Elephants

This past year has been extremely stressful and trying. At times my faith in God and divine decree has wavered. This is not the first time in my life that I've questioned my faith, but as I look back on all of those instances, I am grateful for the events that have caused me great pain. In Lochlan's case, I doubt that anything good could come of his suffering. There have been times along this journey when I have prayed that I would rather let him go to God than have him with me and let him suffer. My guilt about putting him through multiple surgeries, testing, and the everyday discomforts of renal disease runs deep. Ultimately our hope is that one day he looks up at the clouds in the sky and feels happy that he is alive. Maybe then it will all be worth it.

It is an everyday struggle to stop myself from focusing on the pain. I have always thought that living in the moment is best, but lately I've realized that I cannot dwell on the moment. I must look towards the future, and reach for the life vests handed to me. Sunday was an ordinary day, but for some reason I couldn't shake the sadness and took multiple trips to the employee bathroom to cry. Later in the afternoon one of my coworkers came over just to say hi and when she realized I was having a sad day, she hugged me, and that is all that it took to pull me out. Along the way, in our most miserable times, our friends, coworkers, family members, and kind strangers have reached out to us at the exact moment before we fell off of the figurative cliff.

More than any other medical problem that Lochlan has, his struggle to eat and gain weight has been the hardest on me. I feel strongly about healthy food, so feeding him through a tube feels inhuman and lacks the soothing and bonding experience of bottle or breast feeding. In addition to my ambivalence about tube feeding, after seeing a bill go to our insurance for $8000 to rent the kangaroo pump and supplies, I was at a breaking point this week. Last October, my coworkers my raised enough money to cover our deductible this year. We were so relieved to stop worrying about medical bills and started focusing on getting Lochlan the best care. However, it seemed like a brief honeymoon when the funds would be depleted in one fell swoop.

Along came a ray of light on Tuesday. An extraordinary woman named Erin Musto had reached out to our family before the Holidays. Her foundation Maddie's Mark provides "best days ever" to critically ill kids. After losing her daughter to an inoperable brain tumor two years ago, she began helping other families to keep Maddie's spirit alive. Four kind women showed up on Tuesday and created a bright and cheerful nursery that Lochlan can grow up in. For me it is more than just a magazine worthy room. It is a place that I can go and imagine a brighter future for him when I am feeling afraid and doubtful. I can see us reading stories in the glider and I can see him standing in his crib saying Mommy when he wakes up.

Tuesday night, my coworkers organized a fundraiser at the Saratoga Paint and Sip. It felt so good to get out with my friends. Saratoga Paint and Sip is an incredible local business that opened their doors to us to help raise money for Lochlan. I am so grateful for the financial help, but I was most grateful for a night out that allowed me to feel like a normal Mom getting out of the house to have a good time. Then, yesterday, Life Maid Simple came to my house and cleaned it from top to bottom. Erin contacted them when she heard about our family. Life Maid Simple fundraises to provide families with clean homes free of charge when they are struggling with medical problems. Needless to say, I felt like a new woman when I arrived home from work last night.

When Erin was here, she brought an elephant for each boy. I asked her what the elephants symbolized. She said that when Maddie was diagnosed, her famaily was surrounded by people that wanted to help. When she created her charity, they began making and selling elephants to raise money because the elephant herd will surround a sick elephant. I absolutely love that symbolization. As people continue to surround us (like the elephants) I am starting to believe that everything will be ok.

Good days

Yesterday was a busy doctor day. Lochlan's appointment with his GI doctor was very productive. I feel like we communicated well and agreed on a plan. We have been given the OK to stop the Prilosec to see what happens. Initially, I'm sure that there will be a rebound effect, and the vomiting will increase for a bit, but hopefully after that, he won't need it anymore. We agreed to have an early intervention speech pathologist meet with us to help us get Lochlan to start eating solids. The video X-ray that looks at swallowing will be put on hold for the time being, but the X-ray of his stomach and small intestines is imperative. It is actually something that should have been done before the feeding tube was placed. Unfortunately we will need to wait a few weeks for that.

We also saw his pediatrician. Lochlan had a 6-month check up, but because he was so ill, we waiting to get his immunizations. He did really well with the shots yesterday, but today he was a little cranky and vomited more than usual. At his appointment he weighed 15lbs and measured 26.5in. Yes, he is still tiny, but we are just happy to be on the chart again. We also received some lab work from his nephrologist. Not much good news there, but nothing terrible. He continues to be anemic, his white blood cell count has been chronically elevated without a know cause, and his kidney function is slightly worse than last time.

Aside from the medical aspect, Lochlan has been doing well. He has been smiling a lot, interacting more, and sleeping decently. I would say that developmentally he is little behind, but not much. This week he has started making more and more sounds. The most discerning sound is the k sound when he sees the cat. I thought that maybe he would say Mama or Dada, but kitty cat may be his first word.

We have started having more good days than bad days around here. It's always a good day when we are all home together. Adam likes to say that we are a seal team and I agree. No matter the predicament, Adam and I seem to get through any together. However, when we are on solo missions, or home without one another, the little ones outnumber us and things get hairy. Lately, the days have been smooth. I guess I have just adapted to the continuous feeds and the vomiting. Also, Lochlan has been playing independently, so pumping has gotten easier. Since we are not sure if the peace will last, we decided that it would be a good time to toilet train Declan. I am so happy to finally have the time to do this with Declan, but it makes me sad. Lochlan will most likely not be able to ever be traditionally toilet trained. Sometimes it can be overwhelmingly challenging to not focus on all of the things that Lochlan will miss out on.

To test or not to test

Since starting Lochlan on Cyproheptadine, he has improved. He mostly only vomits in the morning, and rarely vomits at night. We haven't tried to give him a bolus feed yet, but he seems to be doing well with the continuous feed. The medication makes him drowsy, so he has also been sleeping better. If his kangaroo pump didn't alarm at 4am, he would probably sleep better. Unfortunately, the medication will stop working after a while, so we may need to take him off of it and put him back on it intermittently. I also can't stop worrying about how it is affecting his body.

Because the medication is working well on Lolchlan, it leads me to believe that he has slow gastric emptying or gastroparesis. The GI doctor still wants him to continue taking Prilosec, and has recommended a swallowing video using barium dye. Lochlan has had his fair share of radiation, so we think that we will refuse the test. We would like to at least meet with a speech pathologist and discuss Lochlan's issues. Every speech pathologist that I have met is exceedingly knowledgeable and dedicated to their work. If a speech pathologist agrees and thinks that the swallowing video is necessary, then we will go ahead with it. The other test that Lochlan's surgeon recommended is an X-ray of the stomach and small intestine after dye is injected into his feeding tube. I am actually very interested in seeing what that would show, but again, I'm not keen on exposing Lochlan to more radiation. I'm also not so sure that Lochlan could keep a belly full of dye down, and the test would just be useless. It's a catch-22, but I'm set on doing what's best for Lochlan. Lochlan will see the GI doctor on Thursday. I'm praying that she will listen to what we want for Lochlan and work with us, instead of against us.

Eating

Since Lochlan's last surgery, he has been vomiting more than ever. He has only gained half of a pound in 8 weeks, and we are feeling extremely overwhelmed. The only feedback from his GI doctor that we have been given was to increase his dose of Prilosec. I am not a doctor, but from the research that I have gathered, GERD is diagnosed in babies that "spit up" after meals. Lochlan gags, wretches, and projectile vomits all day long especially when he puts toys or his fingers into his mouth. The vomiting continues all night long requiring lots of clothing and linen changes. He gets the most tolerable amount of fortified breast milk on a continuous feed and he is constantly connected to his pump. To make matters worse, he has a cold this week, and also vomits when he coughs.

His GI doctor will be back on Monday, and the plan is to add another medication that increases appetite and gastric motility. Unfortunately the drug is similar to Benadryl and may make him drowsy. I am so torn on giving him yet another drug. I wonder how it will affect his brain and body. Once we start the new drug, I'm going to request that we wean Lochlan off of Prilosec considering it has never helped him. In fact, I feel like it is the nastiest overprescribed medication out there. We are forced to give it to him first thing in the morning on an empty stomach. The second I inject it into his feeding tube, I hear his stomach churn and then he dry-heaves for a few minutes. Twenty minutes later, I offer a bottle which winds up on my clothing, his clothing and the floor shortly after.

Lochlan will be 8 months old in less than 2 weeks, but has yet to keep any solid food down. Everything that Lochlan has tasted, has caused him to vomit within seconds. It makes me so sad that it may be years before he could possibly enjoy food. Yet not one doctor has been able to direct me to a feeding clinic or at least a speech and/or an occupational therapist. I'm hoping that if I reach out to Lochlan's developmental nurse practitioner, she will be able to point us in the right direction.

My guess is that we will get strung along with tests, exposing him to more radiation, but without gaining any useful knowledge. We have another trip planned to go to Boston later in January to see a GI doctor, but I'm not sure if they could help us either. Adam and I are problem-solvers and we discuss solutions constantly. Today we discussed taking Lochlan completely off of the tube feed, and letting him eat when he is hungry just to reset a natural feeding cycle. We agree that he is so far from what is natural, that that is the root of his issues. Unfortunately, we could risk dehydration and another episode of acute renal failure. I've lost my faith in medicine right now, so all I have left is prayer. I pray that our sweet boy gets some relief soon. Please, if you are reading this, pray that Lochlan stops vomiting and starts eating solid food.