Thanksgiving & Mimi & Papa's visit

HAPPY THANKSGIVING!

Sorry for the long delay in updating the blog, but my parents, Leah and Bill or Mimi & Papa to the grandkids, were here for a 10-day visit. It had been about 16 months since they had seen Faith (they saw Anthony in May when I brought him out for a weekend on one of my work trips) and although I've shown them a couple videos they really enjoyed seeing how much she has grown in person. They were very impressed with everything she is doing and I was so glad for both her and Anthony to get some really nice time with them. Unfortunately, just about everyone in the house was sick. I called Faith's pulmonologist and put her on antibiotics right away since she has her surgery tomorrow, but the rest of us just suffered through it. Fred and my dad had it the worst and that definitely limited doing very much while they were here. But we did get out for a few things, Mom and I went to a play downtown with my friend Janeen and a bunch of women she invited, called "Girls Only" that was very funny; then we went to Anthony's school play -- he was "Squanto" an Indian who taught the pilgrims how to plant corn (very cute); grocery shopping of course for the big meal which Mom & I cooked on Thursday; Mom, Dad and I went to see the movie "Australia" later in the week which was long but good; on Sunday we took the kids to see Santa at the mall and got a couple pictures and finally I got to go to lunch with Mom & Dad before taking them to the airport on Tuesday. Sounds like we were busy, but that was spread over 10 days and the rest the time we sat around eating, watching TV or reading.
So tomorrow is rapidly approaching for Faith's BAHA surgery. We have to leave the house around 7am to check in by 8. I think her surgery is supposed to start around 9am and take 2-3 hours. Then she goes to recovery for a couple hours and then sent home. So I will try really hard to post by tomorrow night with her status.

I better get to bed and get some sleep!

Love,
Robin

BAHA surgery date and Fred taking over ...

So last Tuesday was such an eventful day that it has taken me about a week to get over it and finally post. It started off with an appointment Tuesday morning with Faith's ENT to set up a date for implanting Faith's BAHA. Our ENT is very good, but also very outspoken. He does not believe that doing an atresia repair (creating an ear canal) is a good surgery to do, especially when a BAHA is a much less invasive surgery and can provide excellent hearing. While I do agree the BAHA can provide almost guaranteed successful hearing restoration down to 10 dB (about a whisper), the chance for Faith to have normal hearing without an aid on is worth it to me.

The reason I feel so strongly about it is because she cannot wear the BAHA in water or while sleeping or easily under a helmet (bicycle or batting helmet for example) and there is a higher incidence of kids with hearing impairments to get into accidents. Our ENT thinks kiddos wear their BAHAs while sleeping which I find impossible to believe because of the feedback it gets when anything touches it and all the parents I've asked agree. Some of the reasons our ENT doesn't like atresia repairs are because of it being a 10-12 hour surgery versus a ~2 hour surgery to implant the post for the BAHA; the risk of hitting the facial nerve causing permanent parallysis to one side of the face and because he thinks it usually looks bad either creating a hole larger than normal or being placed in a bad location. All of his concerns are valid and unfortunately there are a lot of surgeons doing this repair that have had very bad results. However we are considering only two surgeons for this surgery who are the best in the country and have had wonderful success. I have seen the results of their surgeries and think it looks very good, not at all in a funny location.

While it would be nicer to have a doctor who agrees with us on our plans, I still believe he is quite good at doing BAHA implants and I believe he will work with us if/when we do have her atresia repair to do the post op care instead of us having to travel back to CA or VA. So, we have set the date for her implant surgery on Friday, December 5th. We are now trying to decide whether to only implant the BAHA on one side or whether to go ahead and implant the posts bilaterally as a temporary solution until (if) we go ahead with the atresia repair and as a back-up if the atresia repair is not successful. We are waiting for the atresia reair surgeon in CA to respond to my email and discuss his recommendations in more detail. I thought I would be excited to be moving forward with getting her BAHA implanted and for her to have even better hearing, but I find myself completely dreading this surgery - I just keep getting caught up with the thought of her having screws in her head with a box attached to it.

That was just Tuesday morning. Tuesday afternoon was when the day got ugly. We had a new nurse start the week before and this was her 3rd day with us. We were getting to know her and she us. We had noticed a few little quirks that we wondered if they were warning signs that we were in for another bad match, like taking twice as long as necessary to feed Faith and not seeming to take our directions well even though she said, "please let me know if I am doing anything you don't want me to or you do differently." Nice words, but apparently not what she really felt. Fred had decided that with this nurse that he was going to be much more direct with how he wanted things done instead of just getting annoyed, so on her first day he decided to cut short the hour and 20 minute feeding (normally takes 30-40 mins) and show her how to do it faster, though we found out later that she was upset by how he handled it. On Tuesday I stayed home to take Faith to the ENT and spent some time sitting with the new nurse while she was feeding Faith. I was really uncomfortable by the questions she was asking about Faith and found myself not wanting to answer her. It's hard to explain because her questions seemed okay on the surface but for some reason I just felt like she was challenging me. Maybe the best example was when she asked me to leave Faith's room in the morning so she could get her out of her crib without her crying for me - other nurses would have just talked Faith through it (since I was asking her to get Faith out and not doing it myself).

The final straw came when we returned home from the doctor. It was past Faith's lunch time so Fred said to the nurse, "I will heat up her food if you will take her up and change her diaper" to which she didn't respond and so Fred turned around and said "Is that okay?" and she answered "fine." Fred and I both thought it sounded like she was annoyed. So we all got out of the car, Fred took most of Faith's stuff inside and the nurse got her suction machine, got out of the van leaving her door open, came around to where I was starting to undo Faith's seat belts and said something like "Oh thanks, those car seats are hard for me," which I thought was weird, but whatever. Then she just goes inside while I ask Faith to go close the van door that she left open and bring Faith in. By then the nurse was headed up the stairs without Faith, so Fred got irritated and went and picked Faith up and took her upstairs passing the nurse on the way. She says "Where's the Fire?!" which is when I had enough. I said "that was innappropriate" and then she asked whether we wanted her to stay till the end of the day or leave then. Fred said just leave. She grabbed her things and took off and I followed her outside trying to calm things down and end it on a more reasonable note, but she said some very accusatory things that I'd rather not repeat here. We called the nursing company and initially said we were done with training any new nurses (she was number 10) and that we just wanted to cut our hours back to whenever Rachel, Lisa or Maria (three of our 4 great nurses) were available. They agreed, but the next day I had a long conversation about the whole incident again and was very upset with how they handled it and that they seemed more interested in defending that nurse than understanding she was a bad fit for our family. By the end of the day, Fred and I decided to be done with the company completely.

Private duty nursing is not an easy job and it is extremely hard on a family to have someone in their home even though they are providing a needed service. Out of 10 nurses we had 4 really wonderful nurses who just got everything about it. They understood the importance of fitting into our routines and lifestyles, taking a backseat when I was around being her mom, giving Fred his space and asking for his direction when they had questions, and most of all, treating Faith with love and even Anthony with, well, with love too and allowing him to be a typical big brother to his sister and teaching him instead of trying to keep him away. For the other 6 nurses, most of them were good people who just didn't fit in with our family and although we tried to make it work with most of them, in the end you can't really create a good fit when it doesn't just happen on its own.

So now Fred is going to go it alone!! I know he will do just fine with this. He is more than capable of taking care of Faith medically and things are much easier now that she is older. There will certainly be times where it would be nicer if we still had nursing, like not having to take Faith out in bad weather when he has to take Dana and Anthony to school or go grocery shopping and there will be some new stresses with watching two little ones. Overall though, I think these new challenges will be a welcome change for Fred in exchange for getting our house back and you can already see Faith being thrilled to have Daddy spending more time with her! Thankfully too, both Lisa and Rachel (and hopefully Maria too) will stay in our lives. Lisa has already offered to watch Faith on occasion for us if we need help or some time off!

My parents arrive this Saturday and I am really anxious to see them. They haven't seen Faith since last summer (before she turned 1) so they are in for a real treat!!

Regards,
Robin

Yellow-Orange Skin and a Trach Incident

Thursday night was rather interesting at our house. First, when I came home from work I told Fred that I had been noticing that Faith's hands and feet were looking very yellow-orange to me and I was wondering whether it was anthing to be concerned about. I first noticed it about a week ago and wondered if she had spilled some of her food and it stained her hands. But I kept noticing it for the next few days and I started thinking about what else could cause it - liver failure was what I was most afraid of, but the whites of her eyes were still white. Fred agreed it was very noticeable after I mentioned it, so I decided to call the on-call pediatrician to decide whether it was something that needed immediate attention or not. She called me back and asked questions about the color of the whites of her eyes (sclera) and whether she'd had a fever. Finally she asked, has she been eating a lot of sweet potatoes or carrots? I said, yes and she said it's "Carotenosis" a harmless condition that happens when a person gets more vitamin A than their body can process and so it deposits yellow-orange pigmentation in the fatty tissue just below the skin. She said we just need to stop feeding her orange foods for about a week or so until it goes away! It was funny because the doctor had that thought and then thought Faith was too old for those kinds of baby foods, but because I'm blending baby foods for Faith's g-tube feedings, it was exactly it! So one lesson learned for doing a homemade blended formula: take it easy on the orange foods!

Later that evening after we got Anthony and Faith to bed, we were watching the Virginia Tech Hokies football game and watching Faith on the video baby monitor that we set next to the TV in the evenings. All of the sudden Faith started crying, but it was a very unusual urgent and loud cry, not something we hear her do hardly ever. We watched her for about 30 seconds or so wondering if she would calm down on her own but as it got louder I ran upstairs to check on her. I was assuming her g-tube button was bothering her again, but usually that only makes her wimper in pain for a moment. So I turned on her light to find out what was wrong and she had her hand up at her trach, holding on the "artificial nose" when I finally saw that her trach tube was completely out and laying in front of her neck. I yelled to Fred, "She pulled her trach out" and while I heard him come running up the stairs I quickly got it back in, without even thinking about what or how to do it. She quit crying and was breathing just fine. While it is a really bad event that could have turned into an emergency, it was strangely comforting to know that one, she wasn't turning blue after it being out for 1-2 minutes (although she was just starting to get that dusky color kids get from crying too hard) meaning that her airway is significantly better than it was a year or more ago and two, it was wonderful to hear her cry so loudly. I guess with the tube being out she was able to get a lot more air past her vocal cords. I think it was a little painful for her with the trach tube stuck in front of her neck, but I think she was crying more out of fear. Of course it is another reality check that she could still have a serious airway emergency just because she is trached and we can't let our guards down thinking that she is such a typical 2 year old in other ways.

Things are a bit calmer this weekend except for me having a miserable sinus infection and everyone else just getting over being sick or still having a touch of something. Fred took Anthony to a birthday party today so I wouldn't expose Keshena's new baby (with his own lung condition, PCD) to my infection. On Tuesday we are going to meet with Dr. Pashley to discuss implanting Faith's Baha (bone anchored hearing aid) and I will try and post right away, especially if we set a surgery date before the end of the year.

Hope you all are doing well and getting ready for a yummy Thanksgiving feast!
Robin

Election Day Excitement in our home

Our house is already a noisy place, but this election season raised it a few more decibles. With fairly opposite political views we've had our share of debates and Anthony has jumped in as well! He usually takes Dad's side and likes to ask everybody he talks to who they are going for. If you don't know or don't answer him, he asks whether you want to keep your change or not (Fred's teaching of the Obama's Change/"wealth redistribution" plan).

Anthony is also very busy now practicing writing and asking us how to spell everything. Saturday night he was up late making a card for "his best friend" Faith and asked me to cut a number "2" out for him and last night he was up late writing signs for the house "Yes McCain, No Obama" on one and a "Yes Obama" on another and then got Fred to help him tape them up on various bedroom doors this morning. He's instructed us that he wants Mom to tell him who won if her choice wins or Dad to tell him if his choice wins. It's quite hilarious to hear how interested in it he is. In fact, when we were in California Hilma and Bob took him to their church with them on Sunday and in the middle of the service Anthony blurted something about McCain, causing the mostly pro-Obama congregation to get a good laugh.

Whatever your beliefs are, make sure you get out and vote tomorrow (if you haven't already in early voting)!! We plan to stay up late watching the results trickle in and see if we have a new President by the end of the night or if it will turn into a long drawn out challenge with allegations of voter fraud or other issues. We'll see how long Anthony lasts with us. Whichever way it goes, it will be nice when our phone stops ringing and the commercials finally stop running!

Best wishes to all,
Robin

The Atresia Microtia conference weekend in California

So I'm finally going to post about our great trip to California for the Atresia Microtia Conference! Here's a link to my photoshow from the weekend: Palo Alto, CA trip photoshow (hit the back arrow to return to the blog when the show is over).

We flew out on Friday, Oct. 10th, on Southwest airlines (with Faith's and my tickets being provided by Southwest on a medical transportation voucher which we were so thankful to get from them -- please think about choosing Southwest for your next trip!) We went to the hotel where Fred's family met us, first his parents, Bob and Rosemarie, then Bob and Hilma and then Jim and Hue. It was a really nice evening and Jim and Hue generously brought us all dinner from a nice Italian restaurant.

On Saturday I went to the conference with Fred's parents and Hue. We listened to 5 doctors talk about options for opening up ear canals (atresia repair) and outer ear reconstruction (using either the child's rib cartilage or a synthethic material). It was very good to hear, especially already knowing that these doctor's are considered the very best in the country (according to many parents who have compared other options), maybe in the world for these two surgeries. That evening, Anthony went home with Bob and Hilma while we went to the pizza social at the hotel that I organized and AmeriFace Org paid for, where we got to meet a bunch of the other families attending the conference. We met Janalyn and Cicily (and Chris, Maya and Grandma), Jana and her twins Tyler and Jacob, Deena and Teresa Joy, Aretha and Yasmine, Lynn Marie and Jake and so many more plus all of their familes. It was just wonderful being able to meet so many people I've been chatting with from the Yahoo groups for Atresia Microtia, Goldenhar and Treacher Collins.

Online friends Jana and her twin boys Jacob and Tyler,

Deena & Teresa Joy, Cicily and Faith

Faith and Cicily - future best friends? We hope!

Faith is just 1 week older than Cic!

Janalyn & Cicily, Aretha & Yasmine, Me & Faith

On Sunday each of the families got to meet one on one with each of the doctors for just 10 minutes, but it was nice to meet them and briefly discuss our options. As I mentioned before we went, we found out that Faith is a candidate to have her ear canal opened (atresia repair) on one side and they confirmed this again and basically said we should focus on her jaw first and do her atresia repair when she is a little older (probably between 4-6 years old) just as long as it is before she gets her trach out so that we don't have airway issues and will be able to do her surgery in the surgery center instead of in the hospital.

The cost for the 3 major surgeries (one to open her right canal, one to reconstruct the right outer ear and another to reconstruct the left outer ear) is roughly around $50K each and we have no idea yet whether any of it or just how much would be covered by insurance. We have good insurance through my job, but I've heard a lot of stories about this not being covered and Faith's Medicaid (secondary insurance) is limited to services provided here in Colorado. So, who knows, that is a few years away but we may end up needing to do fundraisers to help cover the cost.

For Faith's left ear which she is not a candidate to have the canal opened, we are going to go ahead and have her Baha (bone anchored hearing aid) implanted within the next few months. We have an appointment with her local ENT on Nov. 11th to discuss it further and set a date for that surgery. The surgery itself is fairly minor, about an hour for them to implant a titanium screw in her skull (exactly the same as a dental implant) and I believe insurance will cover the full cost of that. After the surgery we need to let the site heal for three months before her Baha can be attached directly to her head, so in the meantime she will continue to wear it on a headband. Even though it sounds straightforward and I know it will be one of the easiest recoveries Faith will have of her many future surgeries, it stills makes my heart and stomach hurt to think about it.

Enough of that depressing stuff! After the conference ended on Sunday we drove up to Bob and Hilma's house for a nice dinner to celebrate Mom & Dad Kargoll's 56th Anniversary! It was a beautiful sunny day and Hilma cooked a great meal! Anthony had a great time spending the night there and terrorizing their two adorable little dogs, Radar and Bandit. That evening we went back to the hotel for our last night before flying home on Monday. It was a really good weekend between the information we learned at the conference, meeting new families and getting to spend a couple days with Fred's family as well. If you haven't already seen it, please enjoy the photoshow from our weekend! Just hit the "back" key if you want to return to the blog when you are done: Palo Alto, CA trip photoshow

Hope everyone is well and preparing for a haunting Halloween this Friday!!
Love,
Robin

Getting Ready for California

We are going to an Atresia Microtia conference in Palo Alto, CA this Friday to find out if Faith is a candidate for having ear canals created (atresia repair) and to meet a couple of the best doctors in the country for doing outer ear reconstruction. It's way too early to begin those surgeries, but it's a good time to be researching our choices and this conference is a great opportunity to learn about them directly from the surgeons. Plus we get to have a mini-family reunion with Fred's parents (driving up from San Diego), and his brothers and sisters-in-law, Bob & Hilma and Jim & Hue, who live in the San Francisco area. We will be celebrating Bob and Rosemarie's 56th anniversary while we are there too!!

In addition to getting to see Fred's family, we will also get to meet other families dealing with issues like us. I am especially excited to meet Cicily who is just 1 week younger than Faith and her mom Janalyn who started Cicily's Adventures blog and gave me encouragement to create Faith's blog and to start blending Faith's food. It's all the other families out there in the ethernet that have made dealing with Faith's issues so much easier by knowing we have never been alone in this journey and by having the benefit of learning from their experiences.

Prep for the conference and future jaw surgery:
In order to determine if Faith is a candidate for atresia repair, we had a CT scan done last Monday, Sept. 29th. There is a 10 point scale they use to determine if kids are candidates, called the Jahrsdorfer scale, named after a doctor who has been a pioneer in atresia repair surgery. We also need the scan for sending to the jaw surgeon (once we make that decision - see my earlier post on Jaw Reconstruction versus Jaw Distraction ). Since she needed to go under anesthesia for the CT scan, our ENT also tried to do a bronchoscopy, where he puts a camera tube down her throat to make sure everything looks normal so that when the day comes to decannulate her (remove her trach tube), that we know she has no other issues to affect her ability to breathe normally. He tried to do a bronchoscopy when Faith was about 6 months old, but could not get it past her tongue. This time he was able to see as far as the bottom of her vocal cords, but said that she is still an impossible intubation at this point and that she of course needs a jaw distraction to improve that. So, basically this served as a baseline tracking point to see how much space is gained from her first jaw surgery, whenever that will be.

Faith, as usual, handled the whole procedure without any complaint. In fact, the Anesthesiologist said she behaved like a 5 year old. :) We got Faith out of bed around 6am (about an hour before she normally wakes up) dressed and out of the house by 6:15 to check in at 7am. They took us back around 8am to prep Faith and they gave her a ton of stickers to keep her busy, which worked very well! I got to go with her into the CT room and hold her hand while they put her under -- I attached the tubing to her trach and I signed to her that it was medicine and that she was going to take a nap. She had no problems with it at all, and this is another one of those strange times when I am thankful for her trach. Many kids are absolutely terrified of going under by having a mask put over their mouth and nose.

I took a couple pictures of her day:

Faith busy putting stickers on her doll:

Faith showing off her 3-D butterfly sticker, I have never seen anything like it!

Faith's babydoll covered in cat stickers:

Faith still sleeping after the procedure:

CT scan results already and some GOOD NEWS!!!
So while I was busy typing this posting, I got a phone call from Sheri at the California Ear Institute (the host of the conference we are going to) to give me the results from reviewing Faith's CT scan which I mailed to them last week. I'm so excited I can barely contain myself -- Faith IS a possible candidate to have an ear canal made on one side of her head (on her right side which is more developed than her left). They graded her right ear at a 7 and her left ear at a 5, and they think the 7 may go a little higher following her jaw distraction. They recommended that we go ahead with implanting her Baha on the left since that will likely never be a good candiate for repair and then following her jaw distraction do another CT scan of the right and see if it goes higher on the scale. I believe even at a "7" they would be willing to do the surgery with a fairly high probability of success, but I will have to verify that when we talk to the doctors this weekend. I'm really excited about this because I was really expecting to hear, no she is not a candidate.

We now have a lot to think about because the surgery does not come with a 100% guarantee, in fact, I think I heard somewhere the grade on the scale correlates to the probability of success, meaning a 7 would roughly equal a 70% success probability. But, the thought of her having normal hearing, even in only one ear, means that she could hear while she is swimming or in the shower or at night when she is sleeping. While the Baha is amazing, it also has some drawbacks, including feedback when anything touches it (like a hat or laying on a pillow), maintenance of the surgery site for the rest of her life (but not unlike brushing your teeth or your hair regularly) and keeping a suppy of batteries handy and sending it in for repairs when it breaks - which we have been fortunate not to have to deal with yet. It is also emotionally hard to think of your child having a screw in their head with a small box attached to it and not worry about the teasing that may come with it. So, even though the good news is only for one side of her head, it is wonderful to know she has more than one option.

Well, this is way too long to expect you all to read, my apologies!!!

Love, Robin