I had a feeling this would happen. I guess thats why my excitement for getting a huge team together has dwindled in the last few weeks. Jax surgery has been rescheduled for next Friday the 25th. Our Buddy walk is Saturday the 26th.
I just hope Jax makes it to next Friday.His oxygen need is now up to 1 liter during the day, 2 liters at night. We got our bi-pap, but he is still desating. Its so frustrating, its got to be something with the home setup. He does fine on it in the hospital. Its also frustrating because I think it would help. My concentrator is pediatric so it only goes up to 2 liters, and he actually is barely satting 88 at night on the 2 liters, and ideally we want him above 95 because of his high pulmonary pressures.
His chest x-ray Wednsday looks worse. We can't quite figure out whats wrong. Could the SVC be suddenly causing all this? Is there something else going on with his heart now? His plureul effusion is back and bigger. I'm wondering if when his cardiologist see's that if he's going to want to put a chest tube in and see if its chylus fluid again. This morning my ped is also calling our pulmonologist to see what she thinks of all of this. I'm just worried at how much more he can take before he tanks. Hopefully before this weekend we'll have some news, besides waiting until next Friday. Because like I said, I don't know if he'll make it until then.
I'm so very sorry Jax isn't doing well. We will sure be praying for out little buddy. Praying the doctors figure something out. Quick!
ReplyDeleteHey Lacy, just wanted to let you know that you guys are in our prayers. I hope they can figure this all out really soon!
ReplyDeleteOh Lacey! My heart just skipped a beat. You (and Jax) are dealing with so much. Doubling the prayers for you!!
ReplyDeleteIf we get the green light for the Buddy Walk, we'll being walking for both our twinners :) I'm trying to find a local place to do buttons for us that we can wear on our Buddy Walk t's...
Oh lacey you are going through so much! Try and stay positive, Jax is a fighter, we will keep praying!! Keep us all updated!!
ReplyDeleteHugs!
Prayers headed your way from Minnesota. I am so sorry that you are having to go through all this. You have a brave little warrior on your hands.
ReplyDeleteI too am so sorry Jax is having a tough time...remain strong as you are...it has got to be difficult...I am saying prayers for Jax and your family that you will know some answers soon...
ReplyDeleteLacey we are praying hard. When Junior is ill and has a crummy looking chest xray he can really desat on his home bipap. He needs it because it pops the lung open but we have to really crank up the oxygen running through it, sometimes as high as 8-10 liters.
ReplyDeleteBig hugs
Okay my friend,now you're scaring me.I'll be calling as soon as I pick the boys up from school.Around 2 my time.Till then,sending you prayers.
ReplyDeleteI'm so sorry Lacey! I know that you were looking forward to the Buddy Walk this year.
ReplyDeleteI hate hearing that Jax is doing so poorly! There has to be something that they are missing! I'll be praying extra hard for Jax and all of you! Hang in there! Keep fighting Jax!!! We love you!
Oh my friend... I am so sad to hear this. I know how much you were looking forward to this buddy walk. I know this surgery is important. Stay strong... he's a fighter. You're a fighter... love you guys
ReplyDeleteLacey, there just aren't words . . . thoughts and prayers are always coming your way. The picture of him is beautiful. I love the heart shaped tape. Some day you should market that! We're walking in our buddy walk and we'll be SURE to walk in honor of Jax as well. Love and hugs!
ReplyDeleteOh lacey, I am so dissapointed in myself. Here i am complaining about the Buddy Walk since I am in charge and have to do so much and am running around like a chicken with my head cut off and then I read your blog and how you can't go. I am sooo sorry, I wish Jaxson were doing better. We will all be walking for him tomorrow and thinking of him. He is in our prayers. We love you!!!!
ReplyDeleteLacey,my son Grady does portraits of people in pencil and he would like to draw Jax for you.Please send me one of your favorite pics of Jax to:
ReplyDeletecherylsfam-blogg@yahoo.com
I received Ruby's Blankie and it is just beautiful!She loves it and touches the picture of Jax on it.Thank you so much!You picked the perfect material,it matches Ruby's bedding perfectly:)I will post pictures of her with it on my blog as soon as she gets over a cold she has and I can take some good pics.
I'm still praying for you and sweet Jax.
Lacey, you just knocked the air out of me. We are putting Jax at the top of our prayer list. hold tight, and feel our support from afar.
ReplyDeleteBTW, thanks for the sweet commment to Olivia.
Lacey - I am so sorry Jax isn't doing well...I wish I could help him feel better, I hope someone can figure out what is going on with him!! You have been on your toes enough already!!!!I am sending you both a hug.
ReplyDeleteOh Lacey - I am so sorry you are having another rough time. You, Jax and your family is constantly in our thoughts and prayers. I am glad they were able to move up his surgery - it sounds like the sooner the better. Can I help you in any way this next week? Please email me or call me.
ReplyDeleteLots of loves and hugs to our great friends!
I know it's not ideal, but maybe your docs would agree to admit Jax like they do V sometimes. He's admitted to the ICU stepdown unit where he can be monitored and supported properly to keep his strength optimized before a big procedure.
ReplyDeleteMaybe it's what you need too. To have some help and support and a little "backup" in getting Jax to his surgery date safely.
Whatever you choose we'll be praying like crazy sweetie.
We're here for whatever you need.
Lacey - I will be praying for Jaxson and you guys leading up to the surgery. Big hugs.
ReplyDeleteLacey,
ReplyDeleteWe are praying for Jax, hope this weekend is better for him. We also are lifting you up for strength as you prepare for his surgery.
Oh Lacy
ReplyDeleteI KNOW the frustration of those home set ups. I am praying much peace for you in these next days of waiting...knowing surgery is inevitable and yet wanting it SOONER rather than later. Peace be yours my friend! We are keeping sweet Jaxson in prayer!
Holding you all tight right now. We're all pulling for sweet Jax! I know my little angel is watching over him! Love and (((((Hugs)))).
ReplyDeleteMichelle
My thoughts are with you guys. Prayers are being sent.
ReplyDelete---Jen
Lacey, I am sitting here with a pit in my stomach. I hate hearing that Jax is doing poorly, and for you to be this worried he must be doing pretty bad. I just want to scoop up that little guy and snuggle him!!!
ReplyDeleteI know you're disappointed about not getting to do the Buddy Walk, but at least they're taking this seriously and moving the surgery sooner.
I will be thinking of you and little Jax non-stop!!
We're so sorry that he's not doing very well, we are praying for your little fighter. Praying that he can hang in there and figure out what they can do to help him.
ReplyDelete