Apr 30, 2008

Ainsley Fell Off the Bed

Well last night we hit another milestone, literally, on the floor. It's not normally something you're happy about but in a way we are. Finally after a year and a half its no longer safe to lay Ainsley on the bed. Last night I layed her on her tummy across the foot of Evie's bed while I tucked her into bed. 10 seconds after I sat down I hear a loud thud on the floor. She had pushed herself up into a frog sit and fell over backward onto her back onto the floor. Luckily Evie's bed is pretty low. Still, she was pretty shook up. This is the first time she has ever fallen over and hurt herself. Even when she sits there have always been pillows to cushion her fall so she's come to expect to be safe and thinks its fun to fall over, which is not really good. So maybe its a good thing it happened. And now we know so we'll put her on the floor during goodnight time.

Apr 29, 2008

Another Death of a Trach Child

You may recall several weeks ago I wrote about a boy from our trach support group who passed away unexpectedly in the night while recovering from the flu. A couple of weeks ago another boy passed away while the parents drove him to the hospital after he had some unexplained stomach pain. And yesterday a third mom from our trach forum wrote in to say that her dear friends son passed away unexpectedly in his sleep. He too had a trach and CP just like her daughter. My heart goes out to these grieving families. And I can't help but be shocked and a little scared by these unexpected deaths. Having a child with an artificial airway is risky, we've always known that, but we've come to feel pretty safe over time. The mom from the trach forum reminded us to hug our babies extra tight last night. And its a good reminder to us all to appreciate our loved ones while they are here with us. And to be thankful for our good health every day. Whether you have a trach or not.

Apr 24, 2008

Impedance Probe Results Are In

We got the call from Cincinnati yesterday with the impedance probe test details I requested. While her acid levels were normal and there was no outward evidence of reflux (pain or discomfort, spit-up, vomiting etc.) the probe measured that there was 157 episodes of reflux during the 18 hour test. 39 times the stomach contents made it up to the upper part of the esophagus or maybe even the airway. 85% of the time it correlated with coughing. Probably another 5-10% of the time I couldn't record the coughing quick enough on the machine. So basically the coughing and the reflux happen together almost all of the time. Which is pretty much what I've been saying all along.

After discussing it at length with friends on the trach forum and with Steve after dinner we've come to some conclusions about what this information might tell us and where we go from here.

Here's the question: Are the secretions irritating her and causing her to cough, causing the pressure in the stomach to force up the food, IE. reflux? Or, is she coughing because reflux is irritating her, and then as a result she coughs up secretions. It's the chicken or the egg thing. Why does it matter? Because it would really help to know what is causing the problem to help decide how to treat it. But unfortunately there isn't really any way to know. Steve and I agree we think it's most likely that the coughing is the real problem. Steve's logic is that if the reflux was causing the coughing there would be more incidents of reflux happening that didn't trigger a cough. Makes sense to me. I've requested the full data from the test so I can analyze it closer but it will take 4-6 weeks to arrive.

The other thing is her esophagus looks beautiful. There is no damage at all to it from the reflux so one might question why if the reflux is causing the airway swelling there are no signs of damage to the esophagus. That's a damn good question. And since there is no damage to the esophagus there is no reason to treat the reflux with anything more than the reflux medicine (Prevacid Solutab 15mg 1x day) that she's already on UNLESS we are hoping it will resolve her airway problem.

The gastroenterologist recommends doing nothing and hoping she outgrows it. But IF we are eagerly pursuing decannulation then he says she should get a nissen fundoplication or she may aspirate stomach content. They would make an incision and wrap part of the stomach around the esophagus to keep the stomach contents from going up the esophagus. Here's a link to more info about this surgery: http://en.wikipedia.org/wiki/Nissen_fundoplication Ainsley has a small hiatal hernia http://en.wikipedia.org/wiki/Hiatus_hernia in addition to the reflux which I believe was also caused by all the coughing which in turn makes it more likely that she would reflux. There are the obvious surgical risks, but also there can be problems associated with them such as reduced stomach capacity, retching, gastric dumping syndrome, or failure (it comes loose and the surgery has to be repeated). So that is why he is not recommending she get one.

The airway clinic thinks it may be the answer to her problems but doesn't know for sure and also cautions that there can be undesirable side effects.

Where does this leave us? Uncertain since the surgery may or may not fix the airway swelling. We've decided to try a few other things before surgery. We're going to try giving her some over the counter pain medicine and allergy (even though she doesn't have allergies) meds to see if it can reduce the amount of coughing and secretions she has. My theory is that she coughs because her airway is uncomfortable like when you have cold and have been coughing a lot. Her vocal cords are touching because of the swelling which makes them susceptible to irritation from everything from coughing, vocalizing, aspiration etc. The more she coughs the more irritated they are and the more secretions the swollen tissue creates. So long as the cords are touching they are highly vulnerable to irritation. This causes a viscous cycle. The hope is the meds might help break the cycle. This is all just my theory and may not work at all.

So our other thought is this: We've had pretty good success on the pureed diet. The vomiting virtually stopped. So if the meds don't work we will thicken her tube feedings even more in the hope that will help keep it in the stomach. We'll have to administer it via syringe instead of gravity because it'll be too thick otherwise. And we are also going to try to eliminate the night time continuous drip feedings so she's not getting thin liquids while laying down. But the doctors are NOT recommending that. They say it usually helps to go with a continuous drip day and night. We tried that when she was a baby and it actually seemed worse. Perhaps because there was always something in the stomach to be vomited out. It will be tricky to make sure she gets enough calories during the day but got her calorie, fat, protein, water needs from the dietitian today. Since there is no outward evidence of reflux the only way we'll know if this is helping is if we start to hear more sounds from Ainsley because as the swelling decreases it will allow more air through the vocal cords and therefore we'll hear more sound.

If neither of those things work then we'll probably be looking for the best surgeon to perform the surgery here in Seattle.

Apr 17, 2008

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.)

Apr 16, 2008

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.

Apr 13, 2008

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.

Apr 12, 2008

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.

Apr 11, 2008

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.


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.

Apr 10, 2008

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.

Apr 9, 2008

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.

I'm Trying Not To Be Discouraged

We are in the surgery waiting area waiting for Ainsley to go to recovery. Thank goodness for Joanne's laptop. We met with all three doctors just now and unfortunately the news is not good. I guess it's not particularly surprising either. They see abnormalities of the tissue in her airway, most notably swelling. They did not find anything revealing although found a small degree of tracheal and bronchial malasia. Nothing major. They seem some nodules that indicate a possible lymphatic issue so they took multiple biopsy samples and we will have to wait for results. She got a 3.5 Tracho (sp?) trach. They evaluated placement so it should fit fine. Hopefully that will help reduce the amount of suctioning needs but we will have to see. Tomorrow she has a fees study to see if she has aspiration of saliva and/or food. That may be the issue but we really won't know right away. They are going to review all of the pieces of information after the test results come back and put together a diagnosis next week. It is unlikely that there will be a quick fix. At least I can be satisfied that I took her to the best place in the world for her condition. Even if they can't help her, I know now I've done everything I can. I will post again if we get new information. She had an impedence probe placed today so we will be staying overnight at the hospital. Otherwise staying at the Vernon Manor.

Suzanne, I hope you have a good flight. Let me know when would be a good time to connect.

Apr 8, 2008

The Good and The Bad

I thought today would be easy, no big deal. We were going for a chest CT for the pulmonary department. Since she'd never really seen a pulmonologist I assumed she didn't need one. Ainsley's sats are always 98-100% and she's never had pneumonia or any trouble breathing (obviously there is the upper airway swelling, but once that was bypassed with the trach she never needed ventilator support or oxygen other than when she was sick with RSV.) so I assumed her lungs were fine. Her team of doctors in Seattle consulted with a pulmonologist but nothing of note was found. The CT today revealed that she seems to have bronchiectasis. Here's a link: http://en.wikipedia.org/wiki/Bronchiectasis I think we'll know more after the scopes tomorrow but it was a complete shock to me. The most likely cause is aspiration. It makes me concerned that it could have been caused by aspiration of foods from trying to feed her. My instincts told me after our September swallow study that I should not feed her but the doctors assured me that it appeared safe despite some contradictory information from the swallow study. (Too long a story to go into right now.) I stopped feeding therapy immediately and only resumed feeding after conducting my own dye tests at home and when I did I proceeded slowly. It seemed to be okay but now I wish I'd listened to my instinct. Perhaps it is aspiration of saliva not the food. It may be difficult to determine. And we may need to wait until we get further test results later in the week. Of course I'll let everyone know as soon as I can. I'm trying to have a positive outlook and be happy that we caught it now before she had more extensive damage to her lungs. So even though it's bad news it really is good.... That we came here and found it before it was too late.

Today we had quite a wait. The fun thing is that to pass the time we played patty-cake with Ainsley. We play at clapping regularly but it's taken a really long time just to get her to straighten both her hands. She has so much fun clapping but has never tried to clap by herself. Today, after I stopped clapping her hands together, she clapped them together herself for the first time! What an amazing change out of nowhere. So that is the good.

That, and we ran into a friend from the trach forum and got a picture.

Tomorrow is going to be a super busy day she goes under anesthesia in the morning for the scopes, we get to meet Dr. Cotton and Ainsley will be admitted to the hospital so it could be super busy but I will try to post.

Apr 7, 2008

Our Pre-op Appointment

Today we had just one appointment at Children's, the pre-op anesthesia consult. We oriented ourselves to the hospital so we know where each of the buildings, the cafeteria and gift shop are. Check in was fast and easy. Seattle Children's could take some notes. It's done in each department instead of waiting in one giant line for all specialties. We were a half hour early and they took us right back. Again, I was surprised. What?! No waiting for an hour (30 minutes past our appointment time). We didn't just meet with the nurse for the routine questions like we would in Seattle. We met with the HEAD of anesthesiology! And he spent about 20 minutes going over Ainsley's medical history just to make sure it was completely accurate before things get started this week. He went on and on so much that we fell asleep. (Ha, ha. Just kidding. I closed my eyes as usual. Ainsley really was asleep.) Wow! I was impressed. And he was so nice! I think this is a sign of good things to come.

Strolling through the halls we saw some interesting things. Like a collection of antique baby feeders (i.e. baby bottles). I'd always wondered how they fed a baby that couldn't breastfeed in the days before plastic. Now I know. One of life's many mysteries answered.

At the gift shop we gathered some interesting party ideas. That "sundae" is made of Tootsie Pops.

We went to a far off corner of the cafeteria near the windows to eat and give Ainsley a tube feeding. Then I noticed that the only other people there were giving a tube feeding to their daughter too so we struck up a conversation. After a few minutes I noticed she had a trach as well. We traded tips. They were great people and I hope they'll join the tracheostomy.com forum. I tried to give them our blog address so I hope they'll find it. Their daughter also does not have a clear diagnosis, and she's a teenager. I sure hope we get some answers before then. This couple's daughter also sees Dr. Cotton. They said they've met people traveling from all over the world to see him here. How amazing that we are here. I feel really lucky.

We made it to the grocery store and have settled in with a glass of wine. I'm loving using Joanne's laptop. I'll need to get to bed early tonight since I have to wake up twice to switch off Ainsley's feedings in preparation for her anesthesia tomorrow. Will post again tomorrow as soon as there is a chance.

Apr 6, 2008

We Made It!

Travel is not what it used to be. Security. Oh my gosh. I hadn't flown since 9/11 so I really had no idea. And I've never flown with a child or baby. We were lucky enough to have a really great guy helping us with our bags. He got everything onto a cart because we had more stuff than we could possibly carry, and waited with us while we checked in which took awhile. Then he helped us through the disabled security gate so we were allowed us to cut to the front of the line. That was great but also kind of embarrassing. You could see people trying to figure out what was going on with us, which is often the case because people tend not to think of babies as having disabilities. Anyway... They spent a full 10 minutes reviewing all our stuff on the x-ray machine, which is a long time when the line isn't moving. They even had a letter from our pediatrician outlining all the equipment and supplies but they still questioned each piece. They were fairly nice about it. It was pretty funny to me to see them all crowded around the monitor trying to figure out what they were looking at. Its commonplace to me now. You could tell they'd never seen this much medical equipment before. Ainsley was allowed to stay in the stroller so they used these white circles to swab her hands and feet and test her for explosives! Just in case I was planning to blow up my baby! Our awesome baggage guy then walked us all the way to the end of the airport. Our gate was the very farthest. What a guy. And he was just so nice.

Even though we made it to the gate we now had to figure out how to get all this stuff on the plane. The Delta guy was worried but nice about it and of course the flight was overbooked so there was no extra seat to use. That was okay because it was fine having Ainsley on my lap, she was really great. The worst part was trying to fit the suction machine between my legs with the diaper bag at my feet. When I had to go to the bathroom it was a challenge to get out. Joanne learned how to suction so I could go pee. She did great! We did have a scare when we traded off somehow the velcro on Ainsley's trach tie came undone. I noticed it because something sounded weird. When I saw that her tie was open I tried to tighten it but it wasn't fitting. That didn't make sense and even though I couldn't see her very well because it was so crowded I could tell that she looked distressed and was actually starting to turn blue. Finally I looked under the trach and could see that 3/4 of the cannula was out of place. Thank God it didn't come out completely or it would have turned into an ugly scene. I was able to slide it back in and reattach the velcro tie and she pinked up right away but was still shook up for awhile. Poor girl. It scared us both. Of course our first accidental decann would happen on an airplane. Thank God I noticed. With the sound of the engine it would be easy to ignore the "strange sound".

The flight attendants helped us carry our "carry-ons" to baggage claim to pick up yet more luggage. Again people being really nice and helpful. Then we caught a shuttle out to the Vernon Manor. It's a nice place. I was thrilled to find that I'd been upgraded to an apartment suite. So I have a full kitchen with a full size refrigerator, a microwave, stove and dishwasher! It'll make it so much easier to make her blended formula. It has a dining room, living room and large walk in closet that's big enough to fit our 3 suitcases, stroller, carseat, oxygen concentrator & medical supplies with room to spare. And my friend Tina sent a beautiful boquet of flowers so it smells great. It was late so we ordered a pizza from Adriatico's (really good) and had a much needed glass of wine. Not a bad way to spend your 40th birthday. Now I'm going to get some much needed sleep.

Apr 5, 2008

I'm nervous!

I'm looking at the enormous pile on the dining room table wondering how I'm ever going to lug it all through the airport to a hotel 2000 miles away tomorrow. It'll be an adventure. A friend on the trach forum was just telling us about her trip last week to Cincinnati. She had to sprint with a stranger carrying her carseat to the gate. Oh gosh! Please don't let that be me tomorrow. Actually she is going to be there on Thursday. Her son is getting his LTP surgery that day. I am so excited to meet her in person!

Today Ainsley was making sounds with NO PMV! I can't believe it and am so excited to get the results of this scope and see if that swelling has gone down. Of course I'll post as soon as I know but that appointment isn't until Wednesday. Only a few more minutes are left of my 30's. I think I need a drink.

Apr 3, 2008

She Rolled!

This morning she rolled from her tummy to her back! This time I saw the whole thing and I'd have to say it looked intentional. Wow!

Apr 2, 2008

Oh My!

Holy cow! (OK, you know that's not really the word I used but I'm trying to keep it clean.) Ainsley just lifted herself up onto all fours and then lifted one of her arms up in the air! Meaning she was supporting her full body weight on three points. That is truly amazing and we'd better watch out now!

Apr 1, 2008

Two Weeks Out of the Brace....and Moving!

So it's only been two weeks that Ainsley's be out of the brace during the days but we're already seeing a huge change in the amount she is trying to move. It'll still take a bit for the muscles to regain strength but she is TRYING and that is so great to see. She's been scooting her legs up underneath herself and trying to push up into a crawling position. When we put her in the crib we find her scooted down to the bottom playing with the box of baby wipes. I almost think she's scooting down there just to get the wipes. It's happened about 10 times now. But maybe she's just bored and that's all there is to play with. When we leave her on the floor in the living room and come back we find her several feet away. She wiggles and pushes herself up enough that it's scooting her around. Yesterday she even rolled over. So we're getting to the point where we have to keep a closer eye on her. Maybe it's even almost time to bring out the pack-n-play.