Sunday, January 20, 2008

Ever Felt like you Totally Jinxed Yourself?

Andy and I have been in the house for what seems like forever, although it has only been two weeks. We don't get out much other than to the Doctor's Office. Last night my sister offered to take us to dinner, and we jumped at the chance, (well I did, Andy was less than thrilled, he didn't want to go anywhere.) Nevertheless I got him out, and we went to one of our favorite restaurants.Different grandparents had all of our kids but Rhett, so there was only 4 of us.

It felt really good to get out, and though Andy probably won't admit it, he enjoyed being out of the house. I loved that I didn't have to cook and do dishes.

It's hard doing all of this by myself. I have to watch Andy like a hawk because he isn't supposed to be picking up Rhett, and every time I turn around he is holding him. Rhett just has this thing about him where you have to pick him up and munch on him every time you walk past him. He is just too dang cute. Andy is the biggest softy when it comes to Rhett's cuteness, and Rhett thinks Andy is the coolest thing to ever step foot on this planet.

Needless to say I am constantly pulling Rhett from Andy's arms, and telling Andy that if he doesn't quit picking him up that I will tell the doctor on him. The last thing I need is for Andy to become paralyzed by the mysterious thing floating around in his back. They are such a naughty pair.

Anyways, back to dinner, we ran into the Quigley's at the restaurant. It was really great to see them. I told Carolyn that Rhett was doing fantastic, and I was so pleased with him. Immediately I wanted to take those words back, you know how it is, if you say how well your child is doing then something is bound to happen. That's just Murphy's Law at our house. Last night was no exception.

Rhett had been off of oxygen all day, and had been saturating at 98%. That is HUGE for him. Since his bought with Rotavirus back in November he has only been saturating around 95-96 on room air. Anything below 95 and he gets oxygen so that his heart doesn't have to work so hard, as well as to relax the blood vessels going to his lungs.

He was really good while we were eating, and when we got home he was doing really well too, playing, and torturing his bunny. When I was getting his pajamas on him I noticed that he was breathing a little fast so I hooked him up to his sat monitor. He was only saturating at 85% and his heart rate was only in the 50's AWAKE!!!

I pushed the button on his heart monitor to record him, then watched him for a bit. It was really weird because he would jump from 59 to 117 without the numbers slowly going up like they normally do. I know that it was picking up, because the wavelengths on the pulse ox were very steady, and his oxygen wasn't fluctuating. This went on for about 45 min, then it went back to normal. I got about 5 good recordings, so I hope it will show us something as to why his heart rate was going wacko.

He stayed pretty normal throughout the night. He had alot of apnea episodes last night though. They weren't just little ones like he normally has, they were the ones where he literally jumps out of his skin because he forgets to breathe for so long. I hate it when he does that.

He has been really congested because his nasal passages are so small, and any time there is any gunk in the air he gets really gunky. He did have a small cold last week, but now his drainage is just the normal clear stuff. He has gotten so good at blowing his nose, and wiping it on my carpet. I know gross, yet I find myself celebrating that he can blow his nose.

He is also trying so hard to walk. He can take up to 10 to 12 steps at a time. He is very wobbly, and you can tell that he can't see where he is going, nor does he even try to look where he is going, but that is one of the things that we are going to work on with his vision therapist. He also can't transition from one surface to another, like carpet to rug, or tile to carpet. He has zero depth perception. Now that he has learned to climb the couches we have to be very careful with him. He thinks the floor is even with the couch once he is up there. I can't count how many times he has dived off head first!

All of the other kids are doing well. Dakota was home from school all last week because his therapist went out of town and didn't get his meds refilled before she left. I wasn't about to send him to school without his meds. That could have been horrible. But instead he stayed home with us and helped me get Rhett and Andy to their appointments. I have decided that I need him to go with me every time! He was great at chasing Rhett around the Doctor's office and reading books to him.

Chloee is reading like crazy, and her new passion is Pirate's Dice. We love playing that game and it amazes me that she is only 5 years old and totally gets the concept of it. She can also kick our butts at Disney Scene it 1 and 2. Her kindergarten teacher told me that she has had a hard time keeping her challenged. She feels bad that Chloee spends most of her time helping the other kids, but Chloee thrives on it. She loves sharing her knowledge.

Hunter is really big into his video games. He has been such a help around the house, and hardly ever complains. Him and Rhett have a very special bond, and Hunter is very excited that Rhett can now say his name, though it sounds more like bumper rather than Hunter. He lives on Mac and Cheese, and always keeps us laughing. Hunter and I have a battle going on and are always trying to scare each other. He got me good the other day when I sent him upstairs into Rhett's room to do something, and I went into Chloee's room to get her some clothes. I went to get into the closet and he jumped out of her Rose Petal Cottage at me. I'll admit it, he got me good, I nearly wet my pants.

Then yesterday he was coming up the stairs, and went to open the door to the kitchen. I stood by the fridge and jumped out and grabbed him, and said "Ooogah Boogah!!!!" He screamed like a little girl and fell down to the ground. I worry if this continues into his teenage years that I am going to be living my life in fear............ ;)

We are all hanging in there and making lemonade out of our lemons. Thanks for keeping us in your prayers!



Niksmom said...

Sorry to hear that Rhett is still having those health challenges! But, it does sound like you've made lots of wonderful "lemonade" indeed! I admire your ability to find the good in the stressful situations. And your kids sound like they all are really close and loving with one another; that goes a long, long way toward making things better I imagine.

carolyn q said...

I was releived to see you guys getting out last night. You can't stay cooped up in the house . . you need to get out, especially given the stress you have been dealing with. Mentally you needed a night out. It was nice to meet your sister. I can tell she really cares about you guys alot! Rhett is just TOO cute.
It's good that you were able to record those episodes. Hopefully that will give the Dr's. some good info into what is causing it all.
Hang in there. . .I know your in a rough patch right now, but I have a feeling things are going to getter better.

Childlife said...

Pam - We just made a small donation over at your donation site. I WISH we could do more... we are just climbing out of a similar situation ourselves, but we know that even the little amounts add up.

Just want you to know I'm praying for you. I know what it feels like to be housebound with a medically fragile child. Just hang in there - you're doing an awesome job!

Nicole said...

I am praying for you guys honey and I too just made a donation. We have been through similar stresses and I know how scary it can be.
Love you honey! Nicole

rachel said...

It sounds like you really enjoyed your night out. You deserve it! It's so scary reading about Rhett's apnea. Thinking of you all!

Marla said...

As always I am keeping you in my prayers. I am glad you were able to get out some. That is what I am dying to do! M had a seizure on Friday and now has the flu. I am cracking up. :)

Thank you for catching us up on how all of the kids are doing.