IV is going back in. Pain is coming back. No pee in the diaper. We need more time. Bummer.
As much as I want her home, I'm glad this is happening at Children's.
Tony
Sunday, May 18, 2008
Half Baby-Half AMAZING!
The size of the tumor was about the size of a grown mans fist. Unbelievable.
We first heard that we would be in the hospital for 2-4 weeks. I think that would of been the case if we need to transplant. Then they told us about a week for her procedure. Then after the surgery they said 5 days.
At about 5:00 tonight they disconnected everything. The epidural, the catheter, both IV's, yeah she had 2, the drain coming out under her ribs, the blood pressure monitor, the Oxygen sensor and the heart monitor. She has no fever either. She is on Oxycodone oral medication. She is not vomiting, and she is breastfeeding almost normally.
She pooped 2 times last night. That's big. I guess when they go in and move the liver around, they also move her bowels and intestines around. They get inflammed. That's why they don't want her to eat till they hear bowel sounds or farting. Never wished so hard for a fart in my life. She had bowel sounds her first night.
We sat outside on a patio with her in April's lap. It was wonderful and a beautiful night.
We saw one of the surgeons in the cafeteria and she said that kids process pain differently. They don't know why they don't need as many narcotics as adults.
If there is no fever tonight and no vomiting, we are probably going to go home tomorrow! AMAZING.
Tony.
We first heard that we would be in the hospital for 2-4 weeks. I think that would of been the case if we need to transplant. Then they told us about a week for her procedure. Then after the surgery they said 5 days.
At about 5:00 tonight they disconnected everything. The epidural, the catheter, both IV's, yeah she had 2, the drain coming out under her ribs, the blood pressure monitor, the Oxygen sensor and the heart monitor. She has no fever either. She is on Oxycodone oral medication. She is not vomiting, and she is breastfeeding almost normally.
She pooped 2 times last night. That's big. I guess when they go in and move the liver around, they also move her bowels and intestines around. They get inflammed. That's why they don't want her to eat till they hear bowel sounds or farting. Never wished so hard for a fart in my life. She had bowel sounds her first night.
We sat outside on a patio with her in April's lap. It was wonderful and a beautiful night.
We saw one of the surgeons in the cafeteria and she said that kids process pain differently. They don't know why they don't need as many narcotics as adults.
If there is no fever tonight and no vomiting, we are probably going to go home tomorrow! AMAZING.
Tony.
Saturday, May 17, 2008
The first 24 hours Post Operative...
Well its 9:39 am and I actually got to feed Ashley this morning. She was happy, lets hope she keeps it down. Tony slept with Ashley on her bed while I slept in the pull out - my first time ever NOT sleeping with her. I think she did better sleeping with Tony than with me. I got about 6 hours of sleep... I think Tony got 1 hour... maybe less.
Sometimes I look at her with all those cords going into her body and I think about my poor little baby. She shouldn't have to have this happen to her, she's so little. Then I wonder what life will be like. Will future tumors come up, will this spread, will I always be worried. Will life ever be normal. I try and take comfort in that life will be normal... a new normal. Life will simply be a new definition of normal. I'm always going to wonder if any tumors are in there again. I'm always going to wonder how long her life will be. I'm always going to wonder about the future. I guess that's part of my new normal. Then I wonder... Will she ever wear a bikini? HA HA!
What will chemo be like? She doens't have much hair to loose at least. Will she swell, will people be scared to look at her or will people have that sorrow look on their faces as they glance at her ravaged body. Okay... I'll get ahold of my self now... I'm trying to take this one day at a time. Sometimes its one minute at a time. -- April
Sometimes I look at her with all those cords going into her body and I think about my poor little baby. She shouldn't have to have this happen to her, she's so little. Then I wonder what life will be like. Will future tumors come up, will this spread, will I always be worried. Will life ever be normal. I try and take comfort in that life will be normal... a new normal. Life will simply be a new definition of normal. I'm always going to wonder if any tumors are in there again. I'm always going to wonder how long her life will be. I'm always going to wonder about the future. I guess that's part of my new normal. Then I wonder... Will she ever wear a bikini? HA HA!
What will chemo be like? She doens't have much hair to loose at least. Will she swell, will people be scared to look at her or will people have that sorrow look on their faces as they glance at her ravaged body. Okay... I'll get ahold of my self now... I'm trying to take this one day at a time. Sometimes its one minute at a time. -- April
Friday, May 16, 2008
"REMARKABLY FANTASTIC!"
Those were the words of the surgeon. All of the prayers and thoughts must have been heard.
It went better than we could of hoped for! Turns out that they did not have to cut off one of the two main blood supplys. After getting in there they were able to ultrasound the tumor and remove it only. They did so with what they called "good margins". What that means is that there is about a centimeter of good tissue that they cut out around the tumor. Or so they think. It won't be confirmed until pathology looks at it with results on Tuesday.
There are 4 stages of cancer. Stage 4 is the worst when it has travelled, then 3 that is where they see "visible hunks". Stage two" you think you get it all but margins aren't great or there is a part of thin margin. Stage 1: you get it all. He thinks it will be stage 1 or 2, but could very well be stage 1. The very best stage. I guess the operation went about as good as it could go. I guess there was very little blood loss, whick is unusual in a liver resection.
He told us that it would grow back in about 2-3 months!
When we first saw Ashley wake up. She sat up and cried mama. She can't eat anything until her stomach "wakes up". She wants to eat badly and does the milk sign. She got mad and flailed her legs. All of these are good signs. She stood up later and tried to walk to April. She is doing pretty awesome, groggy but pretty good.
She has 2 IV's, a cathater, an epidural, and a drain coming out from under her rib cage. Gradually these will be taken out.
Sorry it took so long to update. By the time we got our room and ate it was getting pretty late.
Mama and Ashley are sleeping right now.
I know there is still more to go, but for right now I'm one happy dude!
Tony
It went better than we could of hoped for! Turns out that they did not have to cut off one of the two main blood supplys. After getting in there they were able to ultrasound the tumor and remove it only. They did so with what they called "good margins". What that means is that there is about a centimeter of good tissue that they cut out around the tumor. Or so they think. It won't be confirmed until pathology looks at it with results on Tuesday.
There are 4 stages of cancer. Stage 4 is the worst when it has travelled, then 3 that is where they see "visible hunks". Stage two" you think you get it all but margins aren't great or there is a part of thin margin. Stage 1: you get it all. He thinks it will be stage 1 or 2, but could very well be stage 1. The very best stage. I guess the operation went about as good as it could go. I guess there was very little blood loss, whick is unusual in a liver resection.
He told us that it would grow back in about 2-3 months!
When we first saw Ashley wake up. She sat up and cried mama. She can't eat anything until her stomach "wakes up". She wants to eat badly and does the milk sign. She got mad and flailed her legs. All of these are good signs. She stood up later and tried to walk to April. She is doing pretty awesome, groggy but pretty good.
She has 2 IV's, a cathater, an epidural, and a drain coming out from under her rib cage. Gradually these will be taken out.
Sorry it took so long to update. By the time we got our room and ate it was getting pretty late.
Mama and Ashley are sleeping right now.
I know there is still more to go, but for right now I'm one happy dude!
Tony
Surgery Schedule
Check in at 9:00. Might have to get some bloodwork done ahead of time.
Then go to Operating Room. Nurses will talk with us as well as the anesthesiologist.
Procedure starts at 11:15. They will give us a pager. It will take about 4 hours (deep breath).
The doctors meet us after to tell us how great it went.
We go to recovery room and watch her wake up.
Ashley's fever seemed to subside last night. She isn't moaning this morning. I think that is a good sign of things to come. I'm scared and nervous, but I'm optimistic too.
Our pediatrician called us yesterday, Joyce. She told us that we caught this thing early.
One of the other doctors told us that in only 25% of the tumor removals do they go in without chemo or a biopsy. Those are the best situations.
I'm hanging on to every one of those words right now.
Tony
Then go to Operating Room. Nurses will talk with us as well as the anesthesiologist.
Procedure starts at 11:15. They will give us a pager. It will take about 4 hours (deep breath).
The doctors meet us after to tell us how great it went.
We go to recovery room and watch her wake up.
Ashley's fever seemed to subside last night. She isn't moaning this morning. I think that is a good sign of things to come. I'm scared and nervous, but I'm optimistic too.
Our pediatrician called us yesterday, Joyce. She told us that we caught this thing early.
One of the other doctors told us that in only 25% of the tumor removals do they go in without chemo or a biopsy. Those are the best situations.
I'm hanging on to every one of those words right now.
Tony
Thursday, May 15, 2008
Surgery tomorrow, the next big hurdle.
Looks like we are going to be checking in at 10:00 for the surgery. The head surgeon told us to get there at 9:00 though.
The last 24 hours have been rough on Ashley. She seems so lethargic, just sits there in April's lap. In some ways I will be relieved to have them take her away. In other ways I don't want to see them take her away.
I'm trying to think of something to do while we wait for the surgery. Something to keep our minds off of the bad things. I've been reading the the Lance Armstrong story at livestrong.org for some motivation.
I'm just trying to picture her after the surgery, doing her little"Hot-dog Dance" from the Mickey Mouse Clubhouse. The doctors coming in and telling me how great it went. I hope that is the next post on this site.
One positive that my friend Greg pointed out. I've never experienced love, support, prayers like this before. I will never forget it. It's pretty cool.
Trying to LIVE STRONG. Tony
The last 24 hours have been rough on Ashley. She seems so lethargic, just sits there in April's lap. In some ways I will be relieved to have them take her away. In other ways I don't want to see them take her away.
I'm trying to think of something to do while we wait for the surgery. Something to keep our minds off of the bad things. I've been reading the the Lance Armstrong story at livestrong.org for some motivation.
I'm just trying to picture her after the surgery, doing her little"Hot-dog Dance" from the Mickey Mouse Clubhouse. The doctors coming in and telling me how great it went. I hope that is the next post on this site.
One positive that my friend Greg pointed out. I've never experienced love, support, prayers like this before. I will never forget it. It's pretty cool.
Trying to LIVE STRONG. Tony
Wednesday evening... We went to the ER at 3 am
Wednesday evening Ashley developed a fever. She hadn't vomited for 12 hours but she was feverish. We called the onconogist/hemotologist. They said basically not to give her any tylenol/ibprophen because it can cause bleeding issues during surgery. This was at 9 pm. By 11 pm her fever was around 99. We called the doctor again. They don't get concerned unless the fever is in the 100's. If we're concerned they told us to take her to our Ped. By 1 am her fever was around 100.7 and she would moan each time she'd wake in her sleep. She's twist her body into the "butt up" position on the bed and just moan. Her fever would spike then fall. She was hydrated as we could see tears. Her breathing seemed labored i.e. short, shallow. We called the Doc again. "Bring her into Children's Hospital ER".
We called Grandma and Grandpa at 2 am and they came over to watch Whitney as we headed to the ER. We had so many tests done. Chest X-ray, another IV so they could get blood work, a booger smear from her nose, Blood pressure. Of course before we could begin the blood work, we had to get a sick, groggy often awake but really tired and sleepy baby to drink some "valium" type of medication. The first syringe... she spit the entire thing out. 30 minutes and another syringe later she finally got the medicine in her and went to sleep. Whew! Her fever was normal upon checking into the ER but it would spike. By 8 am it was 102.
Tony and I were up all night. They found no chest conjestion which is good because this means they probably wouldn't postpone her surgery on Friday. Her blood work indicated her white blood cell count had doubled within the last two days so she's fighting off something. They don't know what it is. We're still waiting for the "booger smear" results.
We left the ER around 9:30 am and are home. We've been sleeping. I just woke up to update the blog. Ashley is still warm but they allowed us to give her Fever All. Its basically Tylenol and given in the butt. NICE Visual Eh! I"ll update more as we get it. We just need her to be tough and pray the surgery isn't cancelled. Then again, the doctors know best and if they believe the surgery should be cancelled until she's feeling better, I guess that's the right call. Right now we're on a wait and see basis. -- April
We called Grandma and Grandpa at 2 am and they came over to watch Whitney as we headed to the ER. We had so many tests done. Chest X-ray, another IV so they could get blood work, a booger smear from her nose, Blood pressure. Of course before we could begin the blood work, we had to get a sick, groggy often awake but really tired and sleepy baby to drink some "valium" type of medication. The first syringe... she spit the entire thing out. 30 minutes and another syringe later she finally got the medicine in her and went to sleep. Whew! Her fever was normal upon checking into the ER but it would spike. By 8 am it was 102.
Tony and I were up all night. They found no chest conjestion which is good because this means they probably wouldn't postpone her surgery on Friday. Her blood work indicated her white blood cell count had doubled within the last two days so she's fighting off something. They don't know what it is. We're still waiting for the "booger smear" results.
We left the ER around 9:30 am and are home. We've been sleeping. I just woke up to update the blog. Ashley is still warm but they allowed us to give her Fever All. Its basically Tylenol and given in the butt. NICE Visual Eh! I"ll update more as we get it. We just need her to be tough and pray the surgery isn't cancelled. Then again, the doctors know best and if they believe the surgery should be cancelled until she's feeling better, I guess that's the right call. Right now we're on a wait and see basis. -- April
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