Trying to find words to describe the myriad of emotions that I feel right now is basically impossible. However, I wanted to just explain all that has happened over the last week/month so that it may help someone else in the long run. I have had many people reach out to me who have walked this road already with their child and I am so appreciative and know that I will be taking each of you up on your advice as I know how to seek it. I hope that our journey will also help others in the long run.
Back at the beginning of December I took Sammy to the doctor for a cough he had had for a good month. Doc said his lungs were clear just start him on claritin once a day. We did that, but the cough continued. Then, about a month ago Sammy began wetting the bed. At 5 years old, never even peeing the bed during potty training, my mama mind thought. "What in the world? Are you having nightmares? Has someone hurt you?" Then he began to be thirsty all the time, always wanting water. He would get up about 5 times a night to pee and sneak some water because we would cut him off around 6 p.m. to try to eliminate the all night peeing. Last Thursday he began throwing up. If you live in Ormond, you know that the stomach bug is going around terribly so of course I thought it had hit our house. He laid around all day Friday and seemed to feel better Saturday morning so we spent all morning at the skate park. By Saturday afternoon, he crashed and told me that his tongue hurt. I looked at it and it had blisters all over it. Again, my mama mind starts going through our other 5 kid's diagnosis from the past and thought he must have hand, foot & mouth. He laid around all Sunday and then threw up 3 times during the night. Derrick and I took him to the doctor first thing Monday morning, she opened the door, looked at him and told us he was going straight to the hospital. He was lethargic and had labored breathing. I thought he might have had pneumonia since Jesse had similar symptoms when he had his bouts with it but his diagnosis was a lot more life changing than expected.
When we got to the hospital, they took him straight back to a bed, started him on fluids and began to explain to us that our son has Type 1 Diabetes. He explained that nothing could have been done to prevent this and unlike Type 2 Diabetes, which can be managed and prevented by diet, our son's pancreas would never again produce insulin and he would be insulin dependent for life. He was in a state of Diabetic ketosis acidosis. This is why he was vomiting (his body could no longer process food) and having labored breathing...his body was almost in a state of shock. All of his symptoms, the bed wetting, the continual thirst, the crankiness, the vomiting, the sores on his tongue (dehydration)...all of it caused by this disease. The only thing we haven't figured out is the cough, but suspect that it could just be the way his body reacts to his low immunity. So parents, if you ever see any of these symptoms, don't just assume it's the norm. I'm learning it's better to be safe than sorry and will stop trying to self diagnose. Even his weight loss that had occured over the last couple of weeks I assumed he had finally hit his growth spurt and was "Stretching out." If I would have kept assuming, Sammy would not be here today.
Sammy was in the PICU for 3 days. The amount of love that everyone has shown our family has been amazing. I can honestly say, there was someone visiting us the entire time we were there during visiting hours. Your love and support is definitely seeing us through this difficult time. If fact, there was one point where Derrick looked at me and asked, "Is it crazy that we are not panicking???" I assured him it was all the prayers going up for us and that we were experiencing God's overwhelming peace. So thank you for the many prayers that have been lifted up!
It has been a roller coaster however. He was released yesterday morning and we drove to Orlando to Nemours and spent 8 hours in training on how to live with this disease. We got home last night feeling overwhelmed, exhausted and scared to now be on our own. Our first stress was fixing his first dinner at home, which we had measured out just right, and we gave him the insulin to support the exact amount of food that he was about to eat. Food that he had to begin eating within 15 minutes of his insulin injection. He ate all of his chicken, but just couldn't seem to swallow the food with carbs which is what he received insulin for. We start panicking to try to find something quick and how to measure it out for him to eat. We managed, but it was quite stressful to say the least.
For those who know our Sammy, you know that he is quite remarkable. Everyone tells us that he will be the mayor of Ormond one day. :) He literally walks into any room and acts as though he owns it. He speaks to and acknowledges everyone he walks by. He is very happy go lucky and everyone loves him. Even with all of this going on, he has not complained, not asked, "Why me?", taken his shots like a man...oh wait, better than a man (haha), and has just rolled with the punches. He amazes me. I know he's only 5 and doesn't understand the severity of it all, but there have been no fits thrown. The rest of us family members have not handled it quite as well. We are trying to be strong in front of him, but when we took his last blood sugar of the night and it was extremely high, everyone but Sammy went to bed crying.
I don't understand why God has chosen him to carry this burden, but I do know that God will carry him through it each and every day unless He chooses to heal him...which I know our God can do.
So our new normal, for now, is counting out carbs, measuring portions, pricking fingers, giving shots, and eating on a schedule. I know it could be much worse too.
"Dear brothers and sisters, when trouble of any kind come your way, consider it an opportunity for great joy." James 1:2
Back at the beginning of December I took Sammy to the doctor for a cough he had had for a good month. Doc said his lungs were clear just start him on claritin once a day. We did that, but the cough continued. Then, about a month ago Sammy began wetting the bed. At 5 years old, never even peeing the bed during potty training, my mama mind thought. "What in the world? Are you having nightmares? Has someone hurt you?" Then he began to be thirsty all the time, always wanting water. He would get up about 5 times a night to pee and sneak some water because we would cut him off around 6 p.m. to try to eliminate the all night peeing. Last Thursday he began throwing up. If you live in Ormond, you know that the stomach bug is going around terribly so of course I thought it had hit our house. He laid around all day Friday and seemed to feel better Saturday morning so we spent all morning at the skate park. By Saturday afternoon, he crashed and told me that his tongue hurt. I looked at it and it had blisters all over it. Again, my mama mind starts going through our other 5 kid's diagnosis from the past and thought he must have hand, foot & mouth. He laid around all Sunday and then threw up 3 times during the night. Derrick and I took him to the doctor first thing Monday morning, she opened the door, looked at him and told us he was going straight to the hospital. He was lethargic and had labored breathing. I thought he might have had pneumonia since Jesse had similar symptoms when he had his bouts with it but his diagnosis was a lot more life changing than expected.
When we got to the hospital, they took him straight back to a bed, started him on fluids and began to explain to us that our son has Type 1 Diabetes. He explained that nothing could have been done to prevent this and unlike Type 2 Diabetes, which can be managed and prevented by diet, our son's pancreas would never again produce insulin and he would be insulin dependent for life. He was in a state of Diabetic ketosis acidosis. This is why he was vomiting (his body could no longer process food) and having labored breathing...his body was almost in a state of shock. All of his symptoms, the bed wetting, the continual thirst, the crankiness, the vomiting, the sores on his tongue (dehydration)...all of it caused by this disease. The only thing we haven't figured out is the cough, but suspect that it could just be the way his body reacts to his low immunity. So parents, if you ever see any of these symptoms, don't just assume it's the norm. I'm learning it's better to be safe than sorry and will stop trying to self diagnose. Even his weight loss that had occured over the last couple of weeks I assumed he had finally hit his growth spurt and was "Stretching out." If I would have kept assuming, Sammy would not be here today.
Sammy was in the PICU for 3 days. The amount of love that everyone has shown our family has been amazing. I can honestly say, there was someone visiting us the entire time we were there during visiting hours. Your love and support is definitely seeing us through this difficult time. If fact, there was one point where Derrick looked at me and asked, "Is it crazy that we are not panicking???" I assured him it was all the prayers going up for us and that we were experiencing God's overwhelming peace. So thank you for the many prayers that have been lifted up!
It has been a roller coaster however. He was released yesterday morning and we drove to Orlando to Nemours and spent 8 hours in training on how to live with this disease. We got home last night feeling overwhelmed, exhausted and scared to now be on our own. Our first stress was fixing his first dinner at home, which we had measured out just right, and we gave him the insulin to support the exact amount of food that he was about to eat. Food that he had to begin eating within 15 minutes of his insulin injection. He ate all of his chicken, but just couldn't seem to swallow the food with carbs which is what he received insulin for. We start panicking to try to find something quick and how to measure it out for him to eat. We managed, but it was quite stressful to say the least.
For those who know our Sammy, you know that he is quite remarkable. Everyone tells us that he will be the mayor of Ormond one day. :) He literally walks into any room and acts as though he owns it. He speaks to and acknowledges everyone he walks by. He is very happy go lucky and everyone loves him. Even with all of this going on, he has not complained, not asked, "Why me?", taken his shots like a man...oh wait, better than a man (haha), and has just rolled with the punches. He amazes me. I know he's only 5 and doesn't understand the severity of it all, but there have been no fits thrown. The rest of us family members have not handled it quite as well. We are trying to be strong in front of him, but when we took his last blood sugar of the night and it was extremely high, everyone but Sammy went to bed crying.
I don't understand why God has chosen him to carry this burden, but I do know that God will carry him through it each and every day unless He chooses to heal him...which I know our God can do.
So our new normal, for now, is counting out carbs, measuring portions, pricking fingers, giving shots, and eating on a schedule. I know it could be much worse too.
"Dear brothers and sisters, when trouble of any kind come your way, consider it an opportunity for great joy." James 1:2
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