Too Much Has Happened!!

Hmm, what should I title this posting? First it was going to be another update of Faith's Baha implants which are healing well and will be ready for her to wear her sound processors (the little aid she has been wearing on a headband since she was 2 months old) in about one more month. Then there was the stomach virus that got everyone but me for a solid week and almost landed Faith in the hospital for dehydration. Then it was going to be Anthony's 5th Birthday Party at the Bowling Alley and his party at home on his birthday, then Christmas, then January came and I found out I was getting laid off (which is official now, my last day of work is Friday, 1/30/09) and last of all it is going to be about Faith's upcoming Jaw Distraction that we have moved from this summer to next month because of me getting laid off. I promise I will come back and insert pictures from Anthony's Birthday and Christmas as those were very good days in a very difficult month!!

Unfortunately I really don't have time to write much now as it's already midnight, but just wanted to provide a quick update. I/we/no really just I figured we need to do the surgery now because I have 4 months of severance with pay and health insurance so it would be better to get it done now than try to find a new job now and try to take 5 weeks off work a couple months later. So, we are close to finalizing our plans to take Faith to Cincinnati Children's Hospital around the week of Feb 16th for her first major jaw distraction surgery. If it is as successful as we are hoping, it could result in Faith not needing to be trached any more (although this would likely take several months to a year following the surgery to do sleep studies and testing by capping her trach before making the final decision to decanulate). The surgery itself has three separate parts, the first surgery is to put the distractors on and cut the jaw bone, then we spend about 5 weeks healing, distracting (widening the gap 2mm daily so new bone will grow) and more healing before the second surgery where the pins will be removed and stabilization plates will be put in. About 4-6 months later, those plates will be removed in a 3rd surgery. From all the parents who have been through this before us we have learned this will be a month of hell -- it will be painful for her and she won't sleep much if at all through the nights during the middle phase -- but the results are worth it. We are not excited about it, but I am glad we finally are ready to go through this first step towards giving her a normal airway and better mouth structure for breathing, eating and learning speech. Speaking of Faith learning speech -- you should hear her now!! She is really starting to be very verbal and we are able to understand an awful lot of what she says, although it's very choppy right and context is critical. Her "thank yous" come out like "ank-oo" and most of her words come out primarily as the vowels in the word without the consonants. I really need to video tape her again before her surgery!

Well it's very late and I have to quit for now. I'm hopeful I will get some pictures uploaded very soon. Thanks for checking in and listening and commenting - the support we get from so many people really gives us a lot of comfort and strength!
Robin

BAHA surgery a success

Well Faith's Baha implant surgery is done and everything went very smoothely. We started the morning early, leaving at 7:30 am and checking in at 8:15. We spent some time waiting where I overhead the front desk saying a sign language interpretor didn't show yet and so I offered to sign for the patient they were checking in - kinda fun to be able to help out like that!

The waiting room at PSL day surgery:

After talking with the ENT/surgeon, the anesthesiologist and nurses, we changed Faith into her gown and me into some kind of painter/space suit and I pulled Faith in a little wagon into the operating room. Then I carried her over to the table and they let me put the anesthesia gas onto her trach while I was still holding her. I told her it was medicine and would make her fall asleep and within seconds she put her head on my shoulder and her legs quit holding on. Then we laid her on the table and I kissed her goodbye. No tears for her or me so that was nice.

Fred taking Faith for a ride in the Wagon:

Me in my painter's jumpsuite just before surgery:

Then Fred and I walked to a nearby Pancake House and tried not to think about the surgery. We got back and shortly Dr. Pashley came out and said everything went fine and gave us home care instructions until we go back next Tuesday. Then we were taken back to see her and she was already waking up. They let me hold her while she came out of it and it took some time for her oxygen levels to stay above 90% so we could go home, plus they only gave her the tylenol codeine in small increments, so she was in some pain. We got home around 3:30pm and were grateful that Ryan took Anthony to school and picked him up afterwards.

Faith just waking up from Anesthesia:

Faith a little out of it but not wanting to sleep:

New Baha implant with healing cap on:

Faith had another first today - totally unexpected! She has been sitting on the potty now for a few weeks whenever I change her diaper and today she PEED in the Potty!!! What a day!!
She was pretty overtired and fussy the rest the evening but now she is sleeping soundly and we're gonna follow suit. I will try to post some pictures tomorrow.

Thanks everyone for all the prayers and good thoughts, it meant a lot to us.

Love,
Robin

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