing. HE LOVED IT! Thank you for being so special and sweet. Reid sends lots of kisses your way, little one! Thank you so much!


The Dawkins said...

I am so glad it went well, I hope he has a speedy recovery. Was this a soft palete repair?

Good Remedy said...

Welcome home! Isn't it so much better to be in your own comfortable chairs, couch or bed? Even if you still aren't sleeping!

We are on day 9, Holly is still waking up every 4 hours on the dot for Tylenol. No codiene at this point, but still is needing Tylenol. Anyway, YES we are using the arm restraints. 10 days I think. And yes, I think I will be watching her like a hawk for 6 weeks. Although you know they are sneaky little ones :-)

I would call and ask, better asking a dumb question than the alternative. Every doctor does things different, it seems.

Those first few days Holly did better with food rather than juice too. I wonder why? But who cares, as long as they are eating!

Holly looked just like Reid. I couldn't bring myself to take pictures, so swollen.

What great, great news about the gumline. Super cool! That will surely help in the future?!

Most of all, glad you are home safe and sound. Best Wishes, Peggy

LifeWithTheFerrells said...

Janeen, Coming from Shriners, I think they have the strictest of restrictions of any doctor! She was on straight liquids for 11 days, no solids at all, and only syringe or out of a cup (not a sippy). Arm restraints had to be at all times for those 11 days as well. They wanted nothing in the mouth that would cause them to suck ( like sucking food off a spoon etc). I know they told us that they have the lowest occurance of fistulas because of their strictness. They also said that if she did get something in her mouth and mess the palate up, they could never get it as perfect as this first time. They were going to cast Makenna! At least with the No No's we could take them off for a bath and a few minutes each day.
I remember that night of surgery.....a nightmare to say the least! And Scott went to the Ronald McDonald house and slept on a select comfort bed while I was up ALL night with Makenna! Please Please call if you have any questions or need anything. I will be around tomorrow morning (Sat) and most of Sunday!
We will keep praying!

Heather said...

What a long surgery!!! I guess I didn't realize it was such a longer process than the lip repair. That's amazing they fixed his gumline! I don't think Aidan will get his fixed until he's 8 or 9, when they do the bone graph.

I'm not sure what to tell you about the arm restraints... I know we tried with Aidan after his lip surgery, but he just hated them and I felt awful. So Chad and I took turns watching him like a hawk and he was ok. But Reid is so much older... you'd think, though, that because he's older, he'd know that it would HURT. But you don't want to chance his first "trial" in case he damages something!

I'm hoping for a good night for you all!

Bauer Smehyl said...

Welcome home!! So glad to see everything went well. What a sweet little guy. Yeah. You would think somebody would invest in some serious Ethan Allen recliners or something for us poor moms. Those babies just want comfort so bad and being on momma is #1. Right after codeine, of course. :)
Sounds like you all did awesome.

About the arms braces. I figured with the amount of stuff you and the baby have to go through with all of this why even risk ANTYHING happening. Bauer wasn't mobile at the time and we still had to watch him like crazy because he wanted everything in his mouth. He wore braces for about 4 weeks especially when he slept. After that we started letting him go without but still watched like a hawk! Good luck. One day at a time.

The Millers said...

Welcome back home. Glad to hear everything went as well as can be expected. We were praying.

Anonymous said...

I didn't even see that you guys were home, but I've thought and prayed for you yesterday and today. I'm so glad you're back. Just knowing you're back across the street is comforting. :) I'm so glad things are going as well as they are. I'm sure it will be difficult to rest for a few days.

We have a house full of boys, as perhaps you've looked out and noticed. Of course that's the norm here most days!

Call (or yell) if you need us!

Vanessa :)

Grin and Barrett said...

Welcome home! Even though he is swollen he looks great! Sorry to hear the night was yucky. But hoping tonight is much better. Hugs and sweet dreams!


Plus 3 said...

I'm glad Reid is doing well now. I've been thinking about you. Rylan wouldn't sleep in the hospital bed either and hated the IV as well. He also wouldn't take liquids, which is ALL he was allowed for the first week. I introduced him to Pedia Sure during that time, and he loved it! You might try it. Also, Rylan had to wear the restraints for a full 3 weeks. I was compliant for about the first two weeks. Then I relaxed a little. If he was in the room with me, I just watched him closely and only used the restraints for sleeping, which he wasn't happy about but eventually got used to them. I think if Reid isn't putting things in his mouth all of the time, you could just watch him closely. Otherwise, you might want him to wear restraints just for your peace of mind. (Although, nothing else will be peaceful!) I hope he has a speedy recovery with wonderful results!

I sent you an email a few weeks ago, but maybe I have an old address. You can email me at fun2bplus3[at]hotmail[dot]com.

Mark & Kara said...

Mark and I are so happy Reid is feeling as well as can be expected. If you need anything at all, remember we are just down the road! Take care, Kara & Mark

Krissy said...

Hey-Sorry for just now having a chance to comment...things are been crazy busy here (I have been cking in on Reid though)! I am SO GLAD that things went so well and from your recent posts, it looks like Reid is doing great!

As for the arm restraints, we did get them, but Drew's p/s isn't a real believer in them. He even told us that one of his residents wrote a paper about them and how they don't help!

Drop me an email or comment if I can help with any questions you might have!

Oh, and doesn't it feel great to be done w/surgies for a while?!?!

erin. said...

Glad that Reid is home!! I just found your blog & am going to add it to my BlogRoll (that sounds like some weird sandwich) so I can follow your family's journey!

Hello, and welcome to my page! I am so glad you are here. I am going to try and show you the average life of a 5 year old from my perspective. Mommy and Daddy will help me along the way if I get stuck.

Let me first introduce my family to you. I am Ellie. I am a 6 year old. I live in Ohio with my Mommy, Daddy, little brother Reid, and dog, Sophie. My mommy is a teacher. She teaches nine and ten year olds and loves it. She has been teaching for twelve years. My daddy works with computers. He works hard everyday.

We all love spending time together. I have wonderful grandparents and a terrific extended family. I am a very lucky girl. Thank you for visiting my page. Write to me any time. I love getting mail!!!

Many blessing to you all.

Little Ski (Ellie)

Mommy and me having cuddle time at Hocking Hills.

Told ya, my hair can be wild! And you thought I was kidding!

Hmmm, Blue's Brother's perhaps?