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

Merry Christmas 2007!

Wright Children Last Year Christmas 2006
Kiera was approx 7 lbs and still intubated in PICU.


Wright Children This Year Christmas 2007
Kiera is approx 20 lbs, trached, and close to going home 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

A True Christmas Miracle

I am so glad that Jerry and I didn't let fear or nay-sayers keep us from coming to Houston to investigate the lung transplant option for Kiera. There are some who might have given up after transplant seemed the last option. We just took one step after the other to fight along side Kiera. Now it seems that getting out of our comfort zone so another group of eyes could start fresh with Kiera has resulted in finally facillitating a miracle for her!

Today, Kiera's ENT doctor said that the bronchoscopy of her trachea below her tube showed a "NORMAL" healthy trachea! I said, "NORMAL, normal?" and he repeated it for me. All the dilation and scarring of her trachea is gone after just two weeks with the Shiley trach tube. Her vent settings are great, rate of 26, pressure support 14, and O2 requirements 35%! She's eating well, and I looked at her belly this afternoon and it looked flat and normal instead of distended as it had been for quite some time. She's got abs of steel now and a belly button! She's 20lbs 7oz. She's even been antibiotic free since the 12th! Her doctors said they wouldn't have dreamed of telling me to hope for the kind of turn around Kiera has had. There was really no reason to think that the shorter Shiley trach would have been the answer for Kiera, but it seems to have done the trick.

They will be weaning one of her pulmonary hypertension meds, bosentin (the expensive one), and adjusting her feeds to 5 a day instead of the current 8. Her swallow study is scheduled for Friday. The most EXCITING part is that they think we will be able to transfer back to ABQ on December 18th!!!!!! Then we will work on being discharged from there. She'll still come home on a ventilator and need lots of care, especially with her trach till she weans from the vent. Then we will have to explore airway surgery for her before we remove the trach, although I understand that the surgery is not too complicated and is usually a one time thing.

Jer and I are still in awe. We don't even know how to take this information since it seems unbelievable!

What a Christmas Miracle!

Thank God!

Another Miracle: I got Kiera to wear a hat for about 20-30 minutes before she pulled it off! WOW!

More Baby Steps...

Kiera had a pretty big day today. She tried her first taste of baby food! A taste means she only had a total of maybe 2 teaspoons, but she did well with it and didn't seem to aspirate any. She had peaches and smelled like dried peaches the rest of the afternoon after getting it all over her hands and face. She finally got to use one of her plethora of bibs! Of course, it was an experience since she has gotten to the stage of wanting to feed herself and grab the spoon without ever having been at the stage where she lets someone else feed her first. Kiera will have a swallow study ordered soon as well. On the food front, she also had a whole day of G-tube bolis feeds, 100 cc's every 3 hours. In layman's terms: she got fed in her stomach instead of her small intestine in large doses every 3 hours instead of small doses continuously.

Kiera also "almost rolled" from her back to her belly. She definitely got as far as rolling from her back to her side, and what was significant was that she pulled her knees up to her belly to do that. She did this on a blanket on the floor while I played with her, and I think this was the first time she's done that movement with her legs.

Yesterday she was banging her stars from her stacker together to make noise. We read all her books this afternoon. She is absolutely fascinated with the hospital TV remote on a cord. The speakers for the TV are on the remote so she doesn't realize that she should look at the TV while videos are playing. Instead she looks at the remote and wants to play with it. The fun part will be when she finds the "call nurse" button. She's already been turning the TV on and off.

Kiera has a bronchoscopy scheduled tomorrow around 2ish to see how well her airway has healed since the trach tube change almost 2 weeks ago. We will know more about her status after the bronch. I've been trying to upload videos of her, but am having trouble here at the hospital. Maybe there's some kind of blocker on the server. The RMH internet is supposedly fixed, so I'll try there. I have a great one of her giggling with daddy.

By for now!
Love,
Therese

Happy Thanksgiving!

A little late on the post, but I wanted to do this with pictures. I hope you all had a very THANKS FILLED Thanksgiving. We are very thankful this year for such a great month with Kiera. She has been improving day by day, and Daddy and I had such fun with her these last few weeks and no scary spells. We are thankful that she is starting to be able to sit by herself. We are thankful that she found her feet and that she laughs hysterically every day at 5PM for no apparent reason. I am thankful that my husband was able to be here for 10 days with my brother's help. I am thankful for my family and friends and their encouraging phone calls while he is back home working. I am thankful for meals that have been prepared for me so I don't have to cook at the end of a long day at the hospital. I am thankful for the internet in helping me stay connected with everyone. I am thankful for the COUNTLESS medical professionals who have worked night and day to help Kiera heal and have a happy life and eventually come home. I am thankful for blood and organ donors and pharmaceutical companies and researchers and cab drivers and insurance companies and every person who has ever paid an insurance premium and not needed care so that our insurance would be able to cover Kiera's care.

I think, more than any other time in my life, I have become very aware of how much there is to thank God for. We had a wonderful Thanksgiving Dinner at Ronald McDonald House in Houston provided by some very generous volunteers and surrounded by so many people who truly understand the value of our children. The majority of guests at the house have children undergoing cancer treatments or babies in the NICU and PICU undergoing struggles to survive. In the past 15 1/2 months, I have truly come to appreciate the biggest lesson I remember from Catholic school, that to truly live as Jesus did, we must pick up our cross and carry it without complaint. We all have crosses to bear. Some of us may have already been introduced to that cross at a young age, and some may still be waiting to discover theirs. Some of us have our cross and haven't embraced it. Some of us might be blessed with a life with very little suffering, but maybe their cross is that of Simon whose job was to help Jesus carry his cross. I know this is all more Easter themed than Christmas, but I think to celebrate Jesus's coming, we need to remember that he came into this world with a cross to bear. We all need to identify our mission in this world and not just say we are thankful, but prove it.

Oh...and I'm also thankful for digital cameras and cell phones!

Love,
Therese