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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Thursday, February 24, 2011

The Honey Moon is Ove-ah!

First off, lets start with our power pooper.

Not many believe me when I explain the extreme nature in which this little person can expel. She is by far my most explosive child, even though Gator had C-diff as many times as he did his little sister has trumped his blow-outs by a long shot. This is why she has had more baths in sinks at various locations than at home and I always pack a small bathing kit and extra clothes. Bleach is my new friend to get out those pesky yellow stains and we will now be trying a new diaper to see if that does the trick.

She is still happy even though she power packs each pass....


Guess what came to live with us again?


This guy!

For a while Gator has been showing signs of needing some intervention.

As I have said before, there is a fine line that I tread mentally. Am I overreacting? Do I have reason to back my feelings? Is it just the paranoid momma? I feel like things really need to be addressed if daddy is starting to wonder and ask similar questions. So we followed those feelings and called Cardiology. My message went something like this:

"We are seeing increased blue lips, fingers and toes, he is fatigued much of the day, he is falling asleep many times a day, his energy level is decreased, he has a hard time keeping his Sats in the happy zone... I am not sure what our next step is, We just wanted to run that past you and see what you thought. Please call back."

WOW!

The answer is.... He is getting bigger and he is going to grow out of the Glenn.. Ha! I forgot all that. I hadn't prepared mentally for it to happen this way... needing oxygen. I thought maybe we would go to a Dr. visit, we would chat about how he would need the surgery some time...

Then we would plan it.

We would have it.

The End....

I forgot that things happen differently for every kid. Now don't get me wrong, this is certainly not the end of the world. It just that it has it's complications. For instance, now we need to worry about how to do preschool, how to do church. I also need to plan for my 1/2 child the O's tank and hauling that around. I am not sleeping yet. I just checked on him and he was totally tangled in his tubes with it wrapped nicely around his little neck. I might not sleep well.

I had to have daddy come home on lunch to explain everything to him. For some reason daddy makes it clear to his three year old brain why he has to have this back. I think it may have been easier to just have it stay from when he was a baby then to try and bring it all back. I had a hair appointment planned for today. I needed a few supplies, things that I had to have to do the hair. So the beauty supply would be our first outing with all the new gear. I asked Gator in the car what he would say if people asked about his tubies. "Just to help my heart." It was a little rough to get going. At first I tried to have Ry carry the tank... Gator took off like he normally does and got yanked back. He started to cry. She was trying but it was heavy and she couldn't manage her little brother. Not a good start. So I got the tank, slung in over me, grabbed the diaper bag and put that on my shoulder, then got the baby out in her car seat (side note: she is getting better about being in that thing) and let Gator pull us into the store. All eyes are on us as I try to navigate the three of us plus Ry ahead, through the isles of the store to pick up everything I need. I still want one of those big yellow signs to put on my back that reads "WIDE LOAD" or some awesome orange flashing lights would be pretty dang cool. It brings back memories of doing this before. I was thrilled that he was so happy and that this isn't cramping HIS style. We get our needed supplies and walk over to another store to pick a treat. There is a little boy there who is the same age and is curious. He asked Gator why he needed that, pointing to his face/tubes. Gator said "Just for my Heart" and the little boy got it and was happy. His mom on the other hand was worried. "Sorry" she said "He is just wondering" I told her I know, it's totally fine. She said her son has a diabetic pump and people ask him all the time too. The boys were instant friends wanting the same treat. We managed to get everything we needed and head home. I gave myself enough time to get baby in car, get bags in car. Get son and 1/2 child O's in car and buckled, help Ry and answer her questions, get myself in car and get outta there in time for the appointment. It all ended more smoothly. He has had a few instances tonight when he started to cry or called out that he was stuck. We have to follow the tubes to find him, untangle him and show him how to move around with his tether. It will all work out. We just needed to get through the first day and it should be better from here on up. One really good thing. He gobbled his dinner because he had enough energy to eat. Then it seemed like he had a hollow leg the rest of the night. HA!

9 comments:

likeschocolate said...

Sorry you guys have to go through all this. I guess the good thing is that we have it available for our little guys.

The Simmons Family said...

I feel your pain!! There is a part of me that is grateful that we've had the O2 since Owen was 10 months. He is so used to it! He's really not to mobile when we're out, so that makes it easier.

Good luck and keep us posted on the Fontan. Gator is definetly getting to be a big boy and is prob just outgrowing his Glenn.

Christina said...

Glad the O's are giving him more energy. Love you guys!

Aimee Hardy said...

Boo to having to figure out how to get around with three kids and oxygen. If anyone can do it though, I know you can. And you can always drop that cute little Munchie off at my house if you need a break :) I'm not very far away.

J.B. said...

Goodness momma, you are incredible. Good work. And hooray for having more energy, even if it comes with a rotten tether.

Andrea said...

I'm sorry. You're such wonderful and positive parents. You are amazing. I'm glad it's helping him have more energy!

Andrea said...

I'm sorry. You're such wonderful and positive parents. You are amazing. I'm glad it's helping him have more energy!

Andrea said...

I'm sorry. You're such wonderful and positive parents. You are amazing. I'm glad it's helping him have more energy!

Kyle and Alli said...

Your description of carrying tanks, baby, and trying to keep Gator from outrunning his leash has me cringing for you! I guess we should be grateful that we came home from cardiology with the same conclusion, just minus the continuous O2. Will you start having the Fontan talk soon? Keep us posted!