Whirl wind.... oh my GOSH!!!

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We met with the Neurosurgeon on July 22nd and he went over what they found that there was water on the brain.  He wasn't sure what to do until we see the eye doctor since other then headaches he doesn't have any symptoms of the hydrocephalus.  So we set up an eye appointment in less than 2 weeks on the 9th of August.  So then it was just a sit and wait for the appointment.  As we wait we work on getting our house put in order and getting Nikole ready for a trip with family.  So we see the eye doctor on Friday(8-9-14) and he was easy going until he looked in Rhett's eyes and instantly told them to page Dr Kestle(Neurosurgeon) and that there was swollen optic nerves.  He looked at me and said set up an appointment to come back three months to check his eyes again and have the hydrocephalus taken care, and then again asked someone to page Dr Kestle and walked away.  I went down to the office area to see if I could just talk to Dr Kestle before I left the building.  He wasn't there so we left and I waited for the phone call from the doctor.  Didn't get a phone call Friday, so then it was nail biting through the whole weekend, wondering what the heck was going on. Monday came and I was looking at the phone waiting again. Didn't get a call again! :(  So by Tuesday I was stressed to say to say the least. I knew we had an appointment in the afternoon because I set it up when I went to his office to talk with him on Friday.  I figured I would get a few things done before the appointment and then just ask why I didn't get a phone call when I see him that afternoon. So.......

(What would you do?) I get a call at 9:30 ​Tuesday(8-12-14) morning telling me that Rhett was on the schedule for the OR​ Wednesday(8-13-14)! We hadn't talked to the doctors so it was like we were in the dark.  She said that she didn't want me to get a call from the hospital before I knew.  Later that day around noon the doctor called me and said he would see us tomorrow.  I told him that I wasn't going to have to explain this to Rhett on my own and that Rhett does have a voice and he needs to voice his opinion and be heard. He also needs to understand why the surgery is set for tomorrow and answer all the questions that he has. So he better plan on seeing us at 3:15pm at our time of appointment so he can go over everything with Rhett.
Apparently when we finally saw the doctor that afternoon he informed us that the eye doctor saw swelling optic nerves and some areas that were hemorrhaging. He said that he couldn't say go to school don't worry about it and come back when it is Christmas break. He said that consulting with all the other neurosurgeons that they would treat the hydrocephalus. He said he would not wait until Christmas break to have the surgery.  It didn't have to be Wednesday but it should be in a few weeks.  We asked questions like crazy and made sure Rhett understood. We gave him the option to have the surgery Wednesday or a different day in a few weeks.  He was ok having surgery the on Wednesday that way he could have it before school started.  Here is the before surgery pictures.

I know it is blurry but the grey butterfly in the middle of his brain is the water and it is three times larger than it should be, causing pressure to build in his head.

This is a clear picture of the side view and as you can see the water is not draining.

So this morning we headed out he is fine and happy. Talked to the doctors when we got there and then was taken back almost as soon as we got there, since they were running ahead of schedule and they were all waiting for him. He was the star today!!!

First time choosing to walk to the OR with the anesthesiologist.

The oxygen is too heavy for her to carry. :) Daddy taking a picture of the mark on his head made by the doctor.

My favorite picture!!!  He is growing up too fast!!!

Giving hugs before going off on his own into the OR.

My brave boy!  Ready or not.

So Dr Kestle (who by the way is an great doctor) went on the right side of his head near the top front of the head to stick the smallest draining tube they have into the water through the brain and then run the tube down the inside of the body behind the ear down to the abdomen area.  When we met with the doctor after surgery and before we saw Rhett, he said that there was an extreme amount of pressure built up.  When he put the tube in fluid shot out in a stream which is not uncommon but.... most of the time it drips according to the doctor.  He was grateful that we didn't wait and do the surgery at a later time.  We were both able to go see Rhett in the recovery room.  It used to just be one person at a time, now it is up to two! :)  Yeah!!

In recovery.  I asked him if I could take a picture for his sister and he said yes.  I got him to smile!!  Ok I guess it was his sister that got him to smile, but I am totally taking credit for it.

Rhett not enjoying seeing his intubation tube.  Told us that we were not going to keep it.  So of course I take a picture so I can keep it without actually having it. HAHAHA!

He is just relaxing picking out a movie to watch.  You can see his three bandages.  Top of his head, behind his ear, and near his belly botton.

Looking down on him and you can still see the bandages.

He will hopefully be up and moving better by tomorrow.  He says he feels bruised along the right side of his body where the surgery was and that his whole abdomen feel sore.

I will keep everyone as updated as I can, but this has been a whirl wind of a ride for us.  This whole thing was also very unexpected since this was only discovered July 16th by MRI.  That was less than a month ago!

Angel's Hand Foundation 7-19-14

Oh how I wish we could have stayed at the park with Angel's Hand Foundation all day!  It was fun to see all the people and see all the cars and motorcycles.  But with the air quality as bad as it is and the heat it was just too much for Rhett and Dylan.  Rhett and Dylan were starting to over heat with ice and with cold water and shade.  There was nothing that I could do about the air quality but Rhett so wanted to go, even though he had spent the night in the hospital for a sleep study.  After a restless night sleep and early morning we went home and got ready to go even though we left late.  We got there and there was a ton of cars and I pushed Rhett in the wheelchair and Nikole pushed Dylan in the stroller.  I love the support I feel from the families and friends of Angel's Hand Foundation.  It is nice to know that there are others that struggle with medical problems too.  No they don't have the same medical problems that we have in our house but they can understand the toll that it takes on the kids and families.  I am so very grateful to Todd for introducing me and my family to Angel's Hand Foundation.  We have been with them for quite a while and we love being able to make memories while we have time to make them.  It is nice to have good memories while we struggle through the rough times since we seem to have several rough times.  For those families like mine we cannot afford to do fun things with our families.  We struggle with so much as it is, I am beyond grateful for Angel's Hand Foundation and the fun things that they are able to pull together for us.  My kids look forward to being able to spend time doing fun things instead of always being at the doctors office or stuck inside.Thank you so much for everything that you do for our family Mark and the Angel's Hand Foundation family!

everything up to present! The new info is there promise

We went to the air show they had at Hill Air Force Base the last weekend of June.  It was really hot but we enjoyed our time there.  I was able to nab some awesome pictures.  Proud moment here. :)  Here a just a few of them.

Yes 79 pictures are just a few.  LOL!!

The next week was the week of the 4th of July, it started like normal but with more stress.  I am not sure how to describe it but something was really bothering me and I couldn't place it.  By Wednesday I was on pins and needles.  I had to take 3 kids to the doctors and felt like I was at my limit.  I ended up snapping or having a breakdown however you call it, before I even left my house for the doctor’s office.  As I drove to the doctor’s office I was in a daze.  I sat there and tried to listen to the doctor as they would speak to me, but I honestly don’t remember what they talked about.  That night I took the kids to Fantasy Con with Angel Hand's Foundation.  The kids really enjoyed it but mostly the snakes.  Ewww!!!  I gave Nikole and Gavin the camera so that way I could push Rhett in the wheel chair or Dylan in the stroller.  Here is some of their handy work with the camera.

I know some of those pictures are blurry but the kids enjoyed taking the pictures.

Dylan was vomiting the whole day of the 4th so we stayed home and didn't even do anything.  I took Rhett in to the lab for a blood draw to find out why he is having these headaches.  We found out Rhett had higher levels of CO and a lower blood count.  Out of all of that I was really stressed and needed to just stop doing everything.  Having this breakdown was a wake up call for me and my family.  I cannot do everything alone.  I need help and everyone in my house needs to step up and help.  Back to the week of the 4th... trying to get my house under control and get everyone healthy.  As I am watching Rhett take a lot of medicine to help combat these headaches that he dealing with every day.  In my gut I feel like something is wrong, there is something going on that I cannot fix and that he needs more then just iron to help solve the problem.  So the following week I contact the doctor again and let him know that Rhett has still be having these headaches.  He said he was going to look into insurance to make sure we were not left holding the huge bill that usually follows the major diagnosis around.  As I struggle to get Nikole ready for girls camp and making sure all the kids I am to care for are ok and well.  Then Wednesday the 9th the youth were going boating in the afternoon.  Rhett really wanted to go and I still hadn't heard from the doctor and since I had all my kids I decided I would take them and just keep an eye on Dylan and Gavin since Nikole and Rhett are part of the youth group.  We went to the lake and I got a few pictures.

After the lake visit we decided that we will take the kids fishing with their cousins.  The kids were so excited and had a blast!  Here are some of the pictures that I had taken since I was the only one that wasn't having to run after a little baby. This fishing trip was Saturday the 12th of July, and Nikole still isn't packed for girls camp!  At least we can do this before

Since I had not heard from the doctor about the tests they wanted to do I had to call the doctor and find out what the plan was.  He said that he had sent in orders for a MRI and a sleep study.  So I called to set up the MRI and sleep study.  I set up the MRI Wednesday after the appointment with the pediatrician.  So Monday morning I sent Nikole off to girls camp and prayed that she stayed safe.  Wednesday came I and I took Gavin to counseling where he fell asleep.  LOL!!!  After that my husband and I met with the doctor to go over the paper for life sustaining treatment for Rhett, just in case something happens while he is at school or out in the community.  After that We went and picked up the boys from grandma and grandpa's house and headed to the hospital for the MRI.
We were the only ones there and grateful that we were all together.  We left him with the tech and went to the waiting room.  The boys and daddy went first since I was still feeling out the paper work.  As I was sitting there by myself with the technician after Rhett was already in the room being scanned just a little to make sure he was int he right spot and such.  I looked up as I was trying to remember all the medicine that he is taking and as I looked up something caught my eye.  I looked at the screen of the computer that she was using for Rhett's scan and saw this pretty good size white blob like thing.  I know that wasn't the brain, since I have seen scans before.  My heart sank before the tech sent me on my way after I finished the paper work.  As I sat there with the other boys and my husband my mind was blank.  We didn't really talk we just sat there and watched the other boys play.  After 2 or 3 of us used the bathroom while waiting a doctor came out and asked if we were Rhett's parents.  When we said yes he looked at us and  said, "Rhett has hydrocephalus.  It is quite a bit so it might have been growing over the years.  You need to see a Neurosurgeon.  It doesn't have to be tonight but it should be sometime soon." As I sat there and listened my heart dropped I know what this means for Rhett.  I don't think he knew or anyone else, but I have been around lots of medical things and I have researched lots when I have come across things that I don't understand.  So I talked to the doctor on Thursday and he called to let me know what the results were and to let me know what needs to happen.  He called me back about an hour later to let me know that he had set up an appointment with a Neurosurgeon for us since he thinks Rhett needs to be seen earlier than later.  We have an appointment soon.  I will have more info soon and will update sooner.