Tuesday, June 30, 2009

Kylee Update #1

Hello Everyone,

We just wanted to let you know we made it here safely, on time, and with no problems. That was almost a first! The only problem was we did not know where we were going to stay... When we arrived in Seattle, we called from the airport and found out we did not get in the Ronald McDonald house. But, the hospital had helped us, in advance, find another place to stay at a discount, just in case. So, we were prepared for last night. Then we found out we were able to get in Ronald's today, so all is well. From today and till we leave on July 21st, we will be staying in room 375 at the Ronald McDonald House. You can call us there at 206-838-0875. However, you will only reach Art there late at night or early in the morning till Kylee gets out of the hospital. The address there is:
Kylee Hunter
Room 375 HOUSE A
5130 40th Ave. N.E.
Seattle, WA 98105

It will be easier to contact us at 206-987-2000 and ask for Kylee Rebecca Hunter's room. It is actually room G-3009, but they tell us to just have you ask for her name.

Some of you have already heard that she did not have to have an NG Tube today... Yeah! Kylee was so worried about that. We kept telling her the stuff they'd have her drink would taste horrible... just to prepare her since she has such a weak stomach. Just before we were going to go out for one last big dinner yesterday, I had the thought to call the hospital to find out what Kylee could or shouldn't eat. Well, when I called, the hospital apologized that no one had called me. Apparently, Kylee was supposed to have been on a liquid diet as of noon yesterday. Since, they didn't inform us of that, they said she could have a soft foods dinner and then she would need to drink 5 oz of magnesium citrate after dinner. So, off we went on a search for soup for Kylee. We ended up at the Rusty Pelican cafe. It was okay. Kylee loved her chicken orzo soup. She was so happy the liquid magnesium citrate tasted lemony... kind of like lemonade she said... We were so happy she felt this... since we had told her a long time ago to imagine all the yucky stuff she would have to drink would taste great. She drank it, slept all night, which was a surprise to us, and then spent 30 min on the toilet when she awoke. It couldn't have worked better. She was also able to receive her I.V. on the first poke, which was another miracle for Kylee's thick skin she inherited from her mom. She said it didn't even hurt that bad. She is such a brave girl.

We then went to the hospital where she had an ultrasound, a visit with Dr. Grady, and then she was admitted. Dr. Grady told us he thinks the surgery should only be 4 - 6 hours, which is half the time we thought it would be. So, that's great. He really thinks this surgery will be all that we want it to be. So, we are very positive and hopeful tonight that this surgery will work. His feelings along with all the prayers and good thoughts from all of you are comforting us greatly. Thank you.

At the hospital she was given the "golightly" to drink. Isn't that a lovely name? It's it like salt water and she had to drink at least a liter. She did without throwing up. That is why she didn't have to get an NG Tube. Go Kylee... We tried the cherry and orange flavor. I don't know about you but that was pretty good of her to drink cherry and orange flavored salt water. It is still working. The nurse's said almost all kids can't keep it down and receive it through the NG Tube in their nose. We were very proud of Kylee today.

When Art checked us in at the Ronald McDonald House today he found out that Microsoft had volunteered to serve a BBQ dinner at the House tonight for all the families staying there. So, I ran down there at 5 and picked us up dinner. We were very grateful to all those volunteers. There is another group volunteering to serve dinner tomorrow night. The Ronald McDonald House is such a wonderful place. If any of you ever want a place to volunteer... it is a great place to consider serving. There is a similar home at Sutter Memorial. I'm not sure of all the other places available in the area but they sure offer families comfort in times of need.

Well, as I sit here and type... Kylee is watchng t.v. and waiting to play on the computer. She is nervous, of course, but is in good spirits. Art is losing at sudoko. I'm going to try and figure out how to make this chair into a bed for myself... why I don't know... since I probably won't get any sleep... We'll see.. I could be wrong. So, for now we say good bye and thank you so much! We'll be in touch tomorrow and let you know how everything went with the surgery.

Have a great night!

Art and Rebecca

Sunday, June 14, 2009


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Wednesday, June 10, 2009

Please keep Kylee in your Prayers

This time Kylee woke up at 2 a.m. in pain. Art & Becky are currently sitting at Sutter Memorial waiting for Kylee's I.V. antibiotics to start and to have an ultrasound. Yes, she has another infection... pray it is cured before her next surgery on July 1st.

Thursday, June 4, 2009

Kylee's Next Surgery

Hello Family and Friends,

We are writing to let you know of our daughter, Kylee's, next surgery. She is now 10 and this will be her 10th surgery. She was born with a birth defect called Bladder Exstrophy. This is going to be a major surgery we are praying will be extremely successful. The surgery is scheduled for Wednesday, July 1st, at Children's Regional and Medical Center in Seattle near the University of Washington. We aren't sure what time the surgery will start, but it should be in the morning since it's scheduled to be about an 11 hour surgery. Kylee is scheduled to be in the hospital for 7- 10 days.

We are requesting prayers and positive thoughts for Kylee during this time. Right now, we are praying she will stay healthy and infection free. If she gets sick or has an infection or even if she gets exposed to certain diseases... they will not perform the surgery. We are trying to be positive that the surgery will take place and with that frame of mind we are praying the surgery will be successful and ask for your help with that... especially on the day of the surgery. If any of you belong to a church and can put Kylee's name on a prayer roll or something similar, we would appreciate it. Our church is also fasting for Kylee this coming Sunday, if you'd like to participate.

We appreciate all of you and all that you do to support our family in so many ways.

During Kylee's surgery, they will take some of her large colon and graft it on to her small non-functioning bladder... and create a large reservoir, if you will. The plan is to have this large reservoir keep the urine in it for longer periods of time than her current bladder which only holds about 55 c.c.'s. The success will produce considerably less U.T.I.'s and Kidney Infections and will hopefully allow for Kylee to self-cath through her mitrofinoff (stoma in her belly), every 4 hours instead of every 2 hours... helping her to not miss any more school during the day. If she only has to cath every 4 hours, this will really change her life for the better. Of course, we always hope it will help her stay drier too... but, that would be a bonus. The major goals are less infections and less cathing.

We will start sending surgery updates from the hospital in Seattle when we get up there. Let us know if you'd like to receive these updates. Kylee and Rebecca fly out Monday, June 29th and return late on Tuesday, July 21st. Art will fly up June 29th and return late on Sunday, July 12th. We are hoping to get into the Ronald McDonald House.

Thanks again for your time and prayers on our daughter's behalf,

Art & Rebecca (Becky) Hunter