Up until recently, my son Jeremy had been very fortunate compared to other severe Cerebral palsy kids in his age range. Most kids with Jeremy’s condition would have already spent countless days or months in the hospital, or passed away by Jeremy’s age. We were fortunate for so long that Jeremy beat the average statistics in his age bracket. Jeremy had only ever been in the hospital a couple of days, two or three times in his life with pneumonia, but then October came with complications like we’d never seen.
In October of this year, Jeremy was in the hospital for 7 days with sudden severe seizures which went up to 200 plus seizures on his worst days. ( VIDEO CLICK HERE ) His neurologists re-arranged his medicines and upped the strength of his seizure medications. His seizures finally subsided for the most part and we happily returned home, or “homes” rather, as Jeremy has split custody spending 50% of his time with us, his father and step-mother, and 50% of his time with his mother and step-father. Upon release from the hospital, Jeremy went to his mother’s where within a few days she noticed an unnerving decline in Jeremy’s health and that he wasn’t feeling well. She’d even called the ambulance who came out to check his vitals, but they said his vitals appeared stable.
On November 11th, the eve that we picked Jeremy up from his Mom's house for our 2 weeks with him, we noticed that there were significant decreases in his awareness and he was very lethargic. I tried to give him his seizure medication orally and he kept spitting up and gagging. He threw up twice and then became extremely lethargic. We took him immediately to the hospital again. And as of December 2017 he is still here in the hospital. After investigation and tests they first found him to be severely dehydrated and his blood-oxygen levels were so low, he had to be put on oxygen tubes for the first week he was here. After more tests, the doctors found his ammonia levels were dangerously high, which was creating an issue for him in his awareness and severe confusion and lethargy. In addition, he was aspirating and spitting up everything that he was eating. After a couple of days, the doctors theorized that the ammonia levels might be so high in his body due to one of his seizure medications, Depakote. They believe his liver was not able to break down the Depakote and because the liver was working so hard to break it down, it wasn't removing the ammonia from the body as it is supposed to. Because he had lost so much weight and because he was so dehydrated and malnourished by this point, they had to start an IV and an NG2 feeding tube. This feeding tube goes into his nose in the back of the throat into the stomach and drips a liquid nutrient into his body so that he gets the nutrition he needs. He's been on this feeding tube for over three weeks now.
The doctors and speech therapists told us early on that he may need a temporary or permanent feeding tube surgically placed into his stomach upon the first video swallow test resulting in liquid and food not being properly swallowed by Jeremy and his food dropping into the lungs. This can cause pneumonia, and it was discovered that Jeremy already had pneumonia upon transferring to the larger hospital in Kalamazoo on November 12th. We worked with Jeremy to help him re-build his ability to swallow during the times he had his ammonia levels low enough to the point he was alert enough to practice.
Speaking of ammonia levels, he has been getting large doses of lactulose which binds to ammonia and pulls ammonia out in a gel form via bowel movements. My poor kid has been dealing with severe diarrhea since, but it is helping to push out the ammonia. However, as the Depekote leaves his system (and it can take 7-10 days), his ammonia levels jumped back up when trying to remove the lactolose, so if his ammonia levels remain high after the depekote is out of his system, then it’ll mean there is another cause, which is so confusing because the doctors say his liver appears decent. But we are hopeful that it’s his medication causing it, but if not, we’ll have to get more testing and continue the lactulose.
What’s more is Jeremy took another video swallow test December 1st and failed it, even though he’d improved on his swallowing, but he was still coughing and the food was getting into his airway. So the doctors will surgically create a button tube that goes into his GI tract where we can pour nutrients into his stomach directly. All parents and step-parents will be getting training on how to care and tend to his feeding tube, while the speech therapist will help us to learn how to attempt to recover his ability to swallow.
If Jeremy is lucky enough, he’ll recover enough to be able to eat again eventually, but this is still uncertain, but we’ll do all we can to help him regain his ability to eat, as not only does it provide more wholesome nutrition, but it’s one of the few pleasures that Jeremy can enjoy in life considering he’s partially paralyzed, in a wheelchair, can’t speak, is in diapers, etc. He loves being at school, listening to good music, hanging out with friends and family, and delicious food...but now food has been taken from him in the way that he enjoys, and it’s really sad.
My wife, Kalina and I are still at the hospital (over 3 weeks now) even though it goes beyond our two weeks at a time with him because Jeremy's mother has a hard time in Hospital environments. When Jeremy was born, all the issues that he had with cerebral palsy caused by his birth injury gave her a lot of emotional pain which gets triggered severely sitting in the hospital. Because she had such a difficult time with that, we continue to stay and care forJeremy at the hospital. Unfortunately, this has caused a severe financial hardship as the expenses of living in the hospital is pretty steep.
Because Jeremy has pulled out his temporary feeding tube 6 times, we sleep in shifts and watch over him constantly. But this means we have to eat the expensive hospital food, and miss out on work. Because the work that we both do is service-based and one-on-one, and because each appointment has to be rescheduled, this means that once we are home and working, we are making up 3+ weeks worth of work. Remember, we also were in the hospital for a week in October, so we were still catching up on a week of appointments, and Jeremy was hospitalized shortly again after. We are now missing 4 weeks of work total while at the hospital and we’ve burned through most of our savings. Because we’ll be catching up on 3 weeks of appointments, this means it’ll be at least that long before we are able to take new appointments, which means we are going to run out of finances before then.
HOW CAN YOU HELP?
We look to our beautiful community of loving people and lightworkers to assist us in our time of need. Although we know this is not the only way to create abundance, for now it is the least resistant way. We are not thrilled to ask a favor of the collective community, but to make sure that we can continue to help keep Jeremy safe and comfortable in our home (we are taking him to our home the remainder of this month too until he is more stable) then we need to be sure we gain back at least what we lost to help us out during these hard times. Jeremy’s insurance isn’t going to cover everything, so we have quite a bit of billing to go over in addition to everything, so we deeply appreciate your support until we’re on our feet again.
We thank all of you for your prayers and contributions, and if you cannot financially contribute and you feel moved to help us, something that you can do that is very easy is to share this on social media. Putting this link on your Facebook wall, on your Facebook pages or your Facebook groups that allow posts such as this could be extremely helpful and positive.
Thank you again, all our love
Rob and Kalina
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