Friday, July 24, 2009

Kylee Update #6

Hello Everyone,

Well, this should be my last update for quite a while. Sorry, it's taken me till now to let you know about last Monday. Kylee's surgery went fine. It was more of an outpatient surgical procedure I would say. That said, Kylee hasn't felt well since then. She was very tired and sore afterwards... now grant it she did not get the same type of pain medication as she did during the first major surgery. She received a couple doses of morphine and then she had some occasional Tylenol or Motrin from me. I should have probably kept up better on that. The surgery was delayed 2 hours so she was really hungry again.

Afterwards, Dr. Grady said he thought it went really well. He put a lot of pressure on the d-flux and nothing leaked. So, after they brought a very tired Kylee out to me who was in a lot of pain, she said she was leaking... I thought, "You’ve got to be kidding me." I checked and she did leak just a little. I'm hoping it was just a fluke thing or drainage from surgery. Since Monday night she has leaked a very little. I figure I'll take a little compared to a lot like before. So, that is a good thing. Monday night she was pretty uncomfortable. She awoke Tuesday feeling awful and extremely tired. I thought of all days... since we were trying to check out by noon. She had been fine for over 2 weeks and THEN the day we're leaving... I thought she'd bounce back faster from the minor surgery. But, I'm thinking she was VERY sore inside and just didn't get enough pain medication and everything might be catching up to us.

We did leave Tuesday... Kylee only threw up once. We came home and have been excited to see our family. Art's sister and her children are also here visiting till next Monday. We celebrated my birthday yesterday mostly by lying around.

Kylee right now is still very tired. I am too. Every night since her first surgery I get up to check and make sure her catheter is draining at night… often more than once. Since this surgery on Monday, it hasn't been draining very well which has caused me to sleep even less. I think it might be because she isn't drinking enough water. And in California it's a lot hotter than Seattle so she is sweating more. She also has some back pain, a headache and now her throat is hurting some. We let her go to a pioneer celebration tonight but she should have probably stayed in bed. I will probably take her to the doctor tomorrow to make sure she doesn't have an infection. Normally, after surgery, they put her on a month's worth of maintenance antibiotics. They didn't this time because she looked so good before. Well, I'm thinking they should have after this surgery Monday. So, we'll see what they say tomorrow. That all said, she really is still doing great despite everything. She still looks mostly well... just tired. I was telling a friend tonight... if she is only leaking a little like she is now at the end of September, then we'll celebrate. Last time we thought the surgery might have worked... we found out it didn't a month and a half later. So, I'm giving it two months from now. We'll see what happens and pray for the best like always.

Thanks again for all of you've done. We appreciate you all so very much!

Rebecca, Kylee and Art & family

Thursday, July 16, 2009

Kylee Update #5

Hello Everyone,

Well, since I’m writing you, you may be guessing we’re still in Seattle. If that was your guess, you’re right. All along I had a feeling we’d be staying, but I couldn’t figure out what would keep us here. I even called Alaska last night and worked out a deal with them to get us home early and I stayed up till midnight packing because we were 99% sure we’d be heading home after the appt since we couldn’t figure out a reason to stay. No such luck.

We got to the appointment to have Ginger, the Urology nurse, ask how things were going and we replied that Kylee was still leaking and our frustrations with that. She then told us if Kylee was still leaking significantly, then Dr. Grady wanted to do another minor surgery on Monday and add more d-flux… which is what she’s had done four times before. The d-flux is what fills in the bladder neck and keeps her from leaking… at least it’s supposed to. Dr. Grady wants to give it one more shot while we’re up here since we’re so far away and wouldn’t be back for a while. He really wants to send her home dry.

So, that all said, Kylee is scheduled for minor day surgery on Monday late morning/early afternoon. We don’t know the time yet. Please keep Kylee in your prayers again that this will do the trick. We’ll definitely go home dry, but we want her to stay dry. We already know the bladder can hold more and pray that it is big enough to keep from backing up in the kidneys. We just now want to keep her dry for, at least, four hours. That will eventually be her scheduled time to cath. We hope it will all work cooperatively.

Kylee wants to let you all know she is feeling great and is already telling everyone here she’s about to have her 11th surgery. We went to the hospital today to take some things back and see our friend Tommy Ludlow, who just had surgery. While there, we ran into a nurse Kylee had the day after her surgery. She was shocked when she saw Kylee. She was amazed at how great she looked. She didn’t even recognize her at first. There was also another lady from the playroom that couldn’t believe it was the same girl. This lady had brought Kylee a beginning weaver to make a scarf the day after her surgery at Kylee’s request. When the lady showed up Kylee was feeling quite awful and the lady thought there is no way this little girl is doing any weaving… but she left the weaver anyway. Kylee, over the past week and a half, weaved almost an 8 ft scarf. That lady was impressed and amazed… both at the scarf and how great Kylee looked. I asked Dr. Grady today if he’d seen anyone heal this fast from a surgery… he paused and said… not the surgery Kylee just had. He is also very impressed with Kylee. I just keep telling him it’s all the prayers and positive thoughts sent our way. He says he believes that works.

Thanks again everyone for the continued support. It is GREATLY appreciated. Just fyi, we are still scheduled to return, very late, next Tuesday, July 21st.

With much gratitude,
Rebecca, Kylee & Art

Wednesday, July 15, 2009

Kylee Update #4

Hello Everyone,

Some of you have been asking how Kylee is doing. Well.... she is doing great! In fact, last Wednesday, after hearing some news about a cousin of Art's who is battling cancer... Kylee said everyone should stop praying for her, since she is feeling better, and pray for her cousin. We just think she is such a special girl.

Kylee is breaking all the records with her recovery. No one has seen anyone recover this quickly from the surgery Kylee had. Her surgeon is so surprised and happy, as are we. The only downside is that we're still not sure if the surgery actually worked. That is what we're praying for now. She has started leaking again and that wasn't supposed to happen. We thought her bladder would be made huge, but apparently, it is supposed to stretch... and, as usual, it isn't stretching. But, we are still trying to stay positive. The surgeon said he has seen this before and then when the bladder stretches, the kid's are suddenly dry like they were supposed to be to begin with. So, still, time will only tell. She is still drier than before and that is good.

We still feel very blessed. Kylee just looks amazing despite everything and she's been able to do some very fun things compliments of the Ronald McDonald House. This place is such a special place to us. Kylee calls it her home away from home. Her highlight of the entire time here was going to see the Mariner's baseball game with her dad. Unbeknownst to us, they had received Diamond Club tickets... which mean they cost $275 - $324 per seat, per game. We're sure they were the $324 seats because when the usher showed them to their seats, they were directly behind home plate! Art was like a little kid with excitement. The tickets included a full gourmet buffet and all you can eat of whatever with seat side service at no extra charge. Kylee said this is the most fun thing she has gotten to do. She has also loved receiving cards and packages in the mail. A huge thanks to all of you who surprised us in this very fun way.

Now, we are hanging out waiting for our next appt which will be this Thursday. At last Thursday's appointment they took out Kylee's s.p. (suprapubic catheter) and Dr. Grady said it was the easiest catheter he has ever taken out. He said most kids scream, etc. etc. Kylee was scared, but laid there and took it like a champ. She even said it didn't hurt that bad. She is amazing. At this appointment, Dr. Grady told us if Kylee is doing well this week, we can come home early. So, we are hoping we get to come home Thursday night or Friday. We'll just have to do some finagling with the airline tickets. We'll let you know. Or, if I don't right away, it's because I didn't have time. I'll write more if we're still here.

I want to thank all of you again for prayers, fasting, and everything else you have all done. We know it's through everyone's faith and positive thoughts for us that Kylee has recovered so quickly. We have had several mini miracles and want to thank all you very very much!

Love, Rebecca(Becky), Kylee & Art

Monday, July 6, 2009

Kylee Update #3

Hello Family & Friends

Before I give the latest update of our experience in the hospital, I thought I'd share a couple other things from the last few days. You see, these updates are also my journal entries from the trip. So, bear with me. One thing I thought was cute... and didn't want to forget... was the first thing Kylee said after surgery besides, "Hi Mom." It was, "Did it work?"... meaning the surgery. Kylee, just as much as us, wanted this surgery to work. So, much that it was the second thing she said right out of surgery. And then she immediately wanted to give both Art and I hugs and kisses... mind you she is totally out of it, in pain with two i.v.'s and tubes all over. She is such an angel to us. What a sweetheart. Anyway, that night after the surgery.. a couple hours later she started saying, "Boy, I'm glad that's over." She said it about 5 - 6 times over the course of the night. I thought that was kinda cute.

Well, the next morning we did have some frustration. From the surgery, mind you, Kylee is supposed to stay completely dry from the d-flux inserted into her bladder neck... kinda like collagen. When the day after the surgery she said I'm peeing and I'm wet... I was like WHAT?! Sure enough, she was leaking just like the last surgery, which was unsuccessful. We were very discouraged... Dr. Grady said it's still too soon to tell if the d-flux came out but the fact she was wet did not mean the d-flux was gone or that the surgery was unsuccessful. What I realized was the nurses did not flush her catheter tubes like they were supposed to for the first 24 hours of the surgery. As soon as I said something and they flushed her, 300 c.c.'s of urine came flying out of the tubes into the bag. Ugh! The wonderful thing is since that happened, all the nurses, of course, remember to flush and the even greater thing is... Kylee has been dry. Only time will tell... because she is still hooked up to two catheters. But, we're happy she has been dry since then.

On day one after the surgery, Kylee mostly stayed in bed and rested. We kept the room dark all day and didn't watch too much t.v. But, Kylee did get up once into the wheelchair and went to the playroom. She only lasted 10 min there but it was still amazing to everyone she actually even got out of bed the day after the surgery. They called in the pain management team who introduced Kylee to the morphine pain button. I was like, "What? You're going to give my child a button she can push whenever she wanted to administer morphine?" But they assured me even if she pushed the button constantly, it really only came out every 8 min. So, I said okay. Of course, Kylee did push that button all the time. She'd say, "I feel pretty good now... but I think I'll push it one more time." She said that again and again. Art and I got a kick out of this as well.

On day two (Friday), we had a great time during the day. Kylee felt pretty good and talked on the computer to all of Art's side of the family and to her brothers and sister and cousins from my side of the family. She got up twice to go down to the playroom and even pooped... I'm sure you love me telling you this, but it was a big deal because she has been starving since Tuesday and she was told she could eat after she pooped. Friday was sooner than expected for this to happen. They let her have popsicles, broth, juice and soda. After this huge day of excitement.. around 4:30, she sort of had a melt down from overstimulation I'm afraid, and had somewhat of a difficult time relaxing. She hurt all over, etc. etc. Once she did relax, she fell asleep instantly for the night... and that was pretty early.

She woke up Saturday morning early and was wide awake. I told her to go back to sleep but she refused. Almost right after she woke up she started pooping again so the doctors said she could eat breakfast. She began walking to the bathroom to use the toilet and this amazed everyone she could get up and walk on the third day after her surgery... considering all the abdominal muscles that were sore and affected from the surgery. She inhaled her waffle for breakfast and cheese pizza and chicken nugget for lunch. Art took her down to the playroom twice... She made 4th of July crafts and played on the computer and then at 4 p.m. they decided to disconnect her from the morphine and start oral pain meds. Kylee was a little nervous about giving up her pain button and did it reluctantly. They gave her some oxycodone, tylenol and ibuprofin. The rest of the night, Kylee was a uncomfortable off and on. We figured it was adjusting to the new medication. She didn't eat much of her dinner but was excited to go watch the fireworks at Lake Union on the 5th floor of the hospital. But, she fell asleep at 9:15. We debated wether to wake her or not. She woke up briefly when we said we were going to just let her sleep... to which she responded, "I'm awake and I want to go see the fireworks." So, against my wishes we headed up to see the fireworks. Unfortunately we could barley see them through the trees that have grown super duper high. But, she was still able to see some from another town in the distance. She almost fell asleep twice and was pretty uncomfortable by the time we got her back. She fell asleep right away, which was to no shock.

She slept till this morning at 7 when the doctors came in. She was very sleepy. They said, she is doing so great and asked her if she'd like to go home...meaning the Ronald McDonald House... to which she replyed, "I don't know." I was like, "What!? You don't want to leave?" But, I refrained from screaming that and kept it to myself. I told the doctors we would stay till she felt comfortable to leave and we had her pain under control. Well, she wanted sausage, so the nurse special ordered pancakes and sausage with orange juice.. just what Kylee has been wanting. Well, Kylee fell back totally asleep. When Art arrived, she was still asleep and continued to sleep. At 9 we tried to no avail to wake her for breakfast. She refused to eat and just wanted to sleep and complained of not feeling weel. Around 10:30, we finally got her to eat her sausage. About 11 a.m she threw it up. I ate the pancakes though, and they were good... as was the apple pie from last night. Anyway, when Art got back from church, we convinced her to get out of bed and go down to the playroom. Reluctantly, she did. 30 min later she came back and then threw up right before she got back into bed. She wouldn't eat her lunch and repeatedly answered EVERY question with, "I don't know." How bad to do you hurt? "I don't know." Do you want to leave the hospital? "I don't know." Is the medicine working? "I don't know." So, here we sit. Oh, did I mention this morning we tried to not give her the oxycodone and just the iburprofin and that didn't work. She did hurt more and it was obvious. She even asked for the oxycodone. Let me say, that stuff turns her into a wacky girl. She gets very goofy on that medication. Art's like, if she hurts and doesn't want to leave then why is she laughing? I was like, um... it's the oxycodone. The doctors backed this up.

Well, I had to get off the computer at that point in my typing this update. Since then... Kylee also took some ibuprofin with her next set of tylenol and oxycodone. She decided she wanted to go home but still kept saying she felt like she was going to throw up and refused to get out of bed to go to the playgroom in the afternoon. She was just kinda blah... So, the nurse said if Kylee would eat something, since she had not eaten her lunch... and not throw it up, we could go home OR we could just stay another night. So, we had a slice of cheese pizza sent up for Kylee and the nurse got her some soup and crackers, etc. Kylee did eat some of the pizza, some sprite and a cracker. After she didn't throw up and started feeling better after all those three pills... we were discharged from the hospital.

It's a miracle! We were supposed to be in here 7 - 10 days and we got out in 5 days after the surgery. We have really been blessed. No one can believe how well Kylee has really done... not even her surgeon. She is just remarkable. So, we are now back at the Ronald McDonald House in room 375. We will be hanging out here for another 2 1/2 wks. It is very accomodating here. We have a wheel chair, the room is like a hotel room with 2 queen beds, we have a kitchen to cook in and volunteers bring dinner usually twice a week. In fact, this week they had people donate free tickets to the Seattle Mariners and the Seattle Storm's games. By the time Art got to the desk the Mariner's tickets were gone but they said they had three tickets to the Storm's game.. the WNBA team for Seattle. So, he took those and they ended up being 2 tickets and a parking pass. I told Art to take Kylee. We looked up the seats and they are VIP tickets, center court, in the third row against the Sacramento Monarchs. Wahoo! I don't know who is more excited, Art or Kylee... oh that's easy for those of you who know Art, nahhh Kylee is very excited as well. We're hoping she is totally up for it. She looks much better now that we're home. We pray the healing continues onward and upward. We have a couple visits with the doctor before we fly home. If anything major changes, we will let you know. For now, Kylee is healing and her tubes are draining and those are great signs.

Thanks again to all of you for your positive thoughts and prayers. We are so grateful.

Art & Rebecca

p.s. Kylee says to have it be from her too.
p.s.s. after the fact, we found out the oxycodone can make you upset to your stomach and cause you to lose your appetite. we wish the nurse would've told us that. but all's well, that ends well.

Wednesday, July 1, 2009

Kylee Update #2

Hello Everyone,

Sorry for the late email. Her surgery was pushed back till 2:30 because there were three other smaller surgeries for younger children that Dr. Grady needed to perform. The surgery lasted till about 8:30 p.m. So, it was 6 hours long. They paged us a few time with updates, always saying everything was going well. Dr. Grady came and spoke with us after the surgery. He said he thought it went very well and that he is basically very interested to see how this goes for Kylee. We are all hoping for a great success. For now, only time will tell... but Dr. Grady said he is very optimistic.

They used small intestine this time to make the bladder larger. It should produce less mucus than the larger colon does. This will be nice. He also fixed her mitrofinoff that was bulging out like a polup, smoothed out her old scar tissue and inserted more d-flux into her bladder neck again.

Kylee was very nervous today... the sitting around forever didn't help. There were a few tears but we got her to laugh and then she started talking to all the nurses and doctors and then she was fine. They let me even go back with her again till she fell asleep. That was kind of funny... she said a few funny things before she was completely out. The last thing she said was that she had some gum. Funny girl.

She was concerned about the surgery this time more than usual. I figure it's because she is older now. She wanted to know about the knives and if there was a lot of blood or if people have died from having an augmentation. They had a child life specialist come talk to her that made her feel a lot better and explained a few things. Kylee also wanted to have us in the recovery room after her surgery. They don't usually let the parents in but since we were the only people in the surgery recovery area because it was so late, they let us go back. They gave her an epidural which was only working on the right side. She was in some pain and her i.v.'s were bothering her. Boy, does she hate i.v.'s. The Dr. pulled the epidural out 1 cm and that seems to have done the trick. They let her go back to her room which is where we are now. She finally has fallen asleep. She said a lot of funny things in there too. She is incredibly thirsty and hungry as you can imagine. Dr. Grady said she can't have anything for 2 days due to her stomach being paralyzed from the surgery. Everything just needs time to heal and wake up. He said she could have gum, ice chips and hard candy but he didn't write it down. Hopefully we can convince the nurses that he really did say that.

Well, we are very tired. There are lot more things I could write but I need some sleep. Kylee was dozing out on and off and would wake up and say that she'd had a dream. One was that she dreamt she was drinking her favorite juice and just about to eat something... then she woke up and told me that, while crying, because she realized she couldn't have it. She'll be fine though.

We appreciate very much all of your prayers, well wishes, thoughts and everything positive... more than you can imagine. Things have gone so well so far... and we're so happy and grateful for that. Please continue praying though... we still need it. We've still got a few weeks of recovery and healing to pull through. We'll keep you updated on that as well.

For now, thanks again and good night,

Art and Rebecca

Surgery postponed till 2:30 p.m. Three other short surgeries snuck in before us. Will be a long day but the nurse said Kylee can have gum. Yeah! An update will go out tonight. Thanks again everyone for everything.