Today our day started by meeting with an ENT. They are pretty concerned about Nina's aspiration, and her tonsils might be contributing to the problem. Next month, Nina will have her tonsils out, and they will look at several parts of her throat as well as her lungs. I think there are 6 procedures that will take place. Right now they are all jumbled up together so I cannot tell you all that will happen. But, we will stay over night, and they did go over some risks (like a punctured lung or severed vocal chords, which freaks me out!). This is all because of her aspiration, and we need to check and see if this has been going on all her life, and if there is any permanent damage done to her lungs and throat.
They could not check her ears due to excess wax, so her ears will be cleaned while she has her tonsils checked. Also, they decided we might as well only sedate her once, and her MRI most likely will happen that same day.
Yes, April 22nd will be a huge day for Nina!
Rehab doctor checked her over and Nina is now scheduled for a round of Botox injections. She is going to have some pretty good looking legs! Ha! Botox is used to help the nerves stop firing a signal to the brain, therefore, the muscles can relax and her legs will not be as tight.
We added an X-ray in there.
Then we had an echo. I asked the technician at the end if there was anything we should be concerned about. I am no expert on heart ultrasounds, but something looked funny. Her response left me very uneasy. "Sorry, I cannot tell you what I saw. They told me your doctor will go through those results with you." So, there is something, because she did not say, "No, nothing to worry about."
Then, we had a bonus appointment with an audiologist (ENT thought we should see him.) let me tell you, I think this doctor has to be the best kids doctor EVER! Loved him! And Nina did too! Verdict, Nina has great hearing on her left ear, but very limited hearing on her right ear. They will have to recheck once the ears have been cleaned out and they make sure there is no fluid.
Top it off. Nina has gained NO WEIGHT since we got her. She is almost 4 and only weights 26 pounds. Could it be the heart? Could it be aspiration? Could it be something else? I don't know! We will know more on Monday when we go back and go through all her results.
So if you think about Nina, will you pray for her? Pray for her body, and pray for wisdom for the team of doctors working with her.
I am exhausted, I will go to bed.
When Angela goes in to get a whole bunch done at once, we call those "tune ups"! LOL One time she had SIX doctors lined up to see her during one session under anesthesia! First the eye doctor who put her stents in her eyes along with lid reconstruction, then the ENT did a bronchoscopy and cleaned out her sinuses. Next was GI who did another endoscopy along with celiac biopsies, then came the surgeon who put her gtube back in, then the dentist for a tooth cleaning, and last the audiologist doing an ABR. Yep, that was one big day for my girl! I think she was 4 or 5 at that time.
ReplyDeleteAs for the echo, that's what I'm going to school for right now, getting BOTH my cardiac and maternal-fetal certification. The techs ARE NOT supposed to tell you ANYTHING, good OR bad! It's because they do no not have a medical license, and if they said, "everything looks fine", only to have the doctor look at it and see there IS a problem, they could get into HUGE trouble! So, try not to stress too much about the echo just yet. Easy to say, I know.
What are they looking at with her esophagus? I'm curious what her cricopharyngeal muscle looks like. If it's too tight, it affects the epiglottis. That's the muscle Angela is having trouble with because of her stroke. (it's the muscle she had surgery for out in Boston, and we'll be going back again this summer!)
Praying for you all! Thanks for keeping us posted and informed. Love you!
ReplyDeleteEllen, Don't get caught up in worrying. Especially that the ultrasound tech. didn't give you any news. Ultrasound techs. are not allowed to give ANY information whether good or bad, no matter what. Even giving hints to what the news may be can get them into big trouble. We had 9 ultrasounds with Isaac and 6 with Lily, Only when the Dr. was present during the ultrasound did we get any information right away. The other times when it was just the tech. we got nothing, and had to wait until the Dr. would schedule another appt. to get news. After several ultrasounds where the tech. gave us no news we asked and they explained their predicament. Most techs. would love to be able to give you the information right away, they just aren't able to.
ReplyDeleteAside from those ultrasounds I have had about 12 of my own and it was always the same thing, never got anything from the techs., even when we had lost a baby- the tech. couldn't tell us, we had to wait for the Dr.!
All that said, we'll be praying hard for Nina and for you! Praying for God's hands to be in all of your journey!
Lots of things on your plate right now. We'll keep you, Nina and the docs in our prayers. How frustrating not to know results when you know there's something not right.
ReplyDeleteBeen following your blog from RR for a while now and look forward to each post and the pictures. I hope the day of all the procedures goes smoothly and keeping fingers crossed that if they do find something, it's minor. Does she eat a lot? If not so much, it could be due to the discomfort of aspirating? Or maybe because of the reaction she has to thin liquids, she might be hesitant to put things in her mouth like food? Just guesses. I will keep your family in my thoughts as always. :)
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