Happy New Year 2008!

Good news for the new year! We are preparing to bring Kiera home to OUR HOUSE in a week, January 7th! What a concept! We are excited and nervous. I have been frantically cleaning and organizing. Home health care equipment should start arriving this Friday, and we have things to do every day to make this happen. She is already on her home ventilator and doing pretty well. She has a touch of an infection at present but will hopefully shake it off with some antibiotic nebulizers and still be able to come home as scheduled.

Be prepared, as we have been, that Kiera will probably get sick many times and be readmitted to the hospital frequently. But this is a first step. We hopefully will have 40 hours a week of nursing coverage, but most of the care will be done by me and Jer. Kiera will be very high maintenance for a while.

I will have to schedule visitors for Kiera very sparingly since it is still RSV season. We may have to become recluses until Easter which will be difficult for both Kiera and I since we are such social butterflies.

Thanks for your support this year. Cheers to a great 2008!

Love,
Therese

Merry Christmas 2007!

The Wright Children Last Year Christmas 2006
Kiera was approx 7 lbs, still intubated, and in NICU.
The Wright Children This Year Christmas 2007

Kiera is approx 20 lbs, trached, has overcome some life threatening days, been to Houston and back, and coming home soon on a ventilator!

See how far Kiera has come! Thank you to many dedicated health workers and family members, who especially worked hard even on holidays and weekends. Have a very Merry Christmas!

Love,
The Wright Family

We took a wrong turn at Albuquerque!

Hi All! We're "home." Or at least back at Presbyterian, our home away from home. :) We got back yesterday morning. The flight left Houston at 7:30 am, and everything went relatively well. Kiera is on an LTV, home vent, and at the same settings she was on on the 840 vent in Houston with only a 2% Oxygen increase. Yeah! It was a busy day, and everything moved so quickly, I barely had time to pack and clean my room at Ronald McDonald House and get home, much less to update the blog. So....I apologize if I've been in town for a day, and you just found out now while reading this blog.

Everyone at Pres was so excited to see Kiera. Nurses who weren't even working stopped in to see her. She is so happy. She had been crying the last few days due to big molar teething, or something else bugging her. But she has been great since we got back. You can tell, she feels so at home and missed everybody. The PICU staff even prepared our old corner room for us! I hadn't realized till the ambulance was pulling up at Pres how stressful it had been to be in another state for 5 weeks. I was just taking each day at a time, and 5 weeks was over before I knew it. I hadn't been away from home for that long since I was an exchange student for 6 weeks in high school. I really love Albuquerque.

Now, I have about 4 days to Christmasify my house! Ack! I may settle for the lovely wreath on our door from Robin, the 32 in tree I got for Kiera's room. and our stockings I made at RMH. For those who know me, you know how HUGE a compromise this is. :) Well...maybe I can dig out my Nativity Scene and an Angel or 2.

Kiera might get to come home home as soon as the second week of January. We just need God to provide the right home health care nurse and no spells on the LTV for a few weeks to a month.


Love,
Therese

Happy Birthday Daddy!

Kiera has to wish her daddy a long distance birthday today. She wore her special party dress for the occasion. We miss him so much, but hope we will come home this Wednesday or Thursday. She has a bit of a stomach bug today and has been throwing up much of her food. Hopefully it will pass with some cuddling.

Love,

Therese and Kiera

Leaving Houston...Not Quite

God's Delay is not His Denial. Yes, we "SHOULD" be back at Pres by next week. We were supposed to go back today, but the "plan" changed. Kiera got a fever yesterday and her pic line got infected so she has started antibiotics. We were ready to go at 7:30 am and the trip got scrubbed. She's doing okay besides the bad blood work, but the crew didn't want to risk her getting sick in flight.Sooo... we are delayed till at least Tuesday next week. Jer and I were very dissappointed. He was so excited for "his girls" to be home.

It was a very rough day. It took us 9 sticks to get a working I.V. in her before removing the pic. Her veins have become extremely difficult to work with after 16 months of this. It was so hard to watch her cry and get stuck, and cry and get stuck, and cry and get stuck over and over. I started crying during the last one and could barely stand it any more. Unfortunately, she needs the antibiotics to fight the infection, but how do you tell her that. Hopefully, she will fight it over the weekend and be fit to fly next week sometime.

On a more fun note, I gave her a few licks of a cherry cane after her ordeal and she really enjoyed it. At occupational therapy time, she ate 15 cc's of vegetable chicken baby food stage 2 and LOVED IT. She is really doing well with the mechanics of it, although her tongue moves kind of like a giraffe when she eats. We rolled a bit on a mat on the floor, although the final push over her shoulder to her belly is still an obstacle.

Love, Tree

We'll be home for Christmas!

Kiera is doing great! Her vent is at a rate of 26 and holding, pressure support of 14, and O2 of 30%. We haven't tried to ween the rate and pressure support lower, as per my request and the agreement of the pulmonary team, because they tried 24 twice, and I felt she didn't like it. I figured we may have to go up on O2 once back in ABQ and didn't want them to go too crazy and then have to backtrack in ABQ. There's always time for weaning there after we're on the LTV. They are shooting for sending us back to Pres next Thursday the 13th! Mom and Dad cancelled their return flights and are just going to drive the car back for us. Kiera got a G-tube button (actually a Mic-Key to be technical) today and had a swallow study which went well with no aspiration. Now she can have therapeutic tastes of puree baby foods stage 2 and nectars. Tastes are really only about 10cc's or 2 teaspoons, but it's still fun to get her bibs dirty. She did not care for the her first taste of carrots, but fruits seem acceptable to her highness.

See y'all soon,
Therese

Quick Update...

Of course, Murphy's Law prevails, and right after I tell how fantastic Kiera is, she has a bump in the road. However, today she is back to her bubbly self. Thursday, her vent was being tempermental and the heat sensor wasn't working properly which lead to over heating the circuits and creating an unusually large amount of water condensation in the tubing. It followed that the water in the lines went down her trach tube into her airway and caused a little ruckus. Anyway, all is well now, but I think Friday and Saturday were recovery days for Kiera (AND MOM). I refrained from taking out a few staff members, and all is right with the world now. Merry Christmas! (my friend, Bern, knows what I mean) Where is a good pair of ruby slippers when you need them?

Swallow study on Friday didn't get completely done. Kiera was a little hestitant to let strangers put fluids in her mouth...I wonder why? I'll have to see if they will reschedule and let me administer the fluids. She did okay with purees though. There are "rumors" of changing her GJ to a G tube button tomorrow; however, this is all from weekend residents, physician's assistants, etc, so I'll wait till tomorrow to see what really happens.

Tree