Friday, July 26, 2013

G-Button Surgery

Tuesday morning at 6 am, Landon had his last food for 14 1/2 hours.We arrived at Children's Hospital in Omaha at 10 and, after some preliminary bloodwork and exams, Goat's surgery began at noon. Karen and I were incredibly impressed by how good a sport Landon was all morning. He only fussed for about 30 minutes when his 9 am feeding was skipped and was otherwise content all morning. Even after his surgery in the afternoon, Landon rarely cried as long as Karen or I was holding him. I think I would have probably fussed more after that procedure.

During the 30 minute procedure, a surgeon inserted a laparoscope through a small incision in Landon's belly button. Using the laparoscope as a guide, he then sutured the stomach and body wall together. When he was confident there was a good seal, he cut a fistula (hole into an organ) into Landon's stomach and inserted the gastric plug we feed him through. We were told that he was very fussy as soon as he awoke from surgery but as soon as Karen started talking to him he fell back into a deep sleep. Landon cried periodically after the procedure but I was surprised by how happy he seemed, especially because he was only given children's tylenol for pain control.

We slept in the hospital Tuesday night and were pleasantly surprised on Wednesday morning to find out we would be going home in the early afternoon instead of after 6 as we originally planned. After a quick lunch and a few goodbyes we were headed back to Kansas with a happy, tube-free baby! Almost immediately after the NG tube was gone we noticed Landon smiling. We rarely saw him smile before the operation and attributed them to gas. He now gets big smiles after burps, when he hears Karen's voice, and just spontaneously when he's happy. Each little grin brightens our day and we can tell he is obviously happier now. His face has already started clearing up from the rashes that break out under his tape and he doesn't whistle when he breathes through his nose anymore.

The site where the g-tube enters his stomach is still very sensitive and we have to be careful when changing his clothes and washing him. He is on minimal pain killers to avoid any interactions with his anticonvulsants. We are being very careful to keep the area clean to avoid any risk of infection and we have tinkered with his diet to limit his gassiness as much as possible. Just the last two nights we have noticed him sleeping through the night better and swallowing spit-up instead of choking on it. Overall, the g-button has quickly been a bit improvement in Landon's life and I think that as the surgery site heals, he will be happier each day.

Our next big appointment is on the 31st of July when Landon has his first appointment with his primary care physician. We had a very difficult time finding a doctor that would take him in Manhattan but after asking for help from Infant and Toddler Services of Kansas, they were able to convince a doctor in town to see him. He will see Dr. Knopp for his basic vaccinations and in case of a baby emergency, such as a fever, rash, etc, and we will keep our specialists in Lincoln and Topeka for more specific care. We are also scheduled for an appointment at the University of Chicago with the pediatric neurologist there who specializes in brain development. He has been wanting to see Landon for a couple months and it finally works with our schedule to drive up for a visit.

The outpouring of love and support from family, friends, and acquaintances has been incredible. Karen and I each had dozens of texts on the day of Landon's operation and our family members had many more, checking in and following up. We are blessed daily and are thankful for the hard work and intelligence of the doctors and nurses that have kept Landon healthy. We are thankful to live in a time and place where we have access to the science and technology required to test Little Goat and improve his life with the operations and medications we need. We would like to encourage anyone who is having their own challenges to pray and to be open to accepting help. It is not in human nature to go it alone and having a hand to support you on the way is such a comfort and a real necessity.

"It is only in our minds that we are separate from the rest of the world." - Gay Luce. Take comfort in know that you're never alone, at the best of times and at the worst.

Wednesday, July 17, 2013

Neurology Consultation #2

Landon had his second neurology consultation yesterday. I know many of you have been anxious to hear the update from the visit but unfortunately we did not get much good news. Landon's head has not grown significantly and Dr. Katz thinks that the development we saw in our meeting in Omaha may have been due to variation in measurement techniques. There has been minimal change in Landon's reflexes, although he may have slightly stronger reactions to some stimuli than originally thought because he was more awake during this visit than the last. That being said, he is still quite deficient in his reflexes, particularly those that deal with the feeling in his feet and toes.

The good news from our meeting is that Landon isn't getting worse. The arrhythmia he was diagnosed with is common and doesn't appear to getting worse. He hasn't had a seizure since May 20th, which is a truly great blessing. His seizure activity is actually stable enough that we are beginning to wean him off of the phenobarbital, the first anticonvulsant he was on. Phenobarb can make people drowsy and is hard on the liver so we are happy to be reducing his dose. It also would be nice to only have one medication to administer so that we can minimize any side-effects from drug interactions. Landon is also on Levitiracetam (aka Keppra).

Dr. Katz spent the majority of our meeting talking about how we were doing psychologically and emotionally. He suggested a book to us called "A Difference in the Family" about how to communicate our feelings and needs to our family and friends and about what types of feelings are normal when you have a child with a disability as severe as Landon's. We haven't had the opportunity to get a copy yet but I'm looking forward to reading it. He said that although it was written in the seventies, he has been suggesting it for 30 years and hasn't read anything better yet. He also suggested that we take time to discuss what we would do in a worst case scenario should Landon encounter a serious health complication. Goat is at a very high risk for some life-threatening complications and so we need to be prepared for these possibilities.

Recently we have been trying soy formula with Landon instead of the sensitive stomach formula he was on and it seems to be helping with his gassy spells, particularly early in the morning after his 5 am feeding.  Hopefully he will eventually stay asleep through that time of day. I think if we could get him to sleep right after his 1 am and 5 am feedings we would have a better chance of straightening out his days and nights. As it is, he still likes to be up in the night and prefers to sleep during the day.

Karen and I would like to thank everyone who has been so kind and expressed their concern about our well being, mentally, physically, emotionally, and spiritually. Landon has been a challenge in ways I never could have understood but he has never been a burden. Rather, he gives us inspiration to work harder, both in our daily activities and on ourselves as individuals. We look forward to each day and, while we are certainly tired sometimes, we try to keep energetic and enthusiastic.

We are very anxious for Landon's operation on the 23rd and getting to see our baby boy without tape and a tube for the rest of his life. That is the current milestone we are striving for and we are planning for lots of pictures once you can see his face. Bless you all and if you have any questions, please comment or message on the facebook page and we will try to answer you directly.

Thursday, July 11, 2013

Landon Shrader Family Fish-Off

Landon, Karen and I have been the focus of incredible generosity over the past three months from numerous people and organizations. We could never have anticipated so many donations, nor do we wish to put financial strain on our selfless communities by asking for continued charitable giving. Instead, we have been considering organizing an annual event in Landon's name to encourage parents to enjoy each day and live in the moment with their kids. It would be a terrific side benefit if we are able to raise a few funds to help cover Landon's medical supplies as well.

 When we considered what type of event we wanted to host, we set a few criteria we wanted it to meet. First, we wanted to make sure it involved parents and kids having fun together. We also didn't want to exclude any individuals without children or kids that wanted to participate without a parent. We also wanted to encourage families to get outside an enjoy nature. As I've mentioned in past posts, Landon really loves the breeze and we try to take him out as much as possible, as the the sun and heat permits.

With those goals in mind, Karen and I have brainstormed for quite some time before landing on an idea we really like. While Karen's parents and sister visited this past weekend, we went down to the river and fished for a few hours. We had a chance to chat, laugh, relax, and celebrate together. It was the spark we needed and today after some discussion we developed an event I think fits perfectly into our event rubric.

We have tentatively named our event the Landon Shrader Family Fish-Off and would be hosted at a lake or river near Manhattan or Elmwood or even both if there was enough interest. It would be a fishing tournament of sorts with prizes, medals, trophies, or some other form of recognition for the biggest fish caught by age and gender (boys under 13, 13-21, 21-65, 65+ and the same for girls). We would like to have a special prize for the biggest combined weight by a parent and child team to encourage moms and dads to come out with their kids. The idea is only a few hours old and just a concept but we really like what we've got so far. The details of location, registration cost, prizes, etc are all yet to be determined so if you have any ideas I would be more than happy to hear them.

As far as Landon's health, the past 10 days have been highly uneventful, our favorite kind of days. We are anxiously anticipating his appointments on the 15th and 23rd. We're optimistic that we will receive good news at both. Thank you for all the prayers and thoughts we receive every day. We definitely feel showered in blessings and it has made us for hopeful for the future. Little Goat gives us new reasons to smile every day and we are blessed by every extra moment we get to spend with him.

Tuesday, July 2, 2013

Ocean Sounds and Full Calendars

What a crazy week and wild month to come. After a lot of hand wringing and anxiety, we finally had our doctor's appointment to evaluate Landon for a g-button last Monday. Landon was an incredibly good sport through a very difficult day for him. We have kept a very strict feeding schedule for Landon, feeding him every 4 hours (1,5,9,1,5,9) for the last two months. We are rarely vary from the schedule more than ten minutes one way or the other so when Monday required us to withhold food after his 9 am feeding until after his appointment, we anticipated a very fussy baby. As we expected, at about 1:15 Landon was very fussy, crying for his formula and his delayed feeding. To our surprise though, at around 1:45 he began to calm down and actually fell back asleep.

Shortly after 2, Landon's upper GI series began. A small amount of barium contrast was pushed down his feeding tube and he was strapped to a rotating plank to allow doctors to observe different angles of his stomach and intestines. We were finally able to feed him after the test was completed, at around 3 pm. Even though his feeding had been delayed by two hours, Landon had only fussed for a few minutes and even when they were spinning him in circles to observe his intestines, he stayed calm and just looked around. The results of the test were promising. Landon's gastrointestinal tract (GI) is normal and will accommodate a g-button well. Next, we needed a consultation with a surgeon to evaluate his lifestyle and need for the operation.

Before the consultation, we met with the surgeon's nurses to take some measurements. We found out that Landon has grown to 10 lbs, 1 oz and is 22.75 inches long. His physical development has really been exceptional since coming home from the NICU. Next, we received the best news of the day and it was truly unexpected. Landon's head has grown! His cranial circumference has increased by a full centimeter, to 33.5 cm. This measurement is the best was to evaluate for brain growth, something we were told not to expect. Even though it was only a centimeter, we are ecstatic to see some change in this measurement.  For comparison, the average baby of Landon's age has a circumference of 40 cm and even the bottom 5 percent is at 37 cm. In fact, Landon's head is still only the size of a newborn in the 10-12th percentile in size. But you have to start somewhere.

The consultation with Landon's surgeon went well and he is scheduled to have a g-button put in on the 23rd of July. It will be wonderful to have the irritating tape and tube off of his face and out of his nose. The surgery is relatively simple and very common. The surgeon will go in laproscopically and perform a gastropexy (he will suture the stomach to Landon's body wall). Then he will form a port into which he, and eventually can and I, can insert a feeding tube. We have heard from a few people that suck training usually improves after the g-button is in so we are looking forward to that as well.

I worked from 8 to 6 from Tuesday through Friday after we got back from our appointments in Nebraska so Karen had to spend quite a bit of time at home alone with the baby. On Wednesday, she decided to go on a short trip to Topeka to visit our friend Jess and take Landon to the pool for the first time. In Jess' apartment complex, there is a small, shaded pool that Karen and Jess held Landon in so that he could feel the water. He loved it! Karen said that he was wide eyed and happy while he was in the water, which comes as somewhat of a surprise because of how he cries during bathtime.

Goat seems to love everything about being outside, particularly the wind. If he ever gets fussy in the car, all we have to do is roll down the windows and he turns happy as a clam. He really enjoys the bright colors of grass and flowers in sunlight as well. We started taking him out to the back patio when he was fussy earlier this year but we've had to stop in the past week because the mosquitoes are so bad around our house. He got one bug bite on his forehead this week and was, understandably, fussy for the next couple days. We gave him antihistamines but there is only so much you can do. He even ended up scratching himself just below the eye trying to reach the spot on his forehead.

Given how calm he is outside, we switched out the music we play for him at night for nature sounds. Apparently that was a golden moment in our critical thinking and we hit the jackpot with ocean sounds. Our crying at night has been dramatically reduced and when he does cry, he seems to go back to sleep much easier. Apparently we need to move to the beach.

On Friday evening, our little family drove up to Fairbury to visit my Grandpa Meyer. This was Grandpa's first chance to meet and hold Landon. My uncle and aunt Jeff and Beverly came to visit as well, along with my cousin Sara, her husband CJ, and my parents drove down from Elmwood. It was nice to have a chance to catch up with everyone and really wonderful for them to meet and hold the little man. We have been blessed to have such wonderful families that support us in everything we do and it is a treat to have time for them to hold Landon.

Mikaela, Brandon, Sophie, and Mocha (my sister, brother-in-law, niece, and their puppy) drove down from Elmwood on Saturday to spend the night. Mikaela, Karen, and the babies relaxed in the back yard while Brandon and I fished in the pond behind our house. It was really nice to just get away from it all and let the babies spend some time together. It was over the last couple days that Landon's awful diaper rash has finally resolved and this makes diaper changes a less traumatic event. All in all, we have had a truly wonderful week.

Landon has appointments left and right this month but the two biggest are his neurology consultation on the 15th of July in Topeka and his surgery on the 23rd in Omaha. It will be exciting to hear whether or not he has shown any neurologic improvement, particularly with his peripheral neuropathy that prevents him from having very much sensation in his feet and legs. Karen and I have thought we've seen improvement but it's hard to tell and will be nice to have a more objective evaluation. We also have a meeting with a nursing association that might be able to come into our home and care for Landon a few hours a day to let Karen run errands, clean the house, take a nap, or even go back to work if she decided to. We haven't had much opportunity to talk about it yet but it should be an interesting meeting.

"There is nothing that wastes the body like worry, and one who has any faith in God should be ashamed to worry about anything whatsoever." - Mahatma Gandhi