Wednesday, September 18, 2013

Struggles with medicine

I apologize for the length between messages and the brevity of this one. I have been getting bogged down in schoolwork and studying as the semester is hitting full swing so I haven't been able to dedicate the time to writing that I would like. Landon has had some negative changes in his health stemming from his growth in body size. As he grows, the amount of medicine he requires to control his tremors/seizures increases along with his size. Unfortunately, the increased amount of medicine also has begun to upset his stomach and cause him to spit-up excessively. As I've expounded before, spitting up is one of the greatest risks to Landon's health with the risk of aspirating.

To help control his reflux, Dr. Knopp prescribed Prevacid to make his gastric contents less acidic after the addition of levitiracetam (his anticonvulsant). While the Prevacid did a fine job of decreasing the amount of reflux, it had the unintentional side-effect of giving Landon the worst gas of his life. The night after we gave him his first dose, he shot awake in the middle of the night and started screaming bloody murder. We had no idea what the problem was but, suspecting gas, I attempted to vent him through his feeding port. The amount of air we were able to release was mind boggling. Over 200 ml, more than the volume of 3 of our largest syringes, was pulled out of his stomach before we saw the first sign of formula. He continued to burp and fart large volumes of gas for the next couple hours even after we pulled out that much air. It took several hours for him to pass enough gas to fall back to sleep. This has been a recurring problem for several nights and we have discontinued the Prevacid due to the side effect. I think the biggest problem was that the Prevacid comes in tablet form and we have to crush it and dissolve it to administer to him. I am hypothesizing that the granules are creating gas as they dissolve and that we would have better luck with a liquid formulation.

We had a very scary moment on Saturday while Karen was out picking up a refill of Goat's medicine. I was studying while he laid on the couch next to me and we were having a relaxing afternoon. Due to the length of his soft palette and poor control of the muscles that control his vocal chords, Landon is naturally a noisy breather when he is awake. He snorts, squeaks, and rattles most of the time. That afternoon he was being noisy as usual. At some point I noticed that he had gone quiet and looked over to see if he had fallen asleep. Instead, I saw him with his mouth open, full of spit-up formula, gurgling bubbles through it. I immediately grabbed him and rolled him sternal and head lowered over my arm and let the formula spill out. He wasn't breathing even with a clear mouth so I started vigorously patting his back to get any formula out of his lungs. I watched the clock closely to try and gauge how long I'd been patting before I ran to get the suction machine. Formula continued to run out of his mouth and I was really beginning to panic. Finally, after over a minute of having him flipped over and pounding on his back, Landon took a big gasping breath. The whole experience was very scary, particularly that he was sitting right next to me and still didn't make any noise or thrashing to indicate that he couldn't breathe and was choking. Using my stethoscope, I was able to hear the his lungs still had a bit of fluid in them but sounded much clearer and clean enough for him to be able to breathe.

All in all, Landon is pretty stable but we are definitely starting to realize the dangers associated with Landon's growing body. Hopefully we are prepared for these challenges. On a lighter note, we have lots of fish left over from the fish-off here in Kansas and would like whoever wants to join us for a fish dinner after church on Sunday, September 29. It will be at my parents house at 12:30. The address is 1014 S 286 Street Elmwood, NE. If you have any questions feel free to shoot me an email or comment and I will get back to you eventually. Thank you for all your prayers.

Saturday, September 7, 2013

Settling into our routine

First off, I have to apologize for the long gap between blogs. As the saying goes, no news is good news. The last two weeks have been blissfully uneventful and we've been able to settle into a bit of a routine. As school picks back up for me, I have been able to develop a consistent study routine that still gives me time to hold and enjoy some stress relief with Little Goat. Karen has started working again and I know she and her coworkers are relishing the chance to reconnect. She has been so dedicated to caring for Landon for four months and she deserves this chance to get out the house and talk with adults instead of a baby all day long.

We did have one frightening moment late on Wednesday night when I was putting Landon to bed. Landon had been a little gassy so it took quite a while to rock him to bed after his 1 am feeding started. Finally, at just about 2:15, he was in a deep enough sleep to set him in his crib. However, the tube from his feeding bag caught between myself and the crib and actually pulled the g-button from his stomach with a loud "POP". Landon cried out in surprise but afterwards seemed to relax and I'm relatively sure he wasn't in any pain. It was very strange to see a hole in his tummy leading straight into his stomach and the situation was actually urgent. We had been warned that, should the plug come out, we had less than an hour to get to the emergency room to have it reinserted. Any wait longer than that dramatically increases his risk of infection as well as the fistula starting to heal closed, which would require surgical correction.

We quickly arrived at the Mercy emergency room but were disappointed by how long it took to see a doctor. We even called ahead and warned them of our arrival but it took over 45 minutes for a doctor to see us and reinsert the plug. I understand that they are busy but the process is relatively simple but a prolonged wait would result in another surgical procedure. As it stands, if the plug should ever be pulled out again, I will replace it myself. After watching them closely, the simplicity of procedure surprised me. The balloon holding the plug in place is deflated through a valve with a syringe. The plug is rinsed with a sterilizing agent (chlorhexadine or isopropyl alcohol) then water and replaced. Finally the balloon is refilled and checked for placement. All in all, I am much more worried about the fistula healing closed while we wait to be seen than I am about following the correct reinsertion procedure. Many times I have been very pleased with the emergency services in Manhattan but that night we were both disappointed.

Finally I'd like to thank everyone that braved the 100+ degree heat to participate in the fishoff and fish-fry this past Saturday. We had a wonderful time and I hope you did too. We did have quite a bit of food remaining after the cookout and as such we will be hosting another fish-fry in Nebraska on the 28th of September for those who are interested in eating. We will also be fishing that day and anyone who wants is welcome to join us but won't be hosting a tournament with such short notice. We are finalizing a location right now but I will post on my facebook page and the blog as well when we have made a decision.Thank you for all your support and love, God Bless.