Lillian's oncologist dropped by on Monday and said something that has really stuck with me. The pastor at her church told the congregation on Sunday that this is a week of miracles. He asked them to pick 2 or 3 miracles and pray that they would happen this week. She picked Lillian as her #1, 2 and 3 miracle.
We often don't "pray big" and ask for miracles because we're scared to hope or are worried about being disappointed. After all, we don't know what God's plan is. But if this is the week of miracles, I am acting in faith and praying big.
Lillian spiked a fever last night and it's currently not responding to Tylenol. (Yep, even in Intensive Care, Tylenol is the best for a fever.) Her lungs are very sick and her liver is sluggish as well. The doctors have been stumped by Lillian's strange, prolonged illness for weeks. I pray that Lillian would have a miraculous recovery. That her lungs would have no long term damage, that her fever would disappear as suddenly as it appeared and that she would be like a new kid. I pray that this recovery would be so sudden that there would be no other explanation than God's mighty intervention!
I don't know what God's plan is for Lillian. But I'm praying big that He would deliver an Easter miracle for us. Join us in this mighty prayer, won't you?
Wednesday, April 4, 2007
Sunday, April 1, 2007
30 Days
As I read my last post, I was amazed that what was just a week seemed like an eternity ago. By the time I returned to our room after writing the update, the "conventional mode" of ventilation was already failing. That night was one of our worst with the Doctor trying several vent modes as well as switching her on, and later off, of the more aggressive ventilator machine called an oscillator.
The next day we had a care conference with the doctors from oncology and the PICU to discuss the plan. After nearly two hours, we landed on a plan with the least amount of intervention so that her body would have adequate time to respond and heal. A week of sticking to the plan (a record in the medical world) and she is generally unchanged.
After 30 days in the hospital, we are considering setting up utilities and forwarding our mail. The nurses are truly wonderful and make the ups and downs more bearable. We even played a little medical April Fools joke on one of our favorite nurses, Becca, today on her day off. With her help we have also named all of the ventilators after Friends characters. Just something to pass the time and add a little fun. We had "Chandler" but when his circuit started to fail, we decided that he once again needed some time in rehab and recruited "Rachel" to replace him. Rachel's tough, I think with enough time she just may be the one.
I pray that better days are just around the corner. They're managing the daily ups and downs but generally we're all waiting for Lillian to make the final push toward health. Until then, we hold our breath and wait.
The next day we had a care conference with the doctors from oncology and the PICU to discuss the plan. After nearly two hours, we landed on a plan with the least amount of intervention so that her body would have adequate time to respond and heal. A week of sticking to the plan (a record in the medical world) and she is generally unchanged.
After 30 days in the hospital, we are considering setting up utilities and forwarding our mail. The nurses are truly wonderful and make the ups and downs more bearable. We even played a little medical April Fools joke on one of our favorite nurses, Becca, today on her day off. With her help we have also named all of the ventilators after Friends characters. Just something to pass the time and add a little fun. We had "Chandler" but when his circuit started to fail, we decided that he once again needed some time in rehab and recruited "Rachel" to replace him. Rachel's tough, I think with enough time she just may be the one.
I pray that better days are just around the corner. They're managing the daily ups and downs but generally we're all waiting for Lillian to make the final push toward health. Until then, we hold our breath and wait.
Monday, March 26, 2007
Cautiously Optimistic
Lillian is a very sick little girl. Though the weekend was grim, today was a better day. She is mobilizing fluids and can open her eyes once again. On Saturday they were talking about switching her to a more aggressive ventilator but today, just 2 short days later, they've weaned her to a "conventional mode" of ventilation on the same machine. (That's a good thing.) It's hard to allow ourselves to hope again but we have decided to be cautiously optimistic. Since they still don't know what they are treating, there's a fair chance that she could turn the other way again. Apparently this is a fairly common roller coaster for kids in the PICU. For now, we're just so thankful for every precious moment. Please pray that Lillian would continue this positive momentum.
Friday, March 23, 2007
One Step Forward, Two Steps Back
This roller coaster we're on is far from over. Just as Lillian had defeated the evil infection and mobilized the stubborn fluids, they appear to have returned. Perhaps they had only retreated and not fully surrendered, I don't know. These must be Osama-germs or something.
They suspect she may have another infection but have yet to find any positive cultures. She has ballooned up again and though she's not yet at her highest previous weight, she's making fast headway. Every time they come up with a new test to run, I actually find myself hoping they will discover something. Something obscure but easily treatable of course.
Among the many tests are a daily chest x-ray. I was just reading Parents' magazine where a mom wrote in asking if dental x-rays were safe for her 4-year old. Boy, what I wouldn't give to have just one x-ray a year to worry about. I keep telling the docs that they've radiated her so much with the x-rays that she won't need radiation therapy after this.
Despite the best thinking of about a dozen of the country's finest doctors (between the PICU, Oncology and specialists), we have yet to find a reason for her backslide. Or for her prior stalemate for that matter. As they put it "she is a sick kid." (I like that terminology, it sounds like she's battling a cold or something.)
We've hit the 3 week mark and I'm about to start putting hash marks on the door to keep up. Your kind words of encouragement, care packages and meals have truly sustained and overwhelmed us. I actually left the building today and went out for lunch with two of my fav soul-sistas from Village, Jennifer and Wendy. It really hit the spot - the conversation and the food! Thanks also to Maddy's mom for the yummy meal, and totally out of the blue!
Please pray for wisdom for the doctors. I keep thinking that there is something we're missing but I know that is just because I'm a worried, medically-ignorant Mom. Even if the cause is unclear, let us find a treatment that successfully heals her lungs and mobilizes the fluids once and for all. (Out of your caves you wimpy Osama-germs and fight like men!!!)
Our friend Lexie could also use your prayers. She was supposed to have her tumor resected yesterday but her platelet counts were too low. They had to postpone the surgery an entire month and are adding another round of chemo in the meanwhile. Talk about a roller coaster! (caringbridge.org/visit/lexiethornton)
They suspect she may have another infection but have yet to find any positive cultures. She has ballooned up again and though she's not yet at her highest previous weight, she's making fast headway. Every time they come up with a new test to run, I actually find myself hoping they will discover something. Something obscure but easily treatable of course.
Among the many tests are a daily chest x-ray. I was just reading Parents' magazine where a mom wrote in asking if dental x-rays were safe for her 4-year old. Boy, what I wouldn't give to have just one x-ray a year to worry about. I keep telling the docs that they've radiated her so much with the x-rays that she won't need radiation therapy after this.
Despite the best thinking of about a dozen of the country's finest doctors (between the PICU, Oncology and specialists), we have yet to find a reason for her backslide. Or for her prior stalemate for that matter. As they put it "she is a sick kid." (I like that terminology, it sounds like she's battling a cold or something.)
We've hit the 3 week mark and I'm about to start putting hash marks on the door to keep up. Your kind words of encouragement, care packages and meals have truly sustained and overwhelmed us. I actually left the building today and went out for lunch with two of my fav soul-sistas from Village, Jennifer and Wendy. It really hit the spot - the conversation and the food! Thanks also to Maddy's mom for the yummy meal, and totally out of the blue!
Please pray for wisdom for the doctors. I keep thinking that there is something we're missing but I know that is just because I'm a worried, medically-ignorant Mom. Even if the cause is unclear, let us find a treatment that successfully heals her lungs and mobilizes the fluids once and for all. (Out of your caves you wimpy Osama-germs and fight like men!!!)
Our friend Lexie could also use your prayers. She was supposed to have her tumor resected yesterday but her platelet counts were too low. They had to postpone the surgery an entire month and are adding another round of chemo in the meanwhile. Talk about a roller coaster! (caringbridge.org/visit/lexiethornton)
Monday, March 19, 2007
Slow Going
Lillian has defeated the evil infection and is off of the antibiotics. She is still retaining about 4 liters of fluids. They feel that they have "wrung her out" as much as they can with the diuretics and now it is time for her body to give up the fluids on its own. Once her organs realize they are okay, her body should feel safe to release the fluids. Her lungs are still pretty sick so she is still on the ventilator. The docs say it may be another week or two until she can be extubated (ie - off the ventilator).
Overall her recovery is slow. There are days of stagnation punctuated with little steps forward or backward. Basically, she is just taking her own sweet time. But that's okay with us as long as she remains comfortable. Perhaps she just needed a good rest after fighting so hard against cancer all these months.
In the meanwhile, our fav Physical Therapist, Shana, is keeping her limbs loose. I've made it to church two weekends in a row. We are still tag-teaming the night duty so one of us gets to sleep at home in our own bed. And I swear spring has sprung overnight. I left the hospital and was amazed to see the flowering cherry trees and daffodils in bloom. I can't wait for Lillian to see all the pretty flowers and trees!
A month in the PICU will certainly give us a new perspective on just about everything. We've already been there for 2 weeks and the days are a blur. I'm guessing this is what prisoners go through. We certainly have more freedoms and are choosing to be incarcerated for the most part so I'm not trying to be over-dramatic. But, the confinement, the limited meal choices, the hard bed, the infrequent time out of our cell, I mean room, all lead to a rather monotonous, dazed routine. It's easy to miss the lives all around us rushing past while ours are on hold. Soon enough, we will be sprung from the pokey and life will resume its sprinters pace. But this time with the perspective of what an involuntary pause feels like. Lance Armstrong started a foundation in support of people affected by cancer. He chose the slogan "LiveStrong" because before cancer he just lived but now he lives strong. That is our intention as well.
"Life isn't measured by the breaths you take, but by the moments that take your breath away."
Overall her recovery is slow. There are days of stagnation punctuated with little steps forward or backward. Basically, she is just taking her own sweet time. But that's okay with us as long as she remains comfortable. Perhaps she just needed a good rest after fighting so hard against cancer all these months.
In the meanwhile, our fav Physical Therapist, Shana, is keeping her limbs loose. I've made it to church two weekends in a row. We are still tag-teaming the night duty so one of us gets to sleep at home in our own bed. And I swear spring has sprung overnight. I left the hospital and was amazed to see the flowering cherry trees and daffodils in bloom. I can't wait for Lillian to see all the pretty flowers and trees!
A month in the PICU will certainly give us a new perspective on just about everything. We've already been there for 2 weeks and the days are a blur. I'm guessing this is what prisoners go through. We certainly have more freedoms and are choosing to be incarcerated for the most part so I'm not trying to be over-dramatic. But, the confinement, the limited meal choices, the hard bed, the infrequent time out of our cell, I mean room, all lead to a rather monotonous, dazed routine. It's easy to miss the lives all around us rushing past while ours are on hold. Soon enough, we will be sprung from the pokey and life will resume its sprinters pace. But this time with the perspective of what an involuntary pause feels like. Lance Armstrong started a foundation in support of people affected by cancer. He chose the slogan "LiveStrong" because before cancer he just lived but now he lives strong. That is our intention as well.
"Life isn't measured by the breaths you take, but by the moments that take your breath away."
Wednesday, March 14, 2007
Progress
Okay, I may have been a bit overzealous in saying "won't be too much longer" until she's off the ventilator. I blame the commander of the fluid troops. He must have been caught up in some red tape (you know, filing paperwork, gaining approval up the chain of command, that kind of thing). Cause it took until yesterday for him to mobilize the troops. And then in one day, she "mobilized" almost a liter more than she took in. So, 1 liter down, 7 more to go.
The docs will tell you they finally found the right combinations of diuretics. But I know God is at work here. At the exact hour Lillian's Grandma Deborah was attending a mass held in her honor, Lillian "mobilized" 300 cc's of fluid. And the night prior her Nana Linda had a dream that Lillian would be better. And I was able to finally attend church Saturday night where the entire congregation prayed for Lillian. God is hearing your prayers my friends and He is doing amazing things. Thank you, thank you, thank you!!!
She is still sedated but is a bit more alert as they wean her from the vent and force her to breathe more on her own. Now that her eyes aren't as puffy, she is able to open them. Call me crazy but this morning she opened her eyes and I SWEAR she smiled at me. Granted she has a couple of tubes in her mouth and a big piece of hardware called a bite block to stop her from chomping down on the tube, but the edges of her mouth definitely curled up. I tell you, there is nothing sweeter than seeing your baby smile. Praise God.
The docs will tell you they finally found the right combinations of diuretics. But I know God is at work here. At the exact hour Lillian's Grandma Deborah was attending a mass held in her honor, Lillian "mobilized" 300 cc's of fluid. And the night prior her Nana Linda had a dream that Lillian would be better. And I was able to finally attend church Saturday night where the entire congregation prayed for Lillian. God is hearing your prayers my friends and He is doing amazing things. Thank you, thank you, thank you!!!
She is still sedated but is a bit more alert as they wean her from the vent and force her to breathe more on her own. Now that her eyes aren't as puffy, she is able to open them. Call me crazy but this morning she opened her eyes and I SWEAR she smiled at me. Granted she has a couple of tubes in her mouth and a big piece of hardware called a bite block to stop her from chomping down on the tube, but the edges of her mouth definitely curled up. I tell you, there is nothing sweeter than seeing your baby smile. Praise God.
Thursday, March 8, 2007
Mobilize the Fluid
The docs say she is doing well though to look at her it doesn't seem much has changed. She is still "puffy" which is an understatement unless you consider the Michelin Man to be retaining a bit of water. The doctors keep telling us that she needs to "mobilize fluids" as though she has a little military command post inside her. "All right men, we need to mobilize. Yellow squadron, go through the kidney. Green squad, out the nose. We'll see you all on the outside. Now, move, move, move." If that is in fact the scenario, I'd like the commander to stop smoking stogies in the officers' tent and mobilize the forces NOW. As of last count, she is 4 liters to the positive. Meaning 4 liters more fluid has gone in than has come out. She's making some progress since they've put her on a regular schedule of diuretics.
She is still on the ventilator though they have lowered some of the settings to begin weaning her off. She takes breaths on her own between the breaths forced on her through the tube. It'll be at least a few more days until they consider removing her from the ventilator completely. Although she's still sedated, she does kick her feet and wiggle her fingers...particularly when they're doing something she doesn't like. She's still in there making her wishes known!
This hospital stay is strange since we're just sitting around willing her to get better. We're keeping busy between video games (Jeff), the daily Jumble (Jeff), books (Lori) and making blankets (Lori). We keep a steady flow of her favorite songs playing to drown out the beeps and hums of the hospital equipment. Since she is "schnockered" (again, their term, not mine), we are able to tag team as well. While one of us stays bedside, the other can run home and do laundry or grab some necessities (aka - outside food).
A huge THANK YOU to Beth for the yummy brownies and Katie for the delicious soup, rolls and warm blanket. We're not very good "receivers" and are terrible "askers" but we appreciate your unexpected thoughtfulness. And thank you to the docs, nurses and staffers from the other departments who stop by to check in on us. Always the gracious host, Jeff considered hosting a pizza and beer party last night to accommodate the surge of kindhearted hospital personnel. I told him he's likely the first person to consider bringing beer to the PICU.
Anyhoo, that's all for now. I'll update again when she's off the ventilator. Shouldn't be too much longer!!!!!
She is still on the ventilator though they have lowered some of the settings to begin weaning her off. She takes breaths on her own between the breaths forced on her through the tube. It'll be at least a few more days until they consider removing her from the ventilator completely. Although she's still sedated, she does kick her feet and wiggle her fingers...particularly when they're doing something she doesn't like. She's still in there making her wishes known!
This hospital stay is strange since we're just sitting around willing her to get better. We're keeping busy between video games (Jeff), the daily Jumble (Jeff), books (Lori) and making blankets (Lori). We keep a steady flow of her favorite songs playing to drown out the beeps and hums of the hospital equipment. Since she is "schnockered" (again, their term, not mine), we are able to tag team as well. While one of us stays bedside, the other can run home and do laundry or grab some necessities (aka - outside food).
A huge THANK YOU to Beth for the yummy brownies and Katie for the delicious soup, rolls and warm blanket. We're not very good "receivers" and are terrible "askers" but we appreciate your unexpected thoughtfulness. And thank you to the docs, nurses and staffers from the other departments who stop by to check in on us. Always the gracious host, Jeff considered hosting a pizza and beer party last night to accommodate the surge of kindhearted hospital personnel. I told him he's likely the first person to consider bringing beer to the PICU.
Anyhoo, that's all for now. I'll update again when she's off the ventilator. Shouldn't be too much longer!!!!!
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