Jax is not in the hospital, and we are hoping he won't be. We've been lucky in the last 5 years, so many holidays spent in the hospital, but we've never had to celebrate Christmas there. We almost did two years ago. I finally got him discharged at 11:00pm on Christmas Eve, while daddy stayed home and put presents together. But every year he seems to act up close to Christmas, just to keep us on our toes.
I've noticed more and more since getting that yucky x-ray, that his sats bounce around a lot more. He gets more blue when he gets mad, and he drops his sats at random times. Today his color isn't steller, and his lips are super dry and cracked. These are Jaxson signs that he's getting sick. No other symptoms so far, but I'm worried about these.
Since finding out his lungs are not great, we've had to crack down on sick visitors, and where we take Jax. One of the first times ever that we've had to do this. You all know my take on keeping him locked up, not living and enjoying life. I just don't believe in it, but for now its what we have to do. I've been given a clear message by pulmo and our ped that a respiratory illness now would be bad, very bad. We've also upped his vent settings, another thing pulmo didn't want to do. But she also said we didn't want the vent in the first place, but now that we have it, we need to utilize it as much as possible.
On a high note, a certain princess has finally started to enjoy her bath. She loves to kick and splash water in her face!
Oh look, there's my piggy toes!
Can't wait for summer to put her in a pool! Notice her new accessory for nighttime oxygen.
Of course, a certain little boy always loves his baths. We are hoping to get a water event, like swimming with the dolphins, put into his Make a Wish trip to Florida. That is, if we ever get to our Wish party, it feels like we've been working on it for months! Oh wait, we have!
Love your little water babies and Arina's night accessory ... all the rage I hear these days!
ReplyDeleteCan't wait until your Make a Wish is finalized.You guys are going to have a blast!
Call you tomorrow to catch up before the craziness is upon us .. oh wait,it already is!!
PS..Praying that Jax isn't getting naughty on you.Stay healthy Mr.Jax.Please.
ReplyDeleteYou scared me with the title! They are both beautiful!
ReplyDeleteHope you get Christmas all together at home!! Be good Jax - Santa is watching :)
ReplyDeletelove the pics. We will be praying that Jax stays healthy.
ReplyDeleteShe ceratinly seems to be enjoying her bath, love that smile, yes summer will be wonderful in a pool, another 1st for her I am sure. Keeping fingers and toes crossed for Jax to stay healthy. Love the pictures of the 2 babies!
ReplyDeleteYou sure did scare me with the title :(
ReplyDeleteI really hope he can manage to stay healthy enough for Christmas!
Lots of love,
Laura
Oh Jax!! don't be naughty before Christmas!!!! praying he stays where he belongs and feels better!!!!
ReplyDeleteArina just makes me smile!!
I am wishing you a safe and healthy holiday!! smiles
ReplyDelete50 lashes with a wet noodle for you!!!!!! You scared me. Praying he stays healthy and home. Love all the pictures of all of you. But the post with all Arinas silly faces and puking on Jax were a hit with my kids.
ReplyDeleteOh sweet jax- I hope you stay healthy- it is sooooo hard in this season! You just have to so you and Arina can have a happy Christmas together! That sweet Arina- her whole little face lights up when she smiles!
ReplyDeleteI'm thinking of you and mr. Jax, hoping he can stay healthy this holiday season and the months to come!!!! And that Arina just captivates me! she's so beautiful. Good luck wtih the Make a Wish. Mr. Jax certainly deserves it!
ReplyDeleteLacey,
ReplyDeleteHas Pulmo done a bronch on Jax to see if he is aspirating or refluxing into this lungs.
It makes me nuts that they look at his lungs, tell you they look worse, and then don't have any answers.
Maybe you could get a second opinion with Daftry the way I did with Pfeffer? Daftry would be the one that read your Princesses' sleep study. :)
Nobody thought Parker was either......but boy, Howdy, was he. His lung x-ray after the Nissen is night and day different than before. And we already see differences in his resting heart rate after dealing with his aspirations.
And why didn't Pulmo want the vent? It's odd how different Pulmos are so sure about different things.
At 6 months old Parker's PH numbers came in at 117. We were told any virus would take him. We were told he wouldn't make it to see his first birthday. That's why we keep him locked up.....especially during the winter.
The second cath showed significant improvement.........but who the heck knows what to think about the 3rd cath.
Which is why Day wants him back in the cath lab so badly.
So, we'll keep him locked up again this winter. The RSV he had last year set him back for months. But then again, we had been told that he'd never survive RSV either.
For us it's a matter of trying to get him healthy enough to fend off sickness and illness......and get those dang lungs to GROW. He's getting a sled for Christmas so he can get outside, and he has a zillion brothers and sisters over here......so being locked
I work hard to bring the world to Parker.
When Parker's lips get all cracked and dry, I start up a humidifier in his room. There is also a lip balm that has a bit of a over the counter steroid in it that helps heal up those lips. Now that Jax is off the special diet he was on, you might want to look at a blenderized diet for him. Let me know if you'd like that info.
Keeping my fingers crossed that Jax stays healthy and out of the joint.
It is almost Christmas NOT April fools you stinker! Thankful he isn't in the hospital, we will keep praying that he stays home and healthy.
ReplyDeleteLove the sweet two of them and their bath loving pics.
what a sweet smile on that girl! :)
ReplyDeleteEverytime I see your babies, it brings a smile to my face. They are just the sweetest. Can't wait until your Make a Wish is finalized as well. I do hope he doesn't end up in the hospital. Hugs
ReplyDeleteprecious pics!! Prayers that Jaxson doesnt get sick over the winter!!
ReplyDeleteOkay you scared me...I worry about the same thing. Sam's been sounding a little gunky, coughing, stats still okay, dry lips and kinda cranky. Praying that you and I both stay home for Christmas. Like Parker and Jax, Sam is also on lock down, to the point of signs posted on the doors, No Entry if you are ill or have been exposed to an illness. He can't afford to get anything respiratory while in this body brace. Can't run him to the shower like I normally would and transportation to the hospital has to be by ambulance at this point. Saying a prayer for everyone to stay healthy. Oh, and Arina, love that smile!!!
ReplyDeleteWell you certainly did scare with the post title. I thought o no not again and not now. So glad that is not the case at least not for now. Praying his little body will fight off all infections and you will be able to enjoy a quiet and peaceful Christmas.
ReplyDeleteThanks for the great pics. I think there is just something so adorable when they are all wrapped up after a bath.
Way to worry me Lacey! I told myself I wouldn't read any posts today, but as I scrolled down my blog roll this title panicked me! I was relived to read you're all still home, I hope Jax starts improving!
ReplyDeletePraying that Jax stays HEALTHY!! This is not a good time to make the naughty list, Mr. Jax!! lol I can never get enough of the splashing and bathtime fun!! I just LOVE seeing that little princess at home with you all=) Happy Holidays!!
ReplyDeleteYes, you scared me with the title! Praying that Jax stays healthy and you can all home for Christmas. Love the bath pictures. Claire always loves hers too!
ReplyDeleteHello! (Sorry for the double comment) I hope it's okay, but I added you in my "Blogs I Love" list thingy!
ReplyDelete:)
I so would love to talk to you!Our son Jaxson had surgery today and got a trach!I am overhwelmed and a bit scared about it all.We took a class on how to care and clean and change the trach.Tomorrow we take cpr.I know this is the best thing we could do for him but its all so scary to me.
ReplyDeleteMerry Christmas. Hope you have a great time. Love the pics.
ReplyDelete