Happiness Week 22

It is good to be home and get back to life as usual. I'm digesting the news from our Cincinnati Trip and walking the fine line between acceptance and fighting for what I believe is best for my child. Years ago I decided to accept that fact that Ainsley is always going to have challenges, may always require my care, and may never be able to get rid of the trach. And even though I am okay with that (because I have to be, the alternative is to suffer in unhappiness) I still feel the need to look at our options and get her the best care possible.

A dear friend from the trach forum contacted me and shared with me that their doctors (including Dr. Cotton) didn't think her son would ever speak and maybe never get his trach out because he was born without vocal cords and that area was pinched nearly shut, a very rare birth defect. In addition he had a reactive airway. Her persistence and willingness to do whatever it took(combined with the doctors' expertise) got them there and today he is living trach free and talking up a storm. Of course even when two kids share some similarities they are different cases. It does show, however, that doctors don't always have the answers and sometimes things turn out better than they expect. I am a practical person. I like truth. Give me real hope over false hope, I have no use for that. How can you tell the difference? Well that is the tricky bit now isn't it?! I wouldn't say I have hope so much as I am willing to take steps as if I do.

Where we are at right now is waiting for the Cincinnati ENT team to call with their final recommendations. We rescheduled our appointment with our local ENT for 6/8. He was nice enough to agree to see us on a day he doesn't normally see patients. He's otherwise booked out for months. Doctor Cotton mentioned a T&A surgery of not just the normal tonsils/adenoids, but I believe the lingual tonsils as well. I think that is the first thing to pursue, and then we'll be back to our favorite game of waiting. It should help her airway, just probably not enough to eliminate the need for a trach. If nothing else perhaps it would help her swallow, which really is the main reason the surgeons don't want to do surgery, because she could aspirate and that would be harmful to her lungs. But it may not. One step at a time.

The GI team from Cincinnati called. The impedance probe reports came in and Ainsley does not have reflux. Not only was it not acidic, she only had 5 recorded events and NONE of them went up to the airway. That means her Nissen Fundoplication is intact, just like the endoscopy seemed to show. That is good but also bad because it means remaining airway swelling is likely NOT from reflux. That leaves us still wondering about the cause.

In addition to sorting out her airway situation we have pre-op appointments for her eyelid surgery this week. I am nervous.  In addition to the medical stuff it is the end of baseball season for Adrian. Evie has her ballet recital, and she is performing a play with her Seattle friends. In addition we have several play dates and a birthday party or two. Whatever you have going on this week, I hope it's more relaxing than my week will be.

Daily Happiness Photos - Week 22

05/28 Having A Swing Set

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Yesterday we were in Seattle at a friend's house, an old charmer with a beautiful garden full of fruits, veggies and herbs. It made me a bit homesick for our old house. As beautiful as our house is I LOVE old houses. One thing that we didn't have at our old old house is a swing set. Most city yards don't. So rather than feel sad about what we've given up I am choosing to focus on what we've gained. I am so grateful that my kids have a swing set that they can use any time.

05/29 Deleted E-mail

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It's not fun but has to be done, going through and deleting e-mail. Yep, you see that right. I was able to delete 14, 317 e-mails today. It took all day to sort out the ones I didn't want and restructure my folders. Hopefully my new system will help so I can be better at seeing the important e-mails and not "losing them". May was my "This and That" month. Tackling some of the items on the to-do list that tickle and irritate the mind because they never get done.

05/30 A Good Dad and Husband

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I am really lucky to have a good husband and father for my children. He's not perfect but neither am I. Raising a special needs child with medical issues is tough. It's amazing we've held things together as long as we have, and we aren't just surviving we are thriving. My husband works hard. He helps out. He makes time for our kids. We are lucky.

05/31 Evie Not Being Too Old For Bath Crayons

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The years pass too quickly. Evie is on the verge of turning into a young woman and that makes us a little sad at times. Of course she'll always be my baby. Today she wanted to take a bubble bath and draw with bath crayons. I have great pictures of her standing in the tub having written her name in bath crayons when she was like three. Today I loved that she's not yet too old for bath crayons.....even if she was listening to Taylor Swift on her IPodTouch at the time.  Of course her drawing made me teary-eyed. It was a moment I won't forget. 

06/01 Interesting School Programs

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The kids have a watershed near their school and some amazing parents have worked hard to create a whole learning program around it. Each year the kids learn something different. I got to go along with Adrian's 3rd grade class into the woods to explore the watershed. We attempted to find macroinvertebrates i.e. buggies but didn't (that was okay with me). Instead we caught a couple worms in our net and the boys found a couple small salmon. I love any type of hands on learning that makes science interesting especially when it teaches about the importance of our environment.

06/02 Delivering the Impossible

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Evie is doing another play with her friends from Seattle. Last week we were given the task of building a boat prop out of cardboard. In my spare time. Somehow I delivered the impossible and here it is. Actually it turned out better than I expected and wasn't as hard to do as I thought. It's just two simple boat shapes sewed together with twine.

06/03 Goofiness

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Around here sometimes creativity gets the best of us and things turn goofy. Just in case you get hungry there is a hidden snack compartment in this hat. The straws puff up the balloons.

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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.

Fundo Intact

Poor sweetie. We took Ainsley in for an upper GI last week. She now gets scared any time we go to radiology and cries and cries even if I distract her with toys she likes. We had this test done at the surgeon's request as a routine part of his 6 months post surgery follow up. He wanted to make sure her fundoplication was intact. I knew it was because otherwise she'd be throwing up. She still gags on occasion and even retches so if the wrap had loosened we would know. It's been almost 8 months and she hasn't vomited once. We are so thankful. For the upper GI they put a barium solution in through the G-tube and then rotate her back and forth on the platform to "see" if there is any "food" coming back up the esophagus. The radiologist said the wrap is tight but not too tight. So I guess that is good information. That means that physically she should be able to get the food down when we progress to the next level with feeding. Probably after the trach comes out some day.

Today we saw the surgeon for the follow up. He said her upper GI was perfect. He was okay with how her scar looked, the raised keloid effect it had is gone now so it looks better but is still wider than the g-tube scar underneath it. He said that can take up to 2 years before it's healed. An open incision surgery takes longer to heal from. Perhaps it may narrow a bit with time. We joked that she wasn't likely to have a future as a stomach model anyway. I asked again and he doesn't think there are better results from doing it as an open procedure vs laproscopically. I had heard of several people on the trach forum whose kids' laproscopic fundos failed and had to be redone with an open procedure so that is why we chose to do it that way. To be sure. Perhaps it depends on the skill of the surgeon and their experience.

Another interesting thing he said is that if you can get food down you can also get food back up and that some kids can vomit even with the fundo. It depends on how hard they retch. It is possible that Ainsley could vomit if she were very ill. So if that happens it doesn't automatically mean that the wrap is "broken". Good to know. We still protect her against anything that will cause her to retch such as feeding when she's not interested or coughing up trach secretions into her mouth.

I thanked the surgeon profusely. The surgery has been the best thing we ever did. It's eliminated a lot of stress for all of us and has helped her airway recover from the stomach acid exposure and is protecting her lungs. She now needs a fraction of the suctioning she used to require. We got a height and weight measure for her: 37 3/4" H (on the short leg) and 31lb 3oz. She is now at a healthy weight because of the surgery (Her dietitian says her growth is perfect, don't change anything, and she doesn't need to come back for 6 months to a year, yea blenderized diet success!). If all continues to go well we will not have to see him again unless she has a problem. I told him I hope we never see him again unless we run into him in the cafeteria. He's a nice doctor who helped Ainsley a lot so it's a bit sad to think we may not ever see him again.

Two Months Post Nissen

It's the busiest time of year.....Christmas. I don't know if anyone will read this. Perhaps some of you are at home stuck in the snow. Steve took the kids outside to meet up with some neighbor kids and sled the hill. So it's just me and Ainsley inside. Although she reached for the door when she saw them leave so I think she'd rather be out with them but I think there is just a bit too much snow for her today. I might lose her.

I noticed the date and realized that we are two months post Nissen Fundoplication today and wanted to quickly say that she is STILL VOMIT FREE! And she is pretty much back to regular feedings. We've been able to give her a 8oz boluses of her pureed foods and had no adverse reaction. So I now feel pretty sure of announcing to the world that it was successful and she doesn't have any of the bad side effects that can go with this stomach surgery. (Although we can't judge any effect on her ability to swallow since she refuses to eat.) Yea! She's still up in weight by over three pounds and looks really healthy. I only wish we'd had it done when she got her G-tube at 9 months of age. Oh well, hind sight is 20/20.

The one unfortunate thing is that her beautiful incision that was so straight and fine widened and became raised after about a month. The doctor thought perhaps the scar has gone keloid and I'm keeping an eye on it and just hoping it stops. There isn't anything that can be done. It doesn't look too bad.

We haven't seen too much additional change in her airway since that first month. We're anxious to see Ainsely's new otolaryngologist on January 23rd. It will have been 3 months since the surgery and I would think that would be enough time to see the results of the absence of stomach acid exposure to her airway. It will be interesting to know if it was the stomach acid that caused the upper airway swelling. Perhaps not but at least now we'll know and be able to rule out one more thing.

One Month Post Nissen- All Is Going Well!

Today it has officially been one month since Ainsley's Nissen Fundoplication and she is still vomit free! We followed up with the surgeon Wednesday and have been given the okay to transition back to regular feedings over a 2-4 week period. Feeding her 50ml of formula every single hour 24 hours a day has gotten old! Still, we want to take it slow so we don't over stress her stomach and cause retching that might risk breaking the wrap. We'll gradually add purees again (hopefully that will eliminate the stinky poo problem) and spread the daytime feedings over longer periods, increasing the size of the feeding and gradually reducing the night time drip of formula until we no longer have to use the feeding pump at night.

We will not know how successful the surgery was until she is on her normal feeding regimen. I feel pretty good about things though and hope that she will still not vomit or reflux even when she is getting her normal 8oz size feedings 4 times a day. And that it won't cause retching when we do. We have seen some retching and it's hard to watch. We don't want her to do too much of that for fear it could loosen the wrap. But the times that she does retch I believe are appropriate and she would have vomited without the fundo.

Amazingly Ainsley has gained almost 3 pounds since the surgery!!! She now has a nice little amount of chub on her tummy and legs. There is now no doubt the degree to which this vomiting issue or reflux was causing problems for her, especially in regard to her weight. She has been considered underweight even though she was on a whopping 1200-1300 calories a day. She's gained so well on 1200 a day since her surgery that the dietician has approved for us to reduce her calories to 1000 per day. She seems to have more energy and is getting stronger, even starting to pull herself up in the kneeling position. I suppose because she's retaining more of her nutrition and she just feels better.

And best yet. We had an appointment with her otolaryngologist(airway doc)on the 10th. Less than 3 weeks post surgery the scope showed a decrease in her airway swelling. We had noticed almost within a week of the surgery that she started making more sound and was better able to tolerate her PMV (speaking valve). She wants Ainsley to be able to wear her PMV all the time consistantly for 3-6 months even when sick,except while sleeping. I'm not sure if she will be able to with the trach cannula taking up some of her airway, and the granuloma that she has, as well. Sadly we discovered that her otolaryngologist is moving to the East coast at the end of November. So it was fortunate we got to see her one last time and say goodbye. Dr. Chen saw Ainsley's airway a few days after her birth when there wasn't any significant swelling, she performed Ainsley's tracheotomy, performed several laryngoscopies/bronchoscopies as well as scoped her multiple times in the office. As one of her tough airway patients she would like to know what caused Ainsley's airway swelling and suspected reflux played a role. We hope she will keep in contact through Ainsley's blog. We have a good replacement doctor taking over. The plan is to see him in late January. Here's a video from the scope.


On the down-side the reduction in swelling opens up the airway for aspiration and potentially lung damage from that. So we'll be watching her carefully and hoping for no increase in respiratory infections. I thought she'd perhaps start eating but she seems even less interested than in the past. Maybe with time once she's better able to protect her airway.

Unfortunately Ainsley caught a cold and developed some nasty granulation tissue on her trach stoma last week and that was causing her some serious difficulty for awhile.

We used Tobridex drops and switched to a Neo length trach temporarily and that seemed to help. She's finally smiling again and getting back to her normal activity level. It would be nice to be able to take her to therapy/school. Especially since she's doing so well with her PMV, even the unmodified one. I'm hoping we'll be able to get back to using it as much of the day as possible. It's been really great that she's been able to tolerate it so much better. We've even been able to hear her laugh a little which was beautiful! I tried to shoot a little video. It's not great, but gives you an idea of how she's doing with her PMV. Still not very loud or clear but better. Small steps.

She's Smiling and Vomit Free

Before the surgery. The scar is from her gastrostomy.


Clearly in a lot of post surgery pain despite the morphine.


The incision is 3" long and goes over the gastrostomy scar. They use dermabond instead of stitches to close it. I think it looks amazing for the first day!

Refusing to smile no matter what.

Even for her favorite visitors.

The great news is that we finally started seeing her beautiful smile yesterday. That is the best and such a relief! Since the surgery we've had about 8 incidents where she coughed up some secretions and it caused her to wretch. Most likely the majority would have ended in vomit in the past. And a couple where they were so forceful her face turned almost purple but still there was NO VOMIT. So I'm feeling pretty confident that the surgery was successful! She's taking small feedings once an hour so there will be the hurdle of transitioning her back to her regular feeding schedule. But so far we have not seen any of the terrible side effects that can accompany a Nissen.

Here's a link to info about a Nissen fundoplication and how they work: http://en.wikipedia.org/wiki/Nissen_fundoplication

We're Home!

Yea! We made it home about 6:30. Had a hodge-podge dinner of left-overs. And are back to life as normal. You would hardly know that Ainsley was in the hospital on morphine just this morning. Evie's doing homework, Adrian's kicking a ball around the house, I'm on the computer and Ainsley is in the living room on hands and knees playing with the toys she got for her birthday less than a week ago. She still will not smile no matter what we do which, as you know, is unusual for her. Poor thing must be in a lot of pain still but she's persevering. I'm sure it'll be better tomorrow.

Edited to add: I guess I missed some details. What I think happened was that she was having excess gas due to the anesthesia and surgery and it was causing the intense pain spikes yesterday. Yesterday evening instead of doing continuous feedings we did gravity boluses and setup a g-tube extension and open 60ml syringe to vent the g-tube. It immediately seemed to ease the pain and we were able to gradually reduce the morphine and transition her over to oxycodone by 2:30. Overnight we switched to a continuous drip. In the morning, rather than doing the continuous feedings that the surgery resident recommended, we continued with boluses and continuous venting and got her up to her goal of 50 ml per hour by 4:45. That was the magic ticket for coming home, off the morphine, IV and at full feeds of 50 ml per hour.

Post Surgery Update

Ainsley has still been in a lot of pain. I'm sure the incision is very painful so it's difficult to tell if it's that, or if it could be gas, now that her stomach can't relieve any built up pressure. I'm not sure where the day has gone, we haven't made any progress on the feedings and at 2:00 they had her at the whopping rate of 5 cc per hour. Good grief. It might evaporate by the time it gets through the line. They only want to up the amount by 5cc's every 4 hours. So for us to get to our goal of 50 cc's per hour will take a day and a half if it goes perfectly. The surgeon who said we might go home today is going back to his standard response of the average recovery takes 3-5 days. I'm still optimistic and hope she'll bounce back over the night and get discharged some time tomorrow.

Sadly, she's pretty unhappy. I bought her a little doll that giggles in hope that it would cheer her and she barely looked at it and didn't even crack a smile. She isn't interested in playing with anything even just to chew on it. We had some bad gagging episodes where she tried to vomit and wretched instead and her head turned a really deep shade of red. Followed by blood tinged secretions. I'm just hoping that she'll figure it out over time so that won't continue to happen. It really looked excruciating. The surgeon said there will be swelling of the stomach for a month. And that it will take a little time for her to adjust to swallowing and managing her secretions. I have to remember that. It'll take at least a month to see the outcome of the surgery. At least a month. At least a month.

Steve will bring the kids to the hospital to visit tonight. I can't wait to see them. Unfortunately we lost our roomie and have a new child arriving while I type this. Cross your fingers that we get an easy roommate and that Ainsley starts feeling better so we can get out of here.

Nissen Surgery Today

We checked in at registration at 6:30 am and were brought back to the surgery prep area. I run into Ainsley's neurosurgeon a nice man who reminds me a lot of Santa Claus. It seems I can't go to Children's anymore without running into people who know her but I'm always thrilled when people get to see how well she's doing. But there is only time for a quick hug and few words since he's in his surgery scrubs and we're off to surgery. They took vitals and went through all their checks and balances. They take extra precautions because of her trach and complex medical history. I met with the anesthesiologists, nurse and surgeon. We joke about the size of her chart (3 inches thick) , I think he says chart number 107, but actually it's only 1 of 7. We laugh that that would be a new record. But then, she's only 2, sixteen years from now who knows.... I'm told the operation will take upwards of three hours. They want to give her a sedative but I ask not to and at 7:30 they take her away to the OR with hardly a whimper, the sweet girl. I get breakfast at the cafeteria and kill some time in the Parent Resource Room while I wait there for Steve after he gets the older kids off to school. A doctor came to talk to us about participation in a Reflux research study. That took up about all the time and by 10:00 they page us to come wait for the surgeon.

At 10:20 he arrived to tell us the surgery went well. He wrapped her fundo (plication) tight so it should hold tight no matter how much coughing she does. We are feeling good. The weight of the decision is off our shoulders now that it's done. We head to the Giraffe wing to meet Ainsley in her room. We receive a visit from Ainsley's dietitian to review Ainsley's eating plan. We meet our roommate. A friendly woman whose son with Down Syndrome had heart surgery the prior week. With the common bond of having a third child with special needs we hit it off and have lots to talk about while our children recover. The well-respected occupational therapist here at Children's happens to visit her son and she's nice enough to come to our side of the room and talk at length about Ainsley's case in relation to eating. She gives me great insight into how to make sense of a very complex issue. I'm thrilled to get a chance to talk to her since she normally only sees the babies. Hospital time. It sure goes fast.

Ainsley is on morphine but was obviously uncomfortable and would arch in pain every 20 minutes or so as if she was getting a cramp, and her heart rate would shoot into the 180-190's. We keep paging the nurse for boluses of morphine. After every 3 boluses she ups the drip rate. Six hours later we feel like it's finally at about the right level. She's still sedated and may not "wake" up for a few more hours. It's been 11 months since her last surgery so I am really not sure what to expect from her once she's awake. I don't know if she'll be as easily content to lay in the crib.

Her incision looks really good. It is about twice as long as it was and goes directly over her g-tube incision scar. It's covered with the glue and tape rather than stitches and hardly looks new or bloody at all. I think it's going to heal nicely.

They say it is possible we could go home tomorrow, but if not then the next day.We can't wait to get home and see how she does. We can't believe she will be vomit free. It's almost too good to be true.

Gastric Emptying Scan & Results

Ainsley in the Gamma Camera

A Link to more pictures: http://cmd.shutterfly.com/commands/pictures/slideshow?site=ainsleyspics&page=ainsleyspics&album=44

I wonder how many more tests Ainsley will have with names I can hardly remember. The surgeon who will do Ainsley's Nissen wanted a Nuclear Medicine Gastric Emptying Scan to see if she had normal motility. When he suggested it I wondered to myself why didn't we already have of these.......Well now I know.

10:15 that's the time we were to show up for her appointment. When we eventually get back to the room (they always seem to be behind schedule) they show me what they're going to do. Give her a bolus feeding and strap her on a narrow "bed" on her back for an hour?! I NEVER put her on her back after a feeding. When I've had the misfortune of her having poopy diaper after a feeding I dread lying her on her back for the 2 minutes of the diaper change. It has frequently ended in vomiting up into the face. (In fact this just happened while writing this blog post. That Nissen can't happen soon enough.) So my jaw drops and I explain that she is highly likely to vomit in that position. I knew that they'd be watching her for an hour but had no idea it would involve being laid flat on her back and for so long. They try to reach the surgeon who is, of course, not available. So we're waiting for 40 minutes for an answer and Ainsley has not had any food since the previous night. She's HUNGRY. And the few toys I brought are starting to get old so I'm really worried that they'll never last another hour.

Finally we get clarification. Yes indeed he wants us to do it. No surprise really. So we strap her onto the bed with this enormous blue velcro strap and the technician uses the remote control to move the camera over her body. It's like an MRI where you are in a tube and they adjust the height so that her face is just a few inches from the tube. She hates laying on her back and is hungry and scared so of course she starts to cry. The nurse injects a small quantity of tracer into her g-tube via syringe. It is radioactive and allows the gamma camera to track the tracer as it moves through her digestive system and show the movement of the stomach contents on a monitor. Then she is given a bolus of formula. We opt for a 6oz feeding instead of 8oz to minimize our chances of her vomiting. I hold her hands and she starts to calm down once her tummy is full. Then I get creative with my bag of toys and come up with games to play for the hour.

I happen to have a plastic fly. I make the fly buzz and land on the machine over her head. Just like a real fly it buzzes and lands, buzzes and lands. She's loving it and is happy and smiling. But buzzing is not great when you have a headache. On the other hand neither is a crying child who might vomit up the tracer and ruin the test. Since Ainsley gets increased sections while crying it is important that she remain calm and happy since increased secretions = increased coughing = high probability of vomit. Thankfully the technician is able to find me some ibuprofen to take the edge off of my ever-increasing headache. Who thought up this stupid game? Oh yeah that was me. Amazingly, I am able to keep her attention with the fly for about 20 minutes. Now only 40 to go....Sigh.

Then we play with a mirror. Sing mirror mirror on the wall, who's the cutest baby of them all? Tap the mirror on the machine. Tap it here tap it there. Uuuuughhh. This lasts about 15 minutes only 25 to go.

Peek-a-boo with a towel. Ten more minutes, fifteen to go.

Old McDonald with some other small plastic animals but unfortunately I have a lion, dinosaur and turtle and not a lot of farm animals.

But we do have a DOG. So we sing "How Much is That Doggy in the Window". But I can only remember the first few verses. It gets old although it's kind of fun to make the dog bark and wag it's tail.

Finally the hour is up. The best part? We get to come back after an hour and get 5 minutes of pictures then come back another hour after that for 5 more minutes of pictures! They forgot to tell me that about these two additional hours. So the appointment that I was told would take a 1 1/2 hours lasts until about 3:00. Luckily today the kids started woodworking class after school so I don't have to pick them until 4:30, rather than the normal 3:20, and I will have time to run home to drop off Ainsley and our nurse before leaving to pick up the kids.

We take an hour lunch break, go back for pictures.

Kill another hour giving her a feeding and getting gifts at the gift shop before going back for the final pictures.

By now she's fallen asleep and when I have to pull her out of the stroller to strap her to the bed for the THIRD TIME she loses it and truthfully I don't blame her. Poor baby. Funny when the five minutes was up I picked her up and told her we were all done and pointed to the machine and signed "all done" she immediately calmed down. She really seemed to understood me! That was cool!

So the results are in and (drum roll)...............she has normal motility and reflux. Exactly what I told them. I had put food coloring in her feeding and it came back in a day so I knew she had normal motility. And it's been obvious for some time that when she coughs the pressure causes stomach contents back up in the esophagus. It also showed no tracer in the lungs but again, I've never seen the dye come out in her trach secretions so even that was what I expected. Basically it was a lot of hoopla to confirm what I already knew.

God

Those of you who know me personally know that I don't really believe in God. At least not in the way that most people think of, a being who is paying attention to the minutia of our lives and listening to our prayers. But every now and then he seems to call me out. Like tonight.

This is my day: Drag myself out of bed after a night of too little sleep, having gotten up at 3/4/5 am to suction Ainsley because she was coughing. Rush around to get myself and Ainsley ready to leave at 8:30 for the appointment. Help Steve get the kids ready for school. Rush to Children's for the surgery consult, rush home to schedule the surgery because we got tired of waiting for the scheduler after being at the appointment for 2 hours. Write a blog post. Paint the porch for 5 hours. Welcome the kids home from a play date. Say goodbye to the nurse and sign off on her paperwork. Make dinner. Clean while trying to help 2 kids do homework. (Steve is working late to make up for time lost at the appointment.) Get kids ready for bed. Change Ainsley's trach because she's been coughing like crazy. Get Ainsley's tube feeding ready and meds. Did I mention that I'm still getting over a cold? So I'm sitting on the bed with Ainsley over my legs. I've given her a feeding. I'm thinking to myself that the trach change seems to have helped the coughing. She's so sleepy she lays her head on my chest and it feels so good to just be sitting together. But it's been a big day and my mind starts to wander and I'm thinking about the surgery: what if when she gets over this cold she stops vomiting again? Maybe she's finally about to outgrow it. Maybe I should wait a few weeks to see what happens. What if, what if, what if..... And right then I think if God had a hand he'd have slapped me upside the head. But since he doesn't Ainsley coughs and vomits her entire feeding onto my chest without warning. I could almost hear God saying Neaner Neaner. Gotcha! Don't believe in me huh?

The hazy photo? That's because the camera is covered in VOMIT (it's my waterproof point and shoot). If you think it doesn't look too bad, that's because I scooped it all off onto the plate. This is just what was left. I don't think I'll be second guessing that Nissen anymore.

We Scheduled The Nissen Surgery

We just got back from the appointment with the surgeon at Children's. Even though he performs a lot of Nissen Fundoplications he tries to avoid doing them unless he thinks it's absolutely necessary and that it will relieve symptoms for the patient. It's an interesting approach to have a surgeon who is hesitant to perform surgery. He had an interesting thing to say in that her vomiting and coughing is like the chicken or the egg question . I've heard this before but what he firmly said that I liked hearing is: It is unanswerable and irrelevant. She has an irritated airway, issues of vomiting and reflux and a lot of coughing. Is the coughing causing the reflux or the other way around. We will never know. But what we do know is that it's here and we've tried all other possibilities to eliminate the vomiting and they have not worked. We know that she has bronchiectasis, that is damage to her lungs, and that the reflux could have caused it and could make it worse. It is also possible that the swelling of her upper airway (that is the reason for the trach) could be caused by the reflux or vomiting. She is underweight due to the vomiting and inability to tolerate larger quantities of food. And of course there is an issue of quality of life because of the stress it causes for the whole family. Not to mention the additional laundry. (Ha, ha.) Vomiting can cause oral aversion and complicate oral feeding. All in all, a whole lot of reasons why she is a good candidate for the surgery. He did say that there is no way to know for sure that the surgery will resolve her airway issues and there are risks and side effects to the surgery but we are really out of other options. We have to try it to know if it would help her. Because of his approach to Nissen surgeries Steve and I feel reassured that it is, in fact, necessary. It's scheduled for October 21st, just 3 days after her 2nd birthday. It will be done with an open incision as opposed to laparoscopically. I wish I felt 100% at peace with this decision. I've suspected for a long time that it was inevitable. With her starting to crawl in September a small part of me still wonders if it would resolve itself over time. Because she's developmentally delayed it could resolve when she starts walking but when will that be? Darn, I forgot my crystal ball again! But at the same time we've put up with this hell for 2 years. How much longer is long enough? I'm sure once it's done I'll be glad just like when she had her gastrostomy surgery last year.

Click here if you want to know more about the Nissen Fundoplication surgery.

A Busy August

I can't believe it is the last day of August. I didn't get around to doing a single post to the blog. Good grief! There was a lot going on, though.

Therapy and Development
Ainsley met with Gay, a very experienced PT at the birth-to-three clinic. She was pleased with the progress Ainsley has made since she'd seen her a few months before. She brought a stander but it was big and bulky and Ainsley hated it. We've had pretty good progress getting Ainsley to stand against the couch, supporting herself with her upper body. Massage of her right leg helps her be able to straighten it better. That leg still appears about an inch longer than the other but we are really hoping that is muscular and will resolve itself.

She has managed to pull herself around the house a few feet at a time but I wouldn't consider it to be a crawl yet.


But look how pleased with herself she is. Ahhh.

Ainsley had her well-child checkup at the beginning of the month. Her doctor thinks she's doing great. She's happy that she's made progress. She did however say that she think Ainsley is developmentally at about 9 months of age. Which is hard to hear since it's less than half her actual age, but I think it's pretty accurate. The new nurse keeps saying how smart Ainsley is and all her therapists have been impressed with how quickly she seems to learn things. But in reality she seems about like a 9 month old in her receptive language skills, motor skills, and basic understanding of what's going on. She's not eating or speaking so in those areas she's even further behind. We have an appointment with a genetic neurologist in September who may be able to give us a developmental prognosis. He saw her in the hospital when she was less than 2 months old. My hope is that now that she's doing more than just lying in the crib he will be better able to evaluate her.

Both Evie and Adrian had their well-child checkups (a bit late) and got an A+. Thank God for two healthy children. Well three, I suppose, depending on how you look at it.

Orthopedics
We had a follow-up appointment with orthopedics. They did an x-ray which showed the thigh bones are still in the hip sockets although her hip sockets still appear to be somewhat shallow. They are unable to tell if the right leg is in fact longer or if the apparent leg length discrepancy is due to tightening of her muscles. They will keep an eye on her. Her surgeon wants to see her personally himself in October and that appointment is scheduled. They do not recommend orthotic shoes or anything like that at this point. And made a point of telling us that leg length discrepancies often do not matter. If she's going to walk, she will walk regardless of any difference. We have a family member that walks just fine despite a difference of 3/4" so that is reassuring. Ainsley of course is at further risk for walking difficulty due to the hip dysplasia and her cerebellum. We can only wait and see.


Standing with Elvira for the ortho appt. , but reluctantly.

Nursing
Our new nurse, Elvira, started on the 4th. She will be coming Mondays and Wednesdays. Even though we received approval from the state for 10 hours per day of in home nursing 7 days a week we think 2-3 days a week would be perfect. (We're hoping our old nurse will get signed on and come once a week on Fridays or Saturdays either every week or every-other week depending on what she wants.) Having the additional help has been great. She's very warm and loves the kids. Best of all, she is competent and I trust her to take good care of Ainsley. She's been bringing us kale, chard, strawberries and yellow zucchini from her husband's pea patch. She's even been bringing chocolates for the kids. They love her. It's like having a surrogate grandma around the house to dote on them. Ainsley is warming up. She cried some the first few times I left the house but did better the last time. She even offers to help with housework. I can't believe how fortunate we are to have found her. (I hope nothing goes wrong.) I've even been able to get out school clothes shopping since both the kids have grown and needed long pants, shoes and long sleeved shirts.

Vacation
We had our big family vacation in mid-August. We went camping and up to Mt. Rainier, and did some fun day trips: a ferry ride to Bainbridge Island and a day at the beach, a day at Wild Waves on the hottest day of the year, a day a Remlinger Farms to go on the rides, got vegetables for the week and picked blackberries to make blackberry pie the following week. It was a crazy week packed with busyness. I'll try to post details of the week and photos soon. Our computer is overtaxed with photos. We've been shopping for a new computer to handle the job but settled on buying RAM instead. It's been ordered and when we get that installed I might actually be able to manage our photos.

Deaths in the Family
Sadly there were a number of deaths in the month of August. Both Joanne and Tom's mothers passed away. It's always sad to say goodbye even when a loved one has a long and good life. There were two deaths in our trach forum community which is almost like a family. The death of a baby always seems so unfair. Tragically, Tommy, who was Ainsley's age, was doing so well earlier in the month. He had been decannulated and was off oxygen in preparation to schedule his heart surgery. Video of his decannulation felt like such a triumph. We were all thrilled that things were going so well. Then he started having respiratory distress and they had to put the trach back in. I'm not sure exactly what happened but I think it was all too much and his heart and lungs were too sick and there was nothing they could do to help him and he passed on. My thoughts have been with his family. I cannot imagine how difficult it would be to have your hopes so high and then have it all taken away.

Pulmonology Review and Surgery
We had our long awaited appointment with Dr. Debley the pulmonologist that Dr. Hing consulted with after our Cincinnati appointment. We liked him very much. I always feel a little sorry for a new doctor having to review a 6" stack of medical records with an incredibly complex medical history to come up with a diagnosis and treatment plan within the appointment slot. Sorry for us too, since we were there for 2 hours. They sent in a resident to go over all the history first so he could review it prior to Dr. Debley coming in. Poor guy. When Dr. Debley finally did come in they said they agreed that Ainsley does have bronchiectasis and they are concerned that it could get worse and her health could decline. It's unusual in that she sats high, has thin secretions, few infections, she's on no special meds and has no repiratory issues such as asthma. The one thing that she has is excessive secretions. Maybe finally someone is hearing us on that one. They went through each of the possible causes of bronchiectasis:
1)congentital-ususally is more isolated within the lungs, not as diffuse as Ainsley
2)cystic fibrosis- usually presents with thick secretions but we're getting a sweat test next week to rule it out
3)frequent respiratory infections/pneumonias- she's had some colds but has only ever been hospitalized for illness, once for RSV, and has never had pneumonia so this doesn't seen too likely
4)aspiration of food-she's at risk because of her dysphagia but the swelling is blocking the airway. We've never seen any food in her trach secretions even doing dye tests where any spillage is obvious because of the extreme color.
5)aspiration of stomach content- we know she refluxes her stomach content especially when coughing up secretions and has had a serious vomiting problem, whether it has made it into the lungs we cannot be sure
However, this last possibility is looking pretty suspicious. The airway swelling could be a response to contact with stomach content. The only way to stop the potential aspiration of stomach content is to do a Nissen fundoplication surgery where they wrap part of the stomach around the lower esophagus to prevent vomiting. We have long been considering this but have been reluctant due to potential side effects such a s dumping syndrome, low blood sugar, frequent BM's, difficulty swallowing food and retching. Plus we'd hoped she'd outgrow it but it's looking like that is unlikley to happen. Dr. Debley thinks she should have the surgery to protect her lungs from any potential further damage. We have a consultation with a surgeon on October 1st who was recommended by several people. Dr. Debley would like to see the surgery done in October if possible, before the height of cold and flu season at the hospital. In a way it's a relief to have the decision out of our hands. It would be so wonderful not to have to constantly worry that everywhere we go she'll throw up at any moment, which she actually did during the appointment(that probably helped to have a him see it). If it goes well and there are no side effects it could be life changing for us. I thought we would make it through a year without a surgery but it's looking like that isn't going to happen. This will make surgery number 6 in two years. Poor girl.

Moving Into A New Season
We're now finishing up August with some construction projects around the house. Trying to get some repairs done before the bad weather sets in. Of course that's a bit of a joke with the weather being the way it was this year, raining practically every few days the whole month. The kids go back to school in a few days and I'm waiting to hear the final word about Ainsley's placement in a birth-to-three preschool program that should start in the next few weeks. If that happens as expected it will replace her in-home therapy visits and will be a whole new experience for her. I'm looking forward to meeting other moms of kids with special needs and suspect this will be the beginning of a whole new chapter in our lives with the two oldest now going to school and the acceptance that even our baby is growing up and moving on to new things. I love the fall for all the possibility it brings.

Vomitting Update

Ainsley had virtually stopped vomiting in February when I put her on a homemade pureed food diet. However, she still had a very sensitive gag reflex and we knew that if we fed her more than she could handle she was still likely to vomit. Especially because the vomiting seemed to be cough induced and she coughs a lot because of trach secretions. So even after it stopped we were still living with the fear that at any moment she would. And occasionally she would, every so often, but not 1-3 times a day, like she did for that first 16 months.

After going several months without it being so much of an issue it was horrible to find that it started again the first week of July just as quickly as it had stopped. That week we discovered she had some granulation tissue at the trach stoma under the trach that was causing her a lot of pain. We took her into the ER before the 4th of July weekend to have it removed. But even after she'd healed the vomiting continued. Now that I was not used to her vomiting I could see it was unacceptable. Truly I'm not sure how we lived with it for so long. It's like your child has a the flu but it never goes away. You never know when or where you will be when they vomit so it is constantly on your mind. And unlike for other kids there is a high probability that the vomiting is what is causing Ainsley's airway problem, the swelling. And since most of the vomiting was caused by coughing up secretions we had to jump to suction her the second she needed it which was about 50 times a day, sometimes every few minutes. If we didn't she'd have vomited much more often. Things were further complicated by the fact that she is tube fed and underweight. We could never really get all the fluids in that the dietitian recommended in part due to the reduced stomach capacity and sensitivity from the g-tube. So she was already getting less than she should so every time she'd throw up a feeding it just made the problem that much worse. Now I could see that we were going to have to do something so I started researching and reconsidering a Nissen Fundoplication surgery. Just when I was ready to schedule it, and was waiting on a referral from Cincinnati Children's, it stopped about as suddenly as it started.

I still believe there may be reason to consider the surgery but it's not as urgent.

We've even been able to give her some canned formula and it hasn't come back up. It would be nice not to have to make the puree every day but it does affect the digestion. This morning she was sitting on the bed while Evie and I read and as we finished we noticed she was sitting in a big pile of poo. It's so runny from the formula that it squeezed right out of the diaper all over the quilt. Yuck!

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.

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.)

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.

Biopsy Results

Faster than expected the biopsy results came in and we received a call from Dr. Chen last night. She says that Ainsley is negative for eosinaphilic esophagitis which they thought perhaps she might have as a result of reflux. It would have explained the swelling but I think it’s good she doesn’t have that. The cells do test positive for inflammation/swelling. That’s good in that it rules out some sort of congenital abnormality of the tissue and the swelling should go away. Unfortunately since the doctors have no idea what’s causing the swelling, there is no specific way to treat it. She’s starting a new reflux medicine ranitidine. Although Ainsley doesn’t have classic acid reflux she does still throw up about twice a day from coughing (due to the secretions from the trach). It would be great if it helped but she was on Prevacid in the past, and that didn’t help. Over the last 2-3 weeks she has been throwing up less, and when she does I give her water by mouth to try to wash away any acid. I figure it can’t hurt and maybe it’ll help. They would like the swelling to go down some to make surgery on the vocal cords easier. So we’ll be hoping that somehow something changes and that the swelling starts to improve. She has a speaking valve (PMV) that allows her to inhale through the trach but restricts airflow out of the trach requiring that she exhale by mouth/nose and therefore push air past the vocal cords to achieve vocalization. Now she can wear it for a few minutes before it builds pressure and shoots across the room. If she starts to be able to tolerate that regularly we’ll know that the swelling is reducing. If that happens of course we’ll let everyone know.