May 28, 2012

Happiness Week 21

Wow, week 21 the year is nearly half over! Where does the time go? Having a special child just means there is that much less time to do the regular things that people do that keep them busy, so I always feel several steps behind. After spending nearly an entire week in Cincinnati(and countless hours planning the trip) I have to wonder if I took all the time I spend scheduling and attending doctor appointments and surgeries, therapy, medical research, suctioning or tube feeding, diapering, positioning, being an advocate, providing or receiving support through the forum, ordering/unpacking/cleaning medical equipment and supplies, coordinating nurse schedules, working on skills like eating/walking/talking, programming AAC devices etc. etc. and even blogging about all this stuff, how many hours that would add up to over the past 5 years? Months? It could be as much as an entire year. It can be draining even if it is all necessary and beneficial.  That's why it's so important to look for the happiness. No matter what your circumstances, the happiness is there, you just have to look for it.

Daily Happiness Photos - Week 21

05/21 Meeting Trach Friends
During our trip to Cincinnati we got to meet some of the friends who we've met in Holland. We understand and support each other and that is invaluable. It's amazing when you meet someone face-to-face for the first time and feel like they are old friends.

05/22 Chipmunks
While trying to make our way to the hospital a lady on the street said to go up the street and to the door past the chipmunks. ??? Okay. We really didn't know what that meant and boy were we surprised to find life-sized statues of the characters from Alvin and the Chipmunks. Even though Ainsley was afraid of them I was happy because I knew my other kids would love seeing pictures of these. One day Ainsley will enjoy seeing the pictures and hearing about how she was afraid of them. It will make a medical trip seem like it was a little more fun. I love how these Children's Hospitals try to make the hospital a fun place for kids. As a parent I find it helps distract me from the sorrow that is everywhere there.

05/23 Being Done
...For now. Having any sort of surgery or procedure planned means that it is hard to just "live your life". You are looking forward to "the day" kind of like the weeks before Christmas or the last day of school. You are on a "countdown". At the point this picture was taken were past the big stuff: the FEES, the chest CT and pulmonary appointment, the triple scope and meeting with all the doctors. It was a relief to be done, even though the news wasn't good and we did still have to stay overnight in the hospital for the impedance probe. I've spent much of the past 5 years on one countdown or another. Every time I'm glad to move on, always hoping it will get us one step closer to "done".

05/24 Zoos
I love animals. I kind of hate that some have to spend their lives in "enclosures" for our entertainment. But I love that zoos exist and give us the opportunity to safely see and appreciate animals with our children. I was glad to be able to take Ainsley someplace fun after all she'd been through this week.

05/25 Home
Traveling with a medically fragile child is tiring. I am so happy to be home. It is where I am happiest.

05/26 Accessibility
This walker will give Ainsley the support she needs to venture out into the world. It wasn't long ago she relied on the sling, now she's sturdy enough to be safe without it. Today she used her walker to go OUTSIDE. She navigated by herself onto the grass and up the hill to watch Evie paint. Then she navigated back down and onto the patio, across the bumpy bit that isn't paved, over the threshold and into the house, and turned around and DID IT AGAIN. BY HERSELF. This is why we bought this house. Accessibility.

05/27 Healthy Treats
Do your kids beg for dessert? I don't like my kids to get too many sweets but if they had their way they'd have dessert everyday. I found key lime yogurt at the grocery store and a new healthy dessert idea was born. "Pie in a Cup". It's fast and it's healthy. I think we are going to be having a lot of these around here.

Ainsley starts outside OT & PT this week. We have an appointment with her local ENT. I will be programming her new AAC device which I am SO excited about! I'll be thinking a lot about Ainsley's upcoming Frontalis Sling surgery, which is scheduled for 6/15. Steve will be settling into his new job in UI for the Halo game where they are expecting him to work 60 hours a week now that I'm home. I hope you have a good week whatever you are doing.

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.

May 26, 2012

Cincinnati 2012 - Zoo, Friends & Flight Home

After being discharged from the hospital following the impedance probe test we made it over to the Cincinnati Zoo.  I'd heard that it is one of the top zoos in the country so I was excited to see it. The hospital gives free tickets to the families of kids. We were only able to be there for a couple hours but still saw most of it.

The historic entrance.

Ainsley checking out one of the elephants.

They have this cool pond with fountain in the center....

....and a train track around it.

I was excited to see some animals I hadn't seen before.

King Penguins.

Polar Bears.

Rhinoceros. It was fascinating to watch it move.


The lions roared for us. Ainsley wasn't sure what to think of that.

Ainsley had fun pressing a penny souvenir.
Us at the rino statues waiting for our shuttle van. It was a hot sunny day.

We met up with my friend Claudia  (from the forum) and her lovely kids for dinner at the hotel restaurant. It was so nice to meet them in person.

Her beautiful daughter Sienna, who was decannulated years ago. She is 6 months younger than Ainsley. Ainsley was a bit fascinated by her and seemed really happy to sit with her and color.

Speaking of friends I forgot to mention that Hope, a blog reader, recognized me while we were at the hospital and stopped me in the halls to introduce herself. It was the first time I'd been recognized out in public like that so I was more than a little surprised. I was so glad she stopped to say hi, I just wish we'd had a chance to chat a bit longer. She is a fellow blog writer and her daughter Ava has mitrochondrial disease and is also a patient of Dr. Cotton. Lucky them, not to have to travel thousands of miles to see him. 

We skyped with the family. Ainsley loved it!

Sheryl and Ainsley slept while I packed up and finished my blog post. Unfortunately Ainsley desatted so much I had to turn off the pulse-ox. I'm hoping she's still recovering from that triple scope. She ought to breathe easier with the larger trach while she sleeps. I'll be keeping a close eye on her.

We got up at 5am. Ugh! Things went smoothly on our way to the airport and we were there plenty early this time. 

On the flight Ainsley was STILL fascinated with the trays. And she learned to take pictures during the flight.

The mountains back in Washington. Home at last. Interestingly did you know that the flight East is nearly an hour faster than the flight West? It has to do with fighting against the wind current.

It was exhausting to keep her entertained for 4 hours.  I tried to get her to nap but of course she didn't fall asleep until we landed. Figures.

She was really glad to get home to her Calico Critters, hammock and other things.

Evie and Adrian made us a special sign. It's nice to be so loved and missed. It's good to be home.

May 25, 2012

We're Home and Safe

.....But too tired to post. I just wanted our family and friends to know we made it home safe from Cincinnati. I'm exhausted but will try to post soon. XOXO

May 24, 2012

Cincinnati 2012 - Day 4 Discharge

Sleeping with your child at the hospital is never a good night's sleep. But at least we were inpatient and I got to try Cincinnati Hospital's infamous "Dirt Cake".

 Way overrated I'd say.

I thought my friend Christy would enjoy hearing that I got the silent treatment all night. Ainsley who is the happiest girl in the world, didn't smile. She pulled me close like she didn't want me to be more than a foot away, but if I got too close then she pushed me away. She wouldn't answer my questions or anything. She was mad at me, clearly. 

We had a funny moment when I asked her if she was mad at me for touching her nose earlier. She wasn't in a playful mood so it made her mad which was kind of cute so I might have done it more than once. So I guess I'd pushed it too far, so then I told her she could touch my nose, and she squeezed it. Then I asked if she felt better and she said yes. Then she did it again a few times and almost smiled. It was hilarious and I laughed out loud. I could tell it made her feel better to get me back. If the nurses heard I'm sure they thought I was crazy.

All night long she kept pointing at her nose. She wasn't her usual self and I was disappointed that the test wouldn't be a typical day for their sample data for the impedance probe that tests for reflux. She also coughed a TON and needed an incredible amount of suctioning. It was tiresome. We stayed a little longer in the morning to try to get a full sized feeding done and then we were done.
Removing the probe.

Though that's what she wanted it does sting to have that tegaderm removed, and it does cause irritation to her face. It left a red mark that hasn't gone away.

That wasn't enough. She was happier but then she wanted the ID band removed.

As soon as she knew she was going home she was happy. And smiley. And her usual self.
She thought these gumballs were balls and insisted on having one.

I was afraid the misery was in part due to the new trach size but it wasn't. Pulling the nasal tube helped with the drooling, the secretions and the suctioning. I had to get orders in case we keep it in, because of our in home nursing. She actually made a lot of vocalizations today with her valve on and I have to wonder if perhaps she needed more airflow from the trach in order to have a strong "voice." I think we'll know better after a few days. Dr. Cotton said he'd leave it up to us to decide.

We waited under the animals before we caught our last shuttle van to the hotel. Ainsley desperately needed a bath. Then we headed to the Cincinnati Zoo for a couple hours before they closed. The hospital gave us free tickets which was really nice. Afterward we had dinner with my friend Claudia from the trach forum and her children. Ainsley and I skyped with the kids and then she crashed and I stayed up to pack. I'll post pictures of the latter half of our day tomorrow.

We get up at 5am to head back home. I am looking forward to getting back to my family and having a chance to process all this information. Right now I need to get to sleep but Ainsley's monitor is alarming constantly. A larger trach should help her night sats, not make them worse. I wouldn't be surprised if this isn't just another way in which she surprises us.

Thanks for the loving comments. It means a lot to me.

May 23, 2012

Cincinnati 2012 - Day 3 Triple Scope

Well, unfortunately my gut was right. We got a lot of information and none of it is encouraging for getting the trach out in the future. Still this medical team's approach is thorough and I feel our trip was worthwhile. In the end I think we will have a better idea than ever of what is going on. They will discuss her case again next week and forward a formal report and recommendation. But their verbal observations today were:

  • Ainsley has multiple areas of obstruction but the primary problem is the supraglottic area of her airway, just above the vocal cords.
  • They also determined that she has a reactive airway. They saw as the exam went on that things looked worse from the contact with the endoscopic camera. 
  • There is a lot of lymphatic tissue surrounding the epiglottis.  They feel this is likely due to pooling of secretions on the area. The area is swollen.
  • They think her arytenoids are twice the size they ought to be. They believe this is a difference in her anatomy. And that may explain why she had difficulty breathing at birth, that they could not pinpoint to a specific problem. So the fact that her vocal cords don't open fully may have to do with the size of her arytenoids. The area could be operated on with an LTP, but there is no guarantee that would get the trach out and in fact would likely leave her lungs more open to aspiration. That can lead to lung disease.
  • Right now her lungs look okay, not worse than in the past but not perfect.
  • Her tonsils were huge and if they were going to do anything they recommended a T&A. This is frustrating because she went in for a T&A years ago, but the tonsils were reduced in size by the time she was in the OR so he left them. She had a partial adenoidectomy, but maybe they grew back.
  • They saw Monday that it was difficult for her to clear fluids from her supraglottic area, again I think largely due to this lymphatic tissue. In past VSS studies she seemed to have a small vallecular space and this could be because of that. Also in the past this area appeared to have cobblestoning, now it would seem that turned into larger lypmh tissue. We will have to see their recommendations about oral feedings. The possible adhesion that they suggested during Monday's FEES turned out to be the lypmhatic tissue. There is no known reason for this.
  • I asked again about Erythomycin. That had been suggested by other trach families to help with inflammation/swelling. Dr. Cotton said they usually only prescribe that for kids that are on the road to decann.
  • Based on what they saw they are actually surprised that she can tolerate the cap. But they also said that science has proven that a bumblebee can't fly. I think their preference would be a speaking valve instead of a cap, which would be okay if we aren't trying to get her ready for decannulation.
  • After everything they saw they felt she should go up a size. So she is trying out a 4.0 size trach. They said we can go back to the 3.5 if we don't like it. They feel she should still be able to vocalize because her trachea is actually good sized, so where the trach sits, is not small. 
  • Her fundoplication is in good shape. There are a few areas to keep an eye on. They are interested to see her impedance probe results. The probe was placed in the OR and we are inpatient in the hospital with the monitor until tomorrow. They will use that information to determine if stomach content is reaching the airway. The GI doc said there is acidic and non-acidic reflux. Ainsley's reflux is non-acidic. They'll give us a recommendation about her Prevacid.  
Now it's all starting to make sense to me. If her arytenoids are too large then that explains why she had trouble breathing at birth and how the vocal cords are moving but not very well. The reactive airway explains why things are always so inconsistent. And maybe even why her progress with capping and eating varies so much and why it takes so long for her to get back to baseline after being ill. I had a few tears but really I'm not too surprised and I'm glad to finally have answers that make some sense.

Here are some pictures from our day:

They gave us a coloring book with stickers to help pass the time.

 She had fun with that but she spent the most time watching Calliou on her IPad. Then she was very miffed when I put it away. This picture cracks me up. It's so Ainsley and a perfect illustration of how she shows her emotions without words.

 They gave her a wand to play with and you can see what she thought of that.

 Then her mood went downhill as soon as the gown went on. I took her back when they put her under.

In recovery. She was pretty miserable. Her two front teeth were a little loose and now they look a little bloody. I think she might lose them soon, but at least they didn't come out in the OR.

 The monitor part of the impedance probe test. I push a button any time "stuff happens".

 A close-up of the probe. It's got a wire in the center that looks like copper.

 She's not too happy. I think these tests are more traumatic than you'd think. The anesthesia makes you feel crummy. And she really just hates the wires, though we were able to convince them she didn't need the monitors and they removed her IV. Her unhappiness is not making for good test data. I'm hoping after a nap she'll wake up and get more active so she's behaving more like "normal" for the test.

I'm hoping tomorrow we can take Ainsley to the zoo to have some fun before we fly home Friday morning.

May 22, 2012

Cincinnati 2012 - Day 2 of Appointments

OMG are we tired. Ainsley's chest CT was this morning at 6:30. Wait was that today? Feels like days ago. Afterward we came back to the room and Ainsley had a nice nap. She needed it.
Earlier she was acting all crazy in that way kids do when they are over tired.

She was playing peek-a-boo in the closet.
We bought her a Magic Coloring Book at the gift shop yesterday. She was such a good girl for her FEES. She's had a blast coloring it today. 
Later she asked to get it out of the suitcase and followed my step by step instructions to get it out.

After napping Ainsley is well rested and back to her smiley self. Having a blast with her new toy, dragging it everywhere.
We had a 3:30 with the Pulmonologist to review the CT results and talk. She was entranced by Curious Geoge Goes to the Doctor (very cute) and that was good because we waited for hours and didn't wrap up until dinner time. They didn't really get to see her active at that point but appointments never go perfectly. He did get to hear her unusual sounding cough. I did like the doctor's way of thinking. He said that if you can hear the obstruction you must be able to see the obstruction. BUT he also said there can be multiple areas of obstruction which of course I already knew. He listened to Ainsley's capped breathing sounds very intently. He will be in the OR tomorrow manipulating her head and neck to see if he can determine the problem area. When he looks in the OR I suspect it will be the vocal cord/glottic area. I have confidence that he'll try his best to pointpoint the problem, I think it's like a puzzle to solve.

The CT of her lungs looked better than they expected. Not perfect but good. Certainly not worse. We'll learn more tomorrow I'm sure.

The other thing he said that was very interesting is that Cincinnati does more airway surgeries in a year than THE ENTIRE REST OF THE COUNTRY COMBINED. WOW! So as I've been saying, if anyone can help us figure this out, this team is the one because they see more complex airways than anyone else.

But Ainsley's airway is complex. I have kind of a sickly feeling. I'm glad we came, but I'm just sensing we are going to come away confirming a lot of what we already knew. But that would be okay. Like in 2008, I just want to know I've done everything I can. After the scope they will give their impressions, but the way the process works is that the entire team meets to discuss their findings and summarizes that into a report and treatment plan. That could take weeks to get.

So we'll be admitted for a reflux test called an impedance probe afterward so I'll be staying with her at the hospital.

On a funny note. After dinner at the horrible cafeteria we headed back to the hotel. On our way we found The Chipmunks. I know Evie and Adrian would get a kick out of seeing these so I took the photo op. But Miss Ainsley thought they were real or something and was terrified!

Look at her trying to run away.

I did get this picture of Ainsley with Sheryl though that turned out great. Ainsley is such a sweetie she smiled when I asked her to, but you can tell by her legs that she was trying to keep as far away from Alvin as possible. 

Stay tuned for tomorrow's news. Thanks for reading and caring.