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.
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