Big Day of Appointments

Today I'm home from work with a nasty stomach bug. Fortunately my mom is still watching Landon for me and my step-dad drove Carson and Austin to daycare and so I'm able to stay in solitary confinement to avoid passing this to everyone in the house. I've been out of sick days since December and so it is another unpaid day off, but at least it gives me a chance to update on what all happened yesterday in a timely manner.

First, Landon saw his pediatrician yesterday morning for his 7 month checkup. He is up to 20.5 lbs and 28.5 inches. Not surprisingly, with all of the issues we have had since his surgery he has dropped from the 90th percentile for weight down to the 70th. The good news is that his length has only dropped to the 88th percentile, down from 90th as well, and so he is still growing well despite the setbacks.

Next, we had to address Landon's development. I knew that he was starting to fall behind as he had recently missed all of his 6 month milestones. Already knowing that didn't make it much easier to hear though. When the nurse comes in she evaluates Landon using the scale for typical babies. Preemies have an adjusted scale, as do children with certain conditions such as Down syndrome, but there is no adjusted scale for babies that survived 35 minutes of cardiac arrest and have undergone many hours of general anesthesia and two major surgeries. Landon is still expected to fall on the "typically" developing scale. I had to answer "no" to all of the questions regarding his development.

Having had two other children go through well-baby checks, I can already tell that our pediatrician treats Landon differently. In addition to just looking him over, checking ears, throat, genitals, etc. he also does a much more thorough physical examination. He checks all of Landon's reflexes, puts him into different positions to check his strength, and does several tasks to see firsthand how he is doing. He was concerned with Landon's tone. He said that he is very "floppy" and said that he is going to have to add "developmental delay" and "hypotonia" to Landon's chart. Developmental delay is self explanatory, and I was expecting that, but the hypotonia caught me by surprise. Having worked with the populations that I have, the first thing that came to mind when I heard "hypotonia" is cerebral palsy. It means low muscle tone, and can be synonymous for cerebral palsy. Fortunately we were already heading to St. Louis for our afternoon appointment with neurology, which couldn't have been better timing.

After the unsettling checkup in the morning, the neurology appointment was very reassuring. The neurologist was much less concerned than our pediatrician. She said that he only has mild hypotonia in his extremities, but it is more severe in his trunk. She was encouraged by how alert and social he is. Landon successfully completed several tests with blocks. He struggled with passing them from hand to hand and lifting his arms above his shoulders. He also struggled with sitting up on his own, but for short periods of time he can balance hunched over and he is able to reach and pick up objects while doing so.

Overall, she said that Landon is functioning at a 5 month old level. She wasn't very concerned with his tone, she said that after what he has been through it would be much more concerning if he was hypertonic. She felt that it is likely a combination of everything- long hospital stays, 8+ hours of general anesthesia at a young age, being critically ill when he was a week old- that are causing his delays. Everything she said made sense. If most of his issues are in his trunk, that explains why he was keeping up with his milestones until recently. Sitting up was the first milestone that he missed, and so that goes right along with what she said.

So the next step- what do we do about it. A 2 month delay isn't exactly devastating, especially considering what Landon has been through. After all, this is the child that another member of the neurology team once called "Superman" because he could move his extremities and had his newborn reflexes back- even before they saw a perfect MRI. Just like our other boys, all I want for Landon is to be the best that he can be. So we are going to start physical and occupational therapy. I have contacted early intervention and we are meeting on Tuesday to go over financial and insurance information, and then soon after Landon will be evaluated. If he exhibits a 30% or more delay, he qualifies for services and they will come to our home to work with him. If he doesn't qualify, I have a prescription for OT and PT which I can use to get him therapy privately. The only reason that would not be ideal is due to the fact that we live in the middle of nowhere. The closest place that sees babies is 40 minutes away, and so that would be complicated with my work schedule. But we will do what we have to do. In July we will return to see his neurologist and re-evaluate how he is doing.

Last but not least, is the best part of going back to St. Louis. We were able to see the doctors/nurses/physician assistants/etc. that saved Landon's life. I had written and told them we were coming, with every intention of getting there at least half an hour early to go up and visit. But at the last minute John decided to go in to work, since his sick time is not exactly plentiful right now either, and so we were really rushed to get there by 4:30. We signed in in the waiting room at 4:30 exactly, and before I even sat down one of the doctors taking care of him the night that he coded on the floor was in the waiting room looking for us! I am thoroughly convinced that one of the main reasons that Landon survived was because he had so many people taking care of him that truly cared for him. CPR is very rarely successful after as long of a duration as Landon received it, but they didn't give up. And because they made the split second decision not to give up- even knowing how poor the prognosis surely was- Landon is still here having a wonderful life and making us so proud. Even though I send pictures every few months, it was great to be able to visit. Landon smiled and laughed at everyone. We went up to the 8th floor and saw many people that had been there "that night"- as it is referred to. Although we come to St. Louis often to take the boys for fun days, it is always on the weekend when many of them are off work. The best part of continuing to go in for neurology appointments during the week will be to visit! Since we will be going back in July after Landon's first birthday, we are going to work so hard so that maybe he will be able to walk in and actually say "hi." If early intervention asks what our goal for Landon is- that is it. For him to be able to walk in and greet everyone that saved his life, and to eventually be able to tell them "thank you."

Couldn't wait to share!

I know I usually go weeks without updates, but I couldn't wait to share. Since starting the donor milk at 5:00 am yesterday morning Landon started stooling on his own. My mom texted me a picture of a poopy diaper while I was at work, I'm sure my co-workers think I'm about the strangest person to ever live, but it was such a wonderful sight to see! His belly is the most flat it has ever been in his life. Even when I've thought that it looked good in the past he must have been distended becasue it has never looked this good.

Landon is so much happier and more alert. Struggling to digest his food must have been taking an even bigger toll than I realized. He hadn't rolled over since early December and he rolled 4 times last night. He also did a better job of sitting unsupported- although he is already 6.5 months old he is not yet sitting up on his own. When we did the irrigations yesterday there was hardly any stool that came out at all, he had passed it throughout the day. I know this is gross, but just to paint you a picture, on formula- picture cheese sauce mixed with cottage cheese. On breastmilk- picture water with yellow food coloring with a few tiny flecks.

This is a short update, but I had to share. Once again I'm on my lunch at work and I'm out of time. I hope everyone has a great rest of the week.

Repeating the same experiment over and over and expecting different results is the definition of insanity

Things haven't been great lately. In my last post when I said that the vomitting had resolved, I was wrong. He continued to vomit every 2 or 3 days. His appetite also went way down. Immediately following his surgery he had a huge appetite and ate 36+ ounces of formula a day for about a week. I was excited because he gained back all of the weight he had lost, but since then he has only been eating around 15-20 ounces a day. He was gradually losing weight instead of gaining and about a week before our follow-up appointment he started being unable to pass stool or gas on his own. We were irrigating him 4x per day and that wasn't even enough.

On the 11th we went back up to Cincinnati for his follow-up with Dr. Levitt. One look at his abdominal x-ray and he was sure that Landon had enterocolitis. This was very upsetting because we hadn't had an episode since we started going to Cincinnati when he was 2 months old. So now we're doing a month of antibiotics and continuing the frequent irrigations. On top of all that, Landon was also really tight where they reattached his remaining large intestine to his rectum and so we have to dilate. The smallest rod is the size of a sharpie marker, the largest one is the size of a magic marker. We have to insert them for one minute twice per day. He hates it and screams in pain. It takes one person to hold him still and another person has to do it. It's horrible, but it's what we have to do so there aren't any other options.

It is really bothering me that he has enterocolitis again. Since his first episode where we nearly lost him we have always been able to keep it under control when he gets it, but he had gone so long without getting it I thought maybe we were done. And we had been irrigating him several times a day which should have prevented it, so now I'm worried that we no longer are able to keep it under control. We go back for another follow-up on February 8th. He will still be on antibiotics so we expect to find out that the infection is gone, but hopefully it doesn't return.

Either way, once again I feel like we have lost a lot of control. We did all we could and we weren't able to manage it. It is definitely time for a change. I ditched the Culturelle and started Landon on a much stronger probiotic, VSL 3. As far as the poor appetite and weight loss go, there wasn't a lot that we could do. What makes babies gain weight? Fat and increased calories.. which are also constipating. You can't get a child constipated that is already battling dangerous intestinal infections. The stool gives the bacteria even more places to grow and take over. So it's risky to attempt to change formulas, and it might not even help. All I could do is beat myself up over not being able to breastfeed. While we were still in Carbondale I had two lactation consultants helping me with no success, they saw me pump for 30 minutes with nothing to show. The last thing I was told before we left was that due to my blood loss during the c-section (they had to give me 2 units) that my body just might be working on other things. On the 6th day of Landon's life when he went into cardiac arrest in my arms for such a long duration I quit pumping. Who knows what would have happened if I would have kept at it. Once he recovered, he did well on formula with his colostomy and so it wasn't incredibly urgent situation. I knew that breast milk would help him and so I tried the Yaz-Doperidone protocol to re-lactate for 2 months with no success. Once again, I was disappointed, but not a life or death situation because he did well on formula with the colostomy.

Unfortunately, since the pull-thru, his tummy just can't handle it. What options did I have, spend hundreds of dollars on the meds to try the protocol again which would probably have no success, or spend $5 an ounce to buy milk from the milk bank, knowing I could only afford to feed him about 4 ounces a day- and that is with cutting back on some major expenses. After battling with my pride I finally reached out and asked for help on my Facebook page. The response was overwhelming.. it has brought me to tears on several occasions. Enough wonderful ladies have already donated enough to give Landon 16 ounces a day for the next month. Many have commited to pumping the best they can to try to keep giving me more. If I can get 4 people with 4 ounces a day to spare I can continue giving Landon at least half breastmilk. Production can be inconsistent and you never know what is going to happen in life, but I think I've found enough. God bless all of those wonderful people. I know this is going to make such a big different for Landon. This could very well be the key to helping Landon become strong enough to finally kick enterocolitis for good. At the very least, it will be easier to digest and will give his poor intestines a break. It is amazing what people are willing to do to help others. I've given many of our donors a brief description of what happened with Landon and what issues he faces, but they really have no idea how great it is what they are doing for him. For our whole family! It has been incredibly stressful watching him get sick over and over and wondering if there was something I could have done differently to make this stop happening. This could very well be it. Thank you so much if any of you are reading this. There are no words to express my gratitude.
I'm at work right now and my lunch is over, but I will update in a few days. This is day 4 with no vomit, so keep your fingers crossed! I hope things will finally get better. As always, please keep Landon in your prayers.

Post-op Update

Well I'm just now getting around to updating.. things have been busy.

Right after I posted that last update Landon spiked a 103 degree fever, and that was with Tylenol. Then his heartrate climbed into the 200's and was staying there. I, of course, was terrified that he was septic, but they gave him some Motrin and his heartrate went down along with the fever. They assured me that although it is unusal to spike a fever that high following surgery, the fact that his heartrate dropped down along with the fever was a good sign. Fortunately the fever didn't return and that was the end of that scare.

He stooled for the first time 2 days earlier than expected. There was some gas that lingered in his small intestine, though, and so on day 5 post-op he was able to drink Pedialyte. Day 6 he started taking formula again, and day 7 we were discharged. We stayed in Cincinnati and explored for 2 more days, and then day 9 we went home. It was earlier than expected, and we made it home in time for Carson's birthday on the 23rd.

Unfortunately, the 23rd turned out to be more eventful than I would have liked. Landon started vomitting violently and having awful diarrhea the consistency of water. We were afraid of enterocolitis and couldn't irrigate him that soon after surgery and so we had no choice but to bring him back to Cincinnati. My dad went with me so that John could stay here and give the other boys a halfway normal Christmas. When we got there, everything was a mess. They hadn't put through the orders for Landon to be admitted like we had discussed so we ended up waiting in the ER waiting room for 4 hours. This was while Landon was getting severely dehydrated, not to mention coughed and sneezed all over by tons of kids with the flu, RSV, and God knows what.

Finally they saw him in the ER and got him admitted. As I expected, getting the IV in was horrible because he had gotten so dehydrated. They had to dig, and dig, and dig.. at least 10 different times. It was a horrible thing to watch just wishing they could do it to me instead.

They did a full work-up, labs, x-rays, stool culture, and everything was fine and so we were able to leave Christmas eve night. We later found out that the stool cultire came back indeterminent for c-diff and so they wanted to treat him with Flagyl as a precaution, otherwise assuming it was just a nasty GI bug.

A few days later, the same thing started all over again with the violent vomitting and diarrhea. Another hospitalization resulted, and everything looked fine besides his electrolyte balance being off from being dehydrated. The stool culture was repeated, and this time negative for c-diff which meant either he never had it or it cleared up extremely fast.

We went back home, and he then he would be fine for about 2 days and then vomit again. The diarrhea continued for around 10 days before it finally cleared up. The vomitting has only recently resolved. They are hypothesizing that due to the Hirschsprung's and a recent surgery on his intestines he just hung on to a GI bug way worse than a typical baby would. I was worried that he lost nearly 2 lbs. between the surgery and illness, but in only a week he has gained a pound of it back and so I'm sure a month from now there will be no evidence that any of this ever happened.

We go back next Friday for a follow-up and to find out if we have to start doing dilations. If you don't know what those are, I'll give you a hint: it is what it sounds like. Dilating his... you know.. the area he had surgery on. It won't be pleasant. I left out of this story a huge piece regarding what ended up happening with Endocrine in Cincinnati for his MEN-2 testing, it was a huge battle and a long story. I will add that sometime later just to provide some entertainment. I hope that everyone had a great Christmas and New Years.