Kiera's is being granted a Wish!

Rio Grande Gorge

Kiera's Room

Longest Roadtrip to Scottsdale

Loving Spray Parks

River in Taos

Soda Dam

1st Carousel Ride at Cottonwood Mall

8th Birthday Party Brave theme with archery contest

As most of my friends and family are aware, I have transitioned to posting most family updates on Facebook. I am posting a quick update and year in review now because we are so excited that Kiera is receiving a Wish for a vacation to Disneyworld! We have prepped all summer (as seen in the pictures I have posted)by taking shorter trips to Taos and Scottsdale (the farthest we've gone with her in 8 years) in order to determine logistics of long distance travel with Kiera due to her oxygen and medical needs, and are now taking a big leap of faith to get her on an airplane to see her favorite princesses in Disneyworld and take her to see the ocean for the first time. In total this has probably taken half the year, lots of trial runs, and tons of phone calls to plan. We wouldn't be able to give this experience to Kiera without Make A Wish and their sponsors, and we are beyond grateful!

Kiera is HOME a little worse for wear

We got Kiera home last week on Wednesday and have been adjusting to life with a ventilator once again. The first two nights home involved at least 3 ventilator alarms in the middle of the night each night. Oddly enough, the transition home has been much more awkward than our first discharge when she was 1.5 years old. For people that have been using the same home healthcare company for 5.5 years, one would think they could get supplies ordered more easily without so many hoops and delays. The nursing agency has no sense of urgency in getting us nursing care, and mostly throws up roadblocks regarding paperwork for services she has been getting continuously for 5.5 years. I get that some things are new, but things like getting new prescriptions for Kiera's albuterol treatments shouldn't be such a huge hassel for them, when Kiera has been on the same Albuterol regimen continuously for 5.5 years and they have those orders on file!!! What did they do? Throw out everything the minute she was re-admitted and incur amnesia? My supply company, has changed their ordering process, and it seems to be taking at least 3 calls to get anything done. My case manager doesn't do much to help, but mostly irritates me. I am so tired of working with bureaucrats who haven't the first clue about patient care. I could do every one of their jobs better than they do it, but I am at their mercy, and they really enjoy asserting their power and pushing people around. Of course, the best part is that each company is pretty much the only game in town, so I can't shop around. The doctor has said Kiera can't go back to school. One doctor said frankly, "If you want her to die, then send her to school." Soooo...we are back to trying to get homebound educational services, but since Kiera uses sign language, services are limited. They only provide 2.5 hours a WEEK with a teacher, and Kiera is prime for learning to read. I love her ASL charter school and am so bummed she won't be able to keep going.

Kiera has decided she is a Pirate!

I believe we have now watched "Elmo and the Bookaneers" at least 100 times. Is there an award for that? Kiera has rediscovered a love for Elmo and pirates. She's been wearing a scarf on her head every day to pretend she's a pirate and is in love with pirate sea chanties. I think the love of pirates is actually behind her interest in Sponge Bob which was the theme of "Kiera's 7th Birthday Party Hospital Fun Time Wow." Kiera is also kind of diggin' her climber crib with the canopy (to keep her from escaping and getting hurt since the nurses can't watch her every minute). I think she thinks it's a fort. She likes to push us out of her crib and raise the rails at night when we are trying to say goodnight and give her a kiss...kind of like "Get out of my room, mom!" We might have to get her some kind of canopy for her bed at home. I think it amuses her. In general, she is in good spirits and coping pretty weel for 3 months of being in a hospital room. They are weaning her vent settings to CPAP for 6 hour stretches twice a day. Maybe we will be able to wean her to an HME during the day and ventilator CPAP at night. That would at least maintain some of the mobility she is used to. It is irritating that in order to get discharged from the hospital I will be required to get re-trained on the LTV ventilator, even though I operated the thing in my home for 3 years and could probably train the trainers at Apria. On a different note, there is always a dark cloud over all of this. When I got married and the boys were 8 and 10, I thought I had joined a family, that my children would have older brothers who would always be there for them. Apparently that was a lie, and I was a glorified baby sitter,tutor,cook, and chaffeur. My stepsons, soon to be 20 and 22 have failed at basic human compassion. I am extremely disappointed. They are so selfish they couldn't figure out how to come to her birthday party that we had to delay because she was in a coma on her actual birthday. I just can't believe they are so absolutely uncaring and cruel. They have only visited once in 3 MONTHS(mostly because I made them), and they didn't bother talking to her. Who doesn't visit a 7 year old girl in the hospital on a ventilator on her birthday, especially when the girl is your sister? The hospital helped throw the party. Girl scouts who don't know us came by with gifts and get well cards the other day, just because. Kids at Kiera's school sent cards they made. Children everywhere are taught to love their neighbor. I grew up knowing that we should minister to the sick. And my mean stepsons can't reach out to their sister when she needs them. How can they be so morally bereft? Kiera will not be able to count on them if something ever happens to me. (which is ironic because the stress over them is probably what will kill me). I hate to think of her getting sick like this when she is an adult and waiting alone for her brothers to visit who never come. Somehow they missed that part of growing up and becoming aware of other people's needs and feelings. God help them if they ever have kids.

Catch 22

Kiera is looking and feeling much better, but on the hospital ventilator at relatively high settings. So we are in a very confusing position of being happy that she is feeling better even though it is only with medical assistance that will continue to keep her in the hospital. Everyone making conversation with us at the hospital will say things like, "You must be happy she's looking so much better." It is hard to communicate to them, the difficulty of being happy when you know the very reason she is better is the exact same reason she can't come home. She is getting stronger while on the vent, so hopefully she will make a better transition to the LTV next week after more recovery. She walked with assistence 2 laps around the unit (ventilator in tow) on Friday and sat in a little chair we brought about 3 times per lap. We are waiting on some AFO's to help her ankle support. There are some positive changes. She has her mad puzzle skills back and is playing a little more creatively than before. Her spirits seem better now that she is back to doing more normal things. She is all smiles when we come in to see her and up to no good. The nurse caught her standing up in her crib the other day (a jail in order to keep her from climbing out). She had pulled the exam light down, turned it on, and was shining it out into the nurses's station. Then the nurse came in, and said sharply, "Kiera, what are you doing?" Kiera plopped down immediately. Then when the nurse turned her back, Kiera stood up, turned off the light, and then sat down again...like she was trying to cover up the evidence of her indiscretion. She is taking extreme interest in helping with her own health care, and is showing a little interest in food. I'm working on getting some feeding therapists in there to work with her.

Starting Month 3

We had another care conference yesterday after putting Kiera back on the hospital ventilator on Monday. It looks like she will be at least another month in PICU minimum before getting to come home. After being on the LTV home ventilator for 2 weeks, it was just not ventilating her sufficiently. She was unable to breathe off CO2 effectively and her levels were much too high. She just isn't ready. After 2 days on the hospital vent, her PCO2 levels which were in the 80's are now down in the 50's (40's being normal). Unfortunately, this means that the saga of daily hospital trips continues. They also moved us to another room, as per protocol for infection control, so we lost our beautiful windows in the corner room. I'm not totaaly sure how I've pushed through for 2 months already, and a 3rd month is daunting. Poor Kiera must be so miserable and pent up. There's only so much to do in that room on a daily basis. Like Rapunzel, she can "read a book, or maybe two or three, add a brand new painting to her gallery, or brush and brush, and brush her hair." That, and jigsaw puzzles, playdoh, and Disney movies can only go so far. The hospital is definitely no Disney vacation.

Wrong direction...eek

Little worried. Kiera has been on the LTV since Saturday, but her PCO2's are slowly creeping up. 50's on Sat and Sun and now 66 today. I hope we don't have to go back on the big vent but won't be able to talk to doctors about it till after work. :(

Venting and Ventilating

Kiera had PCO2 of 46.5 today! Nice. So I guess she's "ventilating" right now. They are weaning vent settings a little. Hopefully we can try again to switch to an LTV after an unsuccessful attempt on Wednesday which resulted in PCO2's in the 80's. Ick. CT scan scheduled today to check out her pulmonary tree. Porta-Cath in and working. Kiera is in a crib in order to keep her from trying to jump out of bed (since if successful, she is still unable to stand on her own.) She did try walking with much assistance and a walker about 20 feet yesterday. I need her home ASAP. Two months of this has been worse than the year and a half when she was a baby. Most parents couldn't stand letting their 7 yr old have a sleepover at a friend's house more than 1 day in a row. Now my turn at "venting." As many of you know, I am a high school teacher. I can't help but be extremely frustrated with the education system right now. If you think of your favorite teachers when you were in high school, I guarantee that if they haven't retired yet, they will be lining up at the door in the next few years. Great teachers who taught us all to be independent critical thinkers and passed on a passion for learning will leave into obscurity before they are really ready because our government doesn't want individuals any more. They want us to push paper and generate numbers and never think outside of the box they have created. The teachers I modeled myself after would never tolerate what is happening, and they taught me well. The people who will suffer are our children. The one thing being left out of the entire assembly line system is the chance for children to try and fail and try again. We have locked them in to having to hit educational milestones by arbitrary deadlines like a birthday. We don't allow for any kind of developmental delay or varied pace. They all HAVE to have 4 years of math to get a diploma which HAVE to include Algebra I, Geometry, and Algebra II, and an upper level course above Algebra II; levels that some kids aren't developmentally ready for till their 20's. We have tested, them over and over and over again, long grueling tests that most politicians AND administrators couldn't pass, and we wonder why our drop out rates are so high. Plus, we give them less time to process the information, in 100 minutes classes where we have to fight to keep their interest piqued long after most adults would have given up. There is more pressure than ever before on families to make ends meet, and now our children are bearing the brunt of the pressure to succeed, even if their aility or interest lies elsewhere or they just need a little more time. We aren't giving kids options for their future. It's all or nothing, placing their entire self worth on exams. Our parents didn't do that to us. We grew up knowing that a test was just one tool, that it didn't determine our potential or worth. We had room in our high school curriculum to fail a class one year and still be on track to graduate without having to go to summer school. We had room to breathe... and think... and plan... and grow. I think about this a lot when I see parenting magazines that have parents concerned about the age of crawling, walking, rolling over, etc. I have a child who learned to walk when she was 3 and is now re-learning the same skill at 7. She knows ASL but does not talk. She is still in diapers and does not eat by mouth. She has indomitable spirit and a strong will to succeed and grow, but at her own pace. She has missed 8 weeks of school due to illness. She is not where the other kids are in some skills, but she can do jigsaw puzzles in 5 minutes flat. I want her to he happy and healthy, and get to do the things other kids do, and I really don't care if she does it by the deadlines the government has imposed on the educational system. When she is old enough to understand the test scores and deadlines, I want her to know that she is a wonderful person with a bright future, and that just by getting there on her schedule, she has achieved more than those for whom it came easily and "on time." I do not want her to live in a world where she will feel like she's not good enough. (Worse yet, we are putting are teachers in a position of feeling like nothing they do is good enough on a daily basis). If this is what I want for my kid, I am sure it is what most of us want for our kids. Standards are great! Competition is fantastic! Failure should be expected, and there should be a path for recovery and alternative timelines for a happy future.