May 31, 2009

Capping in the Tub With Bubbles

As you know we've had a cap since January. Some days she'll do pretty well and wear it comfortably for 20 minutes. On an amazing day even up to 2 hours. On a not so great day seconds, building up to minutes. She always does better with a distraction like school bubbles. This was a fun thing to do. And it's a bonus to have the trach capped off during a bath since it's dangerous to have an exposed open hole leading into your lungs around water. She wasn't sure what to think about the bubbles sticking to her hands and arms. Pretty safe to say she had fun though. And we used it as an opportunity to work on the sign more. That's pretty good multi-tasking: working on sign language, capping, balance (sitting in the tub no hands) and fine motor (poking and transferring bubbles) while improving safety and getting clean all while having fun.

May 28, 2009

Feeling Overwhelmed

Ainsley's care is complex. A lot of the time we are in a groove and things are relatively easy (by Ainsley standards) but this past week or so there has been a lot going on. I think many people including family and friends have no idea the energy it takes to care for her many needs. Of course there is the tracheostomy and G-tube which require a lot of special care. But the stuff that's getting me down is all the other stuff.

We trained a new nurse because our old nurse needed to help her mother move back to the Philippeans and left with 2 weeks notice. It's been a bit of an adjustment to train and get used to a new personality in the house. She's only here 2 days a week but it still affects us. We get the nursing because Ainsley's life is dependant upon her tracheostomy. I would give it up in a second to be rid of the trach. Anyone who thinks it would be great to get free babysitting needs to borrow a trached child for a week.

I've been eagerly waiting for Ainsley to get her gait trainer (posterior walker). I first started having talks with Ainsley's PT about it in March. It was ordered on 4/16 with an ETA of 1-2 weeks but there were paperwork issues with Medicaid and many phone calls and 6 weeks later we still don't have it. We were hoping that use of this walker could help her avoid a hip reconstruction surgery and double osteotomy. With her follow up with her orthopedic surgeon now looming around the corner, in late July, I'm starting to think the surgery is going to be inevitable and I can barely bring myself to think about it. It would set her back 12 months in development because the surgeon says it takes 6 months to get back to doing what they were prior to the surgery and during that 6 months she won't be progressing, just catching up to where she is at now. With any luck the gait trainer will be here within the next week and then I can start the process of trying in earnest to teach her to walk.

I've had many phone calls in over a week and a half to try to get answers from the ophalmologist. We got a second opinion about surgery to repair the ptosis earlier this year and we are due to follow up with him and potentially schedule surgery for later this year. After talking this over with a dad from Ainsley's school who happens to be a neurologist I decided to err on the side of caution and run the new surgical plan by the original opthalmologist. He wasn't familiar with the surgery and hasn't called me back. After multiple calls I'm still waiting. Even if he calls I suspect I'm stuck in the postion of trying to decide which approach to go with. Am I an MD? No. So why is it my choice? I'm still sick about the fact that swelling from her second cranial surgery damaged her eyelid muscles and worsened the appearance of her eyes so much. It's been almost 2 years. Maybe I'm not going to get over that.

We've got an upper GI scheduled tomorrow and a follow up next week with the surgeon who did her fundoplication surgery in October. I expect everything with the fundo is still good and we won't have to follow up again unless there are problems down the road.

We're in the process of transitioning away from the birth to three center and into the Seattle Public School system. We had our transition meeting this week. The next day I also had a tour of the school she'll post likely be assigned to. I had toured it once before and was concerned that this wouldn't be the right environment for her and had also toured the EEU. After yesterday's visit I'm feeling much better and think it's going to be okay. I signed enough paper that I felt like I was going through escrow. Now she'll have an evaluation and her IEP will be scheduled for September. In October she'll attend a program through Seattle Public Schools for 2 hours per day 4 days per week. They will provide a nurse to attend with her to keep her safe due to her tracheostomy. I'm hoping between now and then we find someone qualified. Even our current nurse, although an RN, came to our house with no real pediatric trach experience and did her first ever trach change on a "real live person" on Ainsley. This person has to be good if I'm to entrust my daughter's life with them.

I've had problems with Ainsley's suction machine and been talking with Medela, as well as ordering a battery from some random medical supplier back east. I LOVE our Clario suction machine and hate to be without it. As soon as the new battery comes I'll test it and if there is still a problem I'll have to send it off to Medela. Since I'd be without it I ordered a replacement from Children's HCS so I'm ready. I have to have two working suction machines in our possession just in case the other one breaks since Ainsley's life depends on it.

After a year of trying with no success to get the suction catheters I want from Children's HCS I was finally able to locate the ones I want through Apria. Even though I was told they didn't carry them I got through to the right person this time who knew they can get them through a distributor. I got the doctor's prescription and our first shipment should be here any day. I can't wait.

I needed a few cans of soy formula for an experiment to see if it helps Ainsley's airway and found when I placed this month's medical supply order that the prescription nullified our Pediasure prescription so we had to get yet another prescription put through with all three formulas so they could ship our medical supplies. Red tape. I love it.

I've got the BIG airway appointment coming up less than two weeks from now and that is heavily on my mind although I am trying not to think about it.

She has school/therapy 2 days a week due to the fact that she has global delays in the areas of gross and fine motor skills, cognition, speech and language and eating. Lately she's made a few gains but in noticing those I've also noticed how far behind she really is. Every day these delays become more apparent and worrisome to me. The only area she's not delayed in is growth where she is in the >95% range. (The girl is huge and that is not great for my back since she has to be lifted in and out of the stroller, highchair and crib, as well as carried up and down the stairs.) In addition to the two days a week we try to do as much "therapy" as we can at home. We work on walking, standing, eating, learning new words, vocalizing (using her voice), PECS and sign language. It's a lot of pressure to know that her development is in my hands. But I'm one person I can't do it all.

In particular I'm concerned about the trach, her airway and it's effect on her speech. I've been talking with her speech therapist and reading Childhood Speech, Language and Listening Problems and became concerned that despite the good results in March from her BAER that perhaps she has an issue with fluid in her ears, since both times we went for a hearing test they thought they saw evidence of that using the tympanometer. Even though she can hear it's possible that inner ear fluid could cause her to hear muffled and that could cause problems in speech for which she is already seriously at risk. I contacted audiology this week to see if they tested for that in March or could we schedule to have the test done before our 6/9 appointment with the ENT. Eventually I get a hold of the audiologist and she says "Yes I did test for that and there is evidence of fluid in her right ear so if you didn't already have an appointment I would recommend you make one." Oh really? When exactly was she planning on recommending that?! When she gave us the results in person? When she typed up her report? Apparently not. I guess she'd been waiting for my call these past 2 months. We are trying to get a speech pathologist from Children's that works a lot with trach patients to attend the 6/9 appointment so we can get help determining if Ainsley's difficulty with vocalizing is anatomical or neurological and are not getting a call back so that will probably mean scheduling yet another appointment.

I'm tired. I know things will calm down again, but soon I hope. Between Ainsley's needs, her everyday care, cooking, cleaning, laundry, homework, yard work (oh the weeds are killing me) caring for the other 2 kids with their own needs and my big kid (sorry Steve) there is little time left for me. Some days I feel I just don't have the energy to keep this up. But usually I feel better after a good night sleep so that's what I'm going to do right now.

May 27, 2009

Ainsley's First Real Sign

During our many many months of speech therapy and watching Ainsley's every move for signs that she was understanding language I've never been 100% sure I've seen her do a sign in sign language. Ainsley started receiving therapy services when she was 4 months old. We started working on sign right away. At one time there was this all purpose sign she did that looked like hi, all done (with one hand) or milk. I was never sure. Or maybe she was doing three different signs but they all looked the same. She did learned to wave hi and bye but somehow that doesn't seem exactly the same. I'd kind of started to give up. Sometimes I would still sit down and do a Signing Time DVD with her. I still use some signs at home and they use them at school. But I wasn't sure if she was ever going to "get it".

For the past couple months our routine has been that we say goodnight to Evie and Adrian then I put her Ainsley on our bed and we read books. It's actually therapy in a way. But she loves books so she puts up with me bugging her for the most part. I'm trying to teach her body parts and we identify mommy's nose, Ainsley's nose, baby's nose, mommy's arm, Ainsley's arm, baby's arm etc etc. Word recognition of basic words like clothing, furniture, animals, cars, etc. How to nod yes or no using the fantastic book No No Yes Yes and we nod her head with every page. How to point by holding her hand into the right position to point at all the birds in Count the Birdies. She is good about her routines and picks up on them quickly and doesn't like changes too much. She LOVES her reading time.

We've been trying to teach her the sign for book over the last couple nights. Tonight I stood next to the books across the room and looked at her.

Mommy: "What do you want Ainsley?"
Ainsley: Smile.
Mommy: "Is there something over here that you want?"
Ainsley: Smiles and ducks her head like she's being coy.
Mommy: "What is it tell me." I stand around a minute or two.
Mommy: "If there's something you want show me the sign."
Ainsley: Puts her hands together in her lap like a clap clearly trying to immitate the sign for book as best she could with her motor skills.

I was SO excited and made a super big deal about it. Yay!!!!!!!!!!! I am so proud of my baby girl! You should have seen her grinning ear to ear. She knew she'd done something really special.

May 26, 2009

Two Weeks....But Who's Counting?

Having a child with intense medical issues requires one to look at their own life and expectations in wholly different way. I have learned a bit about the practice of mindfulness and since it does not come naturally to me I have to continually remind myself to remain in the present. It is easy when you have a child with a tracheostomy to get lost in looking forward to the day when you no longer have to be concerned about nursing, medical supplies, speech and eating problems, let alone "trach-snot". I frequently hear my friends on the forum talk about the challenge of not living for decannulation and missing life along the way to that eventual destination. It helps so much to know I am not alone in this challenge to stay focused on the here and now while maintaining hope that some day our day will come.

We use the term "guarded hope" to describe the state of mind in which you try to have hope for a brighter future for your child while not setting yourself up for disappointment. So many moms I know expected the trach to be a short term solution only to find the years going by with little change. With each appointment scheduled we carefully hope to hear good news.

We personally are 2 1/2 years into this journey and it is hard sometimes to see so many other kids from the trach forum get their trach out while we try to wait patiently. But there are also many who are waiting just like us and that helps. There are some who have lost their trached child (it can be dangerous to have an artificial airway) and would take the trach forever if they could have their child back and it helps to remember that we are lucky to hold our babies with their trachs. Some know their child will always have their trach (perhaps there is some peace that comes with knowing that) and it helps to know if they can do it we can too if we are given the news that the trach will be permanent. Then there are those whose child got the trach out only to need it put in again at a later date. We all fear that. Most of us try not to even imagine it but sadly it happens somewhat frequently. There are so many possible outcomes. A seasoned trach mom knows to guard her hope and keep it close. The pain of disappointment stings.

So it is with guarded hope that I am awaiting our appointment with Ainsley's otolaryngologist on June 9th, but who's counting?! At her last appointment he was considering some surgical options but wanted to give it just 3 more month to see. It will have been 3 months by the appointment and I am looking forward to hearing what he wants to do. I'm used to hearing lets wait and see so that's what I'm expecting while my heart is secretly hoping for so much more.

May 14, 2009

What a Wonderful Sound!

Ainsley wore her cap again today for over an hour during "school". The distraction definitely helps. Then later tonight I was amazed at how much sound she was making. From the other room I could hear her giggling with her brother and ran to catch it on video. It turned out that she was actually pretty much plugged up with dry secretions and I didn't know it. Maybe she was still able to get a small amount of air through the trach but mostly she was using her mouth and nose as if she were capped. There really seems to be a difference and much more sound for her than if she is wearing the PMV. Not sure why that would be since it's the exhalation of air through the vocal cords that makes the sound and that is what the PMV does, forces the exhaled air up through airway and out the mouth and nose. I hope she'll continue to do well with the cap so she has more chances to make sound each day. You can hear her voice is still very hoarse from the scar tissue and swelling but it's music to my ears. Even if it's not talking and is just giggling over silliness.

May 13, 2009

2 Hours Capped! And then nothing.

Ainsley was doing well during speech therapy yesterday so I switched her from her PMV to the cap and she continued to do well. She was making even a bit more sound, which was exciting. So I kept it on until it was time to drive home and she made it 2 hours! Amazing. I think it helped that she was distracted by all the activity then I think she forgot she had it on. I had to remove it once for 30 seconds when she was working really hard in PT and seemed to be working a little hard to breath and once when she coughed but that was it, otherwise for a full 2 hours and she even had some coughing that she was able to recover from without taking the cap off. There has been a few long times like this but on average she is still in the 5-30 minutes range.

Then this evening when I came to relieve the nurse she was making a lot of noise using her PMV. So I tried the cap and she wanted it off right away. She looked alright but I didn't want to push the issue and I knew the second I walked away she'd remove it anyway. Dang that girl keeps me guessing. I don't know why it changes from day to day. But at this point I would just be thrilled if she could just continue to make more sound. I'm sure she will do well capping again another day. And I'm still thrilled at the 2 hours. But the progress will likely be inconsistent.

Every time I hear a bit more sound I hope "This is it. Finally her airway is turning around." but often the increase in sound is followed the next day with things being exactly the same. Every now and then I get to feeling down about the fact that I have a 2 1/2 year old that still can't make much more than a grunt of a sound. Part of it is likely neurological. But, I still think she will do better when the airway issues are resolved and that is why I am eager to get the trach out. Her care has become so much easier in the last 6 months since her fundoplication, and we've become so accustomed to this lifestyle that I know I can keep it up as long as I need to, but for her sake I want it out. So that we know that her airway isn't holding her back.

She has an ENT appointment in 4 weeks. Please hope and pray that somehow things have resolved enough that they can do surgery to remove some of the scar tissue to improve her voice and airway. I'm tired of being excited at the smallest sound and want more for her.

May 9, 2009

Woohoo! 1 Tbsp Apple Crushers Eaten

Just a quick blog post to say that Ainsley ate about a tablespoon of Apple Crushers sauce. It's a Trader Joe's product that is basically apple sauce with carrots in it, in these weird little squeeze packs. It's got extra vitamin C so it's rather tangy. We didn't have great luck during therapy but tonight she was past due for a feeding so she ate close to 10 small bites. I held the spoon a few inches away and let her set the pace and she leaned forward to get the bites when she was ready. It's been so long since she's willingly opened her mouth for anything. And......she was capped. The best's orange so it's super easy to see if she's aspirating and I'm thrilled to say there was no trace of color in her secretions.

She also tasted the hamburger, tomato and chips. (We barbecued since we had nice weather.) Just licks but still....really great since she got crumbs into her mouth and didn't gag. It SO helps to be hungry.