I Love Drool!

Ainsley has been in a lot of pain as is evidenced by the copious amounts of drool that stream from her mouth all day long.

This is despite being on a 3 hour alternating schedule of Tylenol and Ibuprofen since the surgery. We had to stop giving Oxycodone because she had a bowel impaction (since it caused the problem). Which has been no fun for either of us. After 3 days of trying to break it up I finally ran to the Bartell's yesterday for a child's edema kit (I didn't know they sold such things), which thankfully worked. I won't go into more detail, but will just say it's good we got it out! She will be a lot more comfortable and thankfully we avoided a trip to the ER. 

Back to drool. I am hating it. But I love what it tells me, which is that she swallows her saliva.  A lot of SN kids have trouble with this. She would sometimes drool but not often or very much and now I can see the difference quite clearly. This is great to know that she has control over this function! Especially since the recent FEES and prior VSS's showed she is at risk for micro aspiration. Aspiration causes lung damage. I find it very curious that despite the test results Ainsley can swallow her saliva all day. And drink her blenderized food (or formula) and seems not to aspirate. There would be evidence of aspiration in her trach secretions. Or she would get sick with pneumonia. Her muscles aren't strong enough to consume all the food she needs orally. She requires about 1300 calories per day (That's 6 cans of formula - a lot for a 5 year old).

I'm hopeful that getting the tonsils out of her throat will help improve her swallow and I can't wait to get back to trying oral eating.  Since she's still obviously in a lot of pain I think it will be at least another week before she'll want to swallow. The pain is supposed to get worse as the scabs start to fall off. So I know to expect that.

She had a fever for days after the surgery and her neck was swollen. So I'm relieved that we are past that. We go pick Evie up from camp today. Adrian's baseball day camp all week. It really helped to have the big kids occupied because this surgery was far more difficult a recovery than the adenoidectomy in 2009. I'm hoping now that this is over we can relax and have a bit of summer fun.

Post T&A Update

The surgery went well. Dr. I didn't take the lingual tonsils but that doesn't surprise me since we went in for a T&A in 2009 and didn't get the tonsils out. I knew "I'll take a look" meant it wasn't likely to happen. That's okay. He said that her tonsils were bigger than he thought so who knows, maybe it will help. We'll see.

He also said her pharynx was collapsing so he stitched it up. What we aren't clear about is if that was a result of the adenoidectomy or not. We'll have to ask when we have an opportunity. He didn't say much else  about it.  There was some sort of mix up and even though we went to the waiting area when we were paged somehow we missed him and sat in the "orange room" waiting for him for an hour before we figured out what happened and then he came to meet with us a second time.  He'd done another surgery in the mean time.

We recently had some difficult trach changes so he checked out her stoma but it turned out to be fine.

I was called into post-surgery because Ainsley was pretty upset. She needed a lot of suctioning. There were a few scary episodes when her eyes kind of closed in a non-responsive way and she appeared to stop breathing. The nurse was quite concerned about these apneas and he called in the anesthesiologist and surgeon. In the end we decided we think she was just finally relaxing from me being there. Sometimes I think the monitors are misleading. It was a little frightening to see her respiratory rate drop to 4 (breaths per minute). She had a couple good naps and hasn't had it happen again since we left.

Ainsley's front two teeth have been loose for a year or more. Now her front top 4 teeth are loose. Then two more of her bottom teeth became loose. With every surgery I've been expecting to lose a tooth and finally we did, but it wasn't one of those darn top teeth. The adult teeth have been pushing them forward and they now look a little funny and I was finally ready for them to come out. Funny how that works.

See it there? They saved it for us. Apparently the tooth fairy at the hospital works really fast.

Here we are earlier in the day killing time. She was so cute.

She was so happy to watch a movie in the car on the way to the hospital. I haven't had a chance to talk much about it but she really seems to be paying more attention to things, videos especially. I think she can see a whole lot better after the frontalis sling surgery even if she has to use her brow to do the opening, it seems to make a difference. When we were at the RFC for Adrian's birthday dinner she was also wide eyed. And not as fearful of the animatronics. I think she could see better and was more intrigued and less scared. She isn't fully healed. It's only been just over a month so I suspect we'll continue to see a small degree of improvement.  Last time we saw a big difference at about 1 year post-op.

Patience pays. We'll have to wait to see the results of today's surgery. For now I'm just going to baby my baby as she recovers. Evie is away at horse camp and Adrian has baseball camp during the days so it will be a little easier to devote my attention to Ainsley. Steve and I were remarking how nice it is to have a surgery without a lot of blood or gore. I think it's misleading though since all the tissue removal happens inside the body. She's in a lot of pain. This is one time when I am thankful for our g-tube and that she doesn't have to eat by mouth. They gave us lots of pain meds so I'm hoping with a little TLC from mom and a few doses of good meds she'll have a good night.

T&A Is A Go!

We had a very long wait. Our surgeon was running a bit behind so it was well after noon before we were brought back. Check in was at 10:45. It was hard to pass the time and I was more than annoyed by the  lady eating peanuts and drinking Diet Coke in the surgery waiting area. In case you don't know. Kids that are having surgery can't eat or drink and it's rude to eat in front of them and it's against the rules. Luckily Ainsley didn't seem to notice.

Ainsley looked well and they nearly didn't ask us about illness (even though we'd informed the ENT nurse days ago.) She was fever free. No snot. No coughing (except a little in the morning which is pretty typical for trached kids). And they tested her sats and they were good so surgery is a GO! After waiting all that time, I'm sure glad they didn't turn us back.

After the usual procedures I took her back to the OR dressed, which is our usual method. She's happy that way and it avoids crying. She drifted peacefully to sleep and surgery should be underweigh as I type this. We will be headed back to Dr. I's special orange waiting area where we'll get an update before they bring her to recovery.

He's going to look at the lingual tonsils, and said if he removes any he'll only do it in the center since scarring has been reported to be an issue in a few cases where it actually made the airway smaller. We dont' want that. So we'll see when he comes out of the OR.  Probably I won't get a chance to update until we are home. This is an outpatient surgery.

Happiness Week 29

I had a tiresome week and it was a little harder to find the happiness but I did it. Just call me Pollyanna.

Daily Happiness Photos - Week 29

07/16 Water Fight

***

I had a lot of things to take care of around the house today and it was making me a little grumpy but then the kids had a water fight and it lightened the mood. It was great to see them making their own fun at home. Ainsley got in on the action. I was impressed that she was able to use the big squirters herself. She stood at the edge of the pool filling it for hours and got soaked!

07/17 Uno

***

After a long hard day (we had a Neurology appointment, a post for another time) I really didn't feel like doing anything. But when Steve came home at 10:30 we pulled out Uno and played. I don't have a ton of happy childhood memories but one is playing Uno with my sister and brother on the beach at Orcas Island. I can hear and smell the ocean. It's a simple game but it's fun! Years ago I found the Harry Potter version and that's even better for our family since we are fans.  I loved that Evie and Ainsley teamed up. I hope some day my kids remember playing Uno as a family. 

07/18 A Happy Birthday Boy

***

This year was one of those that could have gone bad for Adrian's birthday because we were busy. Steve and I agreed last minute to buy him a new bike. He was THRILLED. And just in case you don't know it's hard to ride a bike when it's too small. Who knew? His old bike was half this size and I wish I were kidding. Now he's riding like a pro. You'd never know he was a city kid with no opportunity to ride for the first 7 years of his life. I think he's happiest that he can brag that his bike is bigger than Evie's.

07/19 The End to a Long Day

***

I was in a bit of a funk this week. I find sometimes I get that way when there is a lot to do and very little time for me to do what I want. I get resentful. Not that I normally get to do much of what I want. I'm not even sure I can remember what that would be. Ainsley came down with a 103 fever yesterday. I felt sick but still had loads to do. Some days the thing that makes me happiest is when it is over. Especially when it's been a hot day, I lay my aching body in bed, the fan is blowing down on me, and the house is finally quiet. It's blissful. 

07/20 When Packages Come

***

Don't you love it when you REALLY need something and you find it on line, you order it and it ACTUALLY comes when it is supposed to?!  In this case it was riding boots for Evie to take to horse camp. We've got a LOT of laundry and packing to do.

07/21 A Bride To Be

***

Don't you love the hope and joy that radiates off a bride-to-be?! This is one of my 4 half-sisters at her bridal shower Saturday. She was glowing. I wish her every happiness.

07/22 No Fuss Pets

***

I've decided this is the way to go.  Bunnies make cute pets, right? Isn't it even better when they live in the backyard and you don't have to nag the kids to feed them or clean the cage? Maybe we give him some carrots from time to time and he'll grow to like and trust us? Okay, so it's not a dog. I know that. But it is allergy free and there are no vet bills. I think I'm going to give it a try. Hopefully we don't get rabies. Name suggestions anyone? I'm thinking Sir-Hops-A-Lot.

**********

I hope you have a good week whatever you are up to. Our week starts out with Ainsley having surgery, a tonsil and adenoid removal. With any luck we won't get turned back (since she had a fever last week). Evie went off to sleep-away horse camp. Adrian is in baseball camp. Hopefully having the big kids occupied will help so I can take care of Ainsley guilt-free while the post-surgical pain is the worst.  Stay tuned for surgical news.

To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

Pre-Op Jitters

You would think after so many surgeries it would get easier. And in some ways it does. Your perspective changes and what once would have been a big deal is just a "little" surgery. I remember when Adrian was 3 and Ainsley was born we were part of co-op preschool and there was a family whose older child needed an adenoidectomy and they made such a big thing about it, not showing up when they were supposed to because it was so hard on the family (and the surgery hadn't even happened yet, this was all pre-surgery jitters.). That same year Ainsley had part of her skull removed and cut into pieces and put back together...twice. I didn't have a lot of sympathy for these people.

Tomorrow Ainsley is going in for her second adenoidectomy. The last time (Feb 2010) the surgeon only removed part of them because we'd heard full removal can cause nasal sounding speech in kids with low tone. They grew back with a vengeance (now you really can't tell it was ever done) so this time he's going to take them all. Since she can't talk I'm trying not to worry about her "speech" this time. The parents I know from the Trach forum who've experienced this effect seem to think it was temporary. In addition the surgeon will be removing her tonsils, and possibly (hopefully) her lingual tonsils, so I'm calling it a triple tonsillectomy.

Before Ainsley was born I'd never had surgery (her c-section is the only one) and neither had Steve or the big kids.  If we hadn't been through what we've been through these past 5+ years would I consider this surgery a big deal? Hard to say. But when I really think about it it does make me feel bad that I no longer consider a week of pain for my child as a big deal, it's just par for the course.

Still, I always feel nervous leading up to a surgery no matter how "small".

Frequently Murphy's Law would have it that Ainsley catches a bug right before said scheduled surgery and we are left wondering whether to reschedule. If surgery dates were easy to come by it wouldn't be such a big deal but the surgeons we use are booked out months ahead and a rescheduled date can mean having surgery at a very non-ideal time of the year. In fact the first time Ainsley was scheduled for a T&A during late summer the surgeon was sick. Then when the rescheduled date came around in the fall she was sick so we reschedule again. Luckily for the 3rd date, though she did get sick (it was winter), she was well enough. But when the surgeon came out of the OR he said he decided they were too small and he didn't remove them.

Then two years later I traveled 2,400 miles to hear from another (top in his field) surgeon that would be the first thing he'd try. Now here we are trying again for a T&A and this time was no exception, thank you Murphy! After months of being well Evie came down with a grossly snotty nose and passed it on to Ainsley. Wednesday she came down with a 103 degree fever. I thought for sure we'd have to reschedule AGAIN but the fever passed by Friday and when I talked to the ENT nurse she said it was our call. A cough would be a deal breaker so we've been watching her like a hawk all day long.  Her temperature is back to normal and so far there is no cough (which is amazing for a trach kid after having any bug). So as of this minute all signs point to go though I worry that the universe is trying to tell me something.

We check in tomorrow at 10:45. Hopefully she'll be cleared for surgery and will come out of the OR without her tonsils, all three sets: pharyngeal (adenoids), palatine (the "normal ones") and lingual (at the base of the tongue where you can't see them.)  A part of me worries that we need these bits of lymphatic tissue so the more time I have to think about it is just more time for me to second guess the thought processes that brought us to this decision 3 years ago. In addition we now know that the biggest obstacle for Ainsley in getting the trach out is obstructive sleep apnea. She needs her trach to sleep. OSA is a common reason that kids need a T&A. Of course they don't have trachs so one could argue that this surgery isn't needed for Ainsley because she doesn't need to breathe through her airway. But, if she wasn't trached she'd have had this surgery ages ago. If we are ever to have any hope of her overcoming the OSA these tonsils have to come out. I know better than to expect miracles and I don't want any of you to think that after the T&A she won't need her trach.......Still, we can hope, just a little, for good things from it...can't we? ....Stay tuned.

Happiness Week 28

I like to get my Monday Happiness Posts done early but it seldom happens. Especially not this one today. I was getting nervous I wouldn't even get it done before it turns into Tuesday. Apparently I've used up 913GB's of space with my photos and videos and had to do some cleanup before I could download this week's pictures. (Kelly I have a disc from your wedding for you.) It's getting a little scary. Every week there are more and more wonderful images to record and remember the days by. I hope when I'm old and gray to sit in my rocker for months and months looking at them non-stop remembering how lucky I was, crying the whole while.

Daily Happiness Photos - Week 28

07/09 Gettin' Nekid

***

It's amazing what a kid can do when she is motivated. Ainsley got herself undressed for the very first time, taking off both her top and bottoms...so she could go in the pool. Little fish, that one. She LOVES it!

07/10 Breaking the Rules With Banana Splits

***

Have you heard of Ryan Roberts, the boy who's inspired thousands of parents all over the world to break the rules with their kids and create a lifelong memory by having banana splits for dinner? Well we did. Thanks Ryan, they were delicious and it was a lot of fun! I hope you were smiling down on us from heaven. 

07/11 Keeping Everybody Happy

***

Hopefully this won't be our only camping this summer. Evie wanted to sleep outside in the backyard. Luckily I waited until our guest showed up before setting up the tent. She was a little nervous so we compromised by setting up the tent in the family room and everybody was happy. Earlier we had a really nice time eating out on the patio with a bottle of wine (the moms not the kids). It was great to see our old friends and neighbors.

07/12 New Eyes

***

I finally got to pick up my new glasses. My old ones, though I loved them, were in bad shape. The coating had peeled so much I could hardly see. I LOVE the new ones. They are made by Friezeframes but they gave me a free snazzy Dior case (it was more compact than the one that came with my frames) and a Chanel case that I LOVE LOVE LOVE for my sunglasses that I ordered today now that it's July and our new insurance started. Ainsley broke my prescription sunglasses years ago and I can't wait to finally have new ones.  I'm so happy that the hunt for eyeware is over!

07/13 A Getaway

***

My birth mom took me on a luxury getaway to the grand and beautiful Tulalip Casino. She treated me to a signature massage at their heavenly T-spa which I SO needed.  I don't get to a spa often, but this one is perfectly tranquil and I can't imagine there being many nicer than this. My masseuse was fantastic and coincidentally also a SN mom. After the spa we had a very nice dinner at the Blackfish Grill with my (half) sisters. All this was covered by comps that she's earned or won so it was nearly FREE. We drank wine, smoked cigarettes and gambled all night. After sleeping in the most blissful bed we got up and spent the day there. Though I admit I'm not a big fan of losing money, so after playing hours of penny slots I decided to go shopping for a bit where I felt my money was better spent. We had a great time!

07/14 Knowing You're Loved (& Missed)

***

Even if you hear the words often, nothing is better than those special moments when you really connect with someone you love and you know without a doubt how much you mean to them. It was so obvious that Ainsley missed me, since she wouldn't let go of my legs for an hour or two when I came home at night. It was so sweet and wonderful and makes me want to leave more often. Maybe we rely on words too often.

07/15 The Perfect Umbrella

***

I love it when form meets function in a perfect way. Who would think an umbrella could be so pretty with all those ruffles?!  Or make a person so happy? I found this hanging in the window of the cutest gift shop (at the Casino) and knew I had to have it! Evie's thrilled because now she can have my old one that she's wanted because it matches her rain boots. On the tag it says: Rainy Days-You should not be sad when it rains but raise an umbrella that points towards the sky and while walking with tip-tap steps through the puddle you imagine all the flowers blooming in the rain.  I can't wait for it to rain, and around here you know it won't be long.

**********

To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.

Happiness Week 27

We had sun this week and it was glorious! We even had sun for the 4th of July which is a rarity around here. Oddly though we had lightning last night and it struck our neighbors tree and a huge branch came down in our yard. They seem to be out of town, so I'm not sure how we are going to deal with the situation, it's still attached to their tree. The neighborhood treasurer is going to e-mail the owner. I just hope it doesn't drag on all week or longer. Unfortunately it fell on a very nice ornamental tree which may have snapped in half (I can't tell because the branch that fell covers it up completely.) Ironically, I'd just been looking at that tree thinking how pretty it was. At least I enjoyed it during it's last days.

My plan for this week was to hit some items on my "bucket list" and enjoy the yard with my kids. This will be a true test of the "happiness mentality" to see if I can still do that with a big tree in the middle of the grass. It's like the proverbial elephant in the room....Hard to ignore.

Daily Happiness Photos - Week 27

07/02 Smelly Game

***

When you have a special child like Ainsley EVERYTHING is a potential source for "therapy". Having a trach messes with your sense of smell because normally you smell as you breathe in through your nose. I think smelling with a trach must be like smelling with a bad cold. In addition, a child who is non-verbal doesn't learn things as quickly because they can't ask you the unending stream of questions about every.single.thing.they.seeorsmell.ortasteor.touch. or hear. So playing this game called "Follow Your Nose" is a great way to talk about and be exposed to lots of smells. Actually Evie & Adrian love it too. But really this was a "therapy" purchase a few years back and we hadn't played it in awhile. It was on my bucket list of things I wanted to get to this summer and today we did it. Even though I was tired and didn't feel like it. And ya know, it was fun!

07/03 The Perfect Rug

***

I love it when things happen naturally with little effort. It seems that when you are looking for something in particular you will never find it. But if you just wait, sometimes the right thing just appears out of seemingly nowhere, like this rug I found at Home Depot while I was looking for something else. I love that Ainsley has a softer place to play on the patio for her kneesies.

07/04 Legal Fireworks

***

It's so much fun to be able to let off fireworks legally. My favorite are the sparklers.

07/05 A Charger for Evie

***

My life strategy is to try to solve the problems that bug me. Like Evie using my computer to charge her IPodTouch every two freakin' seconds. If you can believe it Apple doesn't include one with purchase, only a USB cable! I had Evie spend some gift cards she'd been holding onto to buy this very cool docking station that I found on Amazon. Now she can charge her IPod without disturbing me at the computer. She's happy because it works as speakers and does really cool light shows in sync with the music. I'm happy to have eliminated a frequent source of irritation.

07/06 Wicker Chair

***

The main idea in interior design is to surround yourself with items you love. I found this wicker chair at an antique store many years ago but it was damaged by being left outside. Last week I cleaned it and today I glued the seat back together.  Now it looks perfectly "Shabby Chic" with it's greenish paint that is peeling off in places to reveal the black paint underneath. Steve was hating this chair, but now I think he'll let me keep it and that makes me happy.

 07/07 Croquet

***

We spent the evening playing croquet with my oldest friends. It was wonderful!

07/08 Summer Swimming

***

The kids LOVE swimming even if it is in this little pool. They have SO much fun it really is the highlight of their summer. Ainsley is now big enough and strong enough that with her cap on the trach and some precautions she can go in the pool. It is so wonderful to see her so happy. And I get a little bit of freedom not having to be in there myself. Of course I still have to be right there. She is tall enough to be able to walk in it and with a life jacket and a floaty ring she can even bounce around. It is going to be SO good for her legs! We have secret goals we are working toward and I think this is going to help.

  

**********

To view a slideshow of the entire Happiness Photo Project click here. Confused about what this is or why I'm doing it? Click here for an explanation of what it's all about.