Tonsillectomy Update?

Can you call it a tonsillectomy update when no tonsillectomy took place? Well, there is much to report.

1) Tonsils -Apparently her tonsils are now so small that he wouldn't remove them. He says he has only been in this situation a handful of times. The good: no painful recovery. The bad: there will be no improvement in her swallow or airway since there was no surgery done.

2) Adenoids- They were fairly large so he went ahead and did a partial removal (not full, since that tends to cause nasal speech in kids with low muscle tone.)

3) Her soft palate and uvula are very close to the wall of her throat. This is not good and worries him that she would develop sleep apnea if she were decannulated (during the day it's less of a problem). Our options: We could remove part of the soft palate and uvula. Yes, that's done. And no they don't put the uvula back after they reduce the soft palate. Apparently we don't really need the uvula and doctors in East Africa remove it routinely. Still that doesn't sound so great to me. Of course we could also try CPAP if it turned out that she needed it post-decann but my guess is he doesn't expect that to be successful. I wonder if this could have been caused by her craniofacial reconstructions because the advancement of the forehead causes the mid face growth to halt or slow. I don't recall them ever mentioning it being "too close" before.  I will ask the ENT at our next appointment if a mid-face advancement (which Ainsley may need at some point in the future to reallign her jaw and bring the middle of her face back forward) would do the same thing.

4) Tongue- Her tongue sits kind of far back in her throat. It isn't clear if it causes an obstruction, although it is possible that it contributes to the problems. But there isn't much that can be done for that if it turns out to be the case.

5) Granuloma - I knew she had a granuloma. In the past I think they didn't remove it, thinking there was no need, and that it would likely grow back. But this time he decided to remove it. Pictures are below. He is actually hoping that this improves her airway since this mass is no longer obstructing airflow. Of course it could grow back. They often do. This is a common side effect of having a trach.

Are you tired yet? I am, but WAIT there's MORE.

6)Collapse of the trachea - She has a fair degree of collapse on the wall of her trachea from the hole where the trach is. This is another common side effect of having a trach. He doesn't think it is severe enough to cause a big problem in itself but we aren't necessarily out of the woods completely for needing a laryngotracheosplasty(LTP).

7) Glottis- The glottic area is about 1- 1 1/2 sizes smaller than he'd like to see, at about a 4.5 It sounds more likely that she may need a cricoid split surgery to open the glottic area. The cords are still a little swollen but much much better than in the past.

8) Scarring- the terrible scarring and fixation of her vocal cords and arytenoids didn't look so back to him this time. So that's good. Really good. It explains why I've been hearing more varied vocalizations from her. The bad news is that it meant he couldn't laser anything to help her out. Or maybe that's good.

9) Ear Tubes- He did note an unusual cresent shape with a ridge on the front part of both eardrums. What this is/means who knows but he didn't think it should cause any loss of function. He didn't note any changes to the eardrums that would indicate a need for tubes and since tubes can cause problems he opted not to place them. That's fine with me, even though this past year she's been hit with a lot of ear infections. I'll hope that it improves on it's own.

10) Capping- He says she SHOULD be able to cap. That kids have to get used to it. But wait, didn't he also say she might need a cricoid split to open the glottic area??? I guess this means we are back to trying to cap. Probably unsuccessfully.

I don't know about you, but my head was spinning after all this. WTH does all this mean? .....The road to decannulation could be tricky with lots of potholes on the way. There are plenty of things that could go wrong. Is any of that a surprise to me? No. Where does this leave us? We will watch her closely over the next weeks hoping that the granulation removal opened up her airway quite a bit and that she has an easier time capping. Then he wants to see her for a scope while she's awake in the office in the next month or two to see what is going on while she is breathing. Then I guess we might start talking surgical options.

Upper Left: Vocal cords. Much more open than in the past.  Upper Right: The granuloma Lower Left: The granuloma area after removal.

Ainsley has been happily napping since we got home before noon. I expect her to recover fairly easily, especially since the tonsils didn't come out, but we have good pain meds just in case. There will be associated swelling with the procedures so I don't think we'll know how much it will help her for at least a week maybe more but be sure I will let you know as soon as I do.

Tonsillectomy (and All) Started

 

I'm so relieved we actually made it to this point! We arrived at 6:45 and went through all the pre-op stuff. It always takes awhile. I don't know why they bring you in so early only to have you sit and wait, just watching the door hoping it will open.

2 minutes after I changed her diaper she was sitting on my lap and peed, of course her diaper leaked so now I feel like I peed my pants. Joy. I've really gotta' get this leaky diaper problem fixed.

Now that Ainsley is older and more aware she gets really nervous around medical personnel so they let me bring her back to the operating room. It's amazing to see. But you have to put on a special "gown". BeUtiful. What a mom won't do for her child.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I think it was about 8:00 when they put her under. The procedures should take about an hour and quarter or so. Steve is meeting me here later, he had to get the older kids ready for school and drive carpool, so it might be over by the time he gets here. But likely recovery will take some time as she comes out of the anesthesia. But I'm hoping he makes it here in time to meet with the surgeon. I can't wait to hear what he has to say about her airway and whether or not she needs ear tubes. If you can believe it, this is all outpatient. So when it's done we go home.  I'll post another update when I can.

Meanwhile I'll be sitting in the cafeteria lamenting the painfully slow internet connection. This photo is for Karen, whose local children's hospital looks out onto the cemetery. I am thankful for the view as I kill time.

P.S. Anyone else hate this new blog post interface. I give up on fixing the allignment. And where is spell-check?!

Surgery Monday?

It's been a tiring week that I am thankful is drawing to a close. Ainsley has had a low grade fever that has had me very worried. Normally it would be the kind of thing you'd ignore. But since she is scheduled to go in for surgery on Monday I've been VERY nervous. Especially since this is not our first or second but our THIRD date. Despite keeping her home from school it looks like she caught a virus from me. Even though I avoided going out of the house as much as possible and used hand sanitizer every time I did.  Lady luck isn't on my side. Overall it seems to be quite mild so that is good, except it made it unclear if I should reschedule or not. The fear is that if it turns into a cough it would be bad for her recovery. It's not great to have your tonsils removed and then do a lot of coughing because there is already a risk of bleeding post surgery, especially given the large size of her tonsils. Of course we don't know if a cough might develop at the last moment but since it's Saturday and things are looking pretty good I'd say there is about a 70/30% chance she'll get her surgery. Earlier this week I was guessing the chances at 50/50% so thing are improving. But if she has a fever of 100.4 within 24 hours then we will have to cancel.We will keep you all posted. As it stands we will bring her in at 6:45 Monday to be evaluated. If they think she's okay the surgery will proceed.

Unexpected Visitor - Grief

I think this is the first time I've posted a link to another blogger's post. It's a surprisingly amusing post titled Grief by Heather Schichtel from the Hopeful Parents blog. I hope you read it and like it. I thought this was so well written and appropriate for today because....

I awoke this morning from a sound sleep to my dear husband handing me the phone. It was Children's Hospital returning several messages I left last week about getting in to see the Neurodevelopmental Clinic. It's a little challenging to wake up and have a conversation about neurological development while not letting on that you were actually...asleep.

After that conversation and multiple other calls about this, today, I'm still not sure I am actually any closer to having an appointment scheduled that might reveal the answers I'm seeking - will my child be able to walk, talk, function on her own in the world some day? I know in my heart of hearts that I am unlikely to receive anything more enlightening than the previous prognosis of "Ainsley is teaching us about herself. We'll have to wait and see." which is really just a fancy way doctors have of saying "We have no idea." But I have to try. Maybe another brain scan plus a clinical assessment from a neurologist or physiatrist would yield answers. I spent another good chunk of my morning trying to locate diapers that fit since she is too big (38" and 41lb) for size 6's,the largest size sold at the stores. For the past 2 months I've been working with a medical supplier, trying different options, and so far I'm just getting a lot of leaks, including a leak on the crib this morning.

I should be out of the house making the most of the time I have with our nurse here to care for Ainsley (she's staying home from school to keep her well for Monday's surgery). Instead I just can't get past dealing with all her medically related stuff. Blah! Then just now by chance I happened to read Heather's post and then realized that grief was visiting me today. But he knows I don't like him very much and was trying to quietly hide in the corner watching me this busy morning hoping I wouldn't notice him. All I have to say is "Grief, I've got the veggies for Ainsley's food cooked and as soon as I make her blenderized formula I'm outta' here and you are NOT welcome to tag along!"

Anatomy Lesson

With a sister like Ainsley we have a lot of medical jargon flying around in conversations at our house. What's a brother to do?



Actually I'm kidding, I can't take credit for this other than he's my kid and I filmed the performance. Adrian's Kindergarten teacher (who is an amazing song writer and educator) wrote this song and taught it to the kids last year. Although during their studies of human anatomy I did participate by visiting the class (both with and without Ainsley) to talk about how not every body works in exactly the same way. It was great. We talked about ways that people's bodies might be, look or work differently, such as how it is common that some people need glasses to see, a hearing aid to hear, or a cane to walk, less common differences such as people that are deaf, blind, in a wheelchair, use a walker, are born with different body parts or just look different, people that use a tube to eat or a tube to breathe, like Ainsley. I could go on. There are too many types of human differences to list.

Last week when kids on the school playground were staring at Ainsley a friend said to me that kids "in this demographic" aren't exposed to or have children like Ainsley. What the hell does that mean?! It is ignorance that people think that birth defects happen to a certain type of person. In fact 1 in 33 kids is born with a birth defect. Yes that's right, click the link! And birth defects happen in every race and class of people. 1 in 625 people are born with a balanced chromosome translocation, the chromosome difference that Ainsley has that is likely the cause of her birth defects. Incidence of craniosynostosis are actually relatively common at 1 in 2,000 births. Again, I could go on, but hopefully I've made my point. To have birth defects is not an uncommon as some people think.

At one time we had only planned on having 2 children. If we had stopped there we would be among the smug who count themselves as producing genetically perfect children. The reality is that if you find yourself in that group you are just LUCKY. Now that I have a child who is not "typical" I know that I am STILL LUCKY because having a child like Ainsley teaches you a lot about people, about what is important in life and that ultimately we are all different and all the same and that all human life is valuable. AND that...by the way....it's not nice to stare at people who look different. But actually, you really don't have to have "special child" to know that one.

Pucker Up

I'm sure one day she will hate me for sharing that one, but for now I thought it was too dang funny to pass up.......

.....but this is the real thing I wanted to share.....

My baby girl (yes I know she's 3) learned how to kiss with her lips together yesterday. This is a new skill (Thanks to Adrian for noticing before he left for school in the morning.) I'm sure we'll still be the recipients of a few sloppy wet open-mouthed kisses yet but she's on her way to figuring it out. I think she also says uh-uh in the video. Although I've heard what kind of sounds like up (uuuuuu for weeks), and I think she's come pretty close to saying "uh-huh" (yes) and uh-uh (no), all in context. Wha-da-ya think? Does this count as her official first word?

She's Back to School - Life Returns to Normal

She went off on the bus at about 8:20. The house feels weird when she's not home. I can't get used to the quiet of no trach breathing and no worry over whether she needs suctioning. Then the big kids leave for school and it's QUIET. I can hear the ticking of the clock and time seems to stand still. I hope we can get back into the groove after such a long break and she can get in some good quality school and therapy time before she heads into the next surgery on February 8th. She seems to be really picking up on a lot lately and is doing more physically I'm excited to see what school does for her. Thanks everyone for your support during this time! It means a lot to know how much you all care. And we appreciate the comments.

Giving New Meaning To "Bad Hair Day"

I guess this means her head doesn't hurt. I bought this little hammer today. I thought this would be a good toy for her for increasing her grip strength and to encourage pounding, it lights up and makes sound. She likes it and is pounding everything. Being silly I hit myself on the head with it and then she decided to copy me. Yikes! She had no pain meds today. Not even Advil. She didn't even complain when I washed her hair later. She's over it and moving on!

But I didn't send her to school because I kept her up late shampooing her hair again. I tried Joy. Shampoo, rinse lather repeat, rinse lather repeat, rinse lather repeat.... but it didn't work and her hair was as greasy as ever. But I had to try. Besides, I wasn't sure our nurse would feel comfortable showing up at 8:15 and jumping on a bus with her given that it wouldn't have even been 4 days since the surgery. I think it was a good call. She had a great day at home with Carmela and was super busy and happy. Plus, something HAS to be done about that hair.

Tonight I gave her yet another bath. Have I mentioned how much she loves baths? She can hear the bath water running from any room in the house and will come "runnin" to see if she can get in. Or that aside from taking baths her favorite thing to do is throw the bath toys that we keep in a tray under the clawfoot into the tub? Tonight she was so excited she was standing on tiptoe and even lifting her leg to stand one legged for a second. If she gets much taller she might fall in (don't worry we'll keep an eye on her).



This is what I was trying to fix:


Gives a whole new meaning to the term "bad hair day" doesn't it? Again, this is Bacitracin the hair is not wet and has already been shampooed 10 times. And seriously, it was like she grew a Brillo pad on the back of her head.

I went to the store for Dawn. My friend Janis says this is the dish soap they use to wash birds that get stuck in oil spills so I figure it's my best shot. I agonized over the 7+ different formulas, opted against "with odor eater", "with bleach alternative" three scents to choose from, hand soap (why is Dawn making hand soap disguised as dish soap?) two scents to choose from, or Dawn with Oil of Olay two scents to choose from. I wanted to scream. Although I questioned the decision we went with the original bright blue formula. I figure massive amounts of dye are better than bleach or whatever chemical eats odors and who knows if the hand soap variety is up to the job. And I suspected the Oil of Olay version might add oil, not worth the risk. If the security people were watching me I'm sure they wondered why it was taking me so freakin' long to pick dish soap.

Rather than wet the hair I put massive quantities of soap directly into her dry hair and scrubbed and scrubbed, combed and repeated, being very careful not to let it get in her eyes. And it mostly came out. The area where the drain was is a bit swollen so I didn't want to rub too hard and that area is still a bit greasy but it's good enough that she can go to school tomorrow without shame. And luckily all that dye did not turn her incision blue.

Day Two/Three

My girl has been through SO much. The only thing I can figure is that it's given her super-human strength. If it weren't for the hospital gown and headscarf would you know that this child had just been cut across the top of her head from ear to ear and had her forehead peeled back to reveal her skull and then had plastic parts screwed to it?!



How about this kid? Pulling up to a stand repeatedly to throw toys over the arm?



Or lifting an empty beer bottle to swig it and at the same time tasting a lolli-pop (which she never does)?

After months of not attempting to crawl up stairs she managed to get up one by herself.

She decided to take up playing the tambourine and lifted and banged it with amazing ease. Notice Adrian asleep in the background.

She made it clear that she wanted to climb the stairs like we do most nights. Surgery, smurgery!

Despite her apparent super-human strength I had to kind of draw the line when she wanted to fall back on the bed repeatedly. I just couldn't watch that head fall on the bed. But she didn't want to take no for an answer and decided she'd get herself up and fall back by herself.

Then she sat in bed and read books and we had to MAKE her go to sleep. I was wiped and went to sleep at 10:45 and fell asleep to the sound of Ainsley playing with her pal Voilet in the crib.

Super-human I tell you. I think she was SO excited to be home she was more energetic than normal last night. She had a great night's sleep and is as happy as can be today. No pain meds.

Today I spent the better part of an hour trying to shampoo anti-biotic ointment out of her hair. After the 6th shampoo, comb through and rinse she started to complain but I don't think there was any pain, she was just annoyed. Who could blame her. But this is what her hair looked like before the bath. Her hair is not wet, it's all GOOP which is why she was wearing the scarf.

And now that I'm done she still has Jheri-curls, I tell you. In this next picture her hair is dry and this is AFTER shampooing.

HELLLLP! If you know how to get grease out of hair (keeping in mind nothing that would sting 11 inches of incisions) tell me quick! I gotta get her ready for school tomorrow 'cause she's ready!