Update on Kade.....Sometimes the harder answer may be the best answer

Warning, this post is long.

Sunday morning we flew out to Baltimore to seek a second opinion for Kade and his surgery that he is needing to treat his Chiari. We were hoping for the surgeon to either be in complete agreement with the surgeons at Childrens or to offer a safer alternative. Kade is completely clueless at to what is really going on right now. He has not once questioned why we go to the doctor all the time. All he knew about this trip was that he was getting to fly on an airplane and for that reason he was so excited. He just looked out the window and giggled the whole time. I am so thankful at this time for Kade's easy going little personality. He has been such a good sport with everything that is going on. He has even offered his little arm out for bloodwork to be done on two occasions, tears rolling down his face, but not putting up a fight. Here is a picture of Kade below. You can just see the wonderment on his face as he is looking out of the window of the plane. I just love this little face!



We landed in Baltimore and the words that came to mind after about 30 minutes of being there were, "Toto, we are not in Kansas anymore." Total change in scenery. As we approached downtown Baltimore where we were staying, we quickly realized that we were the minority. The city looked very, very, old. Although the building architecture was beautiful, it was absoultely spooky. I felt like we were in post apocalyptic Gothic City, with us being the minority. There were alot of homeless people walking the streets, alot, steam coming up from the sidewalks, trash everywhere, it was loud with firetruck and police sirens, and the air even smelled different. We ventured out one time, down to the harbor, and quickly back to our hotel room, where we slammed the door behind us, double locked it, and didn't dare come out, until our appointment time.



We got to Kade's appointment and Dr. Jallo was in and out with us in about 10 minutes, explained that he never starts out doing the fusion and decompression at the same time, and after reviewing Kade's records he would do the same in his case also. Although, it could be possible to later have to go back to do the fusion. Just not both at the same time. Whew! Okay. Although the appointment was brief, he gave us an easier answer. After all, that is what we were looking for. A weight had been lifted off of me, we felt so much better, so back to Alabama it was, to see if we could get the Alabama surgeons to agree.

We headed to Children's the next morning. Kade had to be sedated and have a CT done of his cervical spine to try to see some better images of the area. Then we met with Dr. Oakes and Dr. Rozelle. Dr. Oakes talked some, and then asked if we had any questions. I said, "Yes, I do. We have had a second opinion that recommends decompression only. Explain to me in your opinion why that would not be an option for Kade." He walked out of the room went and got Dr. Rozelle and we all four sat down with Kade's MRI. Is was at that time that I found out the Chiari Malformation was not Kade's main issue. His main issue is that when he was born the bones where the skull and spine come together were deformed in such a way that there is a certain bone in which is angled toward the back of the skull in a way that is putting pressure on his brainstem, and removing that actual bone is not an option. Instead we are going to have to remove a piece of skull and some parts of the vertebrae, try to shift the skull and spine in such a way that the pressure is taken off the brainstem and once that is achieved fuse the remaining part of the vertebrae to the skull. Freeing up this room should also help with his Chiari Malformation and allow the cerebellar tonsils to go back up into the skull rather than being where they are now, which is falling down in the spinal canal below where C2 is located. They explained if you only do the decompression from the back and free up that space, that it could shift so much pressure on the brainstem to the front, that we could lose his ability to breathe, and possibly not be able to get that back and that is why they disagree with Dr. Jallo at Johns Hopkins and absolutely refuse to do decompression only. At that time, Dr. Oakes looked at us and said that we need to decide where we want him to be treated at. After a thorough explanation of what was actually going on we told him we felt as if we were in the right place. He said to give him a week from Monday, because he was going to have to sit down with Dr. Rozelle and do some planning.

That was on Tuesday. Late Thursday afternoon I got a call at work from Dr. Oakes' nurse and she said after Dr. Oakes and Dr. Rozelle sitting down together and talking alot, that they wanted to admit Kade on Monday morning and get him started on a halo traction system and do that for about a week, and they need to know if you would be willing to do that? Of course I will. I will do whatever is best for him. So, we went back to Childrens on Friday morning, got measured for his halo device, and got some pre-admit labwork done. We seen Dr. Rozelle that day and he explained to us that the halo would be attached to his skull in six places and that it is attached with weights to the back of it that actually works like a pulley system, to try to see if they could get some more room in the area they are going to operate on. They will repeat his MRI after about 5-7 days then make final decisions on how to do his surgery. They think they will be ready for his surgery on Monday, March 12th, and that it would probably be an all day surgery. Once he is admitted on Monday, he will not come home until after his surgery. I also found out that day that on one side, his C1 is actally fused to his skull and on the other side, C2 and C3 are practically almost fused together with just a slight sliver of disc in between.

I never thought that going in on January 4th to have a simple sleep study could lead us to this point. As a mother it is so heart wrenching to know my sweet baby is having to go through all this. I would give absolutely anything to be able to change places with him. All we can do at this point is just to turn it over to God and let him handle this situation. After all, he is God's child that we so luckily and undeservingly got chosen to be his earthly parents. Please continue to pray for our family and for Kade's healing.

Needing Peace of Mind.........

It has been a month since we found out about the type of surgery that Kade will need, and as a parent the word "worry" does not even sound suitable. My sister in law's mother, Judy Bazzell emailed me a webcast that a Dr. Jallo @ Johns Hopkins Hosptial in Baltimore, Maryland conducted on Chiari Malformation and later, very kindly made the suggestion that we might want to check into sending Kade's records for this Dr. to review for a second opinion, just in case we would be interested in seeking a second opinion. After careful thought and much prayer, I started checking into Dr. Jallo, checked with our insurance in which it would cover 100% with no copay or deductible, and at that point I had no hestitation, booked his appointment, our flight and hotel, and started making preparations for us to go to Maryland.

That has been three weeks ago. Three weeks in which we could relax just a little, in anticipation that Dr. Jallo could either give us peace of mind by agreeing that the surgery that Dr. Oakes and Dr. Rozelle at Childrens want to do is the only answer to his problem, or by giving us some hope that there is something for Kade that would not be so invasive.

We fly out tomorrow morning. Kade's appointment is Monday. We fly back that night and go back to Children's on Tuesday for Kade to have a sedated CT scan and then we meet with Dr. Oakes and Dr. Rozelle for more discussion and to possibly set a date for Kade's surgery.

For those of you not familiar with Kade's situation, he has a complex Chiari Malformation in which his brainstem is being compressed which is causing him to have severe central sleep apnea, in which he quits breathing while he is sleeping, and this is constant, all night long. We found out Kade was born with this, and that the bones in his skull and cervical spine did not form properly. The only answer to his problem is to have a Chiari decompression with occipital cervical fusion. In other words, they are going to take out a small section of his skull, part of his upper cervical spine, and then fuse the remainder of his upper cervical spine to his skull.

Please lift up my little boy in prayer, and continue to pray for our family during this time. We should have definite answers by Tuesday.

Answered Questions........

Kade finally had his MRI done last Thursday. And before we left, Dr. Makris told us it was indeed Chiari Malformation and that he did have a syrinx also, which is a fluid filled cyst in the spinal cord and that they would set us up an appointment with a neurosurgeon. We seen Dr. Oakes today, where we got some answers. Dr. Oakes done a few tests with Kade, asked us some questions, and then asked the nurse to take Kade out for a little while.

Dr. Oakes then explained to us that Kade needed the operation, but it was not going to be a typical Chiari Decompression surgery. They were going to be removing a 20cm x 20cm piece of his skull above where his spine and skull connect (which I was aware of), but also they would be removing about a 20cm segment of the top of his outer spine and then fuse his spine to his skull. That is the part I was not prepared for. So, Dr. Oakes will be doing the skull decompression and Dr. Rozelle will fusing his spine to his skull. Dr. Oakes said that Children's performed about 500 Chiari operations last year, and of the 500, only about 5 to 10% of those were the type of operation that Kade is going to have. Dr. Oakes went over any and everything that could go wrong, and told us he did not have a magic wand to fix our problems. Needless to say I walked out of there in tears. The nurse pulled me to the side, hugged me, and told me that he may not have a good bed side manner, but he was the best surgeon there was, and she would definitely let him operate on her own children if it was ever needed.

Dr. Oakes believes Kade was born with Chiari Malformation because his skull did not form the way it was supposed to. It has just took it this long for his symptoms to become severe enough, that we finally found out what was causing them.

Next step will be to go for some type of special CT scan that will give them a better look at his upper spine and after that test, we will meet with surgeon B, Dr. Rozelle, who will be performing that part of the surgery. His actual surgery should be some time in February.

Continue praying for my sweet boy. But, in the mean time he will be getting extra loving from his Mommy, and anything he wants. Last time we went to Bham, he wanted some fish. So, he got some fish! This time he wanted a new Wii game, so guess what? He got a new Wii game! Maybe not the best parenting, but hey, it works! :)

A Mother's Heavy Heart..............

A mother's worst fear is for anything to happen to their child that would jeopardize their health and well being.

Earlier this week we started out with the hustle and bustle of back to work and back to school after the holidays. Normal week, everybody is well, and all is normal. On Wednesday I was working, getting off early and taking Kade to Children's hospital to have his sleep study done.

When Kade was around three years old, I started noticing that he was breathing funny when he was sleeping. There would be pauses when he would not breathe and then the next breath would be really deep and long as if he was catching up for the few breaths that he missed. This started happening alot and Andrew had me convinced that kids just breathe funny. Okay, I thought, I guess he is right. Some kids do seem to breathe funny and do strange things when they sleep. A year goes by, Kade is still have the pauses in his breathing and I mention it to our family doctor during a visit for strep throat in which it was mentioned that we get a consult for Kade having alot of throat infections and indeed I needed to mention to the ENT that Kade was having pauses in his breathing during sleep because that really needed to be addressed.

We consulted with an ENT and had Kade set up to have his tonsils and adenoids removed in which the doctor felt that this would cure some of the apnea Kade was having. Months went by and I noticed that there had not been that much of a change since his surgery, except for the fact that he was not having any throat infections anymore.

Kade started Kindergarten in August of 2011 and I noticed in the late afternoons I was dealing with a cranky little guy. I knew he was probably not sleeping well and was well aware that my child might actually have sleep apnea. It seemed to be getting worse. The pauses started getting longer and my poor baby was obviously overly tired during the day and falling asleep alot. Every Sunday like clock work Kade would fall asleep at church during preaching in which you could hear his heavy breathing and snoring. It was time to do something.

I made an appt. with Childrens Hospital to see Dr. Peyton Shirley, a pediatric ENT. My greatest concern was that there was pauses of about 15 sec. where Kade was not breathing during the night, it was happening alot, that he had started school and this seemed to be affecting him, and I wanted it checked out. I also told him that Kade stays sick alot with allergy symptoms, that almost always progressed to sinus infections, and that this was continuous. So at that visit, Kade had a severe sinus infection that needed to be cleared up first, then we would need to wait a month, come back, and have a sinus CT done, that would show any abnormalities that would block his breathing and therefore cause him to have sleep apnea. We went back in a month, sinuses cleared up, his CT scan of his sinuses looked completely normal, and I was asked if he was still having breathing problems since he was not sick at this time. Duh? Yes!!! This has been going on for a while. So, Kade was set up with an allergist at Children's and a sleep study would be scheduled. This was in October. Appt. with the allergy clinic was in November, and sleep study was scheduled for January 4th. January 4th?????? Wow, three months to get in for a sleep study.

We went to our allergy appt. and found out Kade was in fact allergic to household dust and dust mites. :S Wow! No pressure for this Mom! Dust is everywhere, I work full time, and live in a house with three little piglets, and one big pig, of which no one cleans up after themselves. Hmmmm....okay.

So, the holidays went as planned and everyone had a great Christmas and it was time to get back to the real world of the chaotic work-school schedule that allows minimal time for anything else.

On Wednesday I worked, rushed home, got Kade, and me and Kade head to Children's to have his sleep study done. I took him by myself. Being married to a Harris you learn to be independent and learn that it is better just to leave them out of most things unless there is no other way around it. Sleep study was going as planned. They had about 28 leads ( or whatever the correct word is) hooked up to Kade and had his head wrapped up to keep him from messing with the ones that were on his head. He aggravated the tech that hooked him up and after an hour of that poor man hooking him up, Kade looked up at him and said, "I'm about to rip everyone of these off!" Hahaha! Which was followed by the statement, "I just need my shotgun." The technician just looked at Kade and laughed and said that was the first time he had heard that one. I was slightly embarassed but realized they are their father's children.





We were getting ready to leave the next morning. Just waiting on the doctor to make his rounds so we could go home. I had asked the tech earlier if it had showed the pauses in his breathing, and he said that it did show the pauses but not really any snoring. At this time I was thinking that the worst case senario was Kade had sleep apnea and he would probably have to have a c-pap or bi-pap to sleep with, which was really going to be a trick. Two doctors came in, Dr. Mavis and Dr. Macris. They started with some small talk, then asked me had I ever heard of Chiari (pronounced kee are e) malformation. Yeah, I think I have heard of that before but, have no clue what it is. He proceeded to tell me that Kade did not have obstructive sleep apnea, but that he had central sleep apnea, which accounts for less than 5% of cases of sleep apnea and that he believed that Kade has Chiari Malformation in which the cerebellum, the part of the brain that is where the base of the skull and the spinal collumn meet, is protruding down past the skull and into the spinal canal. We would need to get a MRI, which he will need to be put to sleep for, and then I would need to meet with Dr. ????? and Dr. ????? because most of the time they treat this by taking a small section of the skull out to allow more room for that part of the brain and relieve the pressure that is on the brain stem so he could breathe normally and get the oxygen that he needs, but in the meantime we need to put him on oxygen at night. Next question was,"Does Kade have alot of headaches?" I replied, "Yes, he has always had alot of headaches. We thought it was due to his allergy and sinus problems."



My chest felt as if the weight of the world was on it. My biggest fear was coming true, that something was wrong with my child that Tylenol or an Anti-histamine could not fix. The doctor asked if I was scared and if I had any questions. "Yes, I'm scared, I'm very worried, but I don't have any questions at this time. We will just wait on the MRI." We waited on the nurse to come in and ask us where we lived so they could set up in home oxygen for Kade to use while he slept. I sat in the room, alone, with Kade playing and somehow found the strength to not shed a tear and to smile at my child when he looked at me. I didn't want him to get any anxious feelings or wonder why Mommy was upset because I realized he would see alot more of this place, and the longer we could help him to not associate this place with negative feelings, the better. I waited until I got in the car and my eyes were hidden behind my sunglasses and my sobs were unheard due to the radio, to have my breakdown. About 30 minutes after that, I called Andrew to tell him the news.

The oxygen has been set up, Kade is in Mommy's bed, and is doing well with that. He is still the same little boy he has always been. We just now know what is going on with him. The doctor assured me that he is the same little boy, will grow up normally and cause me all the problems any other kid would. We just have a little stumbling block along the way.

We are now waiting on our appointment for the MRI, which is taking longer to get scheduled than I anticipated because it has to be scheduled through the OR because he has to be put to sleep. I let them know I was getting antsy and they assured me that they would have it set up by Monday.

Please pray for our family during this time. When I think of Kade and what he is about to go through this scripture comes to mind:

"For I know the plans I have for you," declares the Lord,"plans to prosper you and not to harm you, plans to give you a hope and a future."