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!

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:

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!

We made it home

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!!!!

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.

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.

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.

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!!

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!

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.

Shriners provides Luke a brace for treating Scoliosis

Luke is very proud of his "solar" brace, although he can only stand to have it on for 45 min to an hour at this point.

Luke scheduled for surgery at Hershey Medical on July 16

Parents shruggle with decision who should operate

For three weeks we had researched plenty of websites, talked to many people, had professional opinions...you'd think we would know what to do. However, we now had TMI...too much information. There were minor contradictions in opinions with what seemed like great consequences. We had changed our minds 3 times...chiari institute, Hershey Medical, Johns Hopkins...then back to Hershey.

The Chiari Institute (TCI) surgeons were kind enough to e-mail me the past few days on the differences between surgical procedures (hopkins vs hershey). Hopkins received high recomendations previously from one of the TCI surgeons; yet, another CI surgeon explained his preferences of a dura patch from Luke's own body over the other alternatives of a pig cadeaver and a snythetic material, which are more prone to leaking. We totally trusted TCI's opinions and they were critical in our decision making. Additionally, a pass by Johns Hopkins Hospital in Baltimore quickly discouraged our comfort-level to live there for a few days. This wasn't critical but we did weigh the environment: the seemingly unsafe section of Baltimore vs beautiful central PA. Some also suggested for Luke's recovery period might be an issue in that Hopkins and other inner city hospitals are usually understaffed, even though their surgeon staff may be top-notch.

Ultimately, after 2 agonizing days while camping at Raystown PA, we felt most comfortable with Hershey Medical and Dr. Iantosca. We hope we made the right choice.

Second Opinion from Johns Hopkins Neurosurgeon, Dr. Weingart, confirms treatment options

Dr. Weingart was recommended to us by the Chiari Institute. He was very friendly and answered our questions, but what we hoped would be a confirmation of our first opinion left us confused and torn. There were two components of the surgery that differed between the surgeons. The first was the type of material that would be used to patch the lining of the brain. A synthetic patch was used by Dr. Weingart, whereas a peice of Lukes own tissue would be used by Dr. Iantosca.
Also, Dr. Wiengart explained the use of titanium bracket to replace the removed section of skull and create more space for the cerebellum. Dr. Iantosca did not replace the skull that would need to be removed to operate.