I just now got to this thread. I’m glad to hear, Bearflag70, that your little girl’s surgery was a success. May she have a speedy recovery.
Oh thank God!
New little pics of her at the blog!!! Everyone goo & coo at her!
:):)
Yippee! Calloo! Callay! Hoots and Cheers all around.
You might be hearing a rumbling of sorts in the atmosphere today Bearflag…don’t panic, it’s just a cheering from Downunder in appreciation of some good news at last. 
I know we’re a million miles apart (almost anyway 
), but your family is well and truly in my heart and mind on a daily basis. Your precious little Getty has touched hearts on the other side of the world, and not many of us can claim such an impact…even if we live to be 100.
May you all have a good day tomorrow, and an even better one the day after!!
Cheers
kam
i hope you all have a good day today, and that friday is a good “go home” day.
Looks like Getty made it through just fine and is now sporting a new G-tube and Nissen fundoplication. Discharge delayed to Sunday but not for anything bad.
YAY!!!
Thread title change requested.
FROM: Devastated: My four-month-old baby girl has a terminal condition
TO: My baby girl has Spinal Muscular Atrophy (SMA)
Changed thread title from “Devastated: My four-month-old baby girl has a terminal condition” to “My baby girl has Spinal Muscular Atrophy (SMA)” at the request of the OP.
Being discharged today! h00t!
Never have I been so happy to be confused by a thread title change!
Wonderful news, Bearflag70. Continues prayers coming for a good recovery.
Congratulations and Welcome Home, Miss Hootie Hoo!
Cheers!!!
Man, you’re not kidding about that. I remember when my son was about 2 and a half and needed hernia surgery. After he get his Versed (sp?) he was all laughing and loopy and it was kinda funny that he was basically stoned out of his gourd, but once he was prepped and it was time for us to hand him over, seeing his little body passed out on that seemingly-huge gurney with IV tubes and whatnot sticking out of him, it was pretty heartbreaking and scary.
I hope your wee one will be just fine, Bearflag. I may have missed it earlier in the thread, but since this surgery is being deemed a success, what does that mean in terms of her condition going forward?
Home again, home again. This is such great news. Yay Getty!
Home! It’s wonderful!
Seeing the title change, I could hardly believe it – I know I haven’t really posted in this thread, but I have been thinking about you and your family, Bearflag – this is wonderful news!!!
Wonderful! Me three (or is it 30?) on being slightly confused on the title change at first. And I’ve definitely thought of your family often, though I don’t post very much in this forum.
As far as the thread title change, I just didn’t feel like “devastated” or “four-month-old” applied anymore. I also thought a specific reference to SMA was better than the generic “terminal condition.”
As far as implications for her future health… Well, she still has SMA and there’s nothing we can do about that. She will have progressive weakness over time. As long as we keep her healthy and as strong as possible, it should be a slow progression. Some kids pass after only a couple of years. Some kids live longer… 5 … 8 … 11 … 14 … 21 … ???
Getty is a pretty robust Type I, so we figure she’s got plenty of life in her. If she was a weak Type I, then we may have decided not to do the Nissen fundoplication. We are also working to get her a biPAP breathing machine for home night use. Again, if she was a “Weak 1” then we may have decided not to pursue that. Based upon her current strength, we have to make decisions as if she’s got many years of potential life, although some parents decide to do next to nothing, allowing nature to take its course.
Food in the lungs would be horrible. She is losing her swallow function, so we got her the G-Tube to safely bypass the throat while feeding. We got her the Nissen to prevent her from potentially refluxing food into her lungs. Reflux is a big risk with SMA, especially in SMA kids with a G-Tube. We have done what we can at this point to protect her lungs from food.
We need to keep her public exposure limited during flu season. If she gets a cold or flu, the increased secretions (saliva, mucous) can end up in her lungs. She could get pneumonia. She has impaired cough strength, so a cold a higher risk. It could be fatal.
The single biggest issue is keeping her lungs clear at all times.
We suction her oral and nasal secretions a few times a day. We use a cough assist machine to get her to artificially cough up secretions twice a day. We will be using a bipap machine at night once it arrives. She will be on a pulse oximeter to monitor her vital stats much of the time once we get one.
We feed her though a G-Tube using a mechanical feeding pump. Nobody is allowed in the house if they are sick. All hands must be washed or sanitized. If we parents get a cold, we sleep separately and the sick person must wash hands frequently, wear latex gloves at all times, and wear a mask.
Some kids get a mucous plug in the lungs, maybe collapsed lung, or other lung problems. Pneumonia or some other lung problem is probably the #1 cause of fatality for these kids. Some kids can be strong and ok one day, catch a cold, and be gone the next. You never know.
One SMA child just passed away the other day when he caught a cold and the parents couldn’t manage the secretions. He lost a lot of strength and passed away after a few days of general weakness.
Another SMA child ran into problems a couple weeks ago when the parents decided to go out to get something to eat. On their way home, they ended up following the fire truck and ambulance to their house. The paramedics wouldn’t let them in their own house. When they finally got in, their child was blue and it appeared the respiratory machines were not being used by the long-time babysitter. She was rushed to the hospital but needed transport to another hospital. They put her on the helicopter, but the battery was dead. They put her in an ambulance. She was in the hospital as they worked on her. Days later, they sent her home. Once home, she started having seizures, probably due to the prior oxygen deprivation caused by a mucous plug.
Even if you keep the kids disease free, some kids just get too weak to breathe on their own anymore. Some kids become full-time bipap dependent instead of just bipap at night to help them breathe.
Some kids get so weak, the parents are faced with a horrible choice of whether to put their child on a permanent ventilation machine with a tracheostomy… or let nature take its course and let their child go as gently as possible, letting nature take its course. “Trach child” or “trach family” are common terms in the community. I have heard of an SMA1 guy who is 30 years old and not trached. It’s rare, but I guess it happens.
SMA1 kids reaching a certain size usually end up in power chairs. Their bodies are virtually immobile and speech is impaired if speech is even possible. However, they are fully cognizant and generally intelligent and sharp-minded. If verbal skills are a problem, they can sometimes use sensitive touch devices to communicate.
Some parents need to buy a vehicle large enough to accommodate the power chair, a lift system, and medical equipment. Some parents have in-home nursing care.
Despite some of the generalities of SMA, each case is different. We never know what’s going to happen, so we just live each day as best we can, appreciate every happy moment to its fullest, and keep our child as healthy, happy, and strong as possible.