They Called.

....And the news was not surprising. I'd say Ainsley is now officially a medical enigma (my words not theirs).

Some of the things they thought may be wrong were not. Last week there was mention of Esptein-Barr virus, a possible lymphatic problem, aspiration, a laryngeal cleft. Why they tell you things until they're sure I don't know but the one thing I've learned over this last year and a half is you don't worry until you know for sure you have something to worry about.

Here it is blow by blow, all the results for those of you who like details. (Some info is a repeat of previous posts.)

Chest CT - Revealed Bronchiectasis (Irreversible dilatation of part of the bronchial tree. Involved bronchi are dilated, inflamed, and easily collapsible, resulting in airflow obstruction and impaired clearance of secretions). She seems to be doing well breathing despite having this at level 2 on a scale of 1-10. It's possible it could be congenital or caused by past trauma. Her doctors here will get the report and follow her for this condition but there is no treatment and we have been advised there is nothing we should be doing differently. We will be watching for signs of increased work of breathing which could indicate the condition has worsened. I don't expect that to happen.

The laryngoscopy and bronchoscopy showed she still has massive swelling of the false vocal cords/folds and cobblestoning (bumpiness) on her epiglottis. They also found some irregularities (bumpiness) of the tissue in her bronchi. All the tissue biopsies were negative so that ruled out Epstein Barr or a lymphatic problem. They checked for a cleft in her larynx, a very rare condition but one photo from the Seattle ENT seemed to show she had one (it would have explained some things) but there was NOT one. They saw true vocal cords. It's tough to see movement because of the massive swelling of the false cords but there is no suspicion of paralysis.

PMV use- They don't really think she should use the PMV because she has to force the air out to exhale. That makes sense to me but at the same time we want her to be able to vocalize. Perhaps we'll use the modified one for awhile then try the non-modified one when she seems to be having an easier time. How she does really does seem to vary from day to day. We have always taken it off when it seems that she's having a hard time.

The endoscopy showed her GI system is beautiful. No problems other than a small hernia which could cause/allow reflux. They would not treat it as it is right now. The gastroenterologist did recommend staying on the reflux meds. (Although previous PH probe results while she was NOT on meds showed no increase in PH).

The lung wash was unenlightening, no bugs our critters to suggest aspiration or other problems.

The FEES (dye swallow study with fiber-optic camera placed through the nose to view actual swallows) surprisingly looked pretty good. It showed that she has normal sensation at the back of her throat (really good) and that she does what she is supposed to. There is a small amount of fluids getting to the airway when they should not (it seems she's allowing some to slip back in her throat before she swallows, hopefully this will improve with practice) but because of the swelling she is not actually aspirating (the swelling is essentially protecting her airway). She does better with thick than thin liquids. I've often wondered if her swallow function might improve if the swelling was reduced. They said probably not, that her swallow is actually pretty good, it's more learning how to control the food/liquid. They want me to continue feeding her just a few spoonfuls of food to keep her interested in eating but not to try to give her meals by mouth. I think that makes sense. I've said all along that I don't want to try to get her to eat until I know it's really safe (until a swallow study shows no fluid in that part of the airway.) They didn't really see a substantial amount of saliva above the airway that would indicate aspiration of saliva.

Feeding Consult- The feeding team was impressed with how well she did (remember she was hungry so she ate.) They were really glad that we are doing the home-blended formula (food) and would have suggested the same if I had not already started it. They suggested making the formula even thicker and giving it with a syringe. I may well try that, they are going to give me a recipe. I'm still in the process of tinkering with her feedings anyway. They want her to gain a little weight. I have to say she looks a little chubbier just in the last few days. It helps not to be NPO for anesthesia.

I had some questions about the impedance probe results and what that means for the reflux, so they're going to get back to me on that.

They assured me that I've done a great job and that despite how "bad" things look for Ainsley on paper she's really doing remarkably well and that is owed to the care she's receiving. They said that there is nothing at all that we should do differently. They would be happy to see Ainsley again in 6-12 months if we want to bring her there.

Unfortunately even though no news is good news (in a way) it does leave us at a loss for how to get this darn swelling to go away! At this point we have to just be satisfied that we've done everything we can and just enjoy Ainsley for who she is. (Of course those of you who know me know I won't give up and will always be thinking of what we could do that might help her.)

Ainsley Plays With Giraffe Toy & Cool Beans

Putting blocks into the giraffe.


Playing with beans. Makin' a mess for mama.


Using her pincer grasp!

Today was a great day for Ainsley. She surprised me by making a huge developmental gain. I put her in the Bumbo chair and put the giraffe toy between her legs and a bucket of blocks next to her. I'd tried this with her in the past with much less success. This time she was able to lean over, pick up the blocks from the bucket and reach over and put them in the giraffe all by herself! She did one after another and then even reached into the giraffe to pull them back out. I'm sure it sounds simple and it is. But it requires understanding of what has to happen, a desire to want it to happen, the motor skills to execute it and the patience to persist when it doesn't come easily. Really Steve and I couldn't be more proud!

Earlier today I had her in the highchair playing with her tub of pinto beans while I was gathering pictures for Ann for the trach forum conference slide show. This is an activity that was recommended by her therapists (I did not come up with it on my own so don't sass me about making problems for myself.). The idea is to get her to immerse her hands in the beans to reduce tactile defensiveness. We have some animals that we hide in them (yes that's a pig butt you see) to try to encourage her to put her hands down inside. I have questioned the wisdom of giving an entire tub of thousands of beans to a 1 1/2 year old. Steve can barely stand it. It's kind of funny, actually. She usually just likes to swish her hands in the beans and send them flying, inspect the beans (using a pincer grasp, that's new too, yea!) occasionally pulling out an animal but today we moved on to DUMP the beans. Luckily I was right there and she's a little slow so I was able to stop her before the entire contents spilled to the floor, instead it was only about half. Still it's a job sweeping up hundreds of beans, but I do love that it keeps her happily busy for quite awhile (the fact that it counts as a therapy activity is a bonus). I'm not sure if this dumping skill is something she's going to start trying with other stuff. I'm going to have to keep a close eye on her.

Ainsley Joins the Pickle Club

Ainsley's First Pickle

We have an ongoing debate over the deliciousness of pickles. Steve hates pickles and I love them. Evie's loved pickles since the first time she had one at age 1 on Grandpa David's birthday at the pub in Issaquah. Adrian was late to join the pickle club. Only deciding he likes pickles after a visit to Grandma's a month or so ago. Ainsley, it looks like, is going to be a pickle lover. For a girl who doesn't really eat she did pretty well putting it in her mouth. I'm pretty pleased about this. It's looking like the whole family is converted except Steve who never will. It was cute Evie and Adrian tryed the logic we use on them. "How do you KNOW you don't like it if you won't try it?!" Steve reminded Evie that he ate a pickle just for her on her birthday and he still didn't like it. It's funny when you hear your own words come out of your kids mouths.

The Quick Recap of Our Cincinnati Trip

Read previous blog posts for more details but the quick recap of the trip is this. After the initial meeting with the physicians (including Dr. Cotton) I was disappointed. Mostly because I'd let my fantasies get the better of me and had imagined that A) everything was magically better since she'd not been throwing up and our ENT thought the swelling was from reflux B) that doctor Cotton's team would immediately know what the problem was. - Well Ainsley is way more medically complex than that so I really should have known better.

Wednesday Ainsley had an impedance probe placed to measure for reflux for 18 hours. Results will be available next week. Thursday she had a FEES with an ENT team and then we had a full feeding team consultation. Dr. Cotton's office is going to pull all the information from all the tests, the chest CT, lung wash, biopsies and scopes together to come up with a plan for us late next week. I'll let everyone know what they say as soon as I know.

All in all I was very glad we went. It was tough but I feel like even if there is not much information gained, that in itself is good information. To know there is nothing else I could be doing. Hearing the best airway doctor in the world tell me she's not getting the trach out any time soon was hard but it's better to know that than to have unrealistic hope. I can stop worrying that every time she vomits it's wrecking her airway and that every sound she makes is a sign of improvement that might mean decannulation.

Ainsley has started doing some amazing things, just during this trip. For a girl with developmental delays it is huge: clapping, eating several tablespoons of baby food, rolling over, hitting her smiley toy hard enough to make it squeak, holding out her arms when she wants to be picked up. It feels great. I'm hoping I can start to relax and come to peace with where we are, now that we are back. And its a gorgeous day. It couldn't be more beautiful here in Seattle today. It feels like a fresh start.

We're Home!

Waiting for eggs benedict.


One of several cool old paintings.


The packing, eesh! Thank goodness Joanne's an expert packer. It really helped.


Look at all that stuff!


Can you believe Rock got it on the cart?!


The chandelier that captivated Ainsley while we waited in the lobby for the shuttle.

Another milestone. Ainsley was finally able to make the smiley mirror nose squeak!

Proctor and Gamble. I was surprised at the interesting architecture. It's looks old but is from the 1980's.

Downtown Cincinnati.

So much rain it felt like home. And the Dixie Highway.

The latch on our overhead luggage bin was broken(I secretly think our abundance of carry-on luggage and the portable oxygen did it). They had to call maintenance to fix it before the plane could leave.

Ainsley during takeoff. Curious but well behaved and happier than me.

Kentucky and some sort of factory.

She slept so long and heavy it was great. Except that we were crammed on an airplane and I had to pee.

Ainsley developed more sophisticated taste on this trip. She's moved on from beer to wine!

Patty-cake and this little piggie.

Almost home. Flying Over Our House. Downtown Seattle is next to the water.

Reunited!

Home at last! And the weather is beautiful even at dusk!

Today we finally got to eat at the hotel restaurant. Joanne finally got to have the eggs benedict she'd been looking forward to all week, after quite a long wait since they'd just thrown out the Hollandaise sauce and had to remake it for us. The restaurant was nice. The hotel was built in 1924 and has operated as a hotel that entire time. They had some great paintings. My father, Todd, who's an artist would have loved it. We have done nothing outside of the hospital and hotel the entire trip. All of our sight-seeing was done in the shuttle van to the airport. We saw Proctor & Gamble the Cincinnati Reds ballfield, signs to the Dixie Highway. Did I really go that far away?

Even today, our free day I thought perhaps we'd get to do something fun but not. It took the entire rest of the day to pack. I couldn't believe the bellhop, Rock, was able to get all our luggage onto the cart. He helped me by calling maid service and bringing some things we had left over to my friend Suzanne's room. What a guy!

As we waited for an hour in the lobby Ainsley was finally able to squeak the nose on her smiley face mirror and was fascinated by the chandelier overhead.

The flight was fine. Ainsley again was very well behaved. No decannulations this time. She slept so long and so heavily that I was actually worried but it was nothing (other than that after a couple hours I really needed to pee). She played finger games with grandma and played with toys and gave lots of smiles. It was fun to reunite with the kids and Steve at the airport. We got some late night Thai food and a family movie (which solved my sleeping problem very quickly). We're glad to be home.

It's Over....Almost

I'm ready to be wheeled away for scopes!


Testing For Wire Placement With Firetruck X-Ray


Impedance Probe Test - And Eating!


Impressing the Feeding Therapists


Saying Goodbye to Children's Cincinnati


More Eating!


Almost Rolling Off the Bed!

What a roller coaster of a week! I'm surviving on very little sleep and have started to feel pretty spacey. I never really adjusted to the 3 hour time difference so at least it should be easier to get back in the swing of things when I get home tomorrow. It was hard to get up this morning at 6:30am after waking up several times a night for the third night in a row to stop feedings in preparation for a procedure. After I got out of the shower I discovered they have no hairdryers in the room like they do in Seattle so I had an au-natural hair day. Not good considering I'm overdue for a cut. I do feel better now than I did yesterday (even if I am tired and having a bad hair day) after the initial disappointment of the scope that showed swelling. I really had thought it would be better.

Yesterday Ainsley had the impedance probe placed to monitor for reflux. The probe was placed about 1:00 and she took a few hours to console. It brought back many memories of the 9 months she had the NG tube. I even got to help replace her dressings just for old-times-sake. They took an x-ray to check placement of the wire with a firetruck x-ray machine. Cute but Ainsley couldn't have cared less. Of course Joanne got pictures since Tom is a firefighter she knew he and his buddies will get a kick out of it. When we got back Ainsley was tired but later on I tried to make the most of the opportunity to get some data, and woke her up to try to get her to play on her tummy, sit in the highchair and......eat (So all that could be recorded for the test. The more data the better.) Wow was that a surprise! I guess hunger plays a large role in her feeding issues because she ate like I've never seen her eat! She had rice and milk (ate it all), peas (gagged but still kept eating), home-blended formula, and vanilla pudding (liked that more than in the past when she'd tried it.) I would guess she ate about 4 tbsp of food. For her that is about twice as much as she's ever eaten. What was most remarkable was that she opened her mouth eagerly and quickly ate it. None of the swishing it around like usual. Of course it wasn't perfect eating, rather like when you start to feed a newborn but a huge improvement over what she's done in the past. Then.....

We move on to the ENT clinic for the FEES. It was a large team of very nice doctors and nurses. They had me hold her arms in the exam chair while they inserted a fiber optic scope through her left nare so they could watch her swallow with the camera. She swallowed right away, there was no problem at all getting her to do her part like we'd had in multiple prior swallow studies. They added green food coloring to the food and you could see it go down and pool a bit on the swollen airway tissue. So the conclusion is that she would be aspirating if the swelling were not present. Not good. But also not surprising. She seemed to do better with thick rather than thin liquids. That's good information. She seems to have normal sensation and reflexes as far as swallowing so that is really good. The doctor thought as her difficulties are in controlling the food in her mouth prior to swallowing. So that may improve with time just like the rest of her motor skills. With all the swelling it's hard to know if there may be an anatomical abnormality, hopefully not. I hope to get an overview of their conclusions next week. But at the end the head doctor said to continue feeding so she doesn't lose the desire to try to eat but make sure its pleasant. We already knew that but it's good confirmation of my approach.

We killed an hour and proceeded to our second appointment. A consultation with the feeding team (nurse, speech therapist, nutritionist, geneticist.) where they asked many many questions about her feeding. We put her in a high chair, and again SHE ATE! She very much liked her new friends and wouldn't stop smiling and looking at them. They approved of her home-blended formula but suggested boosting calories with Resource Just For Kids and perhaps making it even thicker and using a syringe. They liked what I told them about our home therapy. I finally got someone to see what I was talking about with Ainsley's tongue. She doesn't ever stick it out beyond her lips. I got some good OT tips to help with that which may help make it easier for her to eat when she has better tongue control. I see a twirling lollipops in Ainsley's future.

After these appointments I was able to find my friend Suzanne from the trach forum. It was really great to meet her in person even though it was an awkward time to do it, since her son was in surgery for an LTP. Still I hope my presence helped pass some of the time while they waited. It brought back memories of Ainsley's cranial surgeries. I was a little disappointed that Ainsley and I didn't get to meet her son Parker but this week went by so quickly. There were others from the trach forum here, that I would have liked to have met but there just wasn't time. As it is I'm not sure how I'm going to get packed.

When we got back to the room I fed Ainsley by mouth again, and by this time she was so hungry she was eating greedily. She actually lunged for the spoon repeatedly and she completely closed her mouth around it (maybe it's a magic spoon, I'm bringing it home). So I hope she'll continue to eat after I resume her normal feeding schedule. It does make me question everything we're doing. Clearly the one thing that has changed that could cause such massive improvement in her eating skills over the last 4 days is that she's HUNGRY. At the very least it gives me hope that she will get there one day.

I left her on the bed with her head toward the pillow for a nap after having such a long day and TWICE she moved completely sideways. Once she even rolled onto her back. Luckily she didn't roll off the bed. Look out!

All in all I'm glad we came. I think things will turn around for Ainsley even if it is slower than I would like. These small accomplishments that Ainsley has made this week that others take for granted in their children everyday like clapping, taking a few bites of food, or rolling over, they give so much hope to us for her future. We will love her no matter but it would be so nice to see her path in life get a little easier. We are looking forward to coming home.

We're wiped!

Ainsley was very cranky and tired. And so am I come to think of it. We waited in recovery for over 3 hours for a room. Actually for a bed. They had the room but no crib so we just finished up all the paperwork, answered the nurses questions and talked to the gastroenterology nurse so I just had my lunch at 6:00pm. We're in A3North 316 (floor 3 room 16). Suzanne, we'll be discharged tomorrow at 7:30am and go for the FEES and a feeding evaluation. If I don't see or hear from you before then I'll check around for you tomorrow during Parker's surgery. We'll also be at the Vernon Manor Thursday evening and Friday morning.