One Families Story

Our story begins unfolding in September, 2009! I will tell you our story and then provide you with the proof that you need to see that we are an innocent family!

Our little boy Landon Weber Born at 30 weeks, (31 weeks if you want to be exact according to dr's) Landon suffered from multiple infections while in the NICU. He spent 72 days in the Neonatal Intensive Care Unit. We came home with severe Reflux, and Neonatal Hepatitis, and a few other small issues, but nothing too terrible. A week after he was discharged, we took him to the pediatrician for his check up, and his Liver numbers seemed to be increasing, and he was looking yellow, and having some issues with eating, so we were re admitted at St. Louis childrens. After a few weeks and multiple tests they confirmed he had what they believed was Neonatal hepatitis, and severe reflux. They put him on meds and we were back home. Landon did pretty well until he started catching colds, that were never just colds. His Lungs were premature, so those were always affected . He began having to be admitted for lung problems. Most of them were what they called bronchospasms, but he was retractings, and wasn't responding to the antibiotics, so usually he would get admitted just for a day or 2 and then we would be able to wean to oral antibiotics. We then started seeing pulmonology who thought that maybe Landon could be aspirating. I "believe" that one of his tests actually showed aspiration, and another showed Penetration, but no aspiration, but a risk for aspirating. We followed with GI because we suspected he might actually be aspirating on reflux. He has a reflux test done which showed alot of reflux along with several that came up high, and he was referred to surgery to see if a reflux surgery would be helpful. The surgeon agreed, and did another study to see if he had delayed emptying in his stomach, and he did. So the surgeon decided that he needed a nissen fundoplication(reflux surgery) and a pyloroplasty which would help with his slow motility, and put in a g tube to help him get the extra calories that he needed.

So, this was done and after surgery he had a few minor problems but then seemed to do pretty good. At this point then, we followed up with GI who was happy with his progress other than they were unable to get him to digest bolus, so he had to be kept on continuous feeds, but was still eating a little by mouth. We found though that Landon was still developing recurrent lung infections and a few pneumonia, which the pulmonolgist thought could be aspiration pneumonia. His Pulmonologist wanted us to trieal nothing by mouth and see if that helped. It seemed to help, he was able to get rid of his lung infections and feeling much better. We tried again feeding with therapy but still continued to seem to have muscle weakness with swallowing. Because Landon liked to eat by mouth we agreed to focus on allowing him food in the morning, but as he got more tired during the day we would just tube feed. This seemed to work better. After a severe case of RSV Landon required oxygen as his saturations were dropping into the 80's (as noted by the hospital staff) and he was discharged on home oxygen, and we were able to slowly wean him to just nighttime oxygen at just 1/2 liter. Some of the things we were noticing though was Landon was getting more and more behind in development, but he was a feisty boy. Always wanting to be on the floor playing with his toys. He learned how to sit up at about 12 months , and as soon as he did he was always sitting up playing on the floor. He finally started crawling around 18 months, but was unable to stand and walk even with extensive therapy. About the age of 2 we got him a walker and started working with a walker. He LOVED IT! We talked to our neurologist who explained that Landon had a PVL in the brain, and that would affect his balance and Gait, and that he would definately give him a diagnosis of Cerebral Palsy with his spasticity in his lower extremity. They called it Spactic CP. He told us Landon should not get worse, but hopefully better in time, and if we started seeing more dealay in his development to come back and we would repeat the MRI. With Landon having frequent hospitalizations and need for labs and iv medications they decided Landon would under go a port a cath. As it was hard to get an IV on him. At a little over 2 i believe, we went back and discussed our concerns. He wanted to do a Lumbar puncture and some labs under sedation. He told us he wanted to look at the mitochondria just to see if there could be something metabolic, because his MRI had indicated a possible metabolic disorder. At this point Landon was very short for his age, and having the problems he had with his muscles we agreed to let Dr. M do the tests. He came back with a slightly elevated Lactic Acid , and Pyruvate, and they found a polymorphism in the ND5 gene, but nothing that could diagnose or rule out Mitochondrial Disorder, he felt that this was our problem, but it was very hard to diagnose so told us to see a specialist. James and I moved forward with finding a specialist. We chose the one that we had seen on Good Morning America in Houston, Tx. We went to see her, and she did a complete evaluation. She asked us many questions. The biggest thing was, when we got to asking about Seizures, she asked us if he had any, we both said "no" thinking of the kind where they are convulsing and shaking on the floor. We knew he had never done that, however she then asked us about him having any staring episodes... This is one of the biggest things we noticed about Landon but we just thought it was him deep in thought. she told us no, those are called Absent Seizures and they are very common in children with mitochondrial disorder, so she would test for that. She said all his history of the lung problems, and gi problems, and the fact that he had mild "ptosis" was very highly concerning for mitochondrial disorder, but she would have to do a muscle biopsy, and some other genetic tests. So, we did just that. We went back home to Missouri and waited for her results. 3 weeks later we get a call that she wants to go over test results and we were due to come back for a follow up so we did just that. She told us that Landon's muscle biopsy confirmed a Complex III Mitochondrial Disorder. This was the complex that affects him turning his food into energy. That this was why he had the muscle weakness he had, the ptosis, the gi reflux, and the recurrent infections. She started him on a seizure med for a preventative, and also what was called a "mito coctail" In April 2009 Landon was eating a french fry at hermann hospital before a dr appt, and i remember him choking on it, but thought nothing of it as this he had done frequently. That night while at the Ronald Mcdonal houst where we stayed while waiting on our next appointment, Landon started choking and wheezing. He had no fever, or any other symptoms, but i became concerned and as we watched his pulse ox we noticed he was having a bit of trouble keepign his saturations up, so we took him to the ER. It was then that he was found to have pneumonia, which they say was aspiration pneumonia, and Dr. P the pulmonologist and allergy dr made him nothing by mouth and to be strictly g tube fed from that point. HE was admitted where he had trouble with his Lactic Acid numbers and his CO2 levels. It took him 2 weeks to recover from the pneumonia and be stable enough to come home. Dr. Koenig herself(the mito specialist) noted that she actually saw landon having seizures which were the staring episodes we noted, and informed us those were indeed seizures and we would need to increase meds. We flew back home to missouri and decided that with the constant care that Landon needed from the mito specialist and her telling us that she had a special team to follow him, we thought it would be best to move to texas to be closer to these specialists. Our goal was to just live there for a short time and see if they could overall increase his health and get his lungs better, and gi system better. Ufortunately that didn't happen. In July 2008 we moved to Texas. AT this time Landon just seemed to be having some trouble with his g tube and getting the medicine in his g tube, and feeds were not going nearly as well. THe GI thought it would be best to admit him and start him on TPN until we could get his system going again. We agreed. He was admitted a day early as his blood sugar had been low from not tolerating his feeds very well. GI came in, and we discussed starting TPN and the plan. We agreed that for now Landon could keep the port a cath he had for his IV nutrition. THey told us Landon had a pseudo obstruction and that is why his GI system at the time was not working. So, the HOSPITAL accessed his port a cath and started him on iv fluids. 24 hours Later, Landon is running a fever and labs are starting to look worse. He is sent to the ICU to be intubated and found to have developed a central line infection of FUNGUS. Once again, the hospital accessed his line , and apparantly caused the infection. Not to mention the TPN /Lipids have sugar and sugare in a central line, and plastic in the body, not a good combination. The GI wanted to put in a G/J feeding tube, which in records states that i was actually against because of the research i did on having a central line and bad GI system, and we know that Landon is actually colonized with yeast. Eventually i agreed knowing that Landon did not have a choice if we wanted him off of IV nutrition. Unfortunately Landon's G /J tube would not stay in place. The first time they put it in, Landons tube was mis positioned and barium that they used to confirm placement went into the muscle of the abdominal pain causing him excruciating pain, and put him back into the OR immediately. A week later it came out of place again, and we were told with the way his GI system is pseudo obstructed that this type of surgery was not going to work, so they put in a surgical J tube into the Jejunum, which then worked! (Here is where you will note further down the story that maybe I was personally pulling his tube out, but no proof once again) Landon goes into organ failure, but Dr. Koenig our mito dr, puts him on the Ventilator to rest his body, and actually helps him get better. 6 days later we are out of ICU and into a step down unit. Landon undergoes numerous antibiotics, and we find that he redevelops the same infection just a few short weeks later. So, they put him on a broader spectrum of antibiotics and we get through that hurdle. Landon reamined hospitalized until the end of OCtober, and then were back in for another infection . Most of Landon's infections were all in the hospital or there after (although we are accused of possibly causing the infections) We fast forward to December of 2008. Dr. K and her nurse go with us on a make a wish trip so that landon can be sure to not get too sick . Although we don't necessarily feel that it was completely necessary it did help us alot with Landon. In fact, While on our last day there, Landon was crawling around playing on the floor with Dr. Koenig right there and gets his line caught around a chair and pulls his line right out... again we are accused of maybe pulling his lines out.. even though the Dr. testifies that she witnessed the actual incident. We get home, get his line repaired and we do pretty well with a few ins and out's in the hospital . Mostly for MRSA infections, but also a few GI translocation infections. Landon has a Bone Marrow Biopsy done also during this time to find out that Landon actually is not producing any erithripoitin (Spelling??) in his bone marrow and needs a shot of procrit to help produce that so he won't need blood transfusions... again not something i can make up. We move forward to June 2009. Landon goes to Texas childrens hospital to undergo a Monometry Study to see what his GI system is doing, at this point we are not having any luck in feeding him into his stomach. This test is done by a motility specialist he tells me that Landon's results are not good, and that he has virtually no motility in the upper part of the stomach , but there is a little motility left in the distal region of the jejunum, and he would recommend an Ileostomy be done to help him. There would be no guarantee but it would be our last effort in trying to get him to feed again. We know he cannot live on TPN forever as it will cause liver failure, so after James and i talk and after months of not agreeing for this surgery, we then decide to go forward as we are not ready to give up on him! The Ileostomy was the best thing we did! At that point we were able to very slowly advance on his feeds through July, and August, In September Landon is doing so well we take a small vacation and go home to see family. Unfortunately we have an issue with the Ileostomy and his bag breaks and contaminates the central line he has. We get sterile and clean the line and change the caps, only to find out that 12 hours later he has spiked a fever. He still is doing ok, but to be safe i call the dr's to ask if i should try to get home (which is 12 hours away) or go to the local hospital here. THey advise us to just go to the local and get him assessed there as he can deteriorate pretty rapidly. He does fine though, but after the local dr's all talk with houston, they decide the best option is to air lift him back to houston where they know him best. All the mean time he is doing just fine other than a low grade fever. We find out that he has once again grown MRSA in his line. A common hospital virus. So we get him flown back, and he is doing well , start him on his antibiotics, and 2 days into our hospital stay, guess who shows up at my room...... YEP YOU GUESSED IT.. CPS. From there our families worst nightmare erupts.... I will post that in a new entry.