We got to our room this morning and its been pretty quiet. I was talking to Heather on the phone when ENT came in to scope Jax. He said scoping him won't really tell us anything because we know he has a small airway. But he did see that Jax already big DS tongue is swollen just like his face is. He said it is sitting right in his airway.
Point being..
He wants to trach Jax
O.M.G.
I knew it was always there, but now that the doctor wants to do it I'm freaking out. Will my babies voice be taken away? We finally got him to make babbling noises, will that be gone with a trach?
Its not a garantee that he's going to do it. We will see what the cath shows tomorrow, but he said he would rather trach him than take his tonsils and adnoids out. Because of the blood thinners he can't have his tonsils out. ENT said that if the clotting disorder is under control and it won't get worse and possibly take his life, then he thinks a trach is a good idea.
Well we already know that he hasn't formed new clots since being on the lovenox, all the clots happened before we knew he had the clotting disorder. Something that he's likely had since birth and we found it when he was almost 3. So he's clotted a lot of veins off in those 3 years.
We will have a care conference with all these doctors first, and palliative care team will help with that. ENT said that even if we fix the SVC, the swelling won't immediatly go down. It will be years before it goes down, and having these airway problems are causing the pulmonary hypertension and his heart to suffer. So he needs the trach.
I need to ponder over this tonight.
Tomorrow bright and early he goes to surgery. Like I said I will have the computer with me to update.
Thank you for your prayers. Trust me, I feel your hugs even from miles away!!!
Oh, I am so glad to have a little update. He has been on my mind all day. I pray for you guys... you will make the right decisions for him. Hang in there... you are such an amazingly strong person. Love you guys...
ReplyDeleteThanks for updating us!! We are praying for the big day tomorrow and that you all can get some sleep tonight!! We are sending hugs and kisses from Illinois!! PLEASE let us know if you need anything!!!! I will do everything in my power to help...seriously, anything!!! Hugs, Hugs and more Hugs!!!! Stay strong, you will get through this!!
ReplyDeleteMalachi says "hang in their Jax, we know you can do it!!!"
UGH! I SO know how you feel. Know that you can do this...just like you have with everything else. Losing his voice is the hardest part of the trach - I know. If you have ANY questions and want to talk to someone that knows all about trachs I would be happy to talk to you. :) My favorite trach blessing? NO MORE traumatic intubations. When he needs surgery or is sick and needs to be on a vent? They literally just pop him on. I LOVE it. Of course there are pros and cons to everything, but it eventually becomes your new normal. We are praying for you and Jax. I hope you can have some peace with whatever happens. xoxo
ReplyDeleteLacey, now I see why you are so against the trach. His sweet sounds? Tonight you're breaking my heart. You will make the right decision, so many prayers for you tonight. Praying for your strength and as always peace of mind. Sending huge hugs too.
ReplyDeleteOh Lacey, The memories that came flooding back when I just read your post. I will never forget that night for as long as I live - to trach or not to trach. What kind of decision is that for a parent to make??!!?? John and I stewed so over the what ifs. We signed the papers and off she went to surgery. I will also never forget the first time I saw her with the trach. She was pink, instead of transparent blue and her chest was at a peaceful rest instead of laboring to just breath. I think it sounds so much worse than it turned out to be. I wish it wasn't something they were discussing for Jax, but it might be just the thing that ultimately makes his life better. Whatever is decided I will pray for your strength as a mom and for Jax to be at peace.
ReplyDeleteI've been waiting all day for an update. I've been thinking of you and praying all is going well. I can not imagine all you are going through right now. I'll be praying for you to have strength and for Jax too. Praying all the right decisions are made for your sweet boy.
ReplyDeleteSending prayers for strength, wisdom, and grace.
ReplyDelete---Jen
I am definitely keeping you in my thoughts and prayers. While my daughter doesn't have DS, she does have a Trisomy (Trisomy 9p).
ReplyDeleteI'm sure it sounds silly, but I feel a sort of kinship with other DS families because there just aren't many kids like mine.
Hang in there and know we are praying for Jax.
Praying for Jax and that everything goes well. I can't imagine what you must be going through, but I hear the strength in your words, you truely are amazing and I can't look up to you more. I shall continue to pray for Jax and for positive outcomes for whatever decision you take, as I am sure it will be the right one.
ReplyDeleteI have thought about you and Jaxson ALL day!! I am so glad you got a chance to update.
ReplyDeleteI am sorry to hear that they are really leaning towards a trach, but if it helps him .... I know you will do anything to help him.
I will check in a lot tomorrow, you guys will be on my mind constantly!
Wow. I've been thinking about you all day. I'll keep praying. You'll make the right decision. You've been there for him for 3 years. You know what he needs and what you can handle. You're both tough. {No fairy glittery toenails for Jax!}
ReplyDeleteLacey we are praying for you as you deal with making such a tough decision. big hugs
ReplyDeleteOh my goodness girl, my head is spinning and i'm not even there!
ReplyDeleteIt's such a hard decision, But you know in the end it's all about Jax.
You've always stepped up and made the hard decisions for him.
You can do this.
If it's what he needs now, to be healthier, breathe easier, you can do this.
Just remember a trach is not only a lifesaver in certain situations, but it's also reversible. When he's stronger and better he can always be decannulated and those sweet sounds will be waiting.
Try to get some rest tonight and let us know how things are going tomorrow when you're able. We're right here for you all the way.
oh I'm sorry you have more news to digest and decisions to make! Praying for answers during this surgery and for peace of mind on whatever you, and Jax's team, decide on for the trach. Praying it all goes well and a smooth recovery.
ReplyDeleteI'm praying for you all - for you as you make these tough decisions, and for Jaxson and his doctors tomorrow.
ReplyDeleteHello my dear friend...finally am able to sit down at the computer after a crazy day of fall cleaning, doing blankets and playing phone tag with our ped. I will call in the am to check on you and Jax and get caught up on what tomorrow holds. P might be getting strep, so we'll play it by ear and see how the night goes. Love and prayers for you both. You are strong, intuitive, courageous, faithful and loveing, one of the best people I know. Prayers you will have clarity and guidance tonight and tomorrow. Love you Lacey...so blessed to be a part of your life! xo
ReplyDeleteLacey
ReplyDeletePraying divine discernment for you and all Jax's doctors in this decision. I know your heart is breaking and you are close in mine and in my prayers!
Hi dear Lacey and Jax, thanks for the update, will keep you all in my prayers today! Sending you big hugs, positive thoughts and heartfelt prayers from rainy South Africa! I just know that our Lord will lead you to the right decision! God bless, Megan and Keaton
ReplyDeleteLacey,
ReplyDeleteWe will be praying for you guys!!
OMG! I knew this was a possibility, but was hoping it wouldn't happen. We are all sending prayers for good results whatever they decide to do. We just want Jax comfortable and able to play and enjoy himself. Mommy and Daddy too.
ReplyDeleteOne thing - that stuff I talked with you about before - the program - will be automatic with a trach, including nursing. That isn't a reason to do it, but just to know that you will have help to deal with the trach issues I hope could be some comfort.
We will be waiting and praying for you all day tomorrow. My little nephew even said a prayer tonight for Jaxson - he calls Christopher his brother instead of cousin, and has a soft spot for any kiddos with DS. :)
BIG Hugs and PRAYERS!
Steph and Christopher
You will be in our prayers, we hope everything goes well tomorrow. Sorry to skip out on you but when they said go we started running.
ReplyDeleteAs is my habit,you guys are usually my last stop before heading to bed and tonight I will go to bed and you all will be the first on my prayer list,which I might add,is getting far too long.However,we'll pray like crazy for wisdom and guidance and clarity,as you head into this major decision making mode.As we have talked about before Lacey,you will know.You will innately know which direction to head.You and Ray will do this,the way you have done everything else in Jax's life,with great love and the ultimate bottom line being what is best for Jax.And that little Jax will continue to be your guide,just as all these children are for all of us.Their wisdom and spirit need not be accompanied with words.We love you guys.We love Jax and the other boys and we have no doubt that this will be hit head on with the grace and the dignity that you have shown all along.You can do this.You know it and I know it.I am proud of you my friends and so proud of the amazing and courageous Jax.I'll call tomorrow.
ReplyDeleteHang in there girlie...
ReplyDeleteI'm going to be honest here cause I know you'd want me to be...
I was afraid of the same thing(Losing Jophies voice). Granted he didn't talk but he babbled and laughed and laughed....Oh that laugh..
The one thing our Ped ENT does for babies and kiddos who have neurological deficits is use an "uncuffed trach".
The reason behind it is 2 fold....ONE with a baby OR a child with neuro deficits IF the trach would become blocked in any way they wouldn't be able to tell you BUT with an "uncuffed trach" they could still breath around it. OK so that to me was the most important but the second thing was with the "uncuffed trach" eventually Jophie would be able to talk around it or rather make sounds around it.
MUSIC to my ears...
NOW for more honesty. What they neglected to mention was because of all the swelling AND our STUPID STUPID STUPID....Did I mention STUPID yet? Our STUPID insurance would NOT cover HME's and our Med supply was quite possibly dumber in that they said they didn't even know what an HME or a speaking valve was. DUH nor did I! This was all so new to us.
Jophie went 6 LOOOONG MONTHS without out ONE SOUND adn risking bugs going into that trach anytime we stepped outside. I was devastated UNTIL one night I was peeking around on the net and found the Passy Muir sight which plainly stated in BOLD LETTERS that the speaking valves were in fact covered oxygen port included! They even had the code numbers and such for billing...Not only had I found the info on ordering but also WHAT THEY WERE CALLED...
Up until that point I had not been able to drag much information out of anybody about anything..
In the mean time a sweet mom online sent me a spare speaking valve she had. I can not even express to you the joy I felt to HEAR Jophies voice again! How sweet the Sound!
It got better even still as the swelling continued to go down.
It's been over one year now and he still hasn't mastered the "cause/effect" of using the speaking valve but we can make him giggle on purpose and he does manage to let out some nice loud squeals that scare him even! All by accident of course.
I'm certain Jax will be able to catch on quickly. :0)
OH and by the way...Speaking valves are considered prosthetics so don't let ANYONE tell you he can't have one. I learned that the hard way. They certainly wouldnt withhold a prosthetic arm/leg from someone missing a limb and we are certainly NOT going to allow them to do that to our children...
Update us again when you have time...
Will be praying..
Hugs,
Trina and Jophie
Hugging away. Hugging away.
ReplyDeleteI've been thinking of you and praying lots! I'm so sorry that you are having to make this HUGE decision! I pray that the decision comes easily to you and that the outcome is one that you are happy with!
ReplyDeleteI would be so scared about a trach, but I've also heard that it usually ends up making life so much easier and better on the child. Hang in there Lacey! I wish that I were closer so that I could give you a great big hug and a shoulder to lean on! I'll be praying! LOVE, HUGS and PRAYERS!!!
To trach him seems so scary and very heartbreaking.......I love the sound of his cute little voice......I look forward to you posting videos of him talking away........, but it also seems like a breath of fresh air :0) .... His struggles with maintaning his oxygen levels could be a thing of the past.......I think both you and Jaxson will be happier. And hopefully he'll be able to sleep better and get the rest that both you and he so desperately needs.
ReplyDeleteWe are all praying for you sweet little Jaxson!!!!!
<3 you!!!
xoxoxoxoxoxo
So glad to get an update. My heart aches for you and your family. You are in our prayers and on our minds daily.
ReplyDeleteI thought about you all day yesterday - wondering how things were going. I am so sorry to hear that you are facing yet another very difficult decision. So many issues for such a sweet angel - so many difficult decisions for his sweet family.
ReplyDeletePraying that today brings more answers and that you will feel peace as you make decisions regarding Jaxson's care. Our hugs, loves, and prayers are with you Lacey, Ray and Jaxson. Love you guys!