The other morning, I was rudely awakened by the sound of an extremely loud crack of lightening, followed immediately by booming thunder. I jumped up so fast I nearly fell out of bed.It was pouring down rain, so hard that it was difficult to see across to the other side of our street. My thoughts immediately went to the Oklahomans and what it must have been like for them as they rode out the 40 minute massive tornado that caused so much destruction and heartache. I began praying peace into the storm; Jesus did this, and he said we would do even greater things than he did...so I take him at his word regarding storms. It did quiet down and I went back to sleep for a while longer.
The last six months have been storm season at our house. It was a long, cold winter, and it was also full of sickness. It all started on November 5th..........
Just a typical day, kids, busyness, family over for dinner together. Adam had been pacing and then went into his room and we heard a THUMP. As we went running for his room, he started yelling; he fell down, was hurt and he was sitting in the middle of his floor. That isn't unusual, he usually can't get up when he falls. I checked him over and couldn't see anything bruised or bleeding, and so I tried to help him rise, but he was now crying from the pain and refused to bear any weight on his left foot. Adam never cries. I lifted him, encouraging him to put his right leg down, and was able to get him onto his bed. Now his knee was beginning to swell, but no bruising. I got him into his wheelchair and applied cool compresses as much as he would allow, and gave him some acetaminophen. He continued to be uncomfortable, and would not stand. I took off his shoes and braces and let him rest. He slept o.k. that night. It was Friday and I waited to take him to his orthopedic on Monday. (No way we were going to the E.R. Not worth it unless Adam is in a dangerous state of shunt malfunction or a much worse level of accident. Too much to go into here.) X-rays showed no fracture, and it was determined to be a bone contusion. He'd get better. We went to the orthotist for a splint. That turned out to be much worse than rest alone, so after multiple tries and adjustments on our part over the next few days, we abandoned the splint for rest alone.
To make a long story much shorter, Adam did not improve. We took him to his physiatrist (that's a doctor who specializes in rehab) for an eval for physical therapy after a repeat visit to his orthopedic who retook x-rays and said it's still the same and doesn't show any sign of fracture; go for physical therapy to strengthen the quads and better support the knee joint. The physiatrist had her orthopedic take a look at him and he said he thought he tore some ligaments. But he doesn't know Adam and actually, we left his practice many years ago as he was negligent in Adam's care. But the physiatrist said "No P.T. Let him rest and go back to the orthodoc in a few weeks."
Two months later, Adam still was not better. We returned to the orthodoc and still nothing in the x-rays, but he suspected a stress fracture and ordered an MRI, which the insurance company approved. Diagnosis: stress fracture and bone contusion:left tibia. no sign of healing. Physical therapy prescribed and also calcitonin nasal spray which is supposed to help the body drive calcium to the bones for healing.
In between all this, in January, Adam had a G.I. bleed. This required a visit to the gastroenterologist and an endoscopy. Diagnosis: ulcer. Not his first bleed, but first time where an ulcer was actually seen. sigh.
Doesn't seem like I even shortened this does it?
Over this winter, he also had the flu, three colds and a stomach virus.
On April 21st, Adam had a violent headache. I sat with him for a long time at bedtime, and he went to sleep and slept fitfully that night, He woke up coughing and calling for help; I ran to his room expecting a G.I. bleed, because that's what happens when he has one, but he vomited normally and then laid back down and said,"I feel so sick." and turned his face to the wall. He was white as a sheet. He also wet himself and began twitching; a probable seizure. I took care of him, called all family members who were needed for differing reasons, and took him to the E.R. Suspected shunt malfunction. He had c.t.scans, x-rays, blood work and blood cultures, urinalysis and and EEG. The only thing that showed up was a urinary tract infection. All scans were approximately the same as his last series had been. Adam was hospitalized for the UTI and we spent a total of three days in Stonybrook University Medial Center, with tests, i.v. meds and fluids and then oral antibiotics for ten days. Adam's neurosurgeon still was suspecting a shunt malfunction, but because of the UTI, he couldn't operate; too much risk of infection spreading. Home again, home again, jiggety jog.
Wow, what a long season, you say? It wasn't done pouring over here. Our service coordinator suddenly up and quit her job. In the interim to assigning us a new one, the agency sent a temporary agent. He took all this information and the next thing I knew I got paperwork that appeared to be accusing me of abusing Adam. I called the head of services and got the answering machine. I left a message saying that if I didn't hear from her first thing in the morning, they would be hearing from my lawyer. She called at 8:30 the following morning and wanted me to please explain to her and read to her what was so upsetting about the paperwork. I did, and she was all apologies. I wasn't being accused at all, and consequently, the form has been permanently changed. No other parent will get that scary letter, unless they're truly being investigated.
I was messing around with one of the big boys at church in early May. I went to grab the back of his shirt, and he zigged when I zagged; I broke the ring finger on my right hand, just above the first knuckle. It looked like a blue and purple sausage for two weeks. It's still healing. ( Adam's orthodoc x -rayed it for me when he went for a recheck of his leg. Five months later and the x-ray still did not show new bone in the tibia, but he's walking so he made progress. Go back for more p.t.)
I went to Pennsylvania for my niece's bridal shower in May. I drove for five hours, had a great time for a few hours, and drove home again. Too much going on to take a chance of staying over. Good thing I listened to the voice inside that always guides me; I drove four hours and got home at four a.m., and an hour and a half later, Adam woke up and vomited blood all over himself and his bed. I contacted his gastroenterologist and was advised that everything I had done was right and we could stay home as long as he didn't have any episodes of bright red blood in the vomit. He didn't throw up again.
A new service coordinator was assigned for Adam. We really like her. She's helping us look for a day program for Adam. She wanted to hear the whole saga of the last few months. She was in awe. She's probably still shaking her head in disbelief.
Now it's June; the weather is getting so nice, there are lots of songbirds in the yard; we all enjoy hearing them. Adam's neurosurgeon feels the best thing for Adam is to leave him alone. Unless there's another episode, he doesn't need to see him for a year. Over his lifetime, Adam has had twenty shunt surgeries and an appendectomy. He doesn't do well with surgery and anesthesia anymore, and it is risky to send him to the o.r. ....but that's another story.
So I thank God we have weathered this stormy season, and that he was with us every step of the way. I know there is better ahead of us than what's gone behind us. Even in our dark times, God is always good. His love carries us through all of this; I couldn't ever make it without him.
The last six months have been storm season at our house. It was a long, cold winter, and it was also full of sickness. It all started on November 5th..........
Just a typical day, kids, busyness, family over for dinner together. Adam had been pacing and then went into his room and we heard a THUMP. As we went running for his room, he started yelling; he fell down, was hurt and he was sitting in the middle of his floor. That isn't unusual, he usually can't get up when he falls. I checked him over and couldn't see anything bruised or bleeding, and so I tried to help him rise, but he was now crying from the pain and refused to bear any weight on his left foot. Adam never cries. I lifted him, encouraging him to put his right leg down, and was able to get him onto his bed. Now his knee was beginning to swell, but no bruising. I got him into his wheelchair and applied cool compresses as much as he would allow, and gave him some acetaminophen. He continued to be uncomfortable, and would not stand. I took off his shoes and braces and let him rest. He slept o.k. that night. It was Friday and I waited to take him to his orthopedic on Monday. (No way we were going to the E.R. Not worth it unless Adam is in a dangerous state of shunt malfunction or a much worse level of accident. Too much to go into here.) X-rays showed no fracture, and it was determined to be a bone contusion. He'd get better. We went to the orthotist for a splint. That turned out to be much worse than rest alone, so after multiple tries and adjustments on our part over the next few days, we abandoned the splint for rest alone.
To make a long story much shorter, Adam did not improve. We took him to his physiatrist (that's a doctor who specializes in rehab) for an eval for physical therapy after a repeat visit to his orthopedic who retook x-rays and said it's still the same and doesn't show any sign of fracture; go for physical therapy to strengthen the quads and better support the knee joint. The physiatrist had her orthopedic take a look at him and he said he thought he tore some ligaments. But he doesn't know Adam and actually, we left his practice many years ago as he was negligent in Adam's care. But the physiatrist said "No P.T. Let him rest and go back to the orthodoc in a few weeks."
Two months later, Adam still was not better. We returned to the orthodoc and still nothing in the x-rays, but he suspected a stress fracture and ordered an MRI, which the insurance company approved. Diagnosis: stress fracture and bone contusion:left tibia. no sign of healing. Physical therapy prescribed and also calcitonin nasal spray which is supposed to help the body drive calcium to the bones for healing.
In between all this, in January, Adam had a G.I. bleed. This required a visit to the gastroenterologist and an endoscopy. Diagnosis: ulcer. Not his first bleed, but first time where an ulcer was actually seen. sigh.
Doesn't seem like I even shortened this does it?
Over this winter, he also had the flu, three colds and a stomach virus.
On April 21st, Adam had a violent headache. I sat with him for a long time at bedtime, and he went to sleep and slept fitfully that night, He woke up coughing and calling for help; I ran to his room expecting a G.I. bleed, because that's what happens when he has one, but he vomited normally and then laid back down and said,"I feel so sick." and turned his face to the wall. He was white as a sheet. He also wet himself and began twitching; a probable seizure. I took care of him, called all family members who were needed for differing reasons, and took him to the E.R. Suspected shunt malfunction. He had c.t.scans, x-rays, blood work and blood cultures, urinalysis and and EEG. The only thing that showed up was a urinary tract infection. All scans were approximately the same as his last series had been. Adam was hospitalized for the UTI and we spent a total of three days in Stonybrook University Medial Center, with tests, i.v. meds and fluids and then oral antibiotics for ten days. Adam's neurosurgeon still was suspecting a shunt malfunction, but because of the UTI, he couldn't operate; too much risk of infection spreading. Home again, home again, jiggety jog.
Wow, what a long season, you say? It wasn't done pouring over here. Our service coordinator suddenly up and quit her job. In the interim to assigning us a new one, the agency sent a temporary agent. He took all this information and the next thing I knew I got paperwork that appeared to be accusing me of abusing Adam. I called the head of services and got the answering machine. I left a message saying that if I didn't hear from her first thing in the morning, they would be hearing from my lawyer. She called at 8:30 the following morning and wanted me to please explain to her and read to her what was so upsetting about the paperwork. I did, and she was all apologies. I wasn't being accused at all, and consequently, the form has been permanently changed. No other parent will get that scary letter, unless they're truly being investigated.
I was messing around with one of the big boys at church in early May. I went to grab the back of his shirt, and he zigged when I zagged; I broke the ring finger on my right hand, just above the first knuckle. It looked like a blue and purple sausage for two weeks. It's still healing. ( Adam's orthodoc x -rayed it for me when he went for a recheck of his leg. Five months later and the x-ray still did not show new bone in the tibia, but he's walking so he made progress. Go back for more p.t.)
I went to Pennsylvania for my niece's bridal shower in May. I drove for five hours, had a great time for a few hours, and drove home again. Too much going on to take a chance of staying over. Good thing I listened to the voice inside that always guides me; I drove four hours and got home at four a.m., and an hour and a half later, Adam woke up and vomited blood all over himself and his bed. I contacted his gastroenterologist and was advised that everything I had done was right and we could stay home as long as he didn't have any episodes of bright red blood in the vomit. He didn't throw up again.
A new service coordinator was assigned for Adam. We really like her. She's helping us look for a day program for Adam. She wanted to hear the whole saga of the last few months. She was in awe. She's probably still shaking her head in disbelief.
Now it's June; the weather is getting so nice, there are lots of songbirds in the yard; we all enjoy hearing them. Adam's neurosurgeon feels the best thing for Adam is to leave him alone. Unless there's another episode, he doesn't need to see him for a year. Over his lifetime, Adam has had twenty shunt surgeries and an appendectomy. He doesn't do well with surgery and anesthesia anymore, and it is risky to send him to the o.r. ....but that's another story.
So I thank God we have weathered this stormy season, and that he was with us every step of the way. I know there is better ahead of us than what's gone behind us. Even in our dark times, God is always good. His love carries us through all of this; I couldn't ever make it without him.
