In Luke's follow-up appointment, 8 months after his Chiari Decompression surgery, Dr. Mark R. Iantasco's first words to us were "I've seen the images and you will be pleased." The images he was referring to, of course, were the MRI images of Luke's neck and upper spine. What he displayed was the decompression of Luke's lower brain that was still in tact...meaning the space that he created was still allowing good flow of spinal fluid between brain and spinal chord. Even more exciting was the cyst inside his spinal chord was 95% dissipated.
We exhaled with relief and expressed our gratitude...
"Luke" I said...
"Do you remember this gentleman?"
Luke spied him for a moment then shook his head in affirmation
"He's the one that saved your life!"
What does one say when there is not enough to say?? We kept expressing our thanks and he said we wouldn't need an MRI every six months. We didn't even need it for a few years. Rhonda and I were extremely worried about putting Luke through MRIs twice a year. In the MRI today, he almost set the record for NOT waking out of anesthesia. I told the nurses that wasn't the record I wanted to see set. They removed his IVs so he wouldn't see them when he woke up. But when his heart rate kept dropping into the hi 40s and lo 50s and he was in such a deep sleep that he wouldn't wake up, they put the IV back in. Was it scary? Yes, a little ...when they start saying this isn't normal, you can't help to start thinking of those exceptions. Thankfully, no record was set by Luke this day!
Next appointment is in 1 year!
Thursday, March 26, 2009
Tuesday, August 19, 2008
Luke gets a big OK from the surgeon
Luke's appointment today was totally positive. The neurosurgeon told him he could go back to doing whatever he wanted. He has been riding his bicycle but now he can do other things like run, play soccer and baseball, and jump on his brothers! You may find mom and dad still overly cautious but any parent would do the same.
What wonderful news from Hershey! Following his appointment, Luke was treated with a day at Hershey Park riding, laughing, and probably doing the other thing he loves...eating! I hope he understands it was all worth it!
Luke won his first battle! There will be future battles for him but I feel he's equipped to beat anything that's thrown at him. What will his MRI show in Jan? Will his scoliosis get worse?! These are unanswered questions but for now there is plenty to celebrate! Good Luck Luke!
What wonderful news from Hershey! Following his appointment, Luke was treated with a day at Hershey Park riding, laughing, and probably doing the other thing he loves...eating! I hope he understands it was all worth it!
Luke won his first battle! There will be future battles for him but I feel he's equipped to beat anything that's thrown at him. What will his MRI show in Jan? Will his scoliosis get worse?! These are unanswered questions but for now there is plenty to celebrate! Good Luck Luke!
Monday, August 18, 2008
Luke continues healing during weeks 3 and 4
Luke has really been doing well the last 2 weeks. His incision is healing well and he is done taking the steroid medication that was controlling his brain swelling. He is slowing working his way back to normal. There are some days where he has headaches and yesterday was a day where he vomited at least 10 times throughout the day. This was obviously worrisome because he couldn't eat anything the entire day without throwing it all up and we thought this was another set back. However, he bounced back the next day with none of those symptoms.
Luke is a truly remarkable kid how he takes these things and shrugs it off. A 5 year old that can manage his way to the toilet, vomit for 5 minutes, wipe himself off and walk back to finish watching his cartoons like nothing ever happenened.
As he heals, we've noticed a change in his behavior and patience. He will spend hours now using his mind rather than his body by building lego models reading directions and building objects completely by himself. I witnessed him spend 2.5 hours non-stop building a 450-piece Lego Star Wars X-wing fighter. The first 60 min was entirely Luke reading the visual instructions, finding the correct piece out of 400+ pieces and placing it in exactly the right spot. His favorite helper is our neighbor Julie Mills.
Luke is a truly remarkable kid how he takes these things and shrugs it off. A 5 year old that can manage his way to the toilet, vomit for 5 minutes, wipe himself off and walk back to finish watching his cartoons like nothing ever happenened.
As he heals, we've noticed a change in his behavior and patience. He will spend hours now using his mind rather than his body by building lego models reading directions and building objects completely by himself. I witnessed him spend 2.5 hours non-stop building a 450-piece Lego Star Wars X-wing fighter. The first 60 min was entirely Luke reading the visual instructions, finding the correct piece out of 400+ pieces and placing it in exactly the right spot. His favorite helper is our neighbor Julie Mills.
Monday, August 4, 2008
Week 2 : Recovery still going relatively well despite setbacks
Luke's recovery seems to be like his disorders, no symptoms but problems still exist. He really responds well to the steroids, when he is on them. Unfortunately, every time we reduce his steroids he has episodes with his head hurting like "somebody is sticking a knife in it". This is what happened last week when we had to take him back to Hershey. It appears he gets swelling in his brain when not taking the steroid. Yesterday was to be his last dosage however we had to put him back on it last night and we continue to have him take steroids today. He's not vomiting anymore however, due to the steroids, he has gained his weight back and then some. He's probably 6 or 8 lbs over his pre-surgery weight...maybe more. He eats like a horse. I'm told this will go away once he's off steroids but it could take several weeks or months. So, Luke Skywalker is not out of the preverbial galaxy yet.
I tend to think this is how it's going to be for quite some time...maybe months. I really hope he does not have to take these steroids for a long time. There are obviously ugly side effects, one of which is a reduced immune system, and we are getting very close to cold season. I pray he does not end up having continuous headaches either. This is another worry of mine, albeit unfounded at this point.
His spirits are definitely up. Today our neighbor, Julie, and I helped Luke build a 400+ piece lego X-Fighter toy. It took 2.5 hours and he shows us there is no limit on his critical analysis and thinking skills. He spent at least 45 min of focused time reading directions and putting each piece of his model together, even questioning the work done by Julie and I. He is showing us he loves to build things. We also notice his motor skills are intact as he puts the tiniest pieces in his model fighter plane. He really loves to build things and that's a joy to see.
We continue to receive great support and well wishes from everyone and it greatly helps us to deal with these continuing problems.
I tend to think this is how it's going to be for quite some time...maybe months. I really hope he does not have to take these steroids for a long time. There are obviously ugly side effects, one of which is a reduced immune system, and we are getting very close to cold season. I pray he does not end up having continuous headaches either. This is another worry of mine, albeit unfounded at this point.
His spirits are definitely up. Today our neighbor, Julie, and I helped Luke build a 400+ piece lego X-Fighter toy. It took 2.5 hours and he shows us there is no limit on his critical analysis and thinking skills. He spent at least 45 min of focused time reading directions and putting each piece of his model together, even questioning the work done by Julie and I. He is showing us he loves to build things. We also notice his motor skills are intact as he puts the tiniest pieces in his model fighter plane. He really loves to build things and that's a joy to see.
We continue to receive great support and well wishes from everyone and it greatly helps us to deal with these continuing problems.
Friday, July 25, 2008
Week 1 Post-Op still a struggle
Luke's first week after the surgery has been full of ups and downs. He vomits almost daily and I worry about his significant weight loss...a whopping 4lbs in 6 days. That's like me dropping from 175lbs to 160lbs in less than a week. He has lost alot of muscle and his skeletal frame is starting to show. By Monday, he ended his medication for brain swelling and nausea; all we had for his pain now was Tylenol.
Wednesday he took a downturn and struggled with the headaches and vomiting. It became so bad we thought it was time to take him to the ER. We loaded him up in the van and he immediately fell asleep. I persuaded Rhonda that if he woke up feeling ok then we shouldn't take him in, so we waited. Once he awoke he seemed to be fine, no headaches...although he continued to vomit constantly. We did not go to the Emergency Room that day. However, Thursday things got worse. At 3:00am he awoke with a headache and vomit. By 6:00am it was time to take him to the Hospital.
Thurs 7:00am
Lukey arrived at the Altoona Hospital ER by 7:00am...still in great pain. Tylenol no longer at any impact. Within an hour, they gave him a painkiller but it had no effect either. Maybe it was called fenofeterol...although I know that wasn't the name...I have no idea, but it sounded like some russian hockey player to me. :) The analogy used was that if morphine was like Pepsi, this first painkiller was like Diet Pepsi. Next, they gave him 1mg of morphine. Again, no effect. Things even seemed to get worse as every minute he would grab his head and cry out loud. Finally, they doubled the morphine and it pretty much knocked him out. After days of headaches and pain he at last had some peace.
The ER doctor ordered a CAT scan that turned out very positive. Absolutely no swelling...at least no swelling significant enough to appear on a CAT scan. This was good news although it begged the question..."Where was all this pain coming from". The ER doctor called the Hershey neurosurgeons who operated on Luke. They assured us there was nothing major happening to Luke based on the scan but he was probably dealing with some swelling around his brain where they operated. They told us because children have large brains relative to their skull that even the smallest amount of swelling feels massive to them. This was explained as something that could happen after coming off the steroid medication that was controlling the swelling. This, coupled with the fact that the swelling was probably occuring in the area of the brain that controls nausea, would explain the increase in vomiting. The Altoona Dr recommended transport to Hershey within the hour so he could be admitted and treated in Hershey. We were fine with this decision. By 11:00, they loaded Luke into an ambulance...we decided Rhonda would take the ride with him since she would be best able to answer any questions about his condition. I tried to persuade the doctor that 2 hours was too long and a 40 min heli-flight would've been better. :) No Dice!
Thurs 1:30p
Rhonda and Luke arrived at Hershey and got a suite on the 7th floor. It was a single bed with his own shower and bathroom. They hooked him up with a fluid IV and continued hydrating him. It wasn't long before they started him back on his previous medication...steroids for swelling and some other medication for nausea.
Nancy Newlin, our neighbor and church family friend, was kind enough to drive down and stay with Rhonda through the night. She was able to give Rhonda breaks for eating, resting and showering. I stayed home with the kids and my mother who continues to spend her every breath helping us.
On Friday, he was still not well enough to go home. His appetite did increase and this was a good thing however when he was given his pills he would vomit everything up. Rhonda says this is a mental barrier and not a physical one.
Friday, 8pm
Nancy headed home and Uncle Mark came to the hospital dressed as DARTH VADER. Yep, Lord Vader did something unthinkable to the rest of the world...he visited Luke Skywalker at Hershey Medical Center and they battled in the children's room playing a few games of air hockey. Granny got a Pix message on her cell and it was Darth with lil' Luke.
We expect he will come home tomorrow. Rob Mock called and offered to go along with me on the ride to keep us company so we hope to get over and back by about 2pm. Luke still needs prayers but needs to learn to be patient and take his meds calmly so he doesn't vomit his food away. The only other issue is the fluid in the back of his head that has built up over the past week. The neurosurgeons are concerned but we have an appt Tues in Hershey again with the primary surgeon and hope to get an answer on that day.
We continue to be thankful for the overwhelming support we get from the Spring Cove Community!
Wednesday he took a downturn and struggled with the headaches and vomiting. It became so bad we thought it was time to take him to the ER. We loaded him up in the van and he immediately fell asleep. I persuaded Rhonda that if he woke up feeling ok then we shouldn't take him in, so we waited. Once he awoke he seemed to be fine, no headaches...although he continued to vomit constantly. We did not go to the Emergency Room that day. However, Thursday things got worse. At 3:00am he awoke with a headache and vomit. By 6:00am it was time to take him to the Hospital.
Thurs 7:00am
Lukey arrived at the Altoona Hospital ER by 7:00am...still in great pain. Tylenol no longer at any impact. Within an hour, they gave him a painkiller but it had no effect either. Maybe it was called fenofeterol...although I know that wasn't the name...I have no idea, but it sounded like some russian hockey player to me. :) The analogy used was that if morphine was like Pepsi, this first painkiller was like Diet Pepsi. Next, they gave him 1mg of morphine. Again, no effect. Things even seemed to get worse as every minute he would grab his head and cry out loud. Finally, they doubled the morphine and it pretty much knocked him out. After days of headaches and pain he at last had some peace.
The ER doctor ordered a CAT scan that turned out very positive. Absolutely no swelling...at least no swelling significant enough to appear on a CAT scan. This was good news although it begged the question..."Where was all this pain coming from". The ER doctor called the Hershey neurosurgeons who operated on Luke. They assured us there was nothing major happening to Luke based on the scan but he was probably dealing with some swelling around his brain where they operated. They told us because children have large brains relative to their skull that even the smallest amount of swelling feels massive to them. This was explained as something that could happen after coming off the steroid medication that was controlling the swelling. This, coupled with the fact that the swelling was probably occuring in the area of the brain that controls nausea, would explain the increase in vomiting. The Altoona Dr recommended transport to Hershey within the hour so he could be admitted and treated in Hershey. We were fine with this decision. By 11:00, they loaded Luke into an ambulance...we decided Rhonda would take the ride with him since she would be best able to answer any questions about his condition. I tried to persuade the doctor that 2 hours was too long and a 40 min heli-flight would've been better. :) No Dice!
Thurs 1:30p
Rhonda and Luke arrived at Hershey and got a suite on the 7th floor. It was a single bed with his own shower and bathroom. They hooked him up with a fluid IV and continued hydrating him. It wasn't long before they started him back on his previous medication...steroids for swelling and some other medication for nausea.
Nancy Newlin, our neighbor and church family friend, was kind enough to drive down and stay with Rhonda through the night. She was able to give Rhonda breaks for eating, resting and showering. I stayed home with the kids and my mother who continues to spend her every breath helping us.
On Friday, he was still not well enough to go home. His appetite did increase and this was a good thing however when he was given his pills he would vomit everything up. Rhonda says this is a mental barrier and not a physical one.
Friday, 8pm
Nancy headed home and Uncle Mark came to the hospital dressed as DARTH VADER. Yep, Lord Vader did something unthinkable to the rest of the world...he visited Luke Skywalker at Hershey Medical Center and they battled in the children's room playing a few games of air hockey. Granny got a Pix message on her cell and it was Darth with lil' Luke.
We expect he will come home tomorrow. Rob Mock called and offered to go along with me on the ride to keep us company so we hope to get over and back by about 2pm. Luke still needs prayers but needs to learn to be patient and take his meds calmly so he doesn't vomit his food away. The only other issue is the fluid in the back of his head that has built up over the past week. The neurosurgeons are concerned but we have an appt Tues in Hershey again with the primary surgeon and hope to get an answer on that day.
We continue to be thankful for the overwhelming support we get from the Spring Cove Community!
Sunday, July 20, 2008
Slowly getting better
Today, was a very good day for Luke. He had a bit more energy and vomited only once, just now as I was typing. We did not have to take him to Hershey! (Yeessssss!) Rhonda spoke with the neurosurgeon there first thing this morning and he said many of those symptoms last night were relatively normal after the surgery. They were in the area of the brain that controls nausea and so having agitated that area, Luke can expect nausea for up to 2 weeks. The low heart rate was not an issue if we could awake him from a sleep and he is alert fairly quickly. If it was difficult to wake him up then that could be a bad sign. We had no trouble waking him to take his meds.
Here are some pics from the last few days, as you will see, he's not smiling in too many of them:
Here are some pics from the last few days, as you will see, he's not smiling in too many of them:
Saturday, July 19, 2008
Potential complications...
After last evening, Luke seemed like he was doing well. Today, however, was a different story. He seemed to get weaker as the day went on and he seemed to have less energy and slept most of the day. Rhonda took Luke's heart rate and it was about 60bpms every time she took it; she struggle to even find a heart rate. The third symptom was nausia and vomiting. Although he did eat this morning, he vomited his 3:00p spaghettio meal and at 8:00p he threw up the little bit of drink he was given. Tiredness, low heart rate, vomiting and fluid in the back of his head due to the surgery are all signs of hydrocephalus. She called the Hershey Neurosurgeon; he mentioned there was a good chance of this at first and recommended taking him to the local emergency room. After more discussion, he wanted Rhonda to monitor Luke through the night and take him back to Hershey tomorrow morning. Obviously, this is very upsetting for both Rhonda and me and Luke does NOT want to return back to the hospital.
At 10:30, Rhonda called our neighbors, Brett and Jennifer, both of which are Emergency Room Nurses and both have years of experience in the Intensive Care Unit at Nason and Altoona respectively. I've always liked our neighborhood because of the health care pros we have...especially the ER-types. Rhonda wanted them to double check Luke's heart rate which seemed to get lower and lower...57...54. We woke Luke up to get him aroused and take his medicine and get his heart active. His heart rate jumped to 107 bpm. This was good. It was interesting to hear the Rhonda and the three of them talk about the best course of action. They were very logical about what they were finding. Luke cried alot and resisted taking any medication. I got the kitchen timer and told him I'd let him set the timer from 0-10 minutes. He'd have to take his medicine within that amount of time or we'd force it down. When I gave him the timer, he quickly turned it to back 60 minutes. We all laughed! This was pretty witty for a sick 5-year old and little did he know he gave us a look into his neurological condition, ie he was thinking straight. Having checked his pupils and other vitals, listened to him cry, watch him walk and talk, and make us laugh with his wit, Rhonda, Brett and Jen felt a decrease in heart rate may just be normal for Luke. And his vomiting and weakness may also be normal in the post-surgery phase. Also, all those other factors (pupils, neuro, etc) did not deteriorate with the heart rate as one would expect if there was something really wrong. The course of action tonight was going to be check him every 2 hours. This was not far from what Hershey Neurologist suggested anyway...we were just going to do a little more monitoring than what they suggested. Brett and Jen graciously spent an hour with us and help put Rhonda and me at ease. We really appreciate them so much for doing this!
At 10:30, Rhonda called our neighbors, Brett and Jennifer, both of which are Emergency Room Nurses and both have years of experience in the Intensive Care Unit at Nason and Altoona respectively. I've always liked our neighborhood because of the health care pros we have...especially the ER-types. Rhonda wanted them to double check Luke's heart rate which seemed to get lower and lower...57...54. We woke Luke up to get him aroused and take his medicine and get his heart active. His heart rate jumped to 107 bpm. This was good. It was interesting to hear the Rhonda and the three of them talk about the best course of action. They were very logical about what they were finding. Luke cried alot and resisted taking any medication. I got the kitchen timer and told him I'd let him set the timer from 0-10 minutes. He'd have to take his medicine within that amount of time or we'd force it down. When I gave him the timer, he quickly turned it to back 60 minutes. We all laughed! This was pretty witty for a sick 5-year old and little did he know he gave us a look into his neurological condition, ie he was thinking straight. Having checked his pupils and other vitals, listened to him cry, watch him walk and talk, and make us laugh with his wit, Rhonda, Brett and Jen felt a decrease in heart rate may just be normal for Luke. And his vomiting and weakness may also be normal in the post-surgery phase. Also, all those other factors (pupils, neuro, etc) did not deteriorate with the heart rate as one would expect if there was something really wrong. The course of action tonight was going to be check him every 2 hours. This was not far from what Hershey Neurologist suggested anyway...we were just going to do a little more monitoring than what they suggested. Brett and Jen graciously spent an hour with us and help put Rhonda and me at ease. We really appreciate them so much for doing this!
Subscribe to:
Posts (Atom)
