When we returned home on Feb 14, 2008, Alan was 7 weeks post transplant. We knew life with a transplant would come with its own set of issues, but we felt relieved that we had left the roller-coaster of liver disease behind us.
We had no idea we had already boarded a bigger, scarier ride than we had been on before.
Just 4 days after returning home, we reported back for a clinic visit and found that Alan's liver numbers were up (shown in a blood draw). Three days later, they continued rise, and still again at the next draw, so that, just 11 days after coming home, Alan was admitted to the hospital for a liver biopsy.
Increasing liver enzymes are a possible sign of the body rejecting its transplanted liver, and a biopsy is the only way to rule that out.
Thankfully, Alan's biopsy showed no signs of rejection and we returned home after just a couple of days.
At home, we were adjusting quite well to life after transplant. We had learned Alan's meds and settled into a nice routine giving them. This included checking his blood pressure a couple of times a day - something much trickier with a toddler than an adult!!
Our biggest project was training Alan to go to sleep on his own. Our month at the Ronald McDonald House had been exhausting - mostly because Alan did. not. sleep. But we began to make progress, and it was all worth it to see how good Alan was feeling with his new liver!
The only places Alan went were hospitals and private homes. Greg and I took turns taking Dale to church, the other staying with Alan. When Alan went to the hospital, he always wore a mask.
His labs were checked weekly, and often locally, instead of having to make the long drive to our Children's hospital.
One morning in March, Alan woke up with a fever, which led to us driving him to Dallas and being admitted for a couple of days. No explanation was found, and we were allowed to return home, but his lab numbers weren't all where they should be.
They fluctuated on their own, and then, one morning in April, Alan again woke up with a fever. This time we took him to the local ER. They got checked him out, and even though the fever had come down, Alan's team still wanted to see him, so, again, we drove to Children's ER.
Turns out we were extremely glad to be there. All day and into the evening in the Children's ER, Alan got sicker and sicker. My mother was with me, and the two of us began to see sign after sign of what Greg and I had seen sepsis look like in January. Sure enough, the ER staff saw it too, and treated Alan accordingly. That night, Alan was admitted to ICU.
We could see and feel God's hand over the whole situation. Where else in the world would we have rather been on that day that at Children's?
After just a day in the ICU Alan was transferred to the regular floor, and, although he was tired, he otherwise looked great, and we were allowed to go home after just a couple of days. There was speculation about what might have caused this episode, but nothing definite to go on.
(Interesting story from this April stay: At 4:00am one night on the regular floor, I was awakened by Alan's nurse touching my knee. I came awake in a strange mixture of grogginess and alertness to hear her say, "I'm taking his crib into the hallway..."
huh?
She continued after just a breath - "...there is a tornado warning."
Yikes! Mom and I followed her and Alan and Alan's crib to the hallway to join all the other patients and families and wait out the storm, which, thankfully, passed uneventfully!)
Back at home, we immediately jumped right back in to what was becoming familiar, and would later be an obvious pattern.
Labs began to creep up.
Less than three weeks after being home, they were up enough to warrant another biopsy.
Back to Children's we went, bringing Dale with us. If we were going to be there for a week or so for rejection, why not get a room at RMH and have the whole family along, right?
But the biopsy showed no rejection, and were sent home after only two days, much sooner than anticipated.
Only to return to the local ER less than 48 hours after our release with the worst fever yet.
We began to see just what we had seen less than a month before in another ER, only this time, Alan got worse a lot faster. A lot of phone calls were made between Alan's team and us, and Alan's team and the local ER, which led to the Children's transport team coming to get Alan in their own ambulance.
By the time they arrived Alan was very sick, and we were very frustrated at not being able to do for Alan all we knew he needed. Seeing the Children's transport team come in with that logo on their uniform was a blessed sight!
This would turn out to be a long visit for Alan. For the first time, he was found to have bacteria in his blood. And a very mean one, at that - more scientifically known as a gram-negative rod (GNR). Because of the identity of the bacteria (this one happened to be e.coli), Alan remained in the hospital on IV antibiotics for 10 days.But as usual for Alan, after a few days on antibiotics he was doing wonderfully! The rest of the stay to finish the course was very routine.
We were only home 10 days when yet another fever struck, and we once again headed to the local ER. Although he didn't seem quite as sick this time, the Children's transport still came to get him, this time in their airplane.
It was my first time to fly without motion sickness protection, and I'm sure due to nothing but answered prayer, I did just fine. Not only did I not get sick, but I experienced such an incredible peace, flying through the turbulent clouds, with nothing to listen to but the loud rumble of the engines. I felt God's presence in that little plane.
In some ways this trip was much the same as previous ones for Alan - fairly rapid recovery after a few days of iv antibiotics, only this time was another GNR bacteria. In others ways, it was a clear turning point.
Alan's team launched into an all-out search for answers to the cycle that by this time had become quite clear. As I said in Alan's online medical journal at the time, "We are in a cycle of him becoming "stinking sick" (as one of his doctors said this morning).... needing some intense care... to thriving while on the powerful antibiotics... and then we go home and the clock starts ticking until it all starts happening again."
During this 14-day treatment and search for answers, Dale once again came to stay and we got another room at RMH.
Soon, all conditions but one were ruled out. Finally, Alan had presented enough clues that his team felt certain enough of a possible explanation. We were presented with two treatment options. The first was to change his medications and then wait and see. If Alan got another infection, then it would be time for intestinal surgery.
The second option was to go ahead and schedule the surgery without waiting. Of course, both options had their advantages and disadvantages. We had a lot to think about.
Alan was dismissed from the hospital with the medication changes, and we had the option of calling at any time to ask for the surgery. It was one of the greatest responsibilities we have felt as parents.
At each lab draw following that we became more and more comfortable with the idea of waiting for the surgery. To see if time (and Alan's growth) and the medication would solve the issue.
The first half of the summer passed pretty uneventfully. Alan's labs looked good, and at one point he was not scheduled to come back to clinic for 3 months! Even at that, the fear of the next fever always lingered in the back of our minds. We did our best to trust God's protection for Alan, but the question was always there.... would there be another fever? When?
In the meantime, there were other issues that troubled us. Alan hadn't grown more than a centimeter or two since at least his first birthday, 7 months before. He was still wearing the same shoes he had been before transplant. I pulled out the pair of winter pajamas he was wearing the night he was called for transplant and they still fit perfectly.
So, before the 3-month clinic visit, we returned to Children's for what was supposed to be a quick nurse & dietitian visit and weight check.
However, the labs that had been drawn that morning came back with an abnormal result.
Because of the medication changes 6 weeks before, Alan's immune system was severely suppressed - much more so than normal even for a transplant patient. The lab that showed this result was repeated a few days later, and, sure enough, the condition was getting worse. Alan was now at severe risk for infection - a concerning thing at any time, but downright scary when you consider we were pretty much watching and waiting for the next fever. If that happened now, it would be a seriously life-threatening event for Alan.
However, in an odd sense of irony, the 'fix' for the neutropenia was to stop the daily antibiotic Alan had been on for 6 weeks to prevent another infection.
So, while Alan's immune system was practically nonexistent and at severe risk of infection, the medication he was on to prevent infection was dropped. Completely.
We felt like we were walking a high wire and our safety net had just been taken away. Our only choice was to trust God and his sovereignty. And pray. A lot.
And, with a big sigh of relief and many prayers of thanksgiving, just 10 days later (although it seemed a very long 10 days) Alan's labs showed his immune system had recovered, and the antibiotic was added back in.
Which was proof of God's amazing care and timing, because just 19 days later, Alan woke up with a fever.
Our response was pretty routine by this point. Make a mad dash for the local ER, contacting Children's on the way. Local ER starts IV fluids and obtains blood and urine for cultures. Does a chest x-ray. Another ambulance ride to Children's. Another admission to ICU. Another positive blood culture for GNRs.
While waiting in the local ER I couldn't help but realize that we were only 4 days away from Dale's birthday. He and I had been planning his party for weeks. I knew this admission would last long beyond party day, and I cried. In the grand scheme of all we had to worry about, one birthday party should be seen as minor. But in the wee hours of that morning, the cycle had worn me down, and my heart hurt that the party we had planned wouldn't happen.
As usual, Alan did well with the IV antibiotics, and by Saturday (party day) he was feeling great. Dale and four of his grandparents came, and they, along with Greg and Alan and me had a wonderful birthday party, right in Alan's room.
The only thing missing were the candles on the cake. Because setting off the sprinkler system did not sound like our idea of a good day!
We have been asked often over the past two years, "How is Dale?". While I am sure that such disruption in a little boy's life has to have some effect, Dale has done very well.
Any time we are away from him he stays with grandparents or great-grandparents. He gets one-on-one attention (something all kids enjoy!) and often special treats in the way of fun things to do, places to go, stuff to eat, and yes, even new toys sometimes.
He loves visiting Children's, and whenever possible, we have enjoy having him there with us. Both Children's and RMH have truly 'thought of everything' and go to great lengths to include and take care of patients siblings. In fact, many times even though Alan was either too sick or too young to take advantage of things offered, Dale was able to enjoy them to the fullest!
A couple of days after Dale's birthday party, Alan received a PICC line in his arm, which allowed us to finish this 10-day course of IV antibiotics at home. And of course, before we left the hospital, plans were made for surgery in 3 weeks.
Alan was admitted on Sunday night before surgery on Monday. Again, his hospital room filled with family as everyone wanted to personally give him hugs and kisses before he went into surgery. And of course, be there for us. ;)
Alan came through the surgery with flying colors. The surgeon appeared long before we had been told to expect him, with a big smile, and a huge air of relief and confidence. Not overly confident in himself, but confident in what he had seen inside Alan: the problem was clear, their guesses correct. And while he still couldn't give a guarantee, we could see it was all he could do to keep himself from promising that this had fixed it.
He did say that if Alan was fever-free for three months, we could all know this problem was behind us.
Alan's recovery went fantastically. In fact, he was dismissed from the hospital only 5 days after surgery! We were back and forth to Children's often for a couple of weeks for him to be monitored, and finally for his staples to be removed.
And there were no fevers. And his labs looked good.
Alan's second birthday came and went, with much celebration.
And still no fevers. And labs looked good.
He was doing so well that when his doctor had to be out of town suddenly, Alan was one of the kids doing good enough that his regular checkup appointment was moved to 2 weeks later than planned. :)
By that appointment, even though we were still 2 weeks away from the 'official' 3-month mark, I think everyone had seen enough to know: the infections were over.
Life finally seemed normal again.
Of course, it was at that same appointment that Alan's liver enzymes came back unexpectedly elevated. He was sent immediately for a sonogram, scheduled to come back in two days for more lab work, and tentatively set up for a biopsy.
And we were reminded that this is our new normal. Even though we are past one crisis, managing Alan's care is always there. Some days it is as simple as giving his medications. Other days it is more. But we have learned through it all to trust God with everything, because he is trustworthy, and to be thankful for all things - the good and the 'bad'.
It turned out that the most recent bump in numbers was a passing thing, and by the next blood draw had returned to normal on their own. No biopsy this time. (See?? I told you God was trustworthy!) ;)
We were able to celebrate Christmas, and Alan's 1 year transplant anniversary, and the New Year at home and with family, in good health.
This journey through liver disease and transplant has also taught us to take life one day at a time. We don't know what the future holds for Alan. For that matter, we don't know what the future holds for any of us. But God does. He is in control of all the things we can't see, or know, or plan for. And he is ready to take control of all we will give him. Because he can handle any of it much better than we can anyway. :)
We had no idea we had already boarded a bigger, scarier ride than we had been on before.
Just 4 days after returning home, we reported back for a clinic visit and found that Alan's liver numbers were up (shown in a blood draw). Three days later, they continued rise, and still again at the next draw, so that, just 11 days after coming home, Alan was admitted to the hospital for a liver biopsy.
Increasing liver enzymes are a possible sign of the body rejecting its transplanted liver, and a biopsy is the only way to rule that out.
Thankfully, Alan's biopsy showed no signs of rejection and we returned home after just a couple of days.
At home, we were adjusting quite well to life after transplant. We had learned Alan's meds and settled into a nice routine giving them. This included checking his blood pressure a couple of times a day - something much trickier with a toddler than an adult!!
Our biggest project was training Alan to go to sleep on his own. Our month at the Ronald McDonald House had been exhausting - mostly because Alan did. not. sleep. But we began to make progress, and it was all worth it to see how good Alan was feeling with his new liver!
The only places Alan went were hospitals and private homes. Greg and I took turns taking Dale to church, the other staying with Alan. When Alan went to the hospital, he always wore a mask.
His labs were checked weekly, and often locally, instead of having to make the long drive to our Children's hospital.
One morning in March, Alan woke up with a fever, which led to us driving him to Dallas and being admitted for a couple of days. No explanation was found, and we were allowed to return home, but his lab numbers weren't all where they should be.
They fluctuated on their own, and then, one morning in April, Alan again woke up with a fever. This time we took him to the local ER. They got checked him out, and even though the fever had come down, Alan's team still wanted to see him, so, again, we drove to Children's ER.
Turns out we were extremely glad to be there. All day and into the evening in the Children's ER, Alan got sicker and sicker. My mother was with me, and the two of us began to see sign after sign of what Greg and I had seen sepsis look like in January. Sure enough, the ER staff saw it too, and treated Alan accordingly. That night, Alan was admitted to ICU.
We could see and feel God's hand over the whole situation. Where else in the world would we have rather been on that day that at Children's?
After just a day in the ICU Alan was transferred to the regular floor, and, although he was tired, he otherwise looked great, and we were allowed to go home after just a couple of days. There was speculation about what might have caused this episode, but nothing definite to go on.
(Interesting story from this April stay: At 4:00am one night on the regular floor, I was awakened by Alan's nurse touching my knee. I came awake in a strange mixture of grogginess and alertness to hear her say, "I'm taking his crib into the hallway..."
huh?
She continued after just a breath - "...there is a tornado warning."
Yikes! Mom and I followed her and Alan and Alan's crib to the hallway to join all the other patients and families and wait out the storm, which, thankfully, passed uneventfully!)
Back at home, we immediately jumped right back in to what was becoming familiar, and would later be an obvious pattern.
Labs began to creep up.
Less than three weeks after being home, they were up enough to warrant another biopsy.
Back to Children's we went, bringing Dale with us. If we were going to be there for a week or so for rejection, why not get a room at RMH and have the whole family along, right?
But the biopsy showed no rejection, and were sent home after only two days, much sooner than anticipated.
Only to return to the local ER less than 48 hours after our release with the worst fever yet.
We began to see just what we had seen less than a month before in another ER, only this time, Alan got worse a lot faster. A lot of phone calls were made between Alan's team and us, and Alan's team and the local ER, which led to the Children's transport team coming to get Alan in their own ambulance.By the time they arrived Alan was very sick, and we were very frustrated at not being able to do for Alan all we knew he needed. Seeing the Children's transport team come in with that logo on their uniform was a blessed sight!
This would turn out to be a long visit for Alan. For the first time, he was found to have bacteria in his blood. And a very mean one, at that - more scientifically known as a gram-negative rod (GNR). Because of the identity of the bacteria (this one happened to be e.coli), Alan remained in the hospital on IV antibiotics for 10 days.But as usual for Alan, after a few days on antibiotics he was doing wonderfully! The rest of the stay to finish the course was very routine.
We were only home 10 days when yet another fever struck, and we once again headed to the local ER. Although he didn't seem quite as sick this time, the Children's transport still came to get him, this time in their airplane.
It was my first time to fly without motion sickness protection, and I'm sure due to nothing but answered prayer, I did just fine. Not only did I not get sick, but I experienced such an incredible peace, flying through the turbulent clouds, with nothing to listen to but the loud rumble of the engines. I felt God's presence in that little plane.
In some ways this trip was much the same as previous ones for Alan - fairly rapid recovery after a few days of iv antibiotics, only this time was another GNR bacteria. In others ways, it was a clear turning point.
Alan's team launched into an all-out search for answers to the cycle that by this time had become quite clear. As I said in Alan's online medical journal at the time, "We are in a cycle of him becoming "stinking sick" (as one of his doctors said this morning).... needing some intense care... to thriving while on the powerful antibiotics... and then we go home and the clock starts ticking until it all starts happening again."
During this 14-day treatment and search for answers, Dale once again came to stay and we got another room at RMH.
Soon, all conditions but one were ruled out. Finally, Alan had presented enough clues that his team felt certain enough of a possible explanation. We were presented with two treatment options. The first was to change his medications and then wait and see. If Alan got another infection, then it would be time for intestinal surgery.
The second option was to go ahead and schedule the surgery without waiting. Of course, both options had their advantages and disadvantages. We had a lot to think about.
Alan was dismissed from the hospital with the medication changes, and we had the option of calling at any time to ask for the surgery. It was one of the greatest responsibilities we have felt as parents.
At each lab draw following that we became more and more comfortable with the idea of waiting for the surgery. To see if time (and Alan's growth) and the medication would solve the issue.
The first half of the summer passed pretty uneventfully. Alan's labs looked good, and at one point he was not scheduled to come back to clinic for 3 months! Even at that, the fear of the next fever always lingered in the back of our minds. We did our best to trust God's protection for Alan, but the question was always there.... would there be another fever? When?
In the meantime, there were other issues that troubled us. Alan hadn't grown more than a centimeter or two since at least his first birthday, 7 months before. He was still wearing the same shoes he had been before transplant. I pulled out the pair of winter pajamas he was wearing the night he was called for transplant and they still fit perfectly.
So, before the 3-month clinic visit, we returned to Children's for what was supposed to be a quick nurse & dietitian visit and weight check.
However, the labs that had been drawn that morning came back with an abnormal result.
Because of the medication changes 6 weeks before, Alan's immune system was severely suppressed - much more so than normal even for a transplant patient. The lab that showed this result was repeated a few days later, and, sure enough, the condition was getting worse. Alan was now at severe risk for infection - a concerning thing at any time, but downright scary when you consider we were pretty much watching and waiting for the next fever. If that happened now, it would be a seriously life-threatening event for Alan.
However, in an odd sense of irony, the 'fix' for the neutropenia was to stop the daily antibiotic Alan had been on for 6 weeks to prevent another infection.
So, while Alan's immune system was practically nonexistent and at severe risk of infection, the medication he was on to prevent infection was dropped. Completely.
We felt like we were walking a high wire and our safety net had just been taken away. Our only choice was to trust God and his sovereignty. And pray. A lot.
And, with a big sigh of relief and many prayers of thanksgiving, just 10 days later (although it seemed a very long 10 days) Alan's labs showed his immune system had recovered, and the antibiotic was added back in.
Which was proof of God's amazing care and timing, because just 19 days later, Alan woke up with a fever.
Our response was pretty routine by this point. Make a mad dash for the local ER, contacting Children's on the way. Local ER starts IV fluids and obtains blood and urine for cultures. Does a chest x-ray. Another ambulance ride to Children's. Another admission to ICU. Another positive blood culture for GNRs.
While waiting in the local ER I couldn't help but realize that we were only 4 days away from Dale's birthday. He and I had been planning his party for weeks. I knew this admission would last long beyond party day, and I cried. In the grand scheme of all we had to worry about, one birthday party should be seen as minor. But in the wee hours of that morning, the cycle had worn me down, and my heart hurt that the party we had planned wouldn't happen.
As usual, Alan did well with the IV antibiotics, and by Saturday (party day) he was feeling great. Dale and four of his grandparents came, and they, along with Greg and Alan and me had a wonderful birthday party, right in Alan's room.
The only thing missing were the candles on the cake. Because setting off the sprinkler system did not sound like our idea of a good day! We have been asked often over the past two years, "How is Dale?". While I am sure that such disruption in a little boy's life has to have some effect, Dale has done very well.Any time we are away from him he stays with grandparents or great-grandparents. He gets one-on-one attention (something all kids enjoy!) and often special treats in the way of fun things to do, places to go, stuff to eat, and yes, even new toys sometimes.
He loves visiting Children's, and whenever possible, we have enjoy having him there with us. Both Children's and RMH have truly 'thought of everything' and go to great lengths to include and take care of patients siblings. In fact, many times even though Alan was either too sick or too young to take advantage of things offered, Dale was able to enjoy them to the fullest!
A couple of days after Dale's birthday party, Alan received a PICC line in his arm, which allowed us to finish this 10-day course of IV antibiotics at home. And of course, before we left the hospital, plans were made for surgery in 3 weeks.
Alan was admitted on Sunday night before surgery on Monday. Again, his hospital room filled with family as everyone wanted to personally give him hugs and kisses before he went into surgery. And of course, be there for us. ;)
Alan came through the surgery with flying colors. The surgeon appeared long before we had been told to expect him, with a big smile, and a huge air of relief and confidence. Not overly confident in himself, but confident in what he had seen inside Alan: the problem was clear, their guesses correct. And while he still couldn't give a guarantee, we could see it was all he could do to keep himself from promising that this had fixed it.
He did say that if Alan was fever-free for three months, we could all know this problem was behind us.
Alan's recovery went fantastically. In fact, he was dismissed from the hospital only 5 days after surgery! We were back and forth to Children's often for a couple of weeks for him to be monitored, and finally for his staples to be removed.
And there were no fevers. And his labs looked good.
Alan's second birthday came and went, with much celebration.
And still no fevers. And labs looked good.
He was doing so well that when his doctor had to be out of town suddenly, Alan was one of the kids doing good enough that his regular checkup appointment was moved to 2 weeks later than planned. :)
By that appointment, even though we were still 2 weeks away from the 'official' 3-month mark, I think everyone had seen enough to know: the infections were over.
Life finally seemed normal again.
Of course, it was at that same appointment that Alan's liver enzymes came back unexpectedly elevated. He was sent immediately for a sonogram, scheduled to come back in two days for more lab work, and tentatively set up for a biopsy.
And we were reminded that this is our new normal. Even though we are past one crisis, managing Alan's care is always there. Some days it is as simple as giving his medications. Other days it is more. But we have learned through it all to trust God with everything, because he is trustworthy, and to be thankful for all things - the good and the 'bad'.
It turned out that the most recent bump in numbers was a passing thing, and by the next blood draw had returned to normal on their own. No biopsy this time. (See?? I told you God was trustworthy!) ;)
We were able to celebrate Christmas, and Alan's 1 year transplant anniversary, and the New Year at home and with family, in good health.
This journey through liver disease and transplant has also taught us to take life one day at a time. We don't know what the future holds for Alan. For that matter, we don't know what the future holds for any of us. But God does. He is in control of all the things we can't see, or know, or plan for. And he is ready to take control of all we will give him. Because he can handle any of it much better than we can anyway. :)
The last picture of Alan is gorgeous! He is such a cutie pie. Thanks for taking the time to write the whole story out. You did a fantastic job, and I enjoyed reading it. I am so glad he is doing well in his "new normal." Love you guys!
ReplyDeleteEven though I was aware of what was going on at the time it was happening, to read it written down brings it all back again. To have been able to see everything that was going to happen would have been overwhelming. The Lord indeed does know best.
ReplyDeleteNana
I have so enjoyed reaading Alan's story: I have been encouraged by your faith, humbled by your courage and reminded, by your testimony, of God's goodness and faithfulness! Thanks so much for sharing a story from your heart.
ReplyDeleteI just finished reading your whole story and was struck by a few things. First, how present God was throughout and what a blessing it was to have had so many people praying for your son. And secondly, how impressed I am that you got through all of that and went on to expand your family and are looking to the future, truly leaving God in control.
ReplyDeleteAs the mother of a child with a health condition, I know how it takes a toll on the whole family and I admire your determination and faithfulness.
God is good.
Just read Alan's story and feel great empathy for you as a parent dealing with a very sick child but completely puzzled as to why you would continue to have more children and so close together in age? There is a limit to what a family can provide logistically, financially and emotionally even with God and prayer to each child.
ReplyDeleteAnonymous,
ReplyDeleteEvery child is a gift from God and it puzzles me why anyone would suggest that we not accept these gifts. Also, while we are limited in what we can provide (logistically, financially and emotionally), we serve a God Who isn't limited and He is our Provider. Children are a blessing. Always.