Monday, September 19, 2011

Playing in the sunshine

Jaxson is doing very well since his hospital stay. Our biggest thing is that he lost nearly 3 lbs during the whole ordeal. 3 lbs wouldn't be anything for you or me, but on a 25 lb almost 6 year old, its way too much. I about died when I saw the numbers on the scale, and my ped nearly died when she saw his little body. Because of his SVC syndrome making his face and neck puffy, its hard to see in pictures just how scrawny he is right now. He is tolerating the continuous peptiman jr in his J tube. We won't switch to G tube until we find out about fixing his nissen. The next aspiration episode may not be as easy for him to handle as this one was. Occasionally he will get cranky if his g-tube is clamped for too long, so I'll unclamp it and wrap a newborn diaper around the end to drain.


Its still really nice here, after a few days of rain, so I decided we needed a trip to the park. I was all excited to get Jax on their handicap swings. I had already decided that tubes can be taken off for a few minutes to get some sunshine and fun. I had plans to have Mondo take him down the slide, something he's never done before.
We waited patiently for the handicap swing to become available. People ignoring the handicap sign, and the obvious handicap child waiting.
I put him in and started pushing, and the little stinker does this.........


He was out cold! Without much swinging, and no trips down the slide! My plans were a bust!

Of course Arina had a grand ole time. This girl loves the swings!


Trying her hardest to get back up that slide, to no avail!

The buyers may close on the house on Thursday, which means we may close Friday or Monday. I'm getting that pit in my stomach. I'm not sure if its adventure, or fear. I've never in my life lived outside the Salt Lake valley. Its an adventure to me, but adventure has a different meaning with a child like Jax. My homecare company here wants me to find a nationwide homecare company that my new insurance covers, so I can leave their equipment here, and get equipment from the new company to take with us. The only company I can see that is nationwide is Apria, and I've had multiple people tell me not to use them. I'm not sure what to do. Not many companies I called do oxygen. CCS medical, and Edgepark, neither do oxygen. I don't want to get stuck with a company that is going to be hard to work with. I fight enough for the stuff Jax needs, I don't need any more.
My only reservation about moving was leaving my ped. And while its the only thing, its definitely one of the biggest! No one knows Jax like her, and it will take a while for anyone to learn him and how he ticks. And as much as I hate the hospital here, there are people that know Jax well. When we move, every hospital we go to will be brand new. No one will know Jax. No one will come in and say, "hey, there's my Jaxson". Oh man its a scary thing! Reassurance from people that have made a huge move with a medically fragile child is greatly appreciated!
I'm a nervous nelly right now!

14 comments:

Zoey's mom, Heather said...

Sweet boy ... and girl but you know, Mr. Jax is the love of our life in this house.

Peace to you my friend as change comes. You will weather it fine and there are great adventures for the Rugg family awaiting you here.

It was so nice to have Ray over. Like family.

Carolyn said...

We use to live in Dallas when my boys with cf were little. I thought the cf clinic there was the end all be all so when we were moving to Austin I freaked out! I tried everything I could to not move! Then I would say that I would just drive back and fourth to Dallas so I could still go to that clinic (3 hour drive one way). Well we moved and I calmed down and then I got to know the doctors at the cf clinic in Austin and right off the bat they were amazing!!! Our new doctor was younger (which at first I didn't think I would like) and had a lot of the new research and up to date on all the new info. After a few months I ended up loving this cf clinic a lot better than the Dallas one which was hard for me to believe!! Our doctor here has done so much for our boys here and I really feel it is a blessing we moved here! We have been here for 6 years and now I never want to leave this cf clinic!! Good luck and I know you will find all the right doctors!!

Shelly Turpin said...

Lacey - no advice, but just wanted to let you know you are in my thoughts. I know if anyone can do this, it's you.
This is the only other mom that I know of that has moved: http://mandd3.blogspot.com/
Hugs, my friend!

suelmayer said...

Can you blame him...look how comfortable he looks. I love those swings, Sam's favorite so we put 5 of them at the playground inspired by Sam. No waiting!!! Well...usually!

Melissa said...

Looks like the swings were a hit, even if they did put Jax to sleep!

I've heard bad things about Apria too, but we used them after Claire's OHS and RSV and they were FABULOUS. I think it really depends on the office.

Nancy said...

I don't know if it will help or not, Lacey, since we're on the East Coast, but we use Apria for Rebekah's O2 and enteral supplies. Other than missing half a case of formula one month (that they ended up re-shipping), we have never had any problems with them. They were much better at getting things delivered in a timely manner than the local company we switched from. We've been very pleased with them for almost 2 years.

Heather said...

Princess Arina is just adorable! Love how she looks like she's going "ooooh" at everything, like she's taking it all in. :) And Jax is too cute!

Scrappy quilter said...

Look at him, so comfy in the swing. Praying it all works out Lacey. It's not easy moving at the best of times, however knowing some of what you're experiencing my heart goes out to you. Hugs

Becca said...

Oh, boy, you've got some BIG changes coming up! Can you maybe use the national company temporarily until you get settled in then change to someone local in CA? I think Apria is who we used when Sammi had to come home from OHS in Philadelphia on oxygen. I don't recall anything particularly negative, but we didn't have it for very long...

Colleen said...

He looks so peaceful in the sunshine. We have a universal playground, but no swings like that. I wish we did!

Denise said...

Know nothing about our home health company other than the feeding supplies we get from them, but we use Walgreens and our stuff gets delivered from the warehouse in Corona....it's worth checking out to see if they have everything you need. (as a side note, can you believe I actually managed to post a comment on a blog!! :)

Sarah Marie said...

I will be keeping you guys in my prayers..

Chromosomally Enhanced said...

with good reason to be nervous...adventure can be good and this will be GREAT!! Jax looks like he loves the sun and the swing...it will have to be a must when you get to Cali!! Ariana is to much and to cute...good luck and I will be thinking of you all...smiles

Junior said...

Lacey as much as I can't stand Apria for equipment now that we only use them for oxygen they have been fine. Here in Sac we have a company called River City which provides are all our supplies and most our DME and they are great. Not sure if they have offices anywhere else in CA.

For your cast question, Junior's feet looked pretty much perfect each week when we took off the casts. No breakdown at all. Maybe it is the type of casts.