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.

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.

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.

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.

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.

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!

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!