We arrived home. Luke slept mos of the way, until about 1/2 hour outside of Martinsburg. He began to get very nauseated when we hit Martinsburg but made it in the house and after eating a bowl of cereal he felt better. He is moving around so much better at home. I think he was getting depressed in the hospital-right now he is kneeling on the floor playing with Star Wars figures with his cousin. Our only problem is that he does not want to take his medicine. He is afraid that he will throw-up. He needs to take Tylenol every 4 hours around the clock to keep the pain under control and also a steroid every twelve hours to keep the swelling in his brain down. It took me,(and my 2 sister-in-laws) an hour and a half to get the 6:30 Tylenol dose in him. I am getting suppositories before the next dose, so given the choice, we will see which he chooses.
I am SOOOOO relieved to be out of there. I know I was feeling depressed when his temp was going up - fearful of him being stuck there for who knows how long. My heart goes out to the many families with children in the hospital who do need to stay for long periods. I am drained physically and emotionally after just 3 days.
Thank-you so much for everyone's kind prayers, emails, gift bags, cookie bouquet --which is too cute to eat!--, fruit bouquet--very neat--oreo's --oh so sweet--visits, best wishes, mail, and love!!!!! You are all so very special!!!!
Friday, July 18, 2008
Good News!
Luke was just seen by both Dr. Iantosca, the pediatric neurosurgeon who performed the surgery, and the Physical Therapist and Occupational Therapist. Dr. Iantosca removed Luke's dressing so we have gotten to see his incision for the first time. Dr. was pleased, Luke has some mild swelling that he said was less than what would typically be seen but that it will get larger and smaller as he sits up and lies down. He explained that as long as the swelling is soft not to worry. He should keep an ace wrap on his head to decrease the amount of days that the swelling will occur. Hydrocephalus (increase in fluid on the brain) is still a concern so we need to watch for signs of that occurring. He had Luke sit up and nod his head yes and no and said that he is moving much better than most kids and way better than any adult who has the surgery. He told us that we can go home today if we want to. Physical and Occupation Therapy had him walk down the hall and up and down a flight of stairs. This wiped him out-he was sleeping before the walk and is knocked out after. He did very well, but is not walking normally. His balance is off, which is not surprising after this type of surgery. They have recommended outpatient Physical Therapy and felt that he was doing well enough that he wouldn't require staying here longer for inpatient therapy. We have decided to wait until after lunch to see how Luke is before we decide to tackle the drive home. He has not had any IV pain medicine since last evening, which is a good sign that his painis improving and may be controllable with just tylenol.
If anyone is familiar with an outpatient therapy setting that is used to working with children please let us know. We will need to make these arrangements when we get home.
So far so good for today! We will keep updating as we can.
If anyone is familiar with an outpatient therapy setting that is used to working with children please let us know. We will need to make these arrangements when we get home.
So far so good for today! We will keep updating as we can.
We Want To Go Home
The third day here feels like the 30th. Luke has been crying to go home since day one. Uncle Todd and Uncle Mark came to visit last evening along with our dear friend Wendy and her sister. The company truly makes the time go faster. The best part of yesterday for Luke was when his brothers were here. He played with his new Star Wars toys and Luke seemed like his old self. He could only play for a few minutes and was then exhausted. They were the best medicine for him though. The time that they were here made him forget a little about wanting to go home. Before they left last night, Luke held out is arms for his little sister and smiled as she hugged him.
He ate a peanut butter and jelly sandwich and some mac n' cheese at supper, but began to run a fever around 6 o'clock. It was 100.8 at hat time and his face was very flushed. About an hour later it climbed to 101.5. We were fearful that this may be the beginning of something bad that might prolong Luke's hospital stay. Fortunately around 10pm, his temperature came down to 99.0 and has stayed down the rest of the night. He threw up his mac n' cheese after taking the oral Tylenol. Will we still get to bring him home today?? I pray that we can, but it's not looking too good.
Randy spent the night with Luke and for the first time since surgery, Luke walked to the bathroom. He began to fall backwards while walking both to and from the bathroom and Randy had to catch him each time. I would suspect that this may be normal after such a surgery, but the pediatric neuorsurgeon resident that saw Luke very early this morning said that he would be having a Physical Therapist come to see him today. I hope that this doesn't mean that it could be a problem.
Luke's face is much less swollen today and we are anxious to see him without the bandages and ace-wrap on his head. His IV is disconnected and will remain that way if he can eat without nausea and vomiting today. He is still having quite a bit of pain, especially in his neck.
He ate a peanut butter and jelly sandwich and some mac n' cheese at supper, but began to run a fever around 6 o'clock. It was 100.8 at hat time and his face was very flushed. About an hour later it climbed to 101.5. We were fearful that this may be the beginning of something bad that might prolong Luke's hospital stay. Fortunately around 10pm, his temperature came down to 99.0 and has stayed down the rest of the night. He threw up his mac n' cheese after taking the oral Tylenol. Will we still get to bring him home today?? I pray that we can, but it's not looking too good.
Randy spent the night with Luke and for the first time since surgery, Luke walked to the bathroom. He began to fall backwards while walking both to and from the bathroom and Randy had to catch him each time. I would suspect that this may be normal after such a surgery, but the pediatric neuorsurgeon resident that saw Luke very early this morning said that he would be having a Physical Therapist come to see him today. I hope that this doesn't mean that it could be a problem.
Luke's face is much less swollen today and we are anxious to see him without the bandages and ace-wrap on his head. His IV is disconnected and will remain that way if he can eat without nausea and vomiting today. He is still having quite a bit of pain, especially in his neck.
Thursday, July 17, 2008
Luke continues to fight for a fast recovery
Luke is healing quite well the day after surgery. The night was extremely long. Mom finally got some sleep while Dad stayed up with him from 11:00-5:00. This was Rhonda's first good sleep since two days ago. Luke didn't sleep that much, tossing and turning through the night. I was relieved about 5:00 and got to go back to the McDonald house for my rest. When I returned at 12:30pm, Luke was moved out of Intensive Care to the normal pediatric care. He continues to throw up occasionally but so far has been able to eat a popsicle. Most of his tubes have been removed and his only complaints are to go home and remove his head bandage which he calls his "hat".
Some Trexler relatives who live in the Harrisburg area have stopped by. His Pappy's sister (Aunt Janet) and brother (Uncle Don, Aunt Anne, and cousin Wendy) have all stopped in to visit him. Granny brought his brothers, Eric and Jonathan, and his sister, Kira. He's gotten several balloons and gift bags full Star Wars toys and Cars movie, Lightning McQueen. Julie Mills was nice enough to accompany Granny and the kids and show them the way to the hospital.
Luke is feeling better though and is definitely ready to come home.
Some Trexler relatives who live in the Harrisburg area have stopped by. His Pappy's sister (Aunt Janet) and brother (Uncle Don, Aunt Anne, and cousin Wendy) have all stopped in to visit him. Granny brought his brothers, Eric and Jonathan, and his sister, Kira. He's gotten several balloons and gift bags full Star Wars toys and Cars movie, Lightning McQueen. Julie Mills was nice enough to accompany Granny and the kids and show them the way to the hospital.
Luke is feeling better though and is definitely ready to come home.
Wednesday, July 16, 2008
Luke's Recovery proves difficult on 1st day
Luke's recovery after surgery was difficult as expected. We were expecting a call to see him at 12:35 but the call never came until 2:30 and Rhonda was very worried and almost in tears.
The first thing he said when he came around from the anesthesia was, "Mommy, can we go home?" He passed all of his nervous system tests...gag reflexes, coughing, etc. These nerves were in the vicinity where they were working and were the biggest concern. He can move his toes and fingers so his nervous system is still in tact. I asked him to name his brothers and sister and he said in a ventriloquist-style voice..."EriJonnyNKir".
From 2:30-4:30 he threw up once and was in a great deal of pain at which point we had seen enough and asked for the morphine. From 5:00-6:30 he slept and at 7:00 he started watching Spongebob cartoons; I will be searching for a Star Wars movie because, after all he is "...Luke Skywalker and I am his Faaather!"
Just like you all, we constantly check this site to see if anyone is reading these updates. I've had alot of calls and we enjoy reading all the comments. Thanks every for the prayers and wishes!!
The first thing he said when he came around from the anesthesia was, "Mommy, can we go home?" He passed all of his nervous system tests...gag reflexes, coughing, etc. These nerves were in the vicinity where they were working and were the biggest concern. He can move his toes and fingers so his nervous system is still in tact. I asked him to name his brothers and sister and he said in a ventriloquist-style voice..."EriJonnyNKir".
From 2:30-4:30 he threw up once and was in a great deal of pain at which point we had seen enough and asked for the morphine. From 5:00-6:30 he slept and at 7:00 he started watching Spongebob cartoons; I will be searching for a Star Wars movie because, after all he is "...Luke Skywalker and I am his Faaather!"
Just like you all, we constantly check this site to see if anyone is reading these updates. I've had alot of calls and we enjoy reading all the comments. Thanks every for the prayers and wishes!!
Luke's Chiari Decompression Surgery appears successful
Luke arrives at Hershey Medical Center at 6am. We navigated Hershey's check-in process and landed on the 2nd floor which is the pre-surgery area. His own garb was swapped for Tigger pajamas. He had played his Star Wars Nintendo DS game for most of his first hour oblivious to all the controlled stress going on around him. A few minutes after 7:00a he was given some medicine to loosen him up so the separation from Mom and Dad was less traumatic. As the medicine set in, he made his way to a drunken stupor...flopping around and banging his head on the side rail every time he attempted to sit up. At first it was uneasy to watch but once he started giggling and cackling, it was fun to see him so happy. I tested his awareness with my favorite question to all of my kids.
"Who loves You?" I asked.
"Yoouuu" he replied after a few seconds of eyes darting all over.
"Who loves Me?" I pressed further.
Nothing for 10 or 15 secs, then with a grin and giggle he said, "Jonny!!"
He was supposed to say "Me". Nevertheless, I felt more relaxed. He did for Mom and Dad what we were trying to do for him all morning. At that point, he didn't have a care in the world and he never noticed us staying back as they wheeled him into surgery. He was off to the most important event in his life.
The normal surgical procedure was to sedate him, give him an IV and put him to sleep. The first hour was spent hooking monitoring equipment to him, especially his spinal activity. Once they established reasonable measures, they began the surgery at about 9:30.
We had visitors in the waiting room around 8am. Sam Dean from our church had come by and spent the morning waiting with us. He was nearby for an educational conference and took the morning off to keep us company. Sam took our place in the waiting room while Rhonda and I went to get some breakfast. The food wasn't great but the company was when we returned. Julie Mills, a neighbor and also a friend from church, was there with Sam. She drove from home that morning also to be with us in any capacity we needed. We each took turns telling life stories and laughing like a bunch of hyenas. Having friends there to distract us from the serious nature of what was going on with Luke just one floor above us was an unexpected thing that was both welcome and timely, as if sent by God.
At 12:10, the neurosurgeon appeared to let us know the news was good. The decompression surgery was a success. He suffered no great blood loss and all the monitoring showed an immediate improvement in the flow of his spinal fluid. This is the exact point of relief where your heart takes an extra skip and your eyes excrete some extra tears. Even though we hadn't yet seen Lukey, we assumed things would be OK from this point on. Yes, there was the recovery process, but hearing the spinal fluid was doing what it was supposed to made it all worth it.
The doctor left and we all looked at each other with a sigh of relief. After some talk, Sam said his goodbyes and headed back to work. We didn't necessarily know Sam that well outside of church but we appreciated him so much for staying with us. On his way out, he ran into Pastor Joel Nogle and his wife Kathy. They were at a church conference in Richmond VA and left early to also be with us. We talked about the prognosis of all three of his disorders then moved to those light-hearted stories for some more laughs. It was a great day indeed to have so many friends call us and visit us this morning.
As of this writing, we have not seen Luke. At 1:30 he was still asleep and on a breathing tube. We expect to see him with his head bandaged and some swelling. The doctor anticipated a relatively early release Friday pending any complications. Leaving Friday will be a sign things went well. Some patients last 3 or 5 days, but Luke is a fighter and hopefully he'll be out earlier than usual. Luke will have to take it very easy for 2 weeks so as not to disturb the healing. He will receive another MRI in approximately 6 months. This will hopefully show an open cavity for fluid to flow more freely causing the Syrinx (cyst) partially or totally dissolved. Over time the Syrinx is expected to dissolve completely.
Heading back to the hospital now...hope to see lil' Lukey!
"Who loves You?" I asked.
"Yoouuu" he replied after a few seconds of eyes darting all over.
"Who loves Me?" I pressed further.
Nothing for 10 or 15 secs, then with a grin and giggle he said, "Jonny!!"
He was supposed to say "Me". Nevertheless, I felt more relaxed. He did for Mom and Dad what we were trying to do for him all morning. At that point, he didn't have a care in the world and he never noticed us staying back as they wheeled him into surgery. He was off to the most important event in his life.
The normal surgical procedure was to sedate him, give him an IV and put him to sleep. The first hour was spent hooking monitoring equipment to him, especially his spinal activity. Once they established reasonable measures, they began the surgery at about 9:30.
We had visitors in the waiting room around 8am. Sam Dean from our church had come by and spent the morning waiting with us. He was nearby for an educational conference and took the morning off to keep us company. Sam took our place in the waiting room while Rhonda and I went to get some breakfast. The food wasn't great but the company was when we returned. Julie Mills, a neighbor and also a friend from church, was there with Sam. She drove from home that morning also to be with us in any capacity we needed. We each took turns telling life stories and laughing like a bunch of hyenas. Having friends there to distract us from the serious nature of what was going on with Luke just one floor above us was an unexpected thing that was both welcome and timely, as if sent by God.
At 12:10, the neurosurgeon appeared to let us know the news was good. The decompression surgery was a success. He suffered no great blood loss and all the monitoring showed an immediate improvement in the flow of his spinal fluid. This is the exact point of relief where your heart takes an extra skip and your eyes excrete some extra tears. Even though we hadn't yet seen Lukey, we assumed things would be OK from this point on. Yes, there was the recovery process, but hearing the spinal fluid was doing what it was supposed to made it all worth it.
The doctor left and we all looked at each other with a sigh of relief. After some talk, Sam said his goodbyes and headed back to work. We didn't necessarily know Sam that well outside of church but we appreciated him so much for staying with us. On his way out, he ran into Pastor Joel Nogle and his wife Kathy. They were at a church conference in Richmond VA and left early to also be with us. We talked about the prognosis of all three of his disorders then moved to those light-hearted stories for some more laughs. It was a great day indeed to have so many friends call us and visit us this morning.
As of this writing, we have not seen Luke. At 1:30 he was still asleep and on a breathing tube. We expect to see him with his head bandaged and some swelling. The doctor anticipated a relatively early release Friday pending any complications. Leaving Friday will be a sign things went well. Some patients last 3 or 5 days, but Luke is a fighter and hopefully he'll be out earlier than usual. Luke will have to take it very easy for 2 weeks so as not to disturb the healing. He will receive another MRI in approximately 6 months. This will hopefully show an open cavity for fluid to flow more freely causing the Syrinx (cyst) partially or totally dissolved. Over time the Syrinx is expected to dissolve completely.
Heading back to the hospital now...hope to see lil' Lukey!
Tuesday, July 15, 2008
Luke Arrives at the the Ronald McDonald House
What a great place...http://www.ronaldshousehershey.org/. It's very close to a large bed and breakfast and is totally run by volunteers and donations. It's unbelievable the needs provided to families here. I will now find myself donating to them because at the moment they provide food, bedding, toys and any necessities at no cost. Tomorrow's the BIG DAY.
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