Hello again! Since I last updated everything has pretty much been the same. I guess it's good that I don't have a bunch of updates, the past month has been pretty uneventful. Landon is off antibiotics now, and so far so good. Dr. Levitt in Cincinnati has reviewed Landon's records and developed his plan of care. No surprises there, he will have a colostomy reversal/pull-thru procedure sometime within the next few months. They should be contacting me any day now to schedule the surgery. If we can't schedule over Christmas break we might have to wait until March for Spring break. I'm really trying to avoid taking FMLA at work, and with this only being my second year at my job I don't have much sick time to work with.
More good news, I've won several battles with our insurance company. I appealed Cincinnati being billed as out-of-network, stating my case that mistakes made in St. Louis due to lack of experience would be more costly than a trip to the leading colorectal specialist in the country. I'm still working on the whole colostomy supplies issue, though. Whoever decided that these bags should last 3 days clearly never had a child with a colostomy. Even when I tape and paste around the edges for extra reinforcement, they always spring a leak within 24 hours. Not fun!
Last time I updated I mentioned that Landon had started laughing without sound- well 2 days later I was getting ready for work and Carson and Austin were playing with Landon in his bouncer. I heard a laugh- one that was clearly not Carson or Austin's. I looked in there and Carson and Austin had Landon laughing out loud! At the time he was still barely 2 1/2 months old! I even managed to record it on a video on my phone, until Landon spotted my phone and immediately gave it a hard stare and forgot what was so funny. Landon has also continued to become stronger and stronger. He has awesome head control, and when he sits in his Bumbo seat he can easily turn his head back and forth to look around the room.
So overall, everything is going very well. Last weekend we even managed to go on a weekend trip to Nashville, Tennesee- colostomy and irrigation supplies in tow. While we were there, we purchased a new vehicle unexpectedly. We were pretty crowded in our Toyota Highlander with 3 car seats squeezed in the middle row, and I just wasn't comfortable putting any of the boys in the 3rd row in case we were ever rear-ended. We managed to find a great deal on a Chevy Suburban that is only a year old. It is huge, and has plenty of room for the boys. I feel much safer driving it, with all the worrying I have done lately it's really nice having one less thing to worry about.
Well, that's it for now. Hopefully everything stays uneventful and I can just check in every now and then and talk about how well everything is going!
Since we have been back from Cincinnati we have had the longest stretch of uneventful time so far, and it is great! Landon is down to just 2 doses of Flagyl a day (down from 4!) and he is staying healthy. This Thursday we are removing another dose and we will be down to just one a day. We are doing irrigations twice a day, and increase the frequency up to 4 times a day if he seems to be getting sick. One day mid last week Landon vomitted once right before we left the house in the morning, and so my mom and stepdad brought him to me at work during my lunch and I did an extra irrigation in the front seat of their truck! It cleared everything right up and Landon has continued to tolerate the decrease in antibiotics well. Just a side note for those who aren't from the Hirschsprung's support groups who aren't familiar with what irrigations are, it's the process of inserting a catheter through the rectum (or ostomy if the patient has a colostomy-like Landon or an illeostomy) and then feeding it up through the intestines. You then attach a syringe and slowly insert sodium chloride solution and let it drain out, taking all of the stool and bacteria out with it. Trust me, it is not a fun thing to do to your child. And I'm sure it's not especially pleasant for Landon, either.
Besides the Hirschsprung's-related issues, Landon is doing very well. He is still gaining 3-4 times the amount of weight that is expected for a typical baby his age, which is absolutely amazing for a child with a disease that is often closely related with poor weight gain/growth. He is smiling more each day, and has started making laughing faces without making any sound. He has also gained enough head control to sit in his Bumbo seat and watch his brothers play. So far at 2.5 months he is on track developmentally and I will continue to stay cautiously optimistic regarding his future development.
Pretty much everything is going well for our family. The colostomy care was difficult at first, but has gotten easier. Same with the irrigations. It is tough getting up at 5:15 in the morning just to complete all of Landon's care before I go to work, but I'm hoping that gets easier as he continues to sleep for longer stretches of time. It will also be difficult any time that he gets sick and requires extra irrigations. I work 25 minutes away from our home town and I work 8:15 to 3:30 with a 30 minute lunch- not enough time to run home in the middle of the day. I wouldn't ask my mom and stepdad to bring Landon to me during my lunch on a regular basis in their gas guzzling truck, that would be too much. All I can really think to do is take little chunks of sick time to tack on to my lunch and run home, but my sick time is already running low and I still have to plan to take off for his 2nd surgery sometime in the next few months. Not to mention the nature of my job- I'm a speech pathologist in a school and so every time I'm out my students miss their speech that day. Working is definitely tough right now, but I have to make it work. I love my job, and my older two boys love their daycare. They both have friends in their classes and love the socialization, and they learn so much. I know if I were to stay home with them I wouldn't be able to read to them or teach them like they get at daycare with everything I would have to do for Landon. Every day would be crazy rather than structured, which is what they need. Not to mention, as I said before, I love my job. I work a teacher schedule and so I still get plenty of time with my kids, in addition to working in a profession that is very rewarding to me. I would really like to fast-forward to next summer when I'm off for 3 months. By then Landon will be 1 and things will hopefully calm down even more.
We went home with an excellent prognosis and everything was going great. That was until Landon took the last dose of his antibiotics. After 4 days, his stool developed a foul odor. Next he become inconsolable, and cried constantly, and did not want to eat. He started throwing up, first plain vomit, and then bile. I was convinced the cycle was beginning again and we rushed him back up to St. Louis Children's Hospital which was 2 hours away. They started him back on antibiotics, and within a few days, everything was great again. We went home shortly after on a longer course of antibiotics.
Again, everything was going great. He even gained 2 full pounds in less than 2 weeks! Everything was picture perfect... until he took his last dose of antibiotics. Within 4 days, the cycle began again, in the same order. This time it was caught early enough for us to treat it at home and avoid the 2 hour drive each way to the hospital. Again, he improved right away. But it was mentioned that he might have to stay on the antibiotics until his next surgery....
...but wait a minute! At this point I was pretty educated on Hirschsprung's Disease. You are not supposed to get enterocolitis while you have a colostomy in place! It is supposed to be next to impossible! Something didn't sound quite right. Why was he sick constantly? And how would the next surgery (to close the colostomy and reconnect his bowels) change anything if he was already having issues during the time that he shouldn't be?
Time for a second opinion. I did my research, and found that the best and most experienced doctor on Hirschsprung's Disease is Dr. Levitt at Cincinnati Children's Hospital. Fortunately for us, that is only a 5 hour drive away, so I contacted Dr. Levitt. I summarized Landon's story, and within 2 hours he personally emailed me back. I was very impressed with his response, especially considering our very own surgeon that had done Landon's colostomy was impossible to contact. I had to speak with a receptionist who took a message for the nurse, and then the nurse looked at the message, tracked down his surgeon, and this process usually took a couple of days! Forget about speaking with his surgeon personally! And that is the surgeon that only operates on 2 cases of Hirschsprung's Disease a year. In the other corner, in Cincinnati, we have the famous Dr. Levitt- who does several of these surgeries a week- in which Landon is not even a patient of- and he emails me back within 2 hours!
He agreed that something didn't sound right and had us come on up and admitted us to the Cincinnati Colorectal Center. Even with the 5 hour drive, it was amazing to be in a place devoted entirely to children like Landon. All of the nurses and nurse's aides were all experts on Hirshsprung's Disease. They ran several tests and determined that nothing was wrong with Landon's colostomy that posed an immediate threat, but something was definitely off and he shouldn't be getting enterocolitis over and over. They also didn't think he should be on such a high dose of antibiotics, and felt that he should wean off of them rather than repeatedly attempting to quit cold turkey.
So, as you can probably imagine, we decided that from now on we will drive the extra 3 hours each way to take Landon to Cincinnati. We have higher out-of-pocket expenses since they are out of network with our insurance, but it only amounts to a few thousand which is NOTHING compared to our child's life. They still suspect that something is wrong with his colostomy, but they recommend following a strict protocol of irrigations and some antibiotics and then just going ahead and doing the pull-thru sooner rather than later, rather than revising the colostomy and then having to put Landon through an additional surgery to do the pull-thru. So for now that is the plan!
