Wednesday, November 25, 2009

Forehead Kisses From The Father - Surgery week

I have spoken about forehead kisses before on our family blog.. But over the course of this past week, I have been very aware that there have been many more kisses from the Father.

Now that we are home and life is slowly returning to normal, I wanted to take some time to really share with you a number of things that happened this past week that were so precious to us.

Throughout this past week, there is no denying that the prayers of the people around us have sustained us. But I felt like I wanted to make sure that first and foremost, God gets the glory for EVERYTHING that has transpired over the course of this past week. Because without His intervention, this would have been a very dark, painful and difficult week.

I would be lying to you if I said there were no tough moments; there were a few. But for the most part, there was this peace that followed us everywhere we went *kiss*.

As we waited in the waiting room, I was not looking at the clock wondering how long it had been or how much longer it would be. Rather, I found myself praying for the other families. The family who's infant was having heart issues and would go in for surgery the following day. I prayed for them and their little one. I had the luxury of knowing that there were many prayers sent up on Karter's behalf. *kiss*.

It was about 6:15 when Dr. H, the neurologist came out from surgery to let us know how things were going. Her words chosen so beautifully. Although there were a few surprises in their finding (the fact that his abnormality did span into the sensory/motor cortex) she spoke word of affirmation and encouragement to us. *kiss*. There was no caution in her voice or in her words, more than that there was extreme optimism. *kiss*. She spoke the words that we had prayed; that the surgery would be easy, without complication and would be successful. *kiss*

We were told that because of how invasive the surgery was and how intensive the monitoring was, Karter would not move his left extremities for up to a week. We were also told that his vision in his left eye would be off for a few days and that we would find that he would only look right for a time. Karter came out of surgery kicking all his legs and arms *kiss*. Also, he rested his head and eyes to the left more often than to the right. *kiss*. In the words of the doctor "This little guy is defying all the odds, I love it when I am proven wrong" *kiss*. Those were words that have been spoken over Karter many times. That he would defy the odds and would overcome.

One thing I had remembered from the previous surgery was that they waited a little too long to give him pain medication, post op and he was in a lot of discomfort for about an hour or so. This time, Karter rested comfortably from the time he left the operating room. There was such a peace about him. He even opened his eyes a few times just to be assured that we were there. *kiss*.

When we returned Saturday morning, Karter was in ICU and completely awake, moving around with no swelling. We were astonished at how well he was doing - again there was such peace that rested in that room *kiss*. When the doctor came to see him that morning, she too was extremely surprised. Here words full of encouragement and hope *kiss*.

As the day went on and the swelling started, a beautiful rest fell over Karter. He was not bothered by the fact that he could not open his eyes, he just rest in the arms of Jesus. *kiss*. I have been told that in those circumstances, most children are very irritable. Karter slept for 2 and a half full days until the swelling went away. *kiss*

The question that the doctor asked each time she saw Karter was "Any seizures?" I responded each time with a "no". On Sunday evening, she looked at Karter and then turned to us and said "This little boy is a miracle". *kiss, kiss, kiss* I looked at her and said "I receive that".

The final morning before we left the hospital, the surgeons came in to see Karter and were so pleased with his progress, 2 and a half days (60 hours) post surgery he got the ok to go home. *kiss*. When the doctor came in for the last time to see Karter, she spoken beautifully over him. She told us that she was "so hopeful for him". That we should see increase in him. In his abilities and in his development. Those were specific prayers that we had for him. *kiss*

Although there were a few moments on the Thursday before surgery that were tough, there is no doubt in my mind that the timing for this surgery was perfect and was intended to be as it was - not by mistake - but for a specific purpose.

We love our neurologist, she has done amazing things for Karter and we are blessed to have her on our team. She was away in China this weekend. Dr. H, who spoke such beautiful words over Karter, would not have been the one to walk with us through the surgery days had our regular neurologist been there. I will not discount our regular neurologist in any way, but God intended for those words to be spoken by Dr. H. Such a gift *kiss*.

Karter is an over comer, we have spoken that over him since day one of this journey. As I have watched him these past few days, I am awed by how incredible he is. How patient, tolerant and accepting he has been against all his adversities. I watch him trying to roll with all the strength he has and I am amazed at God's goodness. There are so many more things I could say about this. I just wanted to be able to share with you the little things that made this week such a God given gift for us.

We have turned the page. We are starting a new road. We are excited for the new things that are ahead of us and are thankful in all things that have transpired over the past few years. God had been faithful. He is the one who has brought us to this place and without Him, we would be puddles of emotion on the floor.

I wanted to leave you with these pieces of interesting information. After surgery, and all the testing they did on Karter's brain, we were told that there was so much Epileptic activity happening in that right lobe area that Karter was in constant seizure. Although we did not see it physically, that was what was happening. The result of that was lack of ability to move forward and develop. The doctor said to us "he did not have a chance to develop with what was going on inside his brain". When I asked he later how much of the tested brain, that showed that activity, was removed. She responded with "80%". She went on to say that it is possible that the pathways to the other 20% of abnormally developed brain have been cut off - thus the reason for her optimism *kiss*

God is so good to Karter and to us

Here is a picture of Karter from today. This hat was a gift from a friend, check her website out here Thanks JM!

Tuesday, November 24, 2009

Our First Day Home

We were able to come home last night. We arrived home just shortly before 5 pm. Paige was at an activity and came home to the wonderful surprise of Mommy and Karter at home (It was such a sweet moment). She had a really tough time without Mommy around this past few days. She remains quite emotional and cuddly today. Although she was older this time, I think it was harder for her becuase she understood what was going on and found it quite emotional.

Karter slept really well last night. He went down around 7:45 and woke around 8 this morning. He appeared quite happy when he woke but would not take his morning milk cup.

As the morning progressed he became quite cranky. He would not eat or drink anything. By 9:30 he fell back asleep beside me on the couch. When he woke, I tried again to feed him but I only managed to get in a couple of bites, milk and juice were also a no go.

For the rest of the morning he played on the floor under his play gym. The greatest news though...he was using every bit of energy he had to roll over from his back. He was even starting to get frustrated when he couldn't do it. All the momentum was spinning him around on the mat.

I tried once again around 11:30 to get him to eat and drink, again without success. He appeared very tired, so I put him down for a nap at noon. He slept the entire afternoon and got up at 4:30 smiling and happy.

At dinner, I managed to get him to eat a small amount. He played again in his wheelchair and then on the floor and was quite happy. Just a few moments ago he drank a few ounces!!! Success...FINALLY!!! He is in very good spirits this evening.

We are so thankful to be at home and to resume life again. It has been a harder transition that I thought it would be, to come home. Because there was no time to prepare for this post surgery week before Karter's surgery; the fridge and pantry are bare, the underwear drawers empty and the inboxes are brimming. It has taken the entire day to feel settled at home. It was a little weird to go from "hospital/surgery mode" to packing the snack bag and doing home reading to doing laundry and getting back to work.

At any rate, we are thankful and so reflective about the amazing things God orchestrated this past 5 days. I hope to take some time later this week to sit down and share with you all of the "God Moments".

Monday, November 23, 2009

Post Surgery - Day 3

Karter's swelling peeked around 3:00 yesterday. By evening, it appeared that things were already starting to subside. Karter had a great sleep. He slept through until about 6 am when he started to complain. I got up to see both his eyes were open! Also, he had soaked completely through all his clothes and bed linens. After changing him, he went back to sleep until 8:30.

Around 9am, Dr. Steinbok and his neurosurgery team came in to see Karter. They are thrilled that there have been no seizures - we are too! He told me that he was happy to let us go home this afternoon as long as Karter is taking some liquid. So we are preparing to go home. The IV has been taken out and the codeine will be weaned this afternoon. He will go home on Tylenol.

He is lying on the bed right now kicking around and playing with his feet! I love it! He is already starting to return to himself. he has been awake and alert since 8:30. Sit ups smiles and the whole bit!

Last night, when the neurologist came in, she was thrilled with Karter's continued recovery. In a room full of visitors she said "He is a little miracle boy". My soul just leaped - "I receive that" I said! So neat!

I will try and update throughout this week as we return home and continue assisting Karter in his recovery.

Thanks for your prayers and support.

Sunday, November 22, 2009

Post Surgery - Day 2

Late evening yesterday, Karter’s swelling increased dramatically. Both eyes began to be swollen shut. Amazingly, he was still resting comfortably and seemed unbothered by it.

Karter had a good night. Around 8 last night he drank a full 8 oz and then again at 11:00 before we went to bed, he drank another 2 oz. His vitals with checked at 11:20 and meds were given and we went to bed for the night.

I believe they check in on Karter every hour, but vitals and meds were given every 4 hours throughout the night. We both slept comfortably and as well as could be expected without being in our own beds.

This morning, Karter has not been interested in eating or drinking anything. He is still sleeping a lot. I am not sure he has been awake more than 5 minutes at a time. He is still very swollen and cannot open his eyes. The swelling is said to subside this evening and into the morning tomorrow. He has been very peaceful and only upset when we bother him to wake, move, feed or give him meds.

We saw two of the neuro-surgeons on call this morning. They are going to decrease the codeine this afternoon stretching it to every 6 hours opposed to the current 4 hours. They still seem quite excited about Karter’s progress. I will see the neurologist later this afternoon. They are very pleased to hear that he has had no seizures post operatively. We have been told that any seizures resulting up to 3 months post surgery are considered to be the effects of surgery.

We had a few visitors last night and are expecting a few more family members this afternoon. It has been fairly uneventful in the room, which has been a nice rest for me. I am sitting and watching DVD’s and relaxing (something I am certainly not used to doing); it has been a nice weekend all things considered.

Here are a few pictures of Karter from last night and today. You can see he is very swollen and does not look like himself. He is however doing very well; he is such a trooper!

These photos are from last night:

These are from this morning, you can see how the swelling has peeked here:

Saturday, November 21, 2009

Post Surgery pics

Here are the pictures from last night, just about an hour post surgery:

Here are the pics from this morning when we came in. In the last hour Karter has started to swell a bit in the left eye. He is sleeping a lot and seems quite comfortable. We are now on the ward resting comfortably in a private room.

Post Surgery - Day 1

We arrvied back at the hospital about 10:15 this morning. Karter was still in ICU. He was awake and very alert when we arrived. He even gave us a few half hearted smiles.

The nurse told us that he had a really good night. He slept through really well and woke at his normal time, 7:45. After he woke this morning, they took blood work and all his levels were really good. They then took him off the morphine (last surgery he was on it for about 48 hours) and put him on Tylenol and Codeine for the pain.

I gave him the codeine when he got his seizure meds this morning. There was an obvious lapse in time between coming off the morphine and receiving the Codeine, he did appear to be in some discomfort, but once the codeine kicked in, he rested and is still resting peacefully. It was nice for me because I was able to hold him and have him fall asleep in my arms.

The neurologist came in this morning on rounds and was thrilled to see that Karter was recovering so well. She had told us yesterday that we could expect the swelling to be far worse that the first operation, because of how much time they spent doing testing on the brain as well as how far forward they went with the resection. I am happy to say that there is almost no swelling. He looks far better than he did after the first operation. Also, she mentioned that he would experience some weakness on the left side today and for up and until a week. While she examined him, he was kicking both legs equally and moving the fingers nicely on his left hand (which is splinted because of the IV). Also, she mentioned that Karter would not look right because he would have some deficit in the right eye for a few days. Happily, I can say that although he is tracking left and right, he is gazing more to the right than he is to the left. Dr. Haa was pleasantly surprised and told us "I am happy to be proven wrong". She was very pleased with how well Karter is doing today, as are we. Praise The Lord for these miracles!!!!

Karter will go up to the ward today. They are just discharging patients and cleaning the rooms in preparation for Karter to move up to the ward.

I had hoped to upload a few pictures but the wireless is not working, so I am on the communal computer. If things change later in the day, I will upload then.

Please pray that Karter and I will sleep well tonight. I will remain here in the hospital with Karter until he goes home, which is most likely Monday.

We serve an amazing God! He deserves all the glory for Karter!

Friday, November 20, 2009

Surgery Update - 3

Karter is out of surgery. He is apparently doing really well, moving around and not very swollen at all. He was extabated quickly and without complication and he came to fast as well. PTL!

We will see him in about 30 minutes. The doctor has also said that he is not in any pain. Over the next few days he will be on morphine and Tylenol with codine. Amazingly the only thing that hurts is the incision, there are no nerve endings in the bone or brain that would cause him pain.

They have told us that we can expect that he will have slow function on the left side up until the next week. This is normal and will correct itself quickly.

Thanks for the prayers. We are anxious to see our little guy now.

Surgery Update - 2

We have just seen both the neurologist and the neurosurgeon. The operation has gone beautifully. There have been no complications and everything went very smoothly.

The EEG electrodes were placed right on the brain to monitor Epileptic activity. As we knew from previous testing and previous surgery, there was seizure activity that was prevalent in the frontal area of the right brain. A surprise to the doctors, was that there was also a fair bit of activity that extended further back and above the first resection. This area does extend into the motor and sensory cortex.

With that in mind, they took the electrodes and did motor monitoring, which basically allows them to stimulate the brain and see what parts of the brain are responsible for the motor activities, such as hand movement etc. Because we had previously decided that if there was seizure activity in the motor cortex it would not be removed, Dr. Steinbok resected the area as far back as he could without inhibiting any motor function for Karter on his left side.

After the resection was finished, they did more EEG monitoring and there was still some activity extending behind the resection. The hope is that they have cut off the pathway and that his seizures will be contained and improved.

Karter has another 45 minutes until his surgery is complete at which time they will extabate him in the OR and send him to ICU. We should be able to see him about 7-7:30. He will remain in ICU overnight and go up to the ward tomorrow. They anticipate the swelling to be a bit worse this time since they had to come move forward than they did last time. Please pray that this will not bother Karter and that the swelling will not be as bad and will subside quickly.

I will post a bit more tonight or tomorrow morning. Thanks for your support today!

Surgery Update - 1

I just thought that I would let you all know that Karter went into surgery a bit later than we thought. I believe they took him in around 1:30.

We met many doctors and other people that will be with Karter in the OR. He is in very good hands. The nurse put emela cream on Karter's hands and feet so that the IV start is less Painful and then before surgery the surgeon comes in and initials the side of Karter's head where the incision will be made.

Karter had a rough hour prior to surgery since he was so hungry. He had not eaten since dinner time last night. Needless to say, he was really grumpy! Kurt and I fasted with him so we understood how easy it was to complain!

The hardest moment was when we handed Karter to the nurse to take him into the OR. He cried and that just got us. It was hard to see him walk away in someone else's arms. But we were able to gather ourselves fairly quickly as we headed for our waiting post, the ICU waiting room. God is good!

We feel such peace as we sit in the waiting room. I have been checking Facebook, Kurt is out getting us something to eat and we feel like this is like any other day. This is the true grace of our Father. His peace transcends all understanding. We are so blessed to have Him to turn to.

I will do my best to update you as we get work throughout this afternoon. Thanks for your support.

I wanted to leave you with a beautiful email I go this morning just before leaving for the hospital. It is from a dear friend.

"We have been praying for Karter since we awoke at 6:30am and as I've been praying for him here at work the Lord gave me a beautiful word/picture I knew I had to share with you. This has taken me a while to write due to tears not stopping and that is a bit of a problem here at work. :)

Anyways, the Holy Spirit whispered to me that as Karter falls asleep for this surgery, not only will He guide the surgeons hands, have angels on guard, and bring complete healing to little Karter; but He will use this time to give Karter dreams of His amazing love for him. In his dreams, Jesus will play with Karter, read to Karter, laugh with Karter and share with Karter His great plans for his life. The picture I saw was Karter on Jesus' knee embraced by Him, protected, and Karter oblivious to anything going on around him as he was in His father's lap. The peace, joy and laughter from that place was so beautiful.

So know that as your son is on the operating table, the Lord is speaking to Karter and has Him on His lap completely embraced in everything Christ is."

Thursday, November 19, 2009

Surgery - FRIDAY!

Just over an hour ago I got a call from Children's Hospital. It appears that Karter will be having surgery tomorrow (Friday November 20th). This came as quite a shock as we were preparing for surgery on Tuesday. It appears that Karter's surgery needed to be bumped back because the surgery that was suppose to happen tomorrow needed to be postponed until Tuesday.

The only thing that would be different tomorrow over Tuesday is that our neurologist will be away and Dr. Haa will have to step in to read the EEG testing. But we are ok with that.

I trust that the Lord had this date in mind well before Karter ever took a breath. This is God's perfect timing and I rest in that.

So off to Children's Kurt will go this afternoon with Karter to the pre-op clinic appointment. I will stay here and do Paige's kids birthday party (a princess dress up/make up party).

Karter's surgery will be scheduled for 12:45 pm tomorrow. Here is the schedule of surgery. I will keep do my best to keep the blog updated as the day and weekend progresses.

Thanks in advance for your support and prayers, they are so important to us, we could not do this without them.

1 - Prep and Sedation- 12:45-1:15 -
Karter will receive an IV (which at times, a vein has been hard to find and get on the first go). Once the IV is started, they will put him under anesthetic. Please pray for the anesthesiologist. Once he is completely under, they will move on to the next step.

2 - Re-opening the incision - 1:15-1:45 -
They will be going back through the same incision they made last time. The hope is that they can keep the same scar as they had last time. Once the incision is made, they will move on to remove the window of bone that gives them access to the brain.

3 - Removing the window of skull to make room for the resection 1:45-2:15-
The only issue that could cause problems here is that sometimes the scar tissue can stick to the bone, this can make for a harder time when trying to remove the window of bone. Also, there is a higher chance of bleeding at this point. Please pray that there is no scar tissue that has adhered itself and that the bone comes out easily.

4 - EEG/ECOG 2:15-3:15 -
The neurologist, Dr Conolly, and EEG techs will lay grids right onto the brain to detect seizure activity. From their testing, they will determine how far back the seizures go. At this point there is no indication that the seizure activity goes back into the motor cortex, we continue to pray that way and ask that you do the same. Should they have to go into the motor cortex, Karter would lose left peripheral vision as well as experience muscle weakness on the left side. Please pray that the EEG/ECOG comes back clear and the reading happen quickly.

5 - Resection 3:15-4:45 -
This is where the surgeon, Dr Steinbok, will remove the portion of Karter's right frontal lobe. There is a 1% chance that at this point Karter could have a stroke. It is not likely, but it is a risk factor. Please pray against that. Also, there can be risk of bleeding at this point. Pray for steady hands, for accuracy, peace and clarity of mind for our surgeon. He is an amazing man, we are so very thankful he is on our team!

6 - EEG 4:45-5:45 -
They will go back and place the grids on Karter's brain again to make sure that there is no more electrical activity. Our prayer is that from this point forward, Karter would no longer suffer from Epilepsy!

7 - Replacing the skull bone 5:45-6:15-
Once all the testing is done, they will replace the window of bone. Pray that there is accuracy in this as well.

8 - Closing up the incision 6:15-6:45 -
Once the bone has been replaced, the incision will be sewn up. Karter had a great scar last time, very neat and in such a way that his hair covered it. Our prayer is that the same care is taken this time.

9 -Recovery 6:45 on
Once Karter is finished in the OR, they will take him to ICU where he will come out from under the anesthesia. They will extabate him as soon as they can and as soon as he is able to breath on his own. The sooner the better. Please pray that this can happen immediately post surgery and that there will be no difficulty with breath or with Karter's pre-existing reflux or asthma.

10 - Post surgery
Karter will remain in ICU for the first night, Kurt and I will not be able to stay with him that night but will return Wednesday morning. At some point on Wednesday, we will be transferred to the ward. We have a few friends there that are nurses. Please pray that we get a private room, that is best scenario for both Karter and myself.

Sunday, November 1, 2009

Halloween Fun

Karter came out with us for trick or treating last night. The was the first year that he was really able to participate in a way he could enjoy. Last year he lasted about 5 minutes and we took him home. It was so cute to watch him get excited as we approached each house. He just fed off all of the other kids energy and excitement. I think he has a really good time.

Here are a couple of pictures of Karter - he was Thomas The Tank Engine - we thought it was a good costume to go with his wheelchair.