Wow! This last week has been something else! Tough. Rough. Shocking. And an incredible challenge for my ENTIRE family! I am sure many of you have heard bits and pieces thanks to social media and word of mouth but let’s get the full story out there, shall we?! I will apologize up front for the length. I truly did try to edit myself…..I just wasn’t successful!
We’ll start with Cannon……..
Cannon has been struggling with his tummy for quite a while now. In fact, Mark and I looked over my notebook filled with notes on what goes in his body, what comes out, and his behavior. We found that he was good for exactly one week after his last hospitalization for impaction……and then went downhill again. So, he has been literally feeling like garbage since 4/29. And the severity of his symptoms have been building and building. We went to see his G.I. doctor 3 weeks ago to discuss what to do now that surgery is not an option and to talk over potential reasons why he is in so much pain. His doctor wanted us to start him on prebiotics. Cannon already takes probiotics which help to populate the intestinal tract with “good” bacteria. And prebiotics aid in growing “good” bacteria. So, I purchased some Agave Inulin (a prebiotic) and began adding that into his regular supplementation routine. Well, unfortunately nothing has changed at all. Cannon has been asking you to rub his poor tummy constantly, crashing it into things for relief, having lots of bad behavior (which is not characteristic), screaming A LOT, having extreme anxiety, stimming, and scripting much more, sleeping 1-1 ½ hours less a night and waking for 2-3 hours during the night with lots of gas and diapers. He had also been averaging 7-10 dirty diapers a day!!! Every week during the last 3 weeks, a doctor would tell me it was an intestinal bug and would go away. Two weeks ago, he got sick one morning so we took him to the pediatrician. She ordered an x-ray and it showed he had “moderate stool loading in the ascending, descending, and sigmoid colons.” We figured this meant he was in route to another impaction. But all we can do is wait for him to get totally re-impacted before the hospital will re-admit him for a cleanout. It is and was a helpless feeling but we know we are doing absolutely everything anyone can think of right now. There is just no other method of prevention that we or our doctor know about.
So, when the symptoms were only worse and it was 2 weeks later…….I prayed constantly to God asking Him to help me know when it was the right time to take him to the hospital. I didn’t want to subject him to the stress for no reason. When we were up virtually the entire night Monday night……I took that as my sign. We were so sure that this was it and that he would be admitted, that I packed up all we would need for a few days and set off for the hospital. To make a long story short, we were there most of the day Tuesday and came to find out he was not impacted at all. Mark and I, along with the doctors, were all shocked! He had all the symptoms and behaviors he normally does when that happens. But he wasn’t…….they could do absolutely nothing for him and that was that. His G.I. doctor was called and he wanted to see us first thing the next morning. At that appointment, he told us he feels we are doing everything possible with medication for his gut and that the problem has to be the reflux issue in his esophagus and the fact that he is swallowing too much air. Which is sending his sensory system into overstimulation mode and causing the crazy behavior. Cannon currently takes a solutab of one reflux med when he first wakes up and 2 ml’s of a liquid suspension med at bedtime. He decided to double the latter. However, that hasn’t worked either so we will now add an additional solutab before dinner. He is hopeful that things will significantly improve once we find the right balance of medication. We sure hope so, too! We also spoke with his pediatrician in regards to the results of his mulit-day EEG. It was abnormal again but with no clinical seizure activity. The abnormalities mostly reside in the parietal lobe of his brain. Which affects behavior. So I am sure this will be a hot topic of discussion when we see his Psychiatrist in a week. More medication potentially to come and balance out.
Anyways…..when we went to bed Wednesday night, we had no idea what was about to happen the next day!
On Thursday morning at around 5:30, my husband and I heard a series of 5 coughs over the monitor coming from the boy’s room. Mark jumped right up to go get what we thought was Cannon. I remember thinking to myself that the cough sounded funny. Deeper, less controlled, and just plain different from the average cough. I also remember thinking that Mark shouldn’t be going in there yet. They weren’t talking and didn’t sound like they were awake. But it was my birthday, and because he is so wonderful, he was going to get the kids up and let me sleep. He says when he entered the room, he was surprised to see Cannon sleeping. When he looked over at Townsend he recalls that he appeared to be shivering. When he got closer, he noticed that he had soaked his sleeper. His diaper had leaked and he thought the shivering was because he was cold. He picked him up in the dark and took him to the bathroom. When he stood him up to remove his sleeper, he noticed how limp he was. He had to hold him up to do this. He turned on the light and immediately saw we had a problem. He changed his diaper super fast and came running in to me. Mark said Townsend wasn’t talking, wasn’t looking at him, or responding in any way. I grabbed my baby and he was completely and totally limp. His neck was hanging back unsupported by his body. His breathing was extremely shallow. And his eyes were fixated to the left. He coughed a couple more times and it seemed that he really needed to vomit. So, Mark grabbed a small wastebasket and I held him over it, applying pressure to his back. Nothing. It was like he didn’t have the energy to get it out. When he would stop, I would turn him back over and try to get him to interact in any way. For 15 minutes, we did this and there was no change. With no Urgent Care nearby open for at least an hour, we knew we had to call 911. I looked at Mark and said, “Is this really happening?” I had never dialed this number before. They answered immediately and dispatched a truck. Mark ran outside to the street with Townsend still in nothing but a diaper. I called to him that we needed to grab a blanket or some clothes. He said he thought the chill in the air might shock him into responding. I agreed. The ambulance arrived within 5 minutes and they took Townsend from me. They said immediately that he was presenting as having had a seizure and we needed to get him to the hospital quickly. Poor Mark! He had to run inside and get Cannon, clothes, his special food, medicines, diapers, …….everything……..and we had to go on. He was so scared and it killed me to leave him. The driver told me I could not ride in the back with Townsend. I had to ride in the front with her. I hated this idea but had no choice. We had a long drive to the nearest hospital and we needed to get going. So, I got in the front, kissed Mark and Cannon, and we were off. The driver and 2 other paramedics were amazing! They were very kind, gentle, and knowledgeable. I called my parents and took to my Facebook family for our urgent prayer need because I had to be doing something. Halfway through the 25 minute ride, Townsend began to seize again. I was so upset to be so far away from him! I just wanted to kiss him, to hold his hand, to tell him he would be okay. But I couldn’t. I felt so helpless! The paramedics hollered up to me that he was indeed having another seizure and that they needed to give him medicine to stop it. We didn’t know how the medicine could affect him but we had to do it. So, they administered Valium and after several minutes, I saw him start to protest to all the tubes and wires. The paramedics said this was a good sign and I breathed a slight sigh of relief. When we arrived at the hospital, he was totally groggy and not himself. They brought him in and a team of nurses and a couple doctors began assessing him. They reiterated all that the paramedics had said and told me they wanted to get a CT scan, chest x-ray, and labs immediately to see if they could figure out what caused the seizures. The labs were first, then the CT, quickly followed up by the chest x-ray. Then we came back to the E.R. and waited. Most of this time, Townsend just slept. Mark arrived during the tests but Cannon struggled mightily . He does not like the E.R. So, we took turns taking him back and forth to the playroom. But, he was so anxious that we had to start thinking of alternatives fairly immediately. I called a babysitter of ours who said she could watch him at our house in a few hours. We were crazy thankful! And my parents, upon hearing the news, jumped on a plane and headed out here. A friend picked them up and brought them to our house to relieve the sitter later that night. We are so blessed!
The CT came back quickly and looked good. The labs trickled in but were tough to get a hold of due to the hospital computers being down for software updates. They told us soon after we got there, that they would be admitting him to the hospital for observations and an EEG. After a couple of hours, he was transported upstairs. By this time, he was coherent and not happy with his location. He cried and whined. They had 2 IV’s set up, one in each arm, and this was not good because Townsend is a thumb sucker. With his arm boarded and therefore without his left thumb, he was not able to self soothe and he struggled. About an hour after admission, we were transported to the EEG lab and hooked up. He didn’t make it easy on the tech but after seeing Cannon go through 3 of these, I would say he did really good. They like for the child to fall asleep during the 30 minutes they are monitored for. I was disappointed that Townsend was not able to settle down and do this. Because the seizure had occurred in or just after waking up from sleep…..I wanted to see that happen. But it didn’t.
It took most of the evening to hear back from all the tests and for the neurologist to stop by. It just so happened to be the neurologist who had monitored Cannon through his last hospital stay. So, that was nice. He reported to us that all the tests had come back within normal range. What a relief! I wanted to hit my knees and thank God right then and there but I settled for a quick shout out and focused back on what the doctor was saying. He told us that 10% of children will have one seizure in their lifetime and never again. Of course, with Cannon’s history, it puts Townsend at a higher risk. He said that if it is going to happen again, that it will probably happen in the next 3-6 months and we should watch him most closely when he is over -tired and sick. The doctor then presented us with our options. We could put him on a seizure medication just in case or we could get a rescue medication. We opted for the latter. You guys may remember that Cannon’s seizure medication was quite possibly making his constipation issue worse. That is why we got him off of it. And Townsend already has to take a daily laxative to keep things moving. We do not need him to start having more serious and similar problems to Cannon’s. So, we decided to get the rescue medication. It is basically 2 syringes in a box that I will carry everywhere. If he has another seizure, I can administer it and stop the seizure. We feel good about our choice and are hopeful that I will possess both of those full syringes for a long time. And never ever have to use them.
We stayed overnight in the hospital so they could keep an eye on him and make sure he went to sleep and woke up okay. He did and was totally back to his bubbly, playful, talkative self the next day. After obtaining the rescue medication from the hospital pharmacy, we came home the next afternoon.
I can’t tell you how scary this experience was for us! For many reasons. First of all, it was TOWNSEND…..not Cannon! Our healthy child! The one we didn’t have to worry about! What a shock! Secondly, it is hard for me to think about what could have happened if Mark hadn’t been home. I would not have gone in there at the point he did. Unless there had been more gagging or some talking. It scares me to death to think what could have been. Even though I shouldn’t be thinking about that at all. There is one other memory that strikes me looking back on this experience. When Mark first put Townsend in my arms and I realized this was not good. My very first thought was that we had lost him ……. Just like we lost Cannon fairly suddenly. It was an awful feeling! I must say though that I am also so thankful to my Lord for the unusual calm that came over me while all this was happening with Townsend this week. I am normally an anxious mess under pressure. But this time, I was cool and mostly under control.
My friends, today we are rejoicing!!!!!! Townsend is totally back to normal! And there is a chance that this will not happen to him again! We will, however, be vigilantly watching for a while. We installed a video monitor over his bed and watch him very closely when he is napping and sleeping. And I am sleeping in the boy’s room for now. The neurologist said that he realized we would have some PTSD for a while because of all we’ve been through and he thought we needed to do whatever we needed to do to stay sane. We agree!
So, now we wait, pray, hope, and pray some more……that he is in that 10%! The kiddos who have one seizure in their lifetime and that is it! Only time will tell! THANK YOU FRIENDS! FROM THE BOTTOM OF OUR INCREDIBLY THANKFUL HEARTS! For all the prayes, well wishes, kind words, and encouragement! You helped get us through this awful week! We are so very very grateful!
I sign off today by leaving you with a beautiful song and just a great verse. The song reminds me to “be still” and trust my Creator because He is in control, He loves me, and He is always with me, no matter what life is throwing my way. Since we brought Townsend home, I have stayed busy and relatively strong despite my exhaustion and new set of stressors. But today, I had some time alone to think and found myself having a bit of a pity party. Hearing this song helped me to remember that I don’t have to have it all together……..I just have to wait patiently and trust that God can and will give me some peace and put me back together…….in His time, in His way, for His glory. (Please have a listen!) It is called “Be Still” by Kari Jobe!
And finally, I love this verse because…… it lends strength to my weary mind and heart. It is one that reminds me where my priorities and focus must remain. And it is one that gives me hope….not just for this life but for what is to come. God bless ya’ll!
“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all so we fix our eyes on not what is seen, but what is unseen. For what is seen is temporary, but what is unseen is eternal.” …….2 Corinthians 4:16-18