We've had a rough time since last time I posted. The original pull-thru surgery on the 17th went well, although Landon ended up losing 2/3 of his colon. He only has about a foot left. What is left of his colon looks very different than a typical person's, which looks like an upside down horse-shoe. He only has one side of that horse-shoe like shape left, and so it goes slightly up and the remainder is stretched to his rectum. His bowel function returned earlier than expected and everything related to the surgery itself went super smoothly.
Unfortunately, we ran into some complications. The first complication was respiratory- both of his lungs partially collapsed at the bottoms. No big deal, though, they started having respiratory therapy come and work with him 4x per day and it improved almost immediately. Within a few days it was resolved.
The second, and biggest complication, was that he spiked a high fever on day 2 post-op (Nov. 19th.) They started him on a broad-spectrum antibiotic after they took cultures. Cultures all came back fine, although it was clear Landon wasn't recovering like he should be. He continued on antibiotics but stayed sick with little to no improvement. They ordered a CT scan with contrast, which showed that he had a large abdominal abscess. We thought this was great news to find out the source of the problem, and it sounded like a simple solution- they wanted to go in the next morning and surgically place a drain to drain the abscess. Sounds simple enough, right? Wrong. Once they got in there, it was multiple abscesses close together, rather than a single abscess. The interventional radiologist placed the drain in the largest one, but didn't sound like he had high hopes of it working. And it didn't..
Three days after the drain was placed, it was clear that Landon was taking a rapid downward spiral. He was up screaming "oww" all night long, which should not have been the case 11 days post-op. They had to order Oxycodone for his pain, meanwhile his fever spiked to above 103 and his heartrate was staying in the 190s. He started looking very sick late Friday night (the 28th) and ended up going back into emergency surgery to re-open the abdomen, remove abscesses, and flush out the abdominal cavity. Emergency surgery was a little scary, but he got through it okay. Before he went back, we signed consent for an ileostomy to be placed, should it need to be. If the colon was injured or became injured while removing the abscesses, he would have had to have an ileostomy to give what's left of his colon time to heal. Fortunately, he had a successful surgery, although it ended up being the largest incision that he has had to have for a surgery so far.
We are almost 48 hours past the end of his emergency surgery Friday night. He seems to be recovering well, and his bowel function is already back again. He gets to drink tomorrow, and if all goes well, eat on Tuesday. We are hoping and praying that he heals and fully recovers as smoothly as possible, now that our one planned surgery turned into 3 within 2 weeks.
Please keep Landon in your thoughts and prayers! Like I mentioned before, the actual pull-thru surgery looks very promising so far. We are anxious to see how things go over the next few months, and if and when the Botox that was done along with the surgery wears off, if it makes a big difference and needs to be re-done. We are still in the hospital, starting week 3. We're hoping to get out of here by the end of the week if things keep moving in the right direction. I will update soon on how things go.
Sunday, November 30, 2014
Sunday, November 16, 2014
The day before surgery- and many more updates!
Hello everyone! I have been pathetic at updating on here, but I promise I have had a good reason! We are (for) now a family of 7! In addition to our perfect little princess that is still with us, we became even crazier in early August and took a newborn baby girl. It was not the ideal time, as the call came 4 days before I went back to work for this school year, but our sweet baby girl has been worth every bit of the chaos that it was at first. After the initial adjustment period, we have a nice routine in place and we are all doing great. People always look at us like we're crazy when we're out at public places, but we almost always get compliments on how well behaved all our children are. Now for a long Landon update..
Landon has continued to do awesome since his colostomy re-do late last December, and then the hiccup hospital admission in early January with the round of Cipro. He has grown and developed like a champ! His language is continuing to grow exponentially, although it is still a bit delayed. He keeps up with his brothers and for-now (maybe forever?) sister. He loves our new baby girl. It has brought out an amazing, nurturing side of him. He loves to help with her any way that he can. He always plays with her and gives her kisses.
Last time I updated, the plan was to wait a long time before reversing his colostomy again and doing the re-do pull-thru. AND to follow Dr. Levitt to Nationwide Children's hospital in Columbus, Ohio when we eventually did it. Here are some major factors that changed that decision:
-The colostomy prolapsing constantly. The first time it did it, I freaked out and called the hospital. It was scary having several inches of intestines hanging out of my child's abdomen. It turned out to be okay, but it is a nuisance and it continued to happen all the time. It made us seriously think about the reality of the longer drive to Columbus in the event of an urgent medical situation.
-Insurance. We are blessed to have amazing insurance through John's work. We have already met our maximum out of pocket for the year, and doing the surgery this calendar year will save us thousands of dollars. As much as money shouldn't be a factor, having a child with a rare disease drains you financially. We have also had a struggle getting full insurance coverage of Landon's colostomy supplies this time around. It's been hours on the phone with the insurance company, writing appeal letters, and many, many headaches.
-Potty-training. Landon is making good progress towards being potty-trained. Although he still goes in his pull-up, he urinates in the toilet every time we take him. With his colostomy, he almost constantly involuntarily passes gas loudly. I've been worried about this for when he starts pre-k next August. I'm worried about him getting off to a rough start socially if he has other children making fun of him. I also think that having him completely potty trained is a reasonable goal by next August, although his bowels may or may not cooperate, we can at least have a good handle on things. Doing the pull-thru now is a step in the direction of making that possible.
-Cincinnati Children's is AWESOME. (So is STL Children's, I just need to plug in!) The resources here are amazing. This is a comfortable place to stay for weeks at a time- we already know that. Going to a new hospital is scary. We know Cincinnati. We know what hotel to stay in, what there is to do here, and there are many discounts available through the hospital which make it affordable to bring our whole family and make a fun mini-vacation out of the trip when we are here for Landon to do anything outpatient.
So.... back a couple months ago I scheduled a phone appointment with Dr. Helmrath in Cincinnati. He is highly recommended, and has actually participated in Landon's care before when Dr. Levitt consulted with him. He specializes in complicated cases of Hirschsprung's disease, like Landon's. I loved him. I loved his plan. It just felt right. He felt it was better for Landon's long-term outcome to do the surgery early in his life. He wants to be super cautious and proactive about preventing enterocolitis by doing botox with the surgery, and keeping him on Rifaxamin for 3 months following the surgery. He made me feel safe about doing it now. We moved forward with scheduling, and planned it around Thanksgiving break for my job so that I'm missing less.
That leads to right now. Here we are in the hospital doing bowel prep for surgery tomorrow morning. He is having a colostomy closure/pull-thru/partial colectomy (again, they are removing a bit more.) Please keep Landon in your prayers that everything goes well, and this proves to be successful over the next few months. This has the potential to be his last surgery if it works. While we are here in the hospital I have some time on my hands where I will be able to update how things go over the next week. I will update with how surgery and recovery goes later this week.
Landon has continued to do awesome since his colostomy re-do late last December, and then the hiccup hospital admission in early January with the round of Cipro. He has grown and developed like a champ! His language is continuing to grow exponentially, although it is still a bit delayed. He keeps up with his brothers and for-now (maybe forever?) sister. He loves our new baby girl. It has brought out an amazing, nurturing side of him. He loves to help with her any way that he can. He always plays with her and gives her kisses.
Last time I updated, the plan was to wait a long time before reversing his colostomy again and doing the re-do pull-thru. AND to follow Dr. Levitt to Nationwide Children's hospital in Columbus, Ohio when we eventually did it. Here are some major factors that changed that decision:
-The colostomy prolapsing constantly. The first time it did it, I freaked out and called the hospital. It was scary having several inches of intestines hanging out of my child's abdomen. It turned out to be okay, but it is a nuisance and it continued to happen all the time. It made us seriously think about the reality of the longer drive to Columbus in the event of an urgent medical situation.
-Insurance. We are blessed to have amazing insurance through John's work. We have already met our maximum out of pocket for the year, and doing the surgery this calendar year will save us thousands of dollars. As much as money shouldn't be a factor, having a child with a rare disease drains you financially. We have also had a struggle getting full insurance coverage of Landon's colostomy supplies this time around. It's been hours on the phone with the insurance company, writing appeal letters, and many, many headaches.
-Potty-training. Landon is making good progress towards being potty-trained. Although he still goes in his pull-up, he urinates in the toilet every time we take him. With his colostomy, he almost constantly involuntarily passes gas loudly. I've been worried about this for when he starts pre-k next August. I'm worried about him getting off to a rough start socially if he has other children making fun of him. I also think that having him completely potty trained is a reasonable goal by next August, although his bowels may or may not cooperate, we can at least have a good handle on things. Doing the pull-thru now is a step in the direction of making that possible.
-Cincinnati Children's is AWESOME. (So is STL Children's, I just need to plug in!) The resources here are amazing. This is a comfortable place to stay for weeks at a time- we already know that. Going to a new hospital is scary. We know Cincinnati. We know what hotel to stay in, what there is to do here, and there are many discounts available through the hospital which make it affordable to bring our whole family and make a fun mini-vacation out of the trip when we are here for Landon to do anything outpatient.
So.... back a couple months ago I scheduled a phone appointment with Dr. Helmrath in Cincinnati. He is highly recommended, and has actually participated in Landon's care before when Dr. Levitt consulted with him. He specializes in complicated cases of Hirschsprung's disease, like Landon's. I loved him. I loved his plan. It just felt right. He felt it was better for Landon's long-term outcome to do the surgery early in his life. He wants to be super cautious and proactive about preventing enterocolitis by doing botox with the surgery, and keeping him on Rifaxamin for 3 months following the surgery. He made me feel safe about doing it now. We moved forward with scheduling, and planned it around Thanksgiving break for my job so that I'm missing less.
That leads to right now. Here we are in the hospital doing bowel prep for surgery tomorrow morning. He is having a colostomy closure/pull-thru/partial colectomy (again, they are removing a bit more.) Please keep Landon in your prayers that everything goes well, and this proves to be successful over the next few months. This has the potential to be his last surgery if it works. While we are here in the hospital I have some time on my hands where I will be able to update how things go over the next week. I will update with how surgery and recovery goes later this week.
Monday, July 21, 2014
Keep on keepin' on
Here is that longer update that I promised :)
I'll start off with some recent pictures. Since pictures are worth a thousand words I'll share some of Landon's latest adventures.
2nd Birthday Party- Bubble Guppie Bash
He decided he would rather mow most of the time...
..And blowing out the candles (which I always forget and have to have someone run out and buy!)
Myrtle Beach 2014 - He had such a better time at the beach this year since he was able to walk.
Adventures at St. Louis Zoo
The many faces of Landon..
..and his newest obsession- boots. He only wants to wear boots.
As you can see he got his first real haircut. It was actually an accident. His hair looked cute long, but the back was growing faster and it was starting to look like a mullet. I tried to trim it up and botched the job, so I tried to fix it with clippers. He went crazy and wouldn't sit still and I accidentally buzzed a streak down the middle of the back of his head. The only way to fix it was to buzz the rest. He looks really blonde with his hair short, and it really made him look grown up.
Our summer has been going great. We have been doing the best kinds of physical therapy- hours of swimming and playing at the park. He loves to swim this year but doesn't like to do any work. He floats around the pool helplessly and tells his brothers to bring him toys. At the park he is able to do most things. Although his balance when he is walking and running is still so-so, his balance when he is climbing to go down a slide is amazing. He finally understands the dangers of falling off the edge and so he is able to play with Carson and Austin on the bigger things.
His expressive language is unbelievable. He's verbally expressing all of his wants and needs, commenting, requesting, and using 1-3 word phrases. I hear new words about every 10 minutes. His new favorite things are to tell me "no no" when he doesn't like what I'm asking him to do, and to tell himself "no." He asks for drinks of my tea and then answers his own question- "tea? no." After 2 years of rejection, he has finally decided he likes "ewww-t" or "juice" as we commonly call it. He always wants "more ewww-t mom." Just like his brothers, he is hilarious and adds even more laughter to the household now that he is talking.
Speaking of the household, like I mentioned before, it has expanded again. In March we finished classes and paperwork to get our license to become foster parents. In the beginning of May, a beautiful 2 year old girl "Princess S" came to live with us. It is so awesome having a girl in the house. I can't tell you how much I've enjoyed buying pink, frilly things, painting her toenails, and putting bows in her hair! She is absolutely perfect. She's girly, but she also likes to keep up with the boys and doesn't mind getting dirty. We're enjoying our time with her and trying to fill every day with fun and quality time like it will be our last, although we are planning to adopt her if she is unable to return home.
It has worked out perfectly that she is the same age as Landon. They enjoy playing together about half the time, and the other half the time they fight like brother and sister. Landon hadn't spent much time around children his age before she came, so her being here modeling good use of language is probably what prompted him to start talking so much more.
Landon is still in good health and growing like a weed. He's now wearing 3T clothing! We had a scare a few weeks ago when his colostomy prolapsed. I emailed Dr. Levitt, and being the amazing surgeon that he is, he emailed me back at 11 at night to let me know that it was okay. Apparently it is more of a cosmetic issue and nuisance than medical issue. As scary as it was seeing his intestines protruding several inches outside his body, his colostomy continued to function and it returned to normal overnight. It was prolapsed 4 more times since then, but every time it has gone back down within a few hours. For now we are just keeping an eye on it. Prolapsing a few hours a week shouldn't be a problem, but if it gets worse and starts negatively affecting his quality of life we will have to consider reversing it sooner rather than later. We talked about going ahead and reversing it this summer or possibly in December, but decided we are too uneasy about the "what-ifs." Life is so good for him right now and he has so much momentum going with his development it's too scary to rock the boat and possibly end up dealing with chronic illness again.
As long as everything is going well I will drop in from time to time with some quick updates and news. I'm enjoying writing these type of posts rather than discussing hospital stays, surgeries, and difficult decisions. Thanks again to everyone that has followed Landon's story and kept our family in your prayers!
I'll start off with some recent pictures. Since pictures are worth a thousand words I'll share some of Landon's latest adventures.
2nd Birthday Party- Bubble Guppie Bash
He decided he would rather mow most of the time...
..And blowing out the candles (which I always forget and have to have someone run out and buy!)
Myrtle Beach 2014 - He had such a better time at the beach this year since he was able to walk.
Adventures at St. Louis Zoo
The many faces of Landon..
..and his newest obsession- boots. He only wants to wear boots.
As you can see he got his first real haircut. It was actually an accident. His hair looked cute long, but the back was growing faster and it was starting to look like a mullet. I tried to trim it up and botched the job, so I tried to fix it with clippers. He went crazy and wouldn't sit still and I accidentally buzzed a streak down the middle of the back of his head. The only way to fix it was to buzz the rest. He looks really blonde with his hair short, and it really made him look grown up.
Our summer has been going great. We have been doing the best kinds of physical therapy- hours of swimming and playing at the park. He loves to swim this year but doesn't like to do any work. He floats around the pool helplessly and tells his brothers to bring him toys. At the park he is able to do most things. Although his balance when he is walking and running is still so-so, his balance when he is climbing to go down a slide is amazing. He finally understands the dangers of falling off the edge and so he is able to play with Carson and Austin on the bigger things.
His expressive language is unbelievable. He's verbally expressing all of his wants and needs, commenting, requesting, and using 1-3 word phrases. I hear new words about every 10 minutes. His new favorite things are to tell me "no no" when he doesn't like what I'm asking him to do, and to tell himself "no." He asks for drinks of my tea and then answers his own question- "tea? no." After 2 years of rejection, he has finally decided he likes "ewww-t" or "juice" as we commonly call it. He always wants "more ewww-t mom." Just like his brothers, he is hilarious and adds even more laughter to the household now that he is talking.
Speaking of the household, like I mentioned before, it has expanded again. In March we finished classes and paperwork to get our license to become foster parents. In the beginning of May, a beautiful 2 year old girl "Princess S" came to live with us. It is so awesome having a girl in the house. I can't tell you how much I've enjoyed buying pink, frilly things, painting her toenails, and putting bows in her hair! She is absolutely perfect. She's girly, but she also likes to keep up with the boys and doesn't mind getting dirty. We're enjoying our time with her and trying to fill every day with fun and quality time like it will be our last, although we are planning to adopt her if she is unable to return home.
It has worked out perfectly that she is the same age as Landon. They enjoy playing together about half the time, and the other half the time they fight like brother and sister. Landon hadn't spent much time around children his age before she came, so her being here modeling good use of language is probably what prompted him to start talking so much more.
Landon is still in good health and growing like a weed. He's now wearing 3T clothing! We had a scare a few weeks ago when his colostomy prolapsed. I emailed Dr. Levitt, and being the amazing surgeon that he is, he emailed me back at 11 at night to let me know that it was okay. Apparently it is more of a cosmetic issue and nuisance than medical issue. As scary as it was seeing his intestines protruding several inches outside his body, his colostomy continued to function and it returned to normal overnight. It was prolapsed 4 more times since then, but every time it has gone back down within a few hours. For now we are just keeping an eye on it. Prolapsing a few hours a week shouldn't be a problem, but if it gets worse and starts negatively affecting his quality of life we will have to consider reversing it sooner rather than later. We talked about going ahead and reversing it this summer or possibly in December, but decided we are too uneasy about the "what-ifs." Life is so good for him right now and he has so much momentum going with his development it's too scary to rock the boat and possibly end up dealing with chronic illness again.
As long as everything is going well I will drop in from time to time with some quick updates and news. I'm enjoying writing these type of posts rather than discussing hospital stays, surgeries, and difficult decisions. Thanks again to everyone that has followed Landon's story and kept our family in your prayers!
Sunday, July 6, 2014
2 years..
It's amazing what a difference 2 years can make.
Two years ago today was the worst day of my life. Landon was only 6 days old at that point, and up until then we had fought the battle of our lives trying to convince medical professionals that something was wrong with our son. After 2 days spent in our local hospital while they did next to nothing, they saw that Landon was not getting better on his own. He continued to vomit bile, he wouldn't eat, and couldn't stay awake longer than a few minutes a day. It was at that point that they decided to transfer us to our local children's hospital 2 hours away.
I was only 6 days out from my c-section, and I was advised not to ride on the ambulance with Landon. I couldn't handle the thought of Landon beating me to the hospital and being alone while someone drove me up there. I signed a waiver and figured Barnes Jewish was right next door with an Emergency Room in case I needed to be stitched up again. Yes, the ambulance ride was excruciating. Yes, my incision did tear open some. But thankfully, no, I did not have to seek medical care for myself. That was yet another small event that could have drastically changed our outcome.
Landon and I went up to the General Medicine floor. We had about half an hour alone, and then another newborn baby boy came to the other bed in the room. The whole family, extended family, etc. also piled in, like they were having a small family reunion. I sat there alone, holding Landon, listening to their conversations, as doctors quickly started coming in and out and taking Landon's medical history. It was immediately a night and day difference from our experience at the local hospital. They wanted to do something to help Landon, and they wanted to do it right then. They ordered a spinal tap amongst other tests to be done that day.
Within an hour and a half of our arrival, they had already taken him back for the spinal tap. I wasn't allowed to go with him, and so I used the break to run down and get a salad from the cafeteria. Our nurse, Brandie, had been so great from the start. Since I was alone, she said she would go ahead and start his IV and then he could hang out in the nurses station to give me a chance to eat. I finished my food and let her know I was ready to Landon back. She handed him to me, and as she made the transfer, we both caught a glimpse of Landon's face. It looked flushed, but with dark purple, more like a bruise than the pink/red color that it normally would be. She started screaming for a doctor to come in right away. Dr. Patel was the first to make it in. She sat Landon on his bed and unsnapped his hospital top. His whole chest was splotchy and black. She yelled for someone to get stats on him right away. They did, and found that he had no pulse. They called a code and started trying to resuscitate him.
One of the nurses, or maybe a social worker, I don't remember who it was, but they pulled me out of the room. I don't remember walking anywhere. I'm still not sure if they wheeled me in there, but there wasn't a wheel chair and so I must have walked. They said I needed to call family. Instead, I asked for a chaplain right away to pray with me. We prayed for Landon, and she went closer to the room and prayed for him. Every 5 minutes they came in and said that they hadn't gotten him back, but they were still working on him. After this had happened 6 times, they said they could put him on ECMO (a baby heart and lung bypass system) to buy some extra time. After 35 minutes they came with the first of the good news to come. Landon has regained a pulse, and although he was on pressors to stimulate a heartbeat, he did have one. He was clinically alive and on his way downstairs to the PICU.
This time, I remember being asked if I needed a wheelchair or if I could walk. I tried to stand up, but my legs practically buckled underneath me. I took them up on the offer of the wheelchair, and they moved me down to the PICU conference room. They didn't put me in the waiting room, they put me in the conference room- the room they put you in when they are prepared to come in and tell you devastating news. And they did tell me devastating news. Brain injuries don't entirely occur while the brain is cut off from oxygen and blood, they continue to occur when the blood starts returning to the brain. This meant that we had to wait to see if Landon could maintain enough brain function to survive. Not enough brain function to walk, talk, crawl, or even have voluntary movement what-so-ever, just maybe enough to survive.
The next few days he started showing us that he was going to survive. He weaned off of the pressors and the ventilator. The team kept saying how impressed they were that he pulled through and that he was doing as well as he was. Since we couldn't take food into the PICU, John and I would walk to the restaurants nearby and eat outside on the patio. We would talk about what our life was going to be like when we brought Landon home. How as he got older we would need to make our house handicap accessible, as well as our vehicle. How I wanted to move to the next county over, so he would go to school in the special education co-op that I work for, which I feel has the most best special needs classrooms in the area. That sounds like a difficult conversation to have, but surprisingly to most I'm sure, that was one of the happiest conversations I've had in my life. We were talking about our baby boy's future, rather than how we were going to afford a funeral.
The last 3 days that Landon spent in the PICU were our "miracle" days. This was when he started going way above and beyond just surviving, he gradually regained all of the skills that he had prior to his cardiac arrest. He had all of the newborn reflexes back, he was breathing on his own with on and off oxygen supplementation, and he was able to suck on a pacifier. It is indescribable the amount of joy it brought to have our baby back. Even if he never gained another skill the rest of his life, just to have him back as he was before...
His MRI was on Friday, a week following his cardiac arrest. I told John that I had a funny feeling that we wasn't going to have brain damage at all. I'm sure he thought I was crazy, but sure enough, there was no detectible brain damage that showed up on the MRI from the incident. We smiled and thanked the neurologist, as this was a very short conversation. He summed it up by saying he couldn't explain how Landon didn't have brain damage. And the disclaimer that we would have to wait and see what Landon would and would not be able to do- that this was a very traumatic event, plus a long hospitalization, the possibility depending on the etiology of Landon's issues of repeat hospital stays, surgeries, etc. affecting his development, and so on.
The rest is history now. We went on to get Landon's Hirschsprung's disease diagnosis and his first colostomy surgery.
A year ago today, we were able to be released from our week long hospital stay just in time to not have to be in the hospital on this day to relive the memories. So definitely an improvement! But not as much as this year, when we mark over 6 months since Landon's last hospitalization! As well as he is doing since his last surgery, I never had to even entertain the possibility of him spending his 2nd birthday or today back in the hospital. What a difference 2 years makes!
I will update more with what's going on with our family soon. We have had some big changes involving Landon suddenly talking up a storm, and a new child that joined our family 8 weeks ago- a little girl that we are fostering while hoping to adopt (and yes the 4th child really will be the last child this time once we make it back to an even number :) ! Yeah I told you they were BIG changes! Since the last time I posted, we also went on Landon's 2nd vacation back to Myrtle Beach, and Landon had an awesome 2nd birthday. So a lot of updates and pictures to come soon!
Two years ago today was the worst day of my life. Landon was only 6 days old at that point, and up until then we had fought the battle of our lives trying to convince medical professionals that something was wrong with our son. After 2 days spent in our local hospital while they did next to nothing, they saw that Landon was not getting better on his own. He continued to vomit bile, he wouldn't eat, and couldn't stay awake longer than a few minutes a day. It was at that point that they decided to transfer us to our local children's hospital 2 hours away.
I was only 6 days out from my c-section, and I was advised not to ride on the ambulance with Landon. I couldn't handle the thought of Landon beating me to the hospital and being alone while someone drove me up there. I signed a waiver and figured Barnes Jewish was right next door with an Emergency Room in case I needed to be stitched up again. Yes, the ambulance ride was excruciating. Yes, my incision did tear open some. But thankfully, no, I did not have to seek medical care for myself. That was yet another small event that could have drastically changed our outcome.
Landon and I went up to the General Medicine floor. We had about half an hour alone, and then another newborn baby boy came to the other bed in the room. The whole family, extended family, etc. also piled in, like they were having a small family reunion. I sat there alone, holding Landon, listening to their conversations, as doctors quickly started coming in and out and taking Landon's medical history. It was immediately a night and day difference from our experience at the local hospital. They wanted to do something to help Landon, and they wanted to do it right then. They ordered a spinal tap amongst other tests to be done that day.
Within an hour and a half of our arrival, they had already taken him back for the spinal tap. I wasn't allowed to go with him, and so I used the break to run down and get a salad from the cafeteria. Our nurse, Brandie, had been so great from the start. Since I was alone, she said she would go ahead and start his IV and then he could hang out in the nurses station to give me a chance to eat. I finished my food and let her know I was ready to Landon back. She handed him to me, and as she made the transfer, we both caught a glimpse of Landon's face. It looked flushed, but with dark purple, more like a bruise than the pink/red color that it normally would be. She started screaming for a doctor to come in right away. Dr. Patel was the first to make it in. She sat Landon on his bed and unsnapped his hospital top. His whole chest was splotchy and black. She yelled for someone to get stats on him right away. They did, and found that he had no pulse. They called a code and started trying to resuscitate him.
One of the nurses, or maybe a social worker, I don't remember who it was, but they pulled me out of the room. I don't remember walking anywhere. I'm still not sure if they wheeled me in there, but there wasn't a wheel chair and so I must have walked. They said I needed to call family. Instead, I asked for a chaplain right away to pray with me. We prayed for Landon, and she went closer to the room and prayed for him. Every 5 minutes they came in and said that they hadn't gotten him back, but they were still working on him. After this had happened 6 times, they said they could put him on ECMO (a baby heart and lung bypass system) to buy some extra time. After 35 minutes they came with the first of the good news to come. Landon has regained a pulse, and although he was on pressors to stimulate a heartbeat, he did have one. He was clinically alive and on his way downstairs to the PICU.
This time, I remember being asked if I needed a wheelchair or if I could walk. I tried to stand up, but my legs practically buckled underneath me. I took them up on the offer of the wheelchair, and they moved me down to the PICU conference room. They didn't put me in the waiting room, they put me in the conference room- the room they put you in when they are prepared to come in and tell you devastating news. And they did tell me devastating news. Brain injuries don't entirely occur while the brain is cut off from oxygen and blood, they continue to occur when the blood starts returning to the brain. This meant that we had to wait to see if Landon could maintain enough brain function to survive. Not enough brain function to walk, talk, crawl, or even have voluntary movement what-so-ever, just maybe enough to survive.
The next few days he started showing us that he was going to survive. He weaned off of the pressors and the ventilator. The team kept saying how impressed they were that he pulled through and that he was doing as well as he was. Since we couldn't take food into the PICU, John and I would walk to the restaurants nearby and eat outside on the patio. We would talk about what our life was going to be like when we brought Landon home. How as he got older we would need to make our house handicap accessible, as well as our vehicle. How I wanted to move to the next county over, so he would go to school in the special education co-op that I work for, which I feel has the most best special needs classrooms in the area. That sounds like a difficult conversation to have, but surprisingly to most I'm sure, that was one of the happiest conversations I've had in my life. We were talking about our baby boy's future, rather than how we were going to afford a funeral.
The last 3 days that Landon spent in the PICU were our "miracle" days. This was when he started going way above and beyond just surviving, he gradually regained all of the skills that he had prior to his cardiac arrest. He had all of the newborn reflexes back, he was breathing on his own with on and off oxygen supplementation, and he was able to suck on a pacifier. It is indescribable the amount of joy it brought to have our baby back. Even if he never gained another skill the rest of his life, just to have him back as he was before...
His MRI was on Friday, a week following his cardiac arrest. I told John that I had a funny feeling that we wasn't going to have brain damage at all. I'm sure he thought I was crazy, but sure enough, there was no detectible brain damage that showed up on the MRI from the incident. We smiled and thanked the neurologist, as this was a very short conversation. He summed it up by saying he couldn't explain how Landon didn't have brain damage. And the disclaimer that we would have to wait and see what Landon would and would not be able to do- that this was a very traumatic event, plus a long hospitalization, the possibility depending on the etiology of Landon's issues of repeat hospital stays, surgeries, etc. affecting his development, and so on.
The rest is history now. We went on to get Landon's Hirschsprung's disease diagnosis and his first colostomy surgery.
A year ago today, we were able to be released from our week long hospital stay just in time to not have to be in the hospital on this day to relive the memories. So definitely an improvement! But not as much as this year, when we mark over 6 months since Landon's last hospitalization! As well as he is doing since his last surgery, I never had to even entertain the possibility of him spending his 2nd birthday or today back in the hospital. What a difference 2 years makes!
I will update more with what's going on with our family soon. We have had some big changes involving Landon suddenly talking up a storm, and a new child that joined our family 8 weeks ago- a little girl that we are fostering while hoping to adopt (and yes the 4th child really will be the last child this time once we make it back to an even number :) ! Yeah I told you they were BIG changes! Since the last time I posted, we also went on Landon's 2nd vacation back to Myrtle Beach, and Landon had an awesome 2nd birthday. So a lot of updates and pictures to come soon!
Wednesday, April 23, 2014
No News is Good News
Hi everyone! I realize I have let this go way too long without an update. Landon is doing great since his last surgery. He has now officially experienced over 3 months of the closest thing to a normal life that he had ever known. The only minor complication we have experienced is an external ulcer on the portion of his intestines that is exposed outside his body (used to create the ostomy) and Dr. Levitt said that as long as everything is working okay it is harmless.
Speaking of which, Dr. Levitt has officially moved to Nationwide Children's in Columbus. It's about an extra hour to hour and a half drive past Cincinnati, but we made the decision to follow him rather than establishing with a new surgeon. Cincinnati has been great to us and our entire family has made many fun memories while making the best of the circumstances that brought us there, but I feel like this is for the best. Landon's medical history is so extensive that it's best we go with the surgeon that has operated on him the most, and operated on more Hirschsprung's disease patients than any doctor in the world.
Developmentally, Landon is doing okay. It's always been such a rollercoaster of him looking somewhat caught up and then missing another huge milestone. We are following up with neurology this summer and I'm eager to hear what they think. I have concerns with his balance and how much he still falls down when he walks, and his language delay is becoming more significant. Still, we are thankful for all of the skills he already has that he was never expected to have. When you are at a point where no one expects your child to survive, much less ever surpass a vegetative state, any and every accomplishment is a blessing whether on time (like some have been..yay!) or not.
All in all, I'm continuing to feel incredibly blessed to be Landon's mom. I'm thankful to be out of the state of mind that so many people are stuck in thinking that any of us, whether healthy or not, are entitled to to the next moment from now. I'm thankful know past any reasonable doubt that God has a plan, and no matter how dark the moment seems, He will see us through it. For some reason a moment comes back to mind- the one time I broke down while Landon was fighting for his life. I left the PICU to go for lunch with Carson and Austin, this is when Landon was fairly stable but still on life support with an incredibly poor prognosis. Carson asked when he would be able to give Landon his pacifier again. I yelled "why did this happen to us!?" Me, I can handle anything, but my precious 2 and 3 year olds that have been waiting to be big brothers and have suddenly had the experience ripped away along with both parents that had to go stay in the hospital far away from home- they don't understand. When Landon weaned off the ventilator and was cleared for oral feeds, their speech therapist came in and assessed Landon. She found that he did not have a suck reflex present and was not appropriate for oral feeds and they had to place the first of many feeding tubes. Carson's comment was always in the back of my mind, how out of this entire experience all he wanted was to give his brother his paci when he cried. So this speech therapist racked her brain to remember what she had learned in grad school about swallowing and stimulating a suck reflex in a newborn- which had never had the opportunity to make it into clinical practice- and by the end of the day Landon was sucking a pacifier for short periods of time. I have never felt such a huge victory in my life. Landon still at that point may not have ever been able to do anything else, but Carson could finally give him a paci the next time he visited.
In hindsight, it's hard to make sense of why God wouldn't have given us this child. We couldn't have asked to be better equipped to handle the situation- this includes everyone that has followed Landon's story, helped with the boys, meals, financially, and kept Landon in your prayers relentlessly. Rather than feeling victimized that Landon spent the majority of his first holidays, including his first birthday in the hospital, I'm thankful to have our eyes opened to the fact that both children's hospitals we have received treatment in are full of sick kids. Whether it's Christmas, their birthday, or not, they are there. Many for months at a time, and even farther from home than we were- even in Cincinnati. It gives us a huge reason to celebrate the little things we take for granted- like being at home with our family in one place.
On Landon's first birthday, volunteers at St. Louis Children's brought in a donated birthday gift and hung a banner. I can't put into words how much that meant to us and how much we (and Landon will eventually) cherish the photographs! This year we are looking like we are on track to not spend Landon's 2nd birthday in the hospital, but interestingly enough, we are choosing to. We will be celebrating not being admitted to the hospital by delivering donations to those that are. The goal is to pay it forward x100- so in turn for Landon's birthday gift we will donate 100 gifts. I'll be posting more info to come, but I'm thinking a huge birthday party with cupcakes and balloons galore, and in lieu of a gift for Landon bring a gift to donate to a child- birth to teen- for us to deliver in honor of Landon. Everyone is invited!
On a final note, with Landon in better health we have been able to catch up on many "normal" things like getting family pictures done. They turned out amazing! I'll leave you all with a sample :)
Speaking of which, Dr. Levitt has officially moved to Nationwide Children's in Columbus. It's about an extra hour to hour and a half drive past Cincinnati, but we made the decision to follow him rather than establishing with a new surgeon. Cincinnati has been great to us and our entire family has made many fun memories while making the best of the circumstances that brought us there, but I feel like this is for the best. Landon's medical history is so extensive that it's best we go with the surgeon that has operated on him the most, and operated on more Hirschsprung's disease patients than any doctor in the world.
Developmentally, Landon is doing okay. It's always been such a rollercoaster of him looking somewhat caught up and then missing another huge milestone. We are following up with neurology this summer and I'm eager to hear what they think. I have concerns with his balance and how much he still falls down when he walks, and his language delay is becoming more significant. Still, we are thankful for all of the skills he already has that he was never expected to have. When you are at a point where no one expects your child to survive, much less ever surpass a vegetative state, any and every accomplishment is a blessing whether on time (like some have been..yay!) or not.
All in all, I'm continuing to feel incredibly blessed to be Landon's mom. I'm thankful to be out of the state of mind that so many people are stuck in thinking that any of us, whether healthy or not, are entitled to to the next moment from now. I'm thankful know past any reasonable doubt that God has a plan, and no matter how dark the moment seems, He will see us through it. For some reason a moment comes back to mind- the one time I broke down while Landon was fighting for his life. I left the PICU to go for lunch with Carson and Austin, this is when Landon was fairly stable but still on life support with an incredibly poor prognosis. Carson asked when he would be able to give Landon his pacifier again. I yelled "why did this happen to us!?" Me, I can handle anything, but my precious 2 and 3 year olds that have been waiting to be big brothers and have suddenly had the experience ripped away along with both parents that had to go stay in the hospital far away from home- they don't understand. When Landon weaned off the ventilator and was cleared for oral feeds, their speech therapist came in and assessed Landon. She found that he did not have a suck reflex present and was not appropriate for oral feeds and they had to place the first of many feeding tubes. Carson's comment was always in the back of my mind, how out of this entire experience all he wanted was to give his brother his paci when he cried. So this speech therapist racked her brain to remember what she had learned in grad school about swallowing and stimulating a suck reflex in a newborn- which had never had the opportunity to make it into clinical practice- and by the end of the day Landon was sucking a pacifier for short periods of time. I have never felt such a huge victory in my life. Landon still at that point may not have ever been able to do anything else, but Carson could finally give him a paci the next time he visited.
In hindsight, it's hard to make sense of why God wouldn't have given us this child. We couldn't have asked to be better equipped to handle the situation- this includes everyone that has followed Landon's story, helped with the boys, meals, financially, and kept Landon in your prayers relentlessly. Rather than feeling victimized that Landon spent the majority of his first holidays, including his first birthday in the hospital, I'm thankful to have our eyes opened to the fact that both children's hospitals we have received treatment in are full of sick kids. Whether it's Christmas, their birthday, or not, they are there. Many for months at a time, and even farther from home than we were- even in Cincinnati. It gives us a huge reason to celebrate the little things we take for granted- like being at home with our family in one place.
On Landon's first birthday, volunteers at St. Louis Children's brought in a donated birthday gift and hung a banner. I can't put into words how much that meant to us and how much we (and Landon will eventually) cherish the photographs! This year we are looking like we are on track to not spend Landon's 2nd birthday in the hospital, but interestingly enough, we are choosing to. We will be celebrating not being admitted to the hospital by delivering donations to those that are. The goal is to pay it forward x100- so in turn for Landon's birthday gift we will donate 100 gifts. I'll be posting more info to come, but I'm thinking a huge birthday party with cupcakes and balloons galore, and in lieu of a gift for Landon bring a gift to donate to a child- birth to teen- for us to deliver in honor of Landon. Everyone is invited!
On a final note, with Landon in better health we have been able to catch up on many "normal" things like getting family pictures done. They turned out amazing! I'll leave you all with a sample :)
Wednesday, February 5, 2014
One month post-op update
Hi everyone! It's time for me to catch everyone up with a long overdue update. Thanks to a couple of snow days we have had this week I've been catching up on my to-do list and this was right up there at the top.
We are officially a month (plus almost a week) post-op from Landon's second colostomy surgery and everything is going really well. He finished the 10-day course of Cipro, and since then it has been smooth sailing. This is the first time in his 19 months that he has been able to experience a normal life free of antibiotics and irrigations. Plus it's wonderful for everyone else in our family because without the irrigations we have an additional 2-3 hours of time in our day. It's an extra hour to sleep in every morning (getting up at 4:45 was no good.. I am NOT a morning person) and an extra hour at night to catch up on chores or enjoy quiet time with the boys all put to bed.
The colostomy care is still a night and day difference from last time- in a good way. I'm still able to get 4 days out of each bag before we have to do a change. During the week I only let it go 3 days to reduce the risk of having a leak while I'm at work, so we only go through 2 bags in a full week. The only issue we have had so far is gas. Sometimes his bag will fill with gas every hour or two and I have to open the pouch and let the air out. I'm sure this is related to diet and could be better managed with some dietary changes if I monitored it closely enough, but I hate to place dietary restrictions on him again when for once in his life he can eat anything he wants...
Which brings me to the next piece of good news. He has turned into such a good eater since his surgery. If anyone is considering making their own baby food, I highly recommend it! It may be a coincidence, but Landon is such a good veggie eater compared to his brothers. They would only eat baby food veggies and still barely touch vegetables without bribery of some sort. I decided to make Landon's baby food to give us more options since he used to have so many dietary limitations and organic baby food is so limited in choices anyway there was next to nothing available for him to eat. Everything that he ate pureed he also accepts in its original form- peas, green beans, carrots, spinach, etc. He has been eating so well I've cut his Pediasure intake down from 3 bottles per day to 1.5. I mix it 50/50 with coconut milk. He goes on the 17th for a well check with his pediatrician and if his weight looks good we will try transitioning to 100% coconut milk. He still takes Klaire labs therbiotic complete, 2 capsules of S. Boulardaii, 3 drops of grapefruit seed extract, and a multi-vitamin with iron daily.
As some may know, Landon's surgeon, Dr. Levitt, is moving to Nationwide Children's Hospital in Columbus, Ohio in April. It's only an hour and a half further away than Cincinnati, but at 6.5 hours each way I don't see it being feasible to do one day round trips for clinic appointments and so this will be a bit of a challenge. We have the option of staying at Cincinnati Children's and going with another surgeon, and they all have a wealth of experience compared to anyone available locally (and by locally I mean St. Louis 2 hours away), but it would be hard to make it this far and then compromise after everything we have been through to get Landon to the best colorectal surgeon in the world. We are most likely only looking at one more surgery to resect another segment of his colon, and after already having 8 surgeries it makes no sense not to follow Dr. Levitt and have him do number 9.
Dr. Levitt said that we could do the second pull-thru at least 3 months after his colostomy surgery up until as late as we choose to wait. He recommended that we potty train Landon to urinate in the toilet before going in and doing the surgery, so I have started on that. I have just been putting him on the potty during diaper changes when we're home and he has already peed in the potty 3 times! I plan to wait until this summer around his second birthday when I'm home all day with him to really start hitting potty training hard. His brothers potty trained at 26 and 25 months, and so fingers crossed he will be in big boy undies when I go back to work next fall. Even though life can be very unpredictable (as we have learned the hard way numerous times!) if everything stays semi-on-track I'm looking at June of 2015 for his next surgery. That way we could avoid sending him to school with a colostomy if he starts pre-k after his third birthday.
Everything is going so well I'm in no hurry to rock the boat again, but I'm also unsure of what it would be like for him to need extra care while he was in school and how his peers would react to him being different. We have already dealt with disgusted looks from adults when I change him in public, but fortunately this has not affected him in any way. It would be a different story if he goes to school and other children are negative about it because pre-k will be his first social experience with kids his age. I don't want him to be remembered in high school as the kid that had the "poop bag" when he was young. At the same time, we finally have a working system with the colostomy diverting away from the hypertrophic segment and it is expected that removing the additional section and reconnecting will be successful. The colostomy is free-flowing, though, meaning that Landon has no control on his output- when it reaches the site it is expelled from his body. Once we reconnect to his rectum we may have to deal with his anal sphincter acting up again- he might need more Botox treatments, we might run into him voluntarily withholding or the biggest fear of them all- incontinence. With half of his colon gone once it's all said and done, obtaining bowel control won't be easy for him. The colon absorbs water (and some nutrients) from stool as it passes through, so the less you have= less water that gets absorbed= less formed your stool is. Less colon also means less tract for it to pass through which equals less warning that it is coming. If you have a total colectomy, or the entire colon removed, your stool would be the consistency of water- pure liquid. With half gone, about the best we can hope for is about a pudding consistency and we are really going to have to push the fiber to get that because right now his ostomy output is very loose. I try not to worry though, he has already shown so much strength and resilience there is no doubt that he will conquer whatever comes his way.
We are officially a month (plus almost a week) post-op from Landon's second colostomy surgery and everything is going really well. He finished the 10-day course of Cipro, and since then it has been smooth sailing. This is the first time in his 19 months that he has been able to experience a normal life free of antibiotics and irrigations. Plus it's wonderful for everyone else in our family because without the irrigations we have an additional 2-3 hours of time in our day. It's an extra hour to sleep in every morning (getting up at 4:45 was no good.. I am NOT a morning person) and an extra hour at night to catch up on chores or enjoy quiet time with the boys all put to bed.
The colostomy care is still a night and day difference from last time- in a good way. I'm still able to get 4 days out of each bag before we have to do a change. During the week I only let it go 3 days to reduce the risk of having a leak while I'm at work, so we only go through 2 bags in a full week. The only issue we have had so far is gas. Sometimes his bag will fill with gas every hour or two and I have to open the pouch and let the air out. I'm sure this is related to diet and could be better managed with some dietary changes if I monitored it closely enough, but I hate to place dietary restrictions on him again when for once in his life he can eat anything he wants...
Which brings me to the next piece of good news. He has turned into such a good eater since his surgery. If anyone is considering making their own baby food, I highly recommend it! It may be a coincidence, but Landon is such a good veggie eater compared to his brothers. They would only eat baby food veggies and still barely touch vegetables without bribery of some sort. I decided to make Landon's baby food to give us more options since he used to have so many dietary limitations and organic baby food is so limited in choices anyway there was next to nothing available for him to eat. Everything that he ate pureed he also accepts in its original form- peas, green beans, carrots, spinach, etc. He has been eating so well I've cut his Pediasure intake down from 3 bottles per day to 1.5. I mix it 50/50 with coconut milk. He goes on the 17th for a well check with his pediatrician and if his weight looks good we will try transitioning to 100% coconut milk. He still takes Klaire labs therbiotic complete, 2 capsules of S. Boulardaii, 3 drops of grapefruit seed extract, and a multi-vitamin with iron daily.
As some may know, Landon's surgeon, Dr. Levitt, is moving to Nationwide Children's Hospital in Columbus, Ohio in April. It's only an hour and a half further away than Cincinnati, but at 6.5 hours each way I don't see it being feasible to do one day round trips for clinic appointments and so this will be a bit of a challenge. We have the option of staying at Cincinnati Children's and going with another surgeon, and they all have a wealth of experience compared to anyone available locally (and by locally I mean St. Louis 2 hours away), but it would be hard to make it this far and then compromise after everything we have been through to get Landon to the best colorectal surgeon in the world. We are most likely only looking at one more surgery to resect another segment of his colon, and after already having 8 surgeries it makes no sense not to follow Dr. Levitt and have him do number 9.
Dr. Levitt said that we could do the second pull-thru at least 3 months after his colostomy surgery up until as late as we choose to wait. He recommended that we potty train Landon to urinate in the toilet before going in and doing the surgery, so I have started on that. I have just been putting him on the potty during diaper changes when we're home and he has already peed in the potty 3 times! I plan to wait until this summer around his second birthday when I'm home all day with him to really start hitting potty training hard. His brothers potty trained at 26 and 25 months, and so fingers crossed he will be in big boy undies when I go back to work next fall. Even though life can be very unpredictable (as we have learned the hard way numerous times!) if everything stays semi-on-track I'm looking at June of 2015 for his next surgery. That way we could avoid sending him to school with a colostomy if he starts pre-k after his third birthday.
Everything is going so well I'm in no hurry to rock the boat again, but I'm also unsure of what it would be like for him to need extra care while he was in school and how his peers would react to him being different. We have already dealt with disgusted looks from adults when I change him in public, but fortunately this has not affected him in any way. It would be a different story if he goes to school and other children are negative about it because pre-k will be his first social experience with kids his age. I don't want him to be remembered in high school as the kid that had the "poop bag" when he was young. At the same time, we finally have a working system with the colostomy diverting away from the hypertrophic segment and it is expected that removing the additional section and reconnecting will be successful. The colostomy is free-flowing, though, meaning that Landon has no control on his output- when it reaches the site it is expelled from his body. Once we reconnect to his rectum we may have to deal with his anal sphincter acting up again- he might need more Botox treatments, we might run into him voluntarily withholding or the biggest fear of them all- incontinence. With half of his colon gone once it's all said and done, obtaining bowel control won't be easy for him. The colon absorbs water (and some nutrients) from stool as it passes through, so the less you have= less water that gets absorbed= less formed your stool is. Less colon also means less tract for it to pass through which equals less warning that it is coming. If you have a total colectomy, or the entire colon removed, your stool would be the consistency of water- pure liquid. With half gone, about the best we can hope for is about a pudding consistency and we are really going to have to push the fiber to get that because right now his ostomy output is very loose. I try not to worry though, he has already shown so much strength and resilience there is no doubt that he will conquer whatever comes his way.
Monday, January 6, 2014
Life would be boring if things went as expected..
In case you can't tell from the title, things once again did not go as planned- some good, some bad. We just made it home tonight (actually, for the second time) after conquering the 5 hour drive in the aftermath of a snowstorm and negative degree wind chill. Here is what went down:
On Sunday (the 29th) we arrived back up at Cincinnati. We checked in at same day surgery on Monday morning for Landon's ileostomy surgery. Once we started getting checked in, we realized that it was down on the schedule for an ileostomy OR a colostomy. This was the first I had heard of the possibility of doing another colostomy and I did not agree with that plan and so I requested to speak with Dr. Levitt. If you are wondering why I did not want to do a colostomy again, refer back to July 2012-December 2012. It involved recurrent enterocolitis and having to irrigate through the ostomy. Dr. Levitt was very understanding, but explained that if we could get away with doing a colostomy it would save Landon a surgery because it could prove that the section of colon used was functional, and then when we go to do another reversal/pull-thru he would pull thru the site of the colostomy and remove the rest of the colon. He showed us three possible sites of the colostomy, two in the left colon and one in the right colon. He wouldn't know for sure where it would be placed until he got inside and did an exam and another full-thickness biopsy.
Before Landon went back to surgery, I asked about something that has been on my mind. Something very controversial in the colorectal surgery world- intestinal neuronal dysplasia (IND). Hirschsprung's disease occurs when a portion of the intestines is lacking ganglion cells, IND on the other hand, is thought to represent a spectrum of neural-crest malformations rather than a distinct disorder, but diagnosis and treatment are controversial. I stumbled across it while researching complications and reasons for a "successful" pull-thru (by successful I mean that biopsy confirms aganglionic segment is removed) to not be functional or truly successful. The events over the summer (reference July 6th blog entry) reinforced my suspicions that Landon had another segment of colon that was not working. My experiences doing frequent irrigations that seemed like stool was "stuck" in a particular location and two contrast studies which showed a narrowed segment led both our St. Louis surgeon and myself to believe that another segment of colon was aganglionic. But then we received confusing biopsy results from both St. Louis and then confirmed in Cincinnati that ganglion cells WERE present. Here is a review of what we thought we were up against before the biopsy shocked us all:
Now that I've backtracked, I will get back to what went on last week and how it relates. After finding out that what seemed to be a dysfunctional segment of colon DID contain ganglion cells, I wondered if it was affected by IND. Dr. Levitt explained that he did not feel that IND was separate from HD, he feels that it is simply just "transition zone." I thought that my hopes of getting some type of diagnosis to explain why Landon is going through what he is were crushed. Soon after, Landon went back to the OR.
The surgery went well, and Dr. Levitt came out to talk to us. He explained that for nerves to be functional in the colon, they need to be 40 microns or less in size. The biopsy they took during surgery showed that Landon's were hypertrophic in another section of colon, meaning that they are too large to function properly. It's a mystery how this has been missed in the 3 biopsies that have been done in both St. Louis and Cincinnati, but we were relieved to finally have an answer. Approximately another 7 cm or so is affected, and so once it is said and done Landon will have about half of his colon left. For now, he has a colostomy in his upper left abdomen. Dr. Levitt was able to use the same scar from his previous surgeries, and so no more cosmetic damage.
Recovery was a breeze, except for an unwelcome, disturbing odor that came along with the return of Landon's bowel function. The odor was absolutely horrible, and quickly filled the entire colorectal unit every time we emptied his bag to the point where we overheard people outside the room commenting on the smell. This bought us a ticket to isolation and a stool culture with the suspicion of c.diff. Fortunately, the stool culture was negative for c.diff or any other type of growth. They discontinued the Flagyl and we were discharged on the 3rd. We made it home late that evening.
At 3 a.m. I woke up to the sound of heaving. Landon's crib was full of vomit, so I changed his bedding and cleaned him up and put him back to bed. I went back to sleep for about 30 minutes and we repeated the same routine. We did this a third time and I was out of clean bedding and so I threw everything in the washer, woke John up to take over, and I went back to bed for a few hours. When I got up it was time to do a bag change. When I removed the bag, we found something very disturbing looking. ***WARNING- This is absolutely disgusting. I'm sharing this for anyone else that is weird like me about cool medical stuff or for any HD parents whose child might be getting an ostomy and could have this happen. Side view and front view. (Trust me though, I did not find it cool at the time. I can only look at it now in hindsight without freaking out!)
If you viewed the images you have saved me the pleasure of brilliantly selecting adjectives to describe the way it looked. If you did not view the images I will put it this way- it looked dead and/or infected. That appearance combined with the vomiting was enough to get us back on the road to Cincinnati only 18 hours after arriving home. After a wonderful ER experience (no sarcasm, really.. we got straight in and the attending physician didn't waste any time- he called for a surgery fellow right away!) we were admitted back to the colorectal floor. They did an abdominal xray which showed possible ileus, but no big deal and it seemed to have already corrected itself. They repeated the stool culture, and while it was pending they put him back on Flagyl. Now we get into the fun of what happens on weekends/holidays when residents are the ones running the show. I hate to be mean, but we have had A LOT of bad experiences with residents in Cincinnati.. like say... being told Landon had c.diff TWICE when he really didn't, being literally shouted at for taking a bad photograph of Landon's first ostomy which was "misleading" (I reported that incident!), and a few other incidents with that same perpetrator as the shouting incident being catty with me about a variety of things. Anyway, on this occasion the stool culture came back negative (whew!) but the nurse came in with his next dose of Flagyl. I asked why he was still taking Flagyl since the culture was clear, but could not get an explanation. In case you have missed this in just about every entry I've written- I DON'T LIKE GIVING LANDON FLAGYL! The best explanation I could get was "it's in the orders" and "it's probably a precaution." Great. So we waited out the weekend and finally this morning came around with the return of Dr. Levitt. Come to find, Landon's first stool culture from the 1st actually did grow something. It was not c.diff, but I did not find out what. I was too distracted trying to process what was happening to ask any specific questions. They had left him on the Flagyl all weekend because of what had shown up on the first stool culture, which I guess we never would have found out had we not returned. Here's the kicker, though, Flagyl does not even cover that particular strain of bacteria. Dr. Levitt switched Landon to a new antibiotic, Cipro, and sent us home on a 10-day course.
That brings us to right now- Landon has had 2 doses of Cipro and is sleeping peacefully in his room. I'm getting ready to go to bed in my own comfortable bed with all 3 of my children under one roof and right now all is perfect and right in the world. The foul odor has already cleared from Landon's ostomy output, so it seems like the Cipro is what he needed. Here is the best part- the ostomy bag that Landon has on right now has been on for 4 days! Woohoo! We switched to a Hollister two-piece system, added an ostomy belt, and got some great tips from a very experienced ostomy nurse and this is already night and day from our last experience when we were lucky to get 24 hours out of a bag. Thanks to everyone that has kept our family in your thoughts and prayers!
On Sunday (the 29th) we arrived back up at Cincinnati. We checked in at same day surgery on Monday morning for Landon's ileostomy surgery. Once we started getting checked in, we realized that it was down on the schedule for an ileostomy OR a colostomy. This was the first I had heard of the possibility of doing another colostomy and I did not agree with that plan and so I requested to speak with Dr. Levitt. If you are wondering why I did not want to do a colostomy again, refer back to July 2012-December 2012. It involved recurrent enterocolitis and having to irrigate through the ostomy. Dr. Levitt was very understanding, but explained that if we could get away with doing a colostomy it would save Landon a surgery because it could prove that the section of colon used was functional, and then when we go to do another reversal/pull-thru he would pull thru the site of the colostomy and remove the rest of the colon. He showed us three possible sites of the colostomy, two in the left colon and one in the right colon. He wouldn't know for sure where it would be placed until he got inside and did an exam and another full-thickness biopsy.
Before Landon went back to surgery, I asked about something that has been on my mind. Something very controversial in the colorectal surgery world- intestinal neuronal dysplasia (IND). Hirschsprung's disease occurs when a portion of the intestines is lacking ganglion cells, IND on the other hand, is thought to represent a spectrum of neural-crest malformations rather than a distinct disorder, but diagnosis and treatment are controversial. I stumbled across it while researching complications and reasons for a "successful" pull-thru (by successful I mean that biopsy confirms aganglionic segment is removed) to not be functional or truly successful. The events over the summer (reference July 6th blog entry) reinforced my suspicions that Landon had another segment of colon that was not working. My experiences doing frequent irrigations that seemed like stool was "stuck" in a particular location and two contrast studies which showed a narrowed segment led both our St. Louis surgeon and myself to believe that another segment of colon was aganglionic. But then we received confusing biopsy results from both St. Louis and then confirmed in Cincinnati that ganglion cells WERE present. Here is a review of what we thought we were up against before the biopsy shocked us all:
Now that I've backtracked, I will get back to what went on last week and how it relates. After finding out that what seemed to be a dysfunctional segment of colon DID contain ganglion cells, I wondered if it was affected by IND. Dr. Levitt explained that he did not feel that IND was separate from HD, he feels that it is simply just "transition zone." I thought that my hopes of getting some type of diagnosis to explain why Landon is going through what he is were crushed. Soon after, Landon went back to the OR.
The surgery went well, and Dr. Levitt came out to talk to us. He explained that for nerves to be functional in the colon, they need to be 40 microns or less in size. The biopsy they took during surgery showed that Landon's were hypertrophic in another section of colon, meaning that they are too large to function properly. It's a mystery how this has been missed in the 3 biopsies that have been done in both St. Louis and Cincinnati, but we were relieved to finally have an answer. Approximately another 7 cm or so is affected, and so once it is said and done Landon will have about half of his colon left. For now, he has a colostomy in his upper left abdomen. Dr. Levitt was able to use the same scar from his previous surgeries, and so no more cosmetic damage.
Recovery was a breeze, except for an unwelcome, disturbing odor that came along with the return of Landon's bowel function. The odor was absolutely horrible, and quickly filled the entire colorectal unit every time we emptied his bag to the point where we overheard people outside the room commenting on the smell. This bought us a ticket to isolation and a stool culture with the suspicion of c.diff. Fortunately, the stool culture was negative for c.diff or any other type of growth. They discontinued the Flagyl and we were discharged on the 3rd. We made it home late that evening.
At 3 a.m. I woke up to the sound of heaving. Landon's crib was full of vomit, so I changed his bedding and cleaned him up and put him back to bed. I went back to sleep for about 30 minutes and we repeated the same routine. We did this a third time and I was out of clean bedding and so I threw everything in the washer, woke John up to take over, and I went back to bed for a few hours. When I got up it was time to do a bag change. When I removed the bag, we found something very disturbing looking. ***WARNING- This is absolutely disgusting. I'm sharing this for anyone else that is weird like me about cool medical stuff or for any HD parents whose child might be getting an ostomy and could have this happen. Side view and front view. (Trust me though, I did not find it cool at the time. I can only look at it now in hindsight without freaking out!)
If you viewed the images you have saved me the pleasure of brilliantly selecting adjectives to describe the way it looked. If you did not view the images I will put it this way- it looked dead and/or infected. That appearance combined with the vomiting was enough to get us back on the road to Cincinnati only 18 hours after arriving home. After a wonderful ER experience (no sarcasm, really.. we got straight in and the attending physician didn't waste any time- he called for a surgery fellow right away!) we were admitted back to the colorectal floor. They did an abdominal xray which showed possible ileus, but no big deal and it seemed to have already corrected itself. They repeated the stool culture, and while it was pending they put him back on Flagyl. Now we get into the fun of what happens on weekends/holidays when residents are the ones running the show. I hate to be mean, but we have had A LOT of bad experiences with residents in Cincinnati.. like say... being told Landon had c.diff TWICE when he really didn't, being literally shouted at for taking a bad photograph of Landon's first ostomy which was "misleading" (I reported that incident!), and a few other incidents with that same perpetrator as the shouting incident being catty with me about a variety of things. Anyway, on this occasion the stool culture came back negative (whew!) but the nurse came in with his next dose of Flagyl. I asked why he was still taking Flagyl since the culture was clear, but could not get an explanation. In case you have missed this in just about every entry I've written- I DON'T LIKE GIVING LANDON FLAGYL! The best explanation I could get was "it's in the orders" and "it's probably a precaution." Great. So we waited out the weekend and finally this morning came around with the return of Dr. Levitt. Come to find, Landon's first stool culture from the 1st actually did grow something. It was not c.diff, but I did not find out what. I was too distracted trying to process what was happening to ask any specific questions. They had left him on the Flagyl all weekend because of what had shown up on the first stool culture, which I guess we never would have found out had we not returned. Here's the kicker, though, Flagyl does not even cover that particular strain of bacteria. Dr. Levitt switched Landon to a new antibiotic, Cipro, and sent us home on a 10-day course.
That brings us to right now- Landon has had 2 doses of Cipro and is sleeping peacefully in his room. I'm getting ready to go to bed in my own comfortable bed with all 3 of my children under one roof and right now all is perfect and right in the world. The foul odor has already cleared from Landon's ostomy output, so it seems like the Cipro is what he needed. Here is the best part- the ostomy bag that Landon has on right now has been on for 4 days! Woohoo! We switched to a Hollister two-piece system, added an ostomy belt, and got some great tips from a very experienced ostomy nurse and this is already night and day from our last experience when we were lucky to get 24 hours out of a bag. Thanks to everyone that has kept our family in your thoughts and prayers!
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