Jaxson's VRP came back para influenza virus, the one that is usually crupe. His xray read pnemonia. He had a pretty good night. He woke up with one coughing fit, but his oxygen need stayed at 1 liter all night.
I have a little update for all Jax issues were are looking into right now. He has an EEG scheduled Monday, so we'll see if that looks worse than normal. Also his hemo doc is talking to two different places about his SVC syndrome. He's talking to the clotting specialist in Colorado, and he's also talking to a vascular specialty team at Bostons childrens hospital. They've done a couple of surgeries so far on kids with SVC syndrome, so they said they would look at all of his scans. I don't know if they want us to come out there or if they will just give their opinion on how to fix it and then the surgeons here can do it. I've heard a lot about Bostons this year, has anyone been there or know much about it? It would be far for us to go but it would also be cool to see Boston.
Also his GI doc thinks its time to get a celostomy. That would be another button like a g-tube but it goes into the bowel and you can put suppositories and let air out through it. She thinks it would help his bowel problems and also his g-tube problems because we think his belly gets distended and causes his button to leak and the balloon to pop. The only thing is these are all surgeries that he's going to need. He also still needs his tonsils and adnoids out because we had to put that one on hold. I know the celostomy can be done with the tonsils. But not the SVC surgery because that would be open heart. It just sucks for him because surgeries are so hard on his sick little body and expecially his sick lungs.
You need to go to Joeys blog and watch this music video. Its Jamie Foxx and his down syndrome sister is in the video. If you don't want to watch the whole video because its rap/hip hop. In the middle around 2:30 it show her dancing, and at the end he has his arm around her. Its really cute.
I'm also waiting for blankie pics. I have about 5 blankies that have gone out but no pics yet.
19 comments:
Well, at least you are hopefully going to be getting some answers soon. It sucks that he has to have more surgeries though! Poor guy!
I pray that he starts getting much better and that he can recover AT HOME! Hang in there!
Oh I hope he feels better. Someone somewhere has to have it in them to fix that baby's SVC, I know it.
I think once all the pressure is relieved he'll be a much happier boy. Same with the cecostomy. It sounded in some of your posts as though he would be a candidate. Dealing with his tummy issues will also make him alot more comfortable in the long run. Having access to his bowel will allow you to manage it alot easier too.
You'll be able to administer flushes to help clear him out and also relieve some of that pressure that gets him so distended. It's alot, I know, but in the end something has to give. He's working way too hard.
Love to you both, Steph.
Oh I really hope you get some answers. He is such a fighter and you seem like an extremely wonderful Mom. I will continue to pray for your sweet little boy.
Crap Lacey...I'm SO SORRY...AGAIN! This poor little guy, when will he ever catch a break!??? I do know for a fact that BOSTON ROCKS & IS THE BEST IN NEW ENGLAND...I mean it!!! and ifyou come, You'll get to meet Dillon & I and I'm sure Pretty Penny!!!!!!!!!
so, think about it & let me know:)
BIG BIG HUGS & KISSES to sweet Jaxson:)
Hang in there Momma
I may have asked you this before and you may have answered this, but since I can't remember.....Do you do daily breathing treatments on Jax? You mentioned how surgery is so hard on his sick lungs, so I was just wondering?
Gavin's lungs were a mess for awhile and his pulmonary pressures were very high. They even considered putting a trach in him and didn't think that he would come off oxygen for a long time, but after being on daily nebulizer treatments his pressures are normal, his lungs are clear, he's not on O2 and he doesn't get sick as frequently. They really helped Gavin and I would love to see Jax not needing oxygen anymore too.
Of course, I know that Jax has the issue with his SVC and he is a different child, but if he's not on daily treatments, I would check into this for him. It's a pain to have to do them, but it is SO worth the pay off!
Gavin is on Atrovent, Xopenex and Pulmicort everyday, whether he is sick or not. It has been such a blessing for him!
Anyway, I'm thinking of you often and praying that Jaxson gets better SOON!!!
Hi Lacey! So sorry to hear how sick Jaxson is right now. I don't know anything first hand about Boston, but another blogger I read has had experience there and really seemed to be happy with them. Her blog is http://www.mycharmingkids.net/
Her son has SVT (very high heart rate) - I know it's different, but she was really happy with the care they received. Hope that helps!
Keeping Jaxson in our prayers, sure hope he feels better quick.
Ugh Ugh girlie...Gosh I say that to you alot don't I? :0)
Para-Flu is an icky one and sure makes you feel icky! The good news is that once you've had it each time later you get it won't be as bad....Good news for you also most adults have had it as a child and only get the Laryingitis or the Croup portion which is also why we STEER CLEAR of croupy froggy talking people especialy in the spring fall cause that buggies seems to like those 2 seasons :0)
Jophie and I had our own little round with para-flu a few years back....Bronchitis, Sinusitis and Laryngitis! We both had an ITiS-Fest going on! hehe
Took us a month with 3 rounds of Biaxin to clear the buggies from us! I sure hope Jax shakes this sooner! MUCH sooner :0)
Will be praying about the decisions you need to make on the surgeries....I sooo hate making those types of decisions too. Jophie too has such a high risk from all things pertaining to surgery from the anethesia to the waking up to the main surgery itself.
Lets just pray he starts perking up once he gets over this Para-flu hurdle. Once he's all perky...Bright-eyed and Bushy-tailed it'll be much easier to think about all the other things and sort them out....
Take care...Give Jax a squeeeeezy for me...
Hugs,
Trina and Jophie
I'm sorry to hear little man is still not doing well. Please give him big hugs for us. We'll be watching for updates!
Angela
Poor Jaxon! And poor mommy! It's so hard having to deal with all this medical crap. I know. We are praying for you and Jax! Please keep us posted!
Oh,my friend.Sweet little Jax.Where's my magic wand when I need it?Praying for you and loving you in California.And thank you Lacey, for your faithful friendship even when you have so much going on.I am so blessed to have you in my life and yes,soon maybe the ocean will be just a short drive away from you too.
Oh yucko! Sorry to hear the latest health issues. Hang in there little buddy.
Wow, that poor little guy is going through so much. Our friend, who's little girl has spina bifida just got the Para influenza as well. Hope your little one gets feeling better soon. You are both in our prayers.
Thanks for your response! I would definitely check into the breathing treatments! Gavin didn't show improvement with them at first either, but after using them for awhile his damaged lungs became so much better.
Since Gavin and Jax have such a big history with their hearts and everything else, just using the breathing treatment once like you do for an asthma attack won't help. It takes awhile for the lungs to repair themselves. That's probably why it doesn't seem to work when you try nebs on Jax when he is sick.
I was very skeptical about them at first, but I can honestly say that I believe doing them is what has helped Gavin stay as healthy as he has the last year and a half!
Also, I was told that using Albuterol with heart children is not such a good idea, because it affects the heart rate. They put Gavin on Atrovent instead. It is better with cardiac issues.
Our pulmonologist said that what we use for nebs with Gavin looks like, not such a good idea on paper...you usually don't see a child using 3 nebs in one day, everyday for maintenance. But, with someone with such damaged lungs, it's a good thing. I have other doctors say to me; "He uses these EVERYDAY? If he uses them everyday then they won't work when he really needs them, like when he has a respiratory infection or something." Our pulmonoligist assures us that this is necessary for someone like Gavin and that you can increase them for times when he is sick and that some day he may be able to get off most of them, when we are confident that his lungs are healed and doing their job. Plus, Gavin has a leaking Mitral valve, so there is a possibility of damage being done to his lungs everyday anyway.
Sorry for the book that I've left again! Hope this info helps. Let me know if you want anymore info or if you just want me to just shut-up about all of this! :)
Hope Jax is improving and you guys are having a good weekend!
Just dropping by to let you know I linked to you on Down Syndrome New Mama today.
Hi lacey, Abigail is my niece and Junior loves having her come over for a visit.
Sure hope Jaxson is feeling better today.
We had to take our son to Boston Children's for a very complicated heart cath...we heard it is up there as far as children's hospitals (#2 I think) So I would definitley consider it if I were you, he would be the best of hands there.
We are getting ready to take Baylee to Boston's Children's in the next month or so. She is going to see a Pulmonary Hypertension Specialist. I've heard nothing but good things about this hospital. They are ranked #1 for Cardiology, but I'm sure other areas are just as good. Blair was hospitalized back in March (while we were on vacation) for Para-Influenza. It's a nasty virus that's for sure! I hope he feels better soon!
Hugs - Tiff
If it's Cardiology then you are going to the right place! It's far for us too... like 1500 miles one way! So, that's a flight! But, the person I spoke with in Cardiology said they will make the decision by looking at all of her information before they make us take a trip up there. They are VERY helpful in looking at her file and have been VERY good with getting back with me on stuff!
Hugs - Tiff
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