Eden had a pretty good day. She was able to get up and around in her walker a little bit, and finally found her smile. It was sorely missed on the few days it was absent. She got many compliments from strangers. One person commented that she "smiles with her whole body." It's true, and something we've recognized since she was a tiny baby. I love that smile.
Eden was much calmer and more content today, and she had a pretty good appetite...for her. Her oxygen sats are good when she is calm, but they drop into the 80s when she gets worked up, such as after she plays for a while in her walker. She spent a couple of hours last night, and a few hours today, off the oxygen, but she still needs it periodically. Regarding going home, the doctor today said the dreaded words "maybe tomorrow", but I think Tuesday would be a safer bet.
I've been amazed and dismayed to notice how much worse Eden's CP symptoms are when she is sick. She is a total rag doll in the trunk, and her legs are stiff as boards. I've actually never seen her legs as stiff as they are. Her left leg is especially bad, and is kind of rotating in. I'm really stressing out worrying about it pulling in her hip socket. We try stretching, but it is really difficult. It makes me realize that what I've always considered mild for Eden, may actually end up requiring intervention, like Botox and hip surgeries down the road. And with her trunk being so floppy, we also have to worry about scoliosis and possible spinal fusion in the future. I always try to take things a day at a time, but I guess I have to be prepared for the worse.
In addition to the CP issues, there has been talk of following up with an OT at the University Hospital for a swallow study, then maybe an overnight pH probe study from there, to look at her reflux and possible aspiration. The words "g-tube" and "nissen fundo" were mentioned, but that is still in the long term and depends on what the results of other studies show.
In addition to ALL of this, I also talked with the ENT who did Eden's cochlear implant sugery a couple of weeks ago, and her referred us to another ENT to look at Eden's tonsils and adenoids. We're considering having them removed to help open her airway. She is really snorty when she eats, and we have wondered whether this might be contributing to her eating difficulties. She also snores.
Where do you draw the line in all of this? How much intervention is TOO MUCH? How do you weigh the risks of the surgery, and the fact that it might not even work, against the benefits? I hate worrying about all of this all the time. I can't stand the thought of putting her through any more procedures and surgeries, but I know I won't be able to avoid it forever.
Don't mind Mommy's hair in this pic and Eden's hair above. It's been a long week and we've bigger things to worry about!
13 comments:
Glad to hear she's on the mend! My son caught the rotavirus on Friday, and our reasonably short ER visit (a few hours) was stressful enough. I have a new level of respect for parents who have to face this on a regular basis!
Oh, and Eden looks SO grown up in the first picture! You can almost see what she's going to look like 10 years down the road. What a beauty.
Speaking of beauties, isn't that Holland in the last picture, and not Eden? ;)
Billie- You are all beautiful! I love reading about your amazing girls. So sorry you guys have been sick.
Get well soon!
-Anna
So glad Eden found her beautiful smile! I think as hard as it is, you really need to take things one day at a time. I've found with all the stress I've had in that past year, that is sometimes the only way I can manage.
Wishing you healthy kiddos and hearty appetites! Hope this week is better than the last two!
Billie, Sounds like things are starting to turn around. Get better and home soon! We love you.
Heather and Miss Marley
Beautiful pictures of a beautiful child! I imagine Eden wouldn't like to hear this - but consider the walker as possibly contributing to the increased tone in the legs and the left leg rotation. Walkers do that. Our kids with CP use their spasticity and tone for movement, especially in walkers. Sorry to say it, as I see how much pleasure it gives her.
Nice Shades! :-)
Everyone I know has been sick lately and *knock wood* we're staying healthy. My friend's son just was released yesterday after having been admitted with croup and now diagnosed with asthma... rough time of year as not cold enough to kill the germs that have been laying dormant. Blurgh.
Get home soon!
I'm glad Eden is on the mend. My daughter has mild/moderate CP and always gets so tight when she's ill. We've done the botox thing and that was certainly successful while it worked and now are in research mode for her tendon lengthening surgery.
Lauren had a nissen/g-tube done at 16mo and it was the best thing we could have done for her. Her tone decreased drastically because she wasn't in pain from the reflux anymore. I would suggest getting an upper GI and go ahead with the swallow study. Make absolutely sure a Nissen is needed. I speak about this alot to Lauren's surgeon and he said it's the kid who sort of needs one/sort of doesn't that has issues with the Nissen. I appreciated the fact that we got a g-tube at the same time. It saved us the whole retching thing. I can elaborate more on that if you want.
Gina
So great to see Eden looking happy, she is getting more grown up looking all the time:)
I hope to read that you are all at home and doing well really soon.
Take care,
Kelly in Canada
Hi Billie,
I just wanted to mention med that seems like working for us so far. My son about your girs age has reflux. He was on couple meds Prevacid and Zantac and wasn't good eater at all. Our GI recommended Periactin. Supposely it stimulates appettite and helps food to go faster through stomach. My son never ate that good in his life like with Periaction. He finally got some belly, we stopped Zantac and trying to decrease Prevacid. And another thing I just noticed. He always used to drool, almost all the time. It's gone. I think using his mough muscles more helped him with his drooling.
Hope you don't need to go to any of those mentioned extremes.
Hugs
Oh, Billie! I haven't been around much lately, and I can't believe everything you guys are going through. What a nightmare for all of you.
That smile is always a good sign, even if it's still a small step to going home. Ethan has been so sick this winter (and spring) as well, and it makes such a difference when he can be happy again, even if he's still feeling sick.
I've also noticed how his CP "worsens" when he's sick, but with him it's also a matter of his meds being out of whack. He won't eat or drink enough to keep his meds down, or he throws up. His tone gets very high, which in turn makes him more uncomfortable and irritable. But sometimes it's hard to tell which came first - the high tone or the crabiness - since each can cause the other.
Good luck with all those other issues. I hope you don't feel overwhelmed. You've got a lot on your plate at once. Try to take things one item, one worry, at a time. You can't see into the future, you can only do what you think is best right now. They will all work out, and you WILL make the right decisions. I promise you that.
Hello all who read Bille and John's blog -
I have an idea - You know that cute pony walker that Eden is riding in the pic? I saw her using it today and although she is a bit under the weather, she can cruise. It is an amazing source of transportation for her on her own. The challenge is, she doesn't own it and she has to return it really soon! We have to come up with a way to raise funds to help Eden buy one of her own. So, let me know your thoughts and let's do it! Please! The cost is somewhere around $2500. If you are interested in helping or have an idea, e-mail me at alioct74@aol.com.
Thank you in advance. Allison
My opinion (not a med pro, just a mom with relatively healthy kids - except the one who has croup right now)...I'd start with the least invasive and work my way up in scale. Do the swallow study and the overnight ones (once she's past the pneumonia). Then consider the tonsil/adenoidectomy because it's the "easiest" surgery (fairly quick recovery) and if it helps her start eating more, then you'll be glad you did it. If she doesn't regain the weight at a good pace, well I hate to say it but maybe she needs more invasive help.
I'm not a big fan of the medical world but, gosh, my 5 month old is over 18 lbs. I can't imagine him any lighter or more delicate.
My 3 year old has plateaued at 35 punds but was also in the 18 pound range at 4-5 months. And he had difficulty eating and dropped down to 6 lbs 9 oz as a newborn while we struggled to get him to nurse and had bloodwork every day for weeks trying to find out why he was so sick. I'd have been reluctant to allow surgery on him but if he hadn't perked up and started packing on the pounds like a bodybuilder, I might have consented.
Hope they both start getting better soon and you can get back to your non-hospital life!
Hi Billie,
Good to hear Eden is on the mend. I have the opposite thing happen with Moo when he is sick. He goes from being stiff as a board to all floppy - it's how I know something is going on. With his big brother, I know when he is sick cause he stops talking. As soon as he starts feeling better, motor mouth starts again.
I know what your talking about. I'm going through the same things. I don't know what the answer is because there are some really tough choices to be made. But just wanted to let you know that your not alone!
L,
Jacqui
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