I talked to pulmonology today about Jax desating on his c-pap. The only thing she can think of is his nasal airway is so narrow that its not getting through. So she wants me to find this nasal spray for which I can't even spell the name. She is hoping it will open up his airway a little. If it works they will write a perscription for a nasal steriod. I have run around everywhere today trying to find it. I may have to run all the way up to the hospital pharmacy to find it.
Sigh...
I can't understand the medical world. We are able to transplant organs, help people with just half a heart, but they can't figure out how to open up the nasal airway besides taking the adnoids out. Which he can't even have done. Or that they can't figure out how to open up his SVC. With all the things they can do for the heart. Everything we need just seems unfixable. I'm having more and more of these heart palpitations, with headaches that go along with it. I'm not sure what's causing what, but they always come together. I talked with Heather for a while the other day, and she convinced me that I just need to give in and go get it checked out. I called my doc, who I've never even seen before. I know, I haven't been to a doctor besides my ob/gyn since my pediatrician. She said since I haven't been seen there yet they have to look at my info. That it could take two to three weeks to get back to me just to schedule an appointment. Oh well, with Jaxson's declining health, and the need to go clear accross the country to do a risky procedure for him, my appointment is the last thing on my mind. I know I'm losing steam though. Jax sleep is getting worse and worse, therefore my sleep is almost nothing. But I keep chugging along waiting for Boston to call with an appointment. Because I have yet to have that small voice tell me that Jaxson is done fighting, so fighting we will do.
I was excited for our Buddy walk this year. Although I don't know if we'll even be here to do it, or if Jax will be able to go, he's getting worse and worse by the day. His lungs are filling with fluid. He has coughing fits that are a joy to deal with, but we put a team together this year, and I really want to go. I'm not worrying to much about raising a bunch of money. Not that I don't want to, but I'm trying to get to Boston with Jax, so that needs money more than anything else right now. But if you want to donate, or just check out his page, click here.
This is whats going to be on the back of our t-shirts. The front will just have the team Jaxsons fight on the pocket. I can't wait to see them.
23 comments:
Oh, my friend, I just feel so badly for you. My heart breaks just thinking about all that you have to deal with right now. How can I help from here?? You know how badly I wish I could get on that plane and fly to Boston with you??? But first things first, everythings needs to (and will) line up before you go to Boston. As for the buddy walk...let your friends do the walking for you. The shirts look great!! Please give Jax a big hug for me!!
I don't understand the Medical world either. Jax needs care too... badly. Those t-shirts are going to be awesome! Hope to see you guys at the Buddy Walk. We'll pray for Jaxson...
Oh Lacey, Jax's t-shirt is beautiful, if your post didn't have me in tears that shirt sure did. Keep fighting, kisses to that sweetie.
Praying for a miracle for Jax!Love the T-shirt. Hugs to both of you!
Lacey, I'm so sorry that you are struggling so much lately! I wish that there were something that I could do! If there is anything that I can do from here, please let me know! ANYTHING!
They say that Gavin's airway is very narrow as well. But, his adnoids are within a normal size, so who knows? I hope that the spray/steroids work for him! Jax sure does like to keep you and the doctors on your toes, doesn't he?!
That's a great t-shirt! I would love to buy one, if it's possible! I've been trying to come up with a t-shirt for Gavin's team, but I don't even know where to begin.
I'll be praying for you and thinking of you often! Remember to take care of yourself too! LOVE and PRAYERS!!!
lacey, I'm so sorry, I wish there was something I could do. You and Jax need some sleep. And some breaks. My thoughts and prayers are with you. All my love.
Keeping you in our prayers. Wish we were there to give you and Jax a great big hug.
Love the tshirt
So sorry you have all this stress and worry. I agree with Heather - you need to look after yourself too (easier said than done I know). I will pray for the whole Boston thing and for sleep! Take care.
The t-shirts look fantastic.
The shirts are going to look great! I agree about the whole medical world stuff. You would think they could do more. Continued prayers being sent.
I'm so sorry you guys are having such a hard time. I'm thinking about you. Please give Jax a hug from me and Samantha, and remember you have to take care of yourself, too, and be a healthy mommy for him!!
I'm so sorry you are having a hard time. Is there anything I can do from afar besides pray? I do so daily and I wish I could come and stay with Jax for a day or two to give you a break! Is there any way you could get some respite or overnight nursing?
Oh I am sorry for more medical stuff that can't seem to be fixed. Good luck finding the nasal spray! Would those "breathe right nasal strips" work at all - aren't they supposed to help people who snore by opening up their nasal airway more? I love the shirts - they are awesome. We are hoping to do the buddy walk this year as well - I better get going on that.
Oh my sweet friend...those shirts are perfect! I wish I had answers, sleep, as well as a PhD for you! I wish I could come stay with you a week each month and take over to help so you can get some sleep. I am willing to do whatever you need when you go to Boston...take kids, make meals, whatever! Please know you have a support group waiting to help. Its so hard to know where to start and what we can do from where we are! Know we love you and your family...always! Can't wait to see you and hold that little boy. Yea, Preslie freaks out all the time now...when people laugh to loud, or get near her, or someone yells....it's quite an adjustment to a baby girl that was always so quiet. She scares so easily...I hope she'll just know she's always safe with you! :) Heaven knows I need a break too...she won't go to anyone else!:)
Man, that's crappy! All of it - except those adorable shirts, of course!!
there are no words to say, if you were closer and face to face id give you a hug. your a strong and brave momma. you are an inspiration. Jax is such an amazing lil guy.im going to post your blog on my carepage and generate some more prayers for you all.
God Bless
Lacey, you and Jax will be in my prayers. Thinking of you both~
Okay,went to bed way too late.Climbed into bed and started my prayers,got to Jax and realized that I read your post,got sidetracked before I left a comment and never got back.So ... hopped out of bed,yes I'm crazy like that,and came back.If for no other reason to tell you I love you guys.I love Jax and I would and will do whatever,whenever.Remember,I got a whole slew of stand in's ... why do you think I had so many children in the first place??Seriously,say the word.Call whenever.I am obviously up late.Kiss that boy and I'll call tomorrow.
Lacey, it is SO hard to take care of ourselves! I have an infection right now that I know I should see a doctor about, yet I just haven't. Who wants to add in another doctor's appointment, or some other testing? Ugh!
I hope that Boston calls soon. I hate to hear that Jax is getting worse. :(
I'm so sorry that things aren't going well and that Jax's health is declining. You guys are in our prayers, you are so amazing. Love the shirts. If there is anything I can do let me know, I'm close by.
Lacey, I hope you can get into the doctor and they can help you. Seriously, you need your health to keep everyone else going.
I love Jax's shirt.
I do NOT understand how poor Jax is out of the hospital. Oh! That sweet little fighter. Praying so hard for him and all of y'all.
The shirt design is AWESOME. I will pray that you guys will be able to make it.
I totally understand medical frustrations...Just a short example for you: While I was pregnant they were willing to do risky tests to find out if N had CF but when he was born they didn't want to do a simple blood test until attempting to collect sweat multiple times. Blood doesn't lie but it is their last resort?
Like I said, praying!
Lacey, I'm thinking of you and Jax. Please let me know if there's anything that I can do. The shirts are beautiful!
With love & hope,
Erin
Geese Lacey, I don't know how you go without getting any rest like that, but you must take care of yourself hunny! I'm so sorry that Jax is not feeling so well & What the heck is going on with Boston? I thought that was all set with the apt or you just had to make it?
The last thing you need to do is worry about the Buddy Walk...the picture is BEAUTIFUL, but seriously, you must come first! Give yourself a little break;)
{{HUGS}} to you & sweet Jax!
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