Kiera's back at home

Kiera was discharged yesterday, and seems to be getting back to her old self. Mommy is still getting over her bronchitis, probably inspired by the same virus that gave Kiera pneumonia. Daddy got it, but mostly had a sniffle for a few days. Just goes to show how much of a problem a sniffle can cause Kiera, so keep vigilant if you are visiting this winter. No sniffles allowed.

Fallout from this admission, or maybe just bad timing, is that Kiera is practicing her separation anxiety. Every time I leave the room she cries. I even stepped behind the couch to get her meds this morning, and she was lying down and couldn't see me, so she sat up and cried. I think it was particularly hard for her in the hospital because I stayed away two days while I was sick in order to keep her well, but that's impossible to explain to a 2 yr old. I had to sit and cuddle her most of the evening last night. Thank goodness for Grandma who visited while I couldn't.

Funny story: After we called the charge nurse while we were on our way to the hospital to admit Kiera last Monday, we hung up, and she had to call me back on my cell to get some other information. She didn't have to use caller I.D. because she has my cell number memorized. You know you've been in the hospital to often when you not only have the hospital's direct line committed to memory, but they've memorized YOUR number. :) Now THAT'S customer service!

Therese

Kiera's perking up...

So I think Kiera is starting to feel better. I think I caught whatever she has Tuesday, and Jer might be catching it now. Last night we went to see her, and she stood up in her crib and played our kissing game. I kiss her, she pushes Daddy and Mommy's faces together to make us kiss, then Daddy kisses her. It's quite entertaining. She also LOVES Eskimo kisses. She thinks they are hysterical! We played ball in her crib and read and sang songs. So, I think her bug is passing. She's still on the 840 vent, and they are slowly weaning her settings and trying to back off on her nebs which she has been getting every 3 hours. My earliest guess to get her home would be Saturday, but I'll have to pick some brains today.

My real dilemna is that my husband thinks this is a great opportunity to help him paint our new restaurant. Thank God I was sick Tuesday and Wednesday! He's going to make me do manual labor. :( I did get 2 loads of dishes and 2 loads of laundry done yesterday and was able to spend significant time helping Mitch with his math. It was weird, though, being in my kitchen. I kept feeling like I should be listening for the ventilator in the other room and going back and forth between the two to check on Kiera. It's definitely too quiet around here without the vent constantly going. I certainly understand "empty nest syndrome."

Therese

Back in the P-I-C-U (a lesser known song of Billy Joel)

So, we admitted Kiera tonight. She had such a rough day all day, that it seemed the best choice. Of course, we will have to catch up on the Heroes premier later. Thank God for DVR. :) Once we got her on the hospital ventilator (the 840) she actually improved tremendously. Hopefully, this will just turn out to be a 72 hour tune up. It's actually been 3 whole months since her last pneumonia. Not a bad run. Her x-rays show an obliterated lower left lung (which has traditionally been her good lung) and what appears to be some viral activity in the right central as well. I asked them to hold off on the N-Balm (spelling?) lavage (a deep lung culture) and any I.V. attempts to see if this is just viral and passes with better ventilator support. I feel like the lavage last time contributed to escalating the pneumonia instead of helping. It will be nice to get a nutrition panel, blood gas, and other lab work that is tricky from home. Since she slept most of the day (as best as she could) she was wide awake when we left tonight. Luckily Elmo and The Little Mermaid have replaced us as parents, and we left her, unnoticed, while she watched her programs. :) She'll probably be up a while. She even got her old corner room. Yippee! I really hated to take her in, but she was limp and pale, and we had pretty much maxed out our bag of tricks here at home. I guess this is the beginning of us becoming even more reclusive for the remainder of the winter. It makes me nervous about her eye surgery scheduled for October. Eek.

Love,
Therese

Sick again:(

We are not amused. We started inhaled antibiotics this morning. I was so excite Saturday night because Kiera drank 15 cc's(about 1/2 an oz) of milk from a sippy cup! This is such a BIG deal! Then Sunday morning she woke up throwing up a cheesy looking product. So I decided maybe cow's milk isn't for her. I tried Similac at dinner Sunday, but she wasn't really in the mood and wouldn't take it. Now, this morning around 3 am I had to suction her regularly all night, about 12 times between 3 and 6, and then the nurse came at 6AM and suctioned her 12 more times by 10AM. We've had to bump her O2 to 5-6 liters. I want to think she's just sick, but I'm worried that she may have aspirated the milk and gotten pneumonia from it. I really want her to be able to drink, but it seems like she gets sick every time we try. I just want to cry. It's so frustrating to not be able to do something as normal as feed your baby.

Therese

Kiera Finally Did It...she decanulated! Whee!

So...now we know how that works. Definitely, Kiera's new found mobility is in direct conflict with her 3 foot ventilator circuit and vent stand too heavy for her to pull with her. She was at the rope limit and stretching to get something (that she shouldn't). She toppled, decanulated (ie. trach tube popped out, inflated balloon and all), unplugged SAT probe (so I'm not sure if or how low she desatted), and pulled out her G-tube (again balloon inflated), all simultaneously. It probably only took about a minute to get her recovered (maybe 2), but it seemed like longer. The obturator on hand that came with her trach seemed like a good one; however, in this type emergent situation, it bent and made things particularly difficult. There was lots of blood everywhere from the decanulation which made it look scarier. I don't think her SAT's were ever too too low, but since her plug to her probe had come undone I can't be certain. Her lips didn't get too dusky though, so I suppose maybe her SAT's dipped to 80's or perhaps 70's. Of course, she was crying and pissed off which made her red in the face, so that might have been hard to read. The best part was I got to do this by myself. Jer was at work. I did have one of my consultants here who I asked to help hold her hands down, although in the scurry to help I had the trach back in by the time she got to our side. That was certainly an initiation into the wonderful world of a toddler with a trachiostomy. Poor thing (my consultant) got to witness some colorful language on my part to say the least. I was fairly calm and collected until Kiera started fighting me and the obturator was bending. Then foul language seemed the appropriate response to get us through it. :) I am yet again aware of how skilled my nurses need to be. I am so glad to have the PICU nurses that I have because this is risky business.

On a lighter note: Kiera's mouthing of the word "Hi" has seemed to evolve into sticking her tongue out while saying it...kind of in Gene Simmons fashion or like an "Ack" from Bill the Cat. It's pretty funny. She's signing a lot more now too, and loves playing "This Little Piggy." She hands you her toes as if to get a pedicure.

Kiera also had a hearing screening yesterday and did pretty well. She shows a slight hearing loss in her left ear, but that may be attributed to the margin for error, so we just watch it and go back in 6 months. As it is, it wouldn't be something to correct anyway. She definitely fought like a bear to keep them from putting anything in her ears. She would have fought less had we been pulling off her toenails.

Love,
Therese

Kiera has AMAZING Ball Handling SKILLS!

We were playing ball yesterday. She clearly wants every person in the room to have a turn, even if they seem uninterested in the game or if she has to find a way around her ventilator to get it to them. :) She does the neatest thing and rolls the ball up her side to change direction and roll it to someone else. I think she's pre-WMBA. :) She's BRINGIN' it.

I'll try to upload pics soon. I'm trying to finish my stupid taxes still between messing with a finnicky feeding pump, reconnecting vents, etc.

Therese

Okay, no rock concerts for Kiera.

So we took a chance and took Kiera to a McCain/Palin Victory Rally at the convention center. This is the first time she's been in this big of a crowd. We've never even been to the mall or a full church with her. She did great in the hour and a half with just the crowds and music. The big thing that was hard for her was the unison applause and cheering. She cries sometimes at home just when I laugh at the TV loudly or suddenly.When actor, Robert Duvall, came in and everyone cheered, she cried. (I don't think it was a critique of the movie "The Prophet.") Then when speeches and cheering started I had to hold her in the Hip Hammock (Thank God and my friend Angelina for the Hip Hammock!) and hold her to my chest with my hand over her ear. It was a very interesting outing. We ended up standing next to 2 nurses, which was comforting, and a man whose daughter was trached at 3 months and on a ventilator 17 years ago. He was so cute, asking about the new styled travel ventilator that they didn't have then and mentioning that the suction cathetar hasn't changed. God does watch over, doesn't He?

We suctioned her twice while there, fed her which resulted in her G-tube pulling out so we had to reinsert it while bumping O2 because of a simultaneous desat, and changed a diaper on a chair (the only normal task to most, but at this point not much different than the previous 2 for us). We also had to be creative about access out of and into the parking garage whose one working elevator was hard to find going in so we carried her stroller down some stairs and wandered through the empty Galleria, passing an out of service elevator and an out of service escalator, till we found a different elevator. Then upon leaving, we found the garage elevator and wished we hadn't since it smelled like urine. Oh, and I almost forgot, we gave her a nebulizer using the bagging tank in the car, while driving and pre-ordering pizza on the phone. Then we went to dinner as a family at Dions, and everything timed out perfectly. We packed a little extra in the way of O2 and battery power since we didn't know what to expect, but overall, it went incredibly well. I even had some granola bars for my boys and water bottles. We Rocked this thing!

Feeling Good.
Therese

Make Way for McCain!

I really enjoyed the McCains' speeches last night too. I particularly liked the videos about each of their lives. I had no idea that Cindy McCain founded and ran the American Voluntary Medical Team, and she led 55 medical missions to third world and war-torn countries in their 7 years of operation. Their daughter, Bridget, was one of Mother Theresa's orphans in Bangladesh with a cleft palate while Cindy was there with Operation Smile. Cindy currently serves on the Board of Directors of Operation Smile. One of Kiera's nurses and I think one of her RT's in the hospital actually volunteer for Operation Smile. It was such a cute story about how she fell in love with Bridget and brought her home, and when she got off the plane with the baby, John said, "Where is she going," and Cindy said, "Home with us." He responded, "I thought so."

McCain's speech definitely carried a theme of personal responsibility for community service and making our country a better place and in diminishing the horrendous size of government and pork barrel spending to get government out of the way of the amazing things the American people can achieve. I definitely think McCain and Palin will be just the thing our country needs. We need to stop relying on government to solve all our problems. He also said that (I think I remember it word for word but forgive any paraphrasing) "Education is the number one racial issue in America." Education is the key to overcoming poverty and opening doors for people. We get nowhere by increasing social programs that just keep the poor in the same place.

I am very excited about taking Kiera to see McCain and Palin at their event tomorrow. I hope she's feeling a little better. She has a cough and a ton of secretions. I think she caught it from her brother. Hopefully, after another day of treatments, we can get her back to a more reasonable level of care to take her on an outing. It's tough to think about going to an event like this when she might need a lot of medical attention throughout.

Therese

Preemie for Palin!

(click on title for Palin speech video)

So Kiera's doing pretty well and getting into EVERYTHING for a kid who is constantly on a 3 foot leash.

What I really want to blog about today is how EXCITED I am about the McCain/Palin ticket! WOW! Did you see Sarah Palin's speech last night? If you didn't, you owe it to yourself and our country to watch it. If I did this correctly you can click on the title of this article to go to an CBS news video of her speech. I think it's 38 minutes. I watched Palin's speech TWICE yesterday. I have never in my life been inspired to watch ANY political speech a second time. I feel like she and I have so much in common, and that she is a candidate who really understands me. She is a STRONG and CONFIDENT woman. Plus, she is a mother of 5 with a 4 month old who has Downs Syndrome. She made a promise last night that when she's in the White House we will have an advocate for children with special needs. You know with a special needs child, she's got heart, and she's a fighter.

In addition, I came away feeling like McCain and Palin are the people to lead us through tough times. She told a story of when McCain was a POW, and how after interrogation he would return and give a wink and a thumbs up to a fellow POW (present at the convention) who was watching to let him know they would get through this. That's the kind of leader who is thinking of others and not himself, who is there to serve and not be served. Plus, if he could handle torture, I'm sure he can handle a White House press conference. They won't tax small businesses (like our restaurant) to death like Obama plans and put more people out of business and their employees out of work. What kind of economic plan is that? Did you hear this morning that retail sales are down at major department stores? If business is already having a decline in sales, how is taxing that business MORE so they keep LESS of their income going to stimulate our economy? She also has clear experience in the fuel industry and plans for drilling and utilizing alternative fuel sources. They will kick start our country.

The neat thing to think about, is that getting Sarah Palin into the White House as VP gives her a chance to train as second in command for 4 to 8 years so that she could be a viable candidate for the first woman president with actual experience under her belt in running the country. It's interesting how the National Organization for Women has clear ideas of which women they support. You apparently can only think one way and be pro-woman. Interestingly enough, the first feminists, Elizabeth Cady Stanton and Susan B. Anthony, were pro-life and wouldn't be considered feminists by today's standards either. When I hear comments from the other side that Palin should stay home and raise her baby, it becomes very clear who keeps the glass ceiling in place. I guess the Dems only want CERTAIN women to rise to positions of power in this country. They are all talk. They really just want the women they think they can CONTROL.

Most of all, I am feeling positive and secure about the future, and I hope you are too! If you're not, then maybe you should reconsider who you are voting for for our future. :)

Love,
Therese