We're Back!

Hello everyone! I have done a pathetic job of updating on here, and I apologize for that. Even if things are uneventful with Landon (Thank God!), I still need to make it a priority to get on here and share information I've learned, humor, encouragement.. or at least something! According to Blogger, we have had over 5000 page views. That is not something I take lightly! From this point on, I am making it a priority to stay involved in the Hirschsprung's community. There were so many people that have been mentors to us through this journey- experienced parents with kids that beat this disease- that stick around to help others. I want to make sure that I'm doing that, especially since we had such a unique experience on our roller-coaster with this disease.

I left everyone hanging after my last update when we were getting ready to leave the hospital. In typical Landon fashion, that was not the end of our complicated ordeal. He landed back in the hospital 2 more times due to that stinkin' abscess. IV Vancomycin was our friend, but as soon as we left the hospital and Landon and Vanc parted ways, symptoms of the abscess gradually returned during the following week (twice!). By hospitalization #3, Dr. Helmrath decided that Landon was going to need extensive treatment. He kept Landon inpatient for 3 weeks on IV Vancomycin, and then discharged him home on a 6 week course of a high dose of Clindamycin. We were incredibly nervous after Landon took his last dose of Clindamycin.. there are few things more terrifying than your child battling a life threatening issue and having to wait to see if the treatment finally worked this time. I'm happy to report that the abdominal abscess was finally done rearing its ugly head!

But wait, it gets even better! Enterocolitis? What's that?! Could it be that it has been 18 months now since Landon has had enterocolitis?? If you would go back to this time of year, two years ago, and try to tell me that Landon would go 18 months without enterocolitis, I would have thought you were crazy! And then I would probably cry. We are over 7 months post-op on pull-thru #2, and our inkling that the pull-thru itself was successful seems to be true. It has been long enough that the Botox injections are probably worn off, so it is unlikely that we will need to go back and repeat them. If we can make it another 5 months without enterocolitis to the one year post-op point, Landon has an EXCELLENT prognosis.

We have every reason to believe that Landon will make it one year post-op without further complications, because his bowel function is good. A little too good, though..

With most of his colon removed, Dr. Helmrath said that he would be thrilled if long term, Landon has less than 6 bowel movements a day. With that in mind, I honestly do feel that we are experiencing best case scenario. We usually stay under 5 a day, but we are SUPER careful with his diet. No cows milk, no sugar (except for special treats), ABSOLUTELY NO HIGH FRUCTOSE CORN SYRUP! To avoid bowel obstructions, we also say no to fruits with skins and popcorn, because those two things do not digest properly in Landon and pose a serious risk. We still don't have this diet thing figured out though. We have weeks at a time that we are spot on with Landon's diet and he has explosive, watery diarrhea for days straight. We also have times that we are not so good with his diet- our recent vacation to Florida, for example- where Landon, along with the other kids, eat like complete garbage. I braced myself for the worst with every Nutrigrain bar, Poptart, and ice cream treat, but Landon had flawless bowel function. Things like this leave us very confused.

For this reason, even though Landon is turning 3 next week, he really isn't potty trainable yet. This is different for us after parenting our other children. As soon as Carson and Austin showed signs of readiness, we were on it. Carson was completely potty trained at 26 months, Austin at 25 months. When our first foster daughter came to live with us at 2.5 years old, we had her potty trained within 3 months of living with us. I've taken a few trial runs at potty training Landon, and they have been epic failures. On his good days, he is absolutely capable and we could do this without a problem. On his not so good days, it just isn't possible. He doesn't have control of his bowels at all on his bad days. He can blow through a diaper or pull-up and not even realize it's happened until his bottom starts feeling uncomfortable or he notices stool on his leg.

At 3 years old, this isn't an emergency yet. We are still pretty fresh out of his last surgery and his body is still adapting to most of an organ being gone. It's normal for kids with HD to be 4 or 5 before they are potty trained. Unfortunately, it's also not uncommon for kids to be 6, 7, 8... and still have a struggle. There is a terrific week-long bowel management program at Cincinnati Children's with greater than a 90% success rate. The downside, is that their success rate is not through some magical potion or spell. They obtain continence by using either enemas or laxatives. John and I still have discussions on whether or not we are ready to contact Landon's nurse and get him into the program. Right now, our thoughts are to take some more time to try to figure this out on our own. I don't like the idea of committing to laxatives for the rest of Landon's life, and I'm not sure I could bear giving him enemas daily. We had to do enemas for a few days when we learned the hard way that Landon cannot have popcorn, and it was a miserable experience for everyone involved. He screamed in pain, and cried, and begged us "no!" So for now, we will sustain the judgment from others that we must be too lazy to potty train our son when strangers see the pull-up peeking out over the top of his pants. And Landon will be excluded from private preschools, many daycares, vacation Bible schools, and many other opportunities because he is "age appropriate" but "unable," despite this being a clear violation of disability protection laws... *sigh* Thankfully we have my parents to help when we are at work and an awesome public school pre-k program that Landon has a spot in starting in August :)

Developmentally, Landon is blowing us away. Less than a month ago, I had a back and forth conversation with him.. and then cried happy tears! He is speaking in sentences of 4-5 words, sometimes even more, and asking questions, commenting, answering questions.. you name it! He is getting the hang of some of his ABCs and counting to 7. He has taken an interest in drawing/trying to write, and is confirming our suspicions that he is left handed! He feeds himself with utensils very well now, with minimal mess, and has decided to stop using a high chair! He is still such a stinker... oh man he's a handful, but we are continuing to see blessings every day of milestones he was never expected to reach.

As far as the rest of the family goes, not a whole lot has changed. Carson and Austin are both doing well, and the Hunsaker boys are preparing to take over the primary center of our town's public school attendance center. Carson is going into first grade, Austin is starting kindergarten, and as I mentioned, Landon will be starting pre-k. All three of the boys under one roof, Lord help the teachers and staff! ;) Our time with our first and oldest foster daughter is coming to an end. After 14 months with our family, she is scheduled to move to her biological father's house on July 8th. This will be an adjustment for all of us after having her with us for so long, but we are thankful that she is going someplace that we are confident she will be safe and loved. Our younger foster daughter (10 months old now, wow!) is here as well, and that is unlikely to change any time soon. A date has recently been set for termination of her birth parents' rights, and we are expecting that to be wrapped up by this fall. We are hoping and praying that nothing changes, and that we will soon begin the adoption process. We all love her so much, and are ready to make her a Hunsaker. Apparently, she is ready to become a Hunsaker, because she has heard about Landon's health ordeals and decided to pull a few tricks of her own. We have already had one specialist following her at St. Louis Children's since October and will soon be referred to specialist #2 for some further testing. Prayers are appreciated that everything will turn out okay, and if any further issues are identified that she will overcome them like her big brother Landon has!

And now, for some recent pictures :) 

 Landon's first visit to Florida! He loved the beach just as much as he did in South Carolina :)

 He quickly became a master crabber!

 Playing a little miniature golf with the family.

 On the Daytona Beach boardwalk.

 The kiddos with daddy in front of the beautiful water at Ponce Inlet. What a hidden gem!

 All ready for his first Disney experience! He was still in mommy's belly on our family's first visit.

 With mommy in front of the castle.

 Donald Duck is the only character he would get near at Chef Mickey's!

 He loved driving the go carts! Of course at Disney World he would love the one ride that we actually have back home..haha!

 We stayed at the Cars suites at Art of Animation as his big 3rd birthday present. The reason he loves Cars so much is actually quite special and significant to his journey. At Cincinnati Children's, they have a "netflix" type thing full of children's movies to watch on demand. Landon's time there mostly consisted of laying in bed sick all day, and after sampling several of the movies he fell in love with Cars. We literally watched Cars 5 or 6 times a day almost every day he was in the hospital.. and he became OBSESSED. This was nothing short of a dream come true for him!

We love Mater!

Everything looked so real and such attention to detail was placed to make it on target with Radiator Springs in the movie. We had it in the back of our minds that we would go back to Disney once Landon was old enough to enjoy it (and the older boys old enough to enjoy more of it), but Landon's acquired love for the Cars movie persuaded us to do it now. It was every bit as special as we had hoped it would be :)

*And on a side note, we were very happy with Disney's disability access program. Once we arrived at Magic Kingdom, we went to the Guest Services desk and explained Landon's condition and the implications. They issued him a Disability Access Card which allowed us to go to a ride and obtain a return time to board the ride, rather than standing in 15-60 minute lines. This eliminated the worries of waiting in a loooooong line, only for Landon's intestines to get angry when we reach the front and having to lose our spot in line for a bathroom trip. I'm mentioning this because I had heard a lot of criticism of Disney's recent changes in disability access policies. If you are expecting to receive some type of advantage over other park visitors and to walk right up and skip every line, you will be disappointed, because this is not it. This only allows you to obtain a return time for one ride at a time and the return time is based on the current wait time for the ride. So theoretically it is the same as standing in a line, just without having to be physically present in the line. To us, we found that this system allowed Landon enjoy his Disney experience as much as he would have been able to had he not been born with Hirschsprung's disease. We are already discussing our next trip, hopefully once Baby Girl is old enough to enjoy the experience more, and hope that they maintain their policy so that the next trip will be just as enjoyable and stress-free!

Pull-throughs, partially collapsed lungs, and abscesses, OH MY!

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.

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.

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!

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!

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 :)

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.

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!

Taking a step back

"Optimist: Someone who figures that taking a step backward after taking a step forward is not a disaster, it's a cha-cha.” -Robert Brault

Thank you to everyone that has been asking about Landon. Unfortunately, the reason I haven't been updating on him online the last few days wasn't because things got better, it was because we were plotting our next move.

The random vomiting spells are only getting worse. It has happened every day since Tuesday- 4 consecutive days now. Landon's GI system is so out of whack there's no point in even trying the botox. We are over a year post pull-thru and it seems that things are getting worse instead of better. Some may remember this past summer when we were entertaining the thought of going back to an ostomy. I felt pretty strongly about doing it to get him off the Flagyl (which he has had to take over a year total now) and to improve the quality of life for Landon and the rest of the family. Landon should not have to deal with 3+ hours of irrigations a day, and it takes away time from our other kids. He shouldn't have to deal with projectile vomitting all the time, the belly aches, not ever wanting to eat and pretty much being force fed. But despite all that, having an ostomy stinks for him because it makes him "different." So we tried the Botox, and it helped. Just not enough. Landon spent his first Christmas eve and first birthday in the hospital.. but he is not spending his 2nd or his 3rd. After the way the last 3 months have played out, I have complete confidence now that going back to an ostomy is the right thing to do.

So the 30th we will head back up to Cincinnati, but instead of doing the botox, Dr. Levitt will be giving Landon an ileostomy. We will then have to stay in the hospital for a week and possibly a few additional days. This time we know what to expect post-op. We already know how to do bag changes, and even though they are no fun for us, Landon had a much better quality of life with an ostomy. I'm looking around for the coolest pediatric ostomy belts that I can find to conceal it. I learned from our last go round that many, if not most people are very freaked out by the appearance of it. After all, it is live human intestine hanging out of the abdomen, and even I had a hard time looking at it and touching it at first. But Landon is completely aware of what goes on around him now and I don't want him to experience any dirty looks or unnecessary rude questions. He will just have some sort of cool belly band he wears around his waist barely peaking out of his pants.

Since it is another temporary ostomy we know that he will have to undergo at least one additional surgery eventually. I want to emphasize the word eventually. We are leaving things alone for at least a few years. There is a good chance he will go to kindergarten with an ostomy. Personally, I'm tired of making decisions that affect his quality of life. I can't even explain how bad I feel when I think that we could have done something differently thatmay have stopped him from going through even a little bit of the adversity that he has faced. I hope that we can leave things in place until he is old enough to want to reverse the ostomy, and to understand the risks and challenges that will come along with it. Who knows, maybe within the next few years modern medicine will catch up to these complex HD kids. There is some promising research going on in Boston right now where they have found that injecting cells from the intestines of healthy mice into the intestines of mice with HD caused the aganglionic segment of the intestines of the HD mice to gain ganglion cells and function. That's terrific news, especially for the children affected with total intestinal aganglionosis. In Landon's case, that particular study may not have much use since his affected segment has already been removed and he continues to have poor function of his colon for unknown reasons.. but hey- at least they're getring somewhere!

I hope everyone has a Merry Christmas! I will update soon on how the surgery and recovery goes. As always, please keep Landon in your prayers.

The night I poured my 17-month-old a Coke...

I'm sure you can tell by the title that this is going to be an interesting post. I really don't know what else to do, though. Landon is sick- he has been having a horrific vomit fest all night. Our closest children's hospital is 2 hours away. On one hand, I don't want to let this go to the point where we miss Carson's birthday and Christmas Eve because we are in the hospital. On the other hand, it is late at night, the other boys are in bed, we would have a lot of packing to do, and the roads are icy and expected to get worse. We don't want to take Landon in unless it is completely necessary, and the key to that is to keep him hydrated while we hope and pray he responds to things we can do from home. It's safe to say at this point that his last round of Botox is completely worn off, and even the full dose of Flagyl and 2 irrigations per day isn't keeping enterocolitis away. Why does this have to be the weekend? If I call Cincinnati they will put me on the line with a resident and he or she will tell me to take Landon up there. Unlike Dr. Levitt, the resident will not be aware of how much experience we have with enterocolitis, irrigations, and managing this stupid disease while doing everything we can to keep him hydrated.

Which brings me to the title. A little background: we are a very healthy lifestyle family. We eat mostly natural, organic, and unprocessed. Carson and Austin have never tasted a caffienated soda. Maybe twice a year as a special treat we will let them order a rootbeer or Sprite when we're out to eat, but that's it. Unfortunately, though, my title is a true event. I poured Landon a Coke in a sippy cup and he drank about half a can. What else is there to do when your son is vomitting profusely and you desperately need to get clear liquids in him. And he refuses Pedialyte. And he refuses water. And he refuses apple juice. You bet he guzzled down the Coke though. Thank God he did because it was my last resort.

Please keep Landon in your prayers the next couple weeks. He has another round of Botox scheduled for the 30th and so we need him to hang on through the holidays without landing in the hospital AGAIN. This poor child spent the better part of his first 3 months of life in the hospital, and his 1st birthday, and as most probanly remember we had to rush him to the hospital on Carson's 4th birthday last year and missed Christmas Eve and drove all night just so we could be back for the boys to get their gifts from Santa Christmas morning. I want nothing more than not to have a repeat of last year, so please keep him in your prayers!

Update

Everything is going pretty well with round 2 of Botox so far. It has been nearly 2 months and it seems to still be working. About a week ago there were some irregularities that made me think that it had worn off (enough that I started the process of scheduling round 3 for the end of next month) but everything seems to be working pretty well again. We haven't been successful in getting Landon off Flagyl this time around. We are getting ready to wean him off and try again starting next week.

Landon still takes 15 mg of Senna (one Exlax square) along with Klaire Labs Therbiotic Complete probiotic (adult dose), one capsule of S. Boulardii, a gentle iron supplement, multivitamin, and extra fiber with built in probiotic support. We no longer see the natural medicine specialist due to the cost and very little observable difference now that things are working more smoothly with the Botox injections.

We are still very careful about what Landon eats. Constipation doesn't seem to be an issue, more of the opposite. Laxative foods tend to run right through him and so we are now limiting most of the foods that Landon originally was living off of. He drinks 2-3 Pediasures a day for nutritional support and extra calories, which for right now is all he drinks aside from an occasional sip of water. Fruits and vegetables are the most difficult foods to get in because they often pass undigested and cause mild obstructions- which thankfully at this point we have been able to dislodge during rectal irrigations. Landon can eat peaches, apple, carrots, and sweet potato.. as of right now that's it. It's unfortunate because he is a very good veggie eater, but we have had some close calls with everything else. We have been lucky that Landon does fine with small to moderate amounts of cheese (which I love and add to most dishes that I make in some form!) He eats everything I serve for dinner which includes chili without beans, various pasta dishes made with pasta with extra fiber, meatloaf, chicken breasts, and sloppy joes on whole wheat buns. Other foods that he does well with are scrambled eggs, Applegate chicken sausage, plain Almond yogurt, peach-applesauce, thin-sliced deli turkey, and any kind of chicken- but especially nuggets and tenders. We go on Monday for a check-up with his pediatrician to confirm this, but Landon appears to be growing and gaining weight very well. At 16 months old he is outgrowing 18 month clothing.

We are doing one rectal irrigation per day. We do this before bed every night. Landon tolerates this very well and isn't at all bothered by it, despite how terribly invasive it is. My first goal is to get him off daily antibiotics for good before we worry about discontinuing the irrigations. If he doesn't come off of the Flagyl this time, I want to discuss either trying a super low maintanence dose or possibly giving Rifaximin another shot. We are approaching the one year anniversary of Landon's pull-thru surgery and so things should be regulating as much as they will within the next few months. Thoughts and prayers are always appreciated!

I'll leave you today with a picture of Landon at the park yesterday with his brothers. He loved this ride and although I was afraid he was going to get a brain injury and/or broken bones, his brothers couldn't make it go fast enough for him!

Round 2

After 4 weeks of absolute perfection with Landon's health, the botox wore off. Before there was even a noticeable change in his bowel function he already had a low grade case of enterocolitis. They had hoped that we would get at least 3 months out of the last round, but Dr. Levitt said they could go in for another round after 2 months. So basically for the past month Landon has lived off of Flagyl, frequent irrigations, and Pediasure since his appetite is nonexistent when things aren't moving along very well.

Today we were finally able to repeat the botox injections. Landon did great and we were in and out of the hospital in under 3 hours. Dr. Levitt recommended that we start putting him on a potty chair to encourage him to push more on his own, but other than that didn't have any suggestions other than repeating the botox treatments and treating enterocolitis as needed. I asked about the possibility of doing a myectomy- a surgery to permanently remove some muscle in the sphincter to create the same effect as the botox permanently. He said that he doesn't like doing those surgeries due to the risk of incontinence later on. For now I'm fine with trying a few more rounds of botox to buy us some time, but if things don't improve and Landon continues to experience recurring bouts of enterocolitis we will definitely weigh the pros and cons and reconsider.

Now we wait and hope for similar results from this round of botox as we experienced with the last. Other than our continued Hirschsprung's related struggles, things are going really well with Landon. Big news- he is officially walking! He took off walking 2 weeks ago and has made great progress becoming more stable ever since. He is also saying and repeating more words every day. This weekend we came up to Cincinnati early to visit the zoo and children's museum with the boys, and during that time Landon was around a lot of children his age. I noticed two wonderful things- compared to his peers, Landon is 1) big! and 2) equal. He talks, walks, and climbs as well as other children his age that we saw. No one would ever guess there is anything out of the ordinary going on with him other than the slight clue that I'm holding him down pretty much force-feeding bottles of Pediasure just to get calories and hydration in him.

I'll update with results of the botox soon. I hope everyone is enjoying the start of fall. The weather is absolutely beautiful here right now!

FINALLY!

After being on this roller coaster much longer than I would have liked, I think we have finally turned a corner. Many times we have seen a slight improvement here or there for a few days or even weeks at a time, but never before have we seen such drastic, steady progress.

So I guess I have some back-tracking to do to catch everyone up..

On Monday, the 15th, Landon had his Botox injections. We were told that it would start to work over the next few days, and that in a week if we had not seen any changes then it was not successful. After 2 or 3 days we saw very subtle differences. Landon was passing what appeared to be normal looking stool (which was a first, his stool has always been completely liquid and very undigested looking.) We could tell during the irrigations that the Botox had loosened things up like it was supposed to, but despite the improvements, Landon's bowels were not functioning any better. We still had to do 2 very long irrigations of 3000-4000 mL of sodium chloride and it still took 45 minutes to an hour to get him cleaned out. After waiting the full week, I emailed Dr. Levitt and let him know that we could see changes, but nowhere near to the extent that we had hoped. He forwarded my email to GI and they decided as a team to try something new. They recommended we start a low dose of a stimulate laxative called Senna once a day.

For those that know me, they know how crazy this makes me. I'm a very natural parent. Since having the boys, I stopped using household cleaners containing chemicals, starting buying all organic, steroid, hormone free foods, and the boys use special chemical-free bath products. Carson or Austin neither one take medications on a regular basis, and when they do become sick we don't "over medicate", we only use Ibuprofen if a fever is very high. So you can imagine what a change this has been having a child with a chronic medical condition requiring some form of medication his entire life. Medication has just became something I've had to learn to deal with. I do my best to avoid what I believe to be the more potentially harmful medications in favor of safer alternatives, but at the end of the day there is only so much I can do.

I had to push my worries aside and just deal with the Flagyl, as much as I didn't want to, because without it Landon ended up so sick on his birthday. Laxatives were another area I wasn't thrilled to get into, because it's great if they work, but then you are likely looking at long term use. I researched Senna, and found it to be safe enough that I had no objections. It is something available over the counter, and to my surprise (and delight!) it costs less than $5 for a 12 day supply. We are used to every trip to the pharmacy costing anywhere from $40-$200, so $5 is such a great surprise!

The particular form of Senna that we chose is Exlax chocolate squares. Landon takes one square (15 mg) at bedtime following his irrigation. After starting this, it was like a miracle. I could mistake Landon for one of our other boys when they were this age! His freqency decreased from 10-12 tiny BMs per day to 4-5 large ones. We have used the Senna for almost 2 weeks now and this is continuimg to improve. Yesterday, Landon only had 3 large bowel movements. He stayed clean throughout the morning and afternoon (which also helps his diaper rash issue) and then had his bowel movemnts over the course of the late afternoon and evening.

Since the Botox, we have been tapering off the irrigations and Flagyl. We dropped the morning irrigation and only do one at night, which takes less than 800 mL of solution because Landon is already nearly empty! We are down from 4 doses of Flagyl per day to only one, and next week we are attempting to go off of it altogether. This is the first time in a long time that I have been optimistic that this could work. Even if it doesn't,  we can at least go back to a small maintenance dose which is an improvement from where we've been.

Landon's development is also coming along. He is still struggling with the balance and strength to walk, but has made several other major acheivements. He is eating 100% table food, with only a few dietary restrictions. We introduced some dairy and small amounts of whole wheat, so he is no longer completely dairy or gluten free. We are still avoiding constipating foods, but letting Landon at least try everything he can and then trying to add more laxative foods to balance it out.

Another great accomplishment Landon has made is drinking from a sippy cup. He still takes a few bottles a day to stay hydrated, but he is taking in about half of what he needs through a cup. I'll end this post with a cute picture of what else he has figured out he can do with a sippy cup ;)

Curve Ball

Well, everything has pretty much taken a 180 degree turn since my last update. I received an expected phone call with very unexpected news last Monday. The biopsies of Landon's colon DID contain ganglion cells. Dr. Bernabe said that she wasn't comfortable removing what appears to be good colon that for whatever reason isn't working. She said that she could offer us Botox injections, but wasn't sure if that would help.

I contacted our nurse at Cincinnati to let her know what was going on and Dr. Levitt emailed me back. He said that he wanted to do a rectal exam under anesthesia with a sigmoidoscopy and possible upper GI endoscopy. We began the process of getting preauthorization from our insurance company and were prepared to wait until at least the end of the month before an opening would be available.

Next came another surprise when the nurse called on Thursday and said that they had an opening on Monday (today.) Then, an hour later called back and asked that we go up the next day for some testing beforehand. Fortunately, my stepdad was able to make the trip with all 3 of the boys and I. We made a round-trip in one day, and so way too much driving with way too many small children. It ending up being worth it to shed some light on the situation.

On Friday, we went down to radiology and had a variation of the contrast study done. They inserted the solution differently and took views from additional angles. Dr. Levitt felt that the narrowing that appeared was inflamation from enterocolitis, not colon that wasn't functioning. To be honest, I'm so exhausted, frustrated, emotional- you name it- that I pushed for doing an ileostomy and getting Landon healthy and his bowels healed. Dr. Levitt respected my wishes, but managed to talk me out of it. He convinced me that trying botox first could be the way to go to see if relaxing Landon's sphincter helps move things along. He left open the possibility that the ileostomy might still happen depending on what condition his colon was in once they took a look inside.

Last night, John, Landon, and I came back up prepared to stay up to a week with the possibility of being able to do everything outpatient and coming back home today. I'm happy to say that everything turned out best case scenario- upper GI endoscopy, sigmoidoscopy, and rectal exam all three were perfect. Dr. Levitt gave Landon 4 botox injections and we were happy to be out the door in under 4 hours. Now we wait a few days to see if the Botox works. If it does, then we will repeat it about every 3 months as long as necessary. If it doesn't work, then we will go back to our discussion on the ileostomy. We are also awaiting results of a some biopsies taken of the small intestine which are expected to be normal. I'll update when I get a chance on how everything goes.

Who, What, When, Where...

Hi everyone. I have a lot of updates. Let me start off with the good news:

Landon is officially a year old now! We celebrated his birthday on Saturday and he was able to enjoy his first cupcake during a Superman themed birthday party.

 

 



What a year it has been! Even though there are still gross motor and feeding issues that are being addressed, he is doing so well for what he has been through. He is getting stronger every day and is doing better at standing on his own and taking steps with a push-toy. The most amazing area of all, no doubt about it, is his communication. His receptive vocabulary is HUGE. This child understands everything. Any time we have a conversation about anything, he is looking around the room at what it is we are referencing. He is also starting to consistently use several words. He calls me "mama", says "hey!" to tell people "hi", and labels his favorite thing of all time- "fish" by saying "fffffsshhhh." What a blessing he has been to watch him grow and learn.

Now for the not-so-good news. Thank God we celebrated his birthday on Saturday, because on his actual birthday on Sunday he became very sick very quickly. He was projective vomitting and became lethargic. We rushed him to the emergency room at St. Louis Children's and they conducted testing and diagnosed him with enterocolitis. He was still taking the full dose of Rifaximin, but it turns out that it was no longer working so well. They started him on IV Flagyl and we noticed improvement after several days.

We were reunited with his surgeon at St. Louis, Dr. Bernabe. It made me realize that there are advantages to being in St. Louis vs. Cincinnati: 1) much shorter drive, 2) our older boys and other family can travel up to visit 3) they more thoroughly know Landon's history and take enterocolitis more seriously, 4) pretty much everyone knows us from his "episode" a year ago today, 5) we are able to visit the doctors that saved Landon's life and express our gratitude and show off how well he is doing.

Although those are all important advantages, number 3 turned out to be the most important. Dr. Bernabe decided to do further testing to see why Landon is continuing to have such a poor outcome following his pull-thru in December. The first test was a lower GI study that was done on Wednesday. It didn't take the radiologist long to see that something was abnormal. Landon had a narrowing in the rectosigmoid region and into the descending and transverse colon, consistent with Hirschsprung's disease before ANY surgery is performed. Dr. Bernabe then came in and explained that although it is rare, sometimes following the pull-thru surgery an area of the colon doesn't receive sufficient blood flow and can actually become aganglionic. We have biopsies from both St. Louis and Cincinnati to confirm that good colon with ganglion cells was pulled through back in December, and so there are no questions about there possibly being a surgical error. So we proceeded with a biopsy, which was done yesterday morning. Dr. Bernabe went in and performed a full-thickenss biopsy under general anesthesia to confirm that a section of Landon's colon is aganglionic again. Landon did very well during the procedure and we were able to come home last night.

So what does this mean for Landon? I've created a diagram to better illustrate what I'm about to explain in hopes that maybe it will be a little less confusing.

 

Here is a colon/large intestine. The area circled in blue has already been removed (15 cm), with the area directly above pulled through and reconnected with Landon's rectum. So the area circled in green is actually stretched and is placed where the area in blue used to be. Fast forward to Wednesday, when we saw the results of the lower GI study. The area in green (another 7 cm) is now narrowed and is not allowing stool to pass. Once removed, Landon's entire descending colon and part of his transverese colon will be gone. This is no longer consistent with short-segment Hirschsprung's disease, resection to this extent occurs with long-segment disease.

 

Those are the facts. Now we get into the opinion of the surgeon. Dr. Bernabe feels that since the ascending colon receives much better blood flow, we may have the greatest chance at a successful surgery if she removes Landon's entire transverse colon and connects his ascending colon. That would leave approximately 25% of his colon in place. That part sounds okay. The downside is that she uses the Soave method. Everyone should do their research on the Duhamel, Soave, and Swenson methods and form their own educated opinion. My opinion is that the Soave method is inferior to the Swenson method and yields a higher complication rate of enterocolitis and re-do operations due to what is known as the "Soave cuff."

 



For that reason, I can't say that I'm comfortable doing the pull-thru in St. Louis. I do feel that St. Louis is better managing Landon's care and is being more thorough, so I asked about the possibility of just going up to Cincinnati for the re-do pull-thru (Swenson method) and then coming back for Dr. Bernabe to manage his care. Dr. Bernabe stated that she would be comfortable with that, and so that is one option on the table.

Another option would be to return to another temporary colostomy. This would be a good option to keep Landon healthy for a while and off of antibiotics, and we would definitely do this in St. Louis. The disadvantages are that the colostomy was not easy to care for, and this would guarantee at least one more additional surgery to reverse it at a later date.

There are a few other options that we are not ready to consider (permanent colostomy, pull-thru with loop ileostomy). So basically what it comes down to is a decision to go back to a colostomy for a while to get Landon healthy and stay out of the hospital for long periods of time, or to go straight to a re-do pull-thru and keep trying to make this work. Both options have advantages and disadvantages that we are weighing. Right now we are deciding what to do, who is going to do it, where it is going to be done, and when it will be done.