Monday, October 3, 2011

And that makes 57 gray hairs...

A lot has happened since my last post. BIG things, and some small but while I am still coming to terms with the fact that my child can not weight bear through his legs let alone even sit up much unassisted God has had some big plans for us.

On Thursday September 22 Keegan took his last dose of Dexamethasone (Steroids). We weened him so we didn't think much about it, you can't just come off this stuff cold turkey, there are many side effects both on a off of it that have to be watched. This was a happy day as we thought he would start to loose some of the "Steroid face" that many people have come to know and love {We get LOTS of comments about how cute his cheeks are}.

Friday September 23rd Keegan turned 2 years old! Holy Moley, I have a two year old! We had a pretty fun day minus the speech therapy session with Mrs. Toni but really even that wasn't too bad b/c Mrs. Patty got him a HUGE smiley face balloon that we played with while Mrs. Toni was messing with his mouth. We hung out at home most of the day and went to RiRa's (an Irish Pub) for his birthday. They were doing a "give back" night for us on his birthday with 20% of the total food sales of the day going to us!

We had a blast with Aunt M, Aunt Abby & her boyfriend and Grandma. We got home and he got to eat some of the cake I made him. I had hemmed a hawed about what kind of cake to purchase him and decided I wanted to go with the theme that my sisters and I grew up with. Every year before our birthday our mom would take us to the craft store and we got to pick out the Wilson Cake pan that we wanted for our birthday, I have found memories of the different cakes mom would make us.

So when I decided that is what we were going to do, I ventured to the different craft stores in our area in search of an Elmo pan; this kid LOVES his Elmo. Finally found it at Hobby Lobby. So Keegan had his very own homemade Elmo cake. We gave the whole cake to him to dig into but he HATES to get dirty so it was kind of a waste but we got some great pictures. We then opened gifts. Tons of people sent him cards and presents-THANK YOU to ALL!

After our little birthday celebration we gave Keegan a bottle and got him ready for bed. That is when we started to notice he was acting a bit off. He normally finishes his bottle in record setting time but this time he drank it pretty slowly and left just under half of the bottle unfinished. We laid him down for the night and thought he just had too much cake and wasn't really hungry.

On Saturday the 24th I went with my mom and sister to the 4H Craft Fair. He didn't act weird the whole morning so I thought maybe the bottle from the night before was a fluke. We came home and I put him down for a nap and when he woke up around 3 o'clock I noticed immediately that the area around the tip of his shunt was swollen. Within 15 minutes we were out the door on the way to the emergency room and a call was placed to the neurosurgeon on call at Riley.

::Warning, I may get a little livid about our ER visit in the section of the story that follows, I apologize up front::

We walked into the ER at 4pm. We got in immediately and were placed in a room. Our nurse, a big mass of a man, came into the room to go over why we were there, his meds, and usual "stuff". He got to the meds part and rattled off 3 drugs, one of which he is still on for his seizures and the other are kind of "as needed". When I told him he has a TON more drugs he is currently taking including antibiotics, anti fungals and other drugs he just shrugged and kept going {appalling piece #1}. Shortly there after the Doctor, if you want to call him that, came in. He looked at Keegan who was sitting up in the bed playing with Ry and said "Whoa"{appalling piece #2}. He saw his shunt and thought it was very infected looking (what we had to point out was that the part he thought was sooooo bad was actually the bulb of the shunt)---ANYWAY--He then said "who put that in" when I commented Dr. Ackerman at Riley he said "do you have a number for her?" I said yea and proceeded to hand him her business card from the little Rolodex I keep with me at all times.

He placed the call while we waited and a short time later came back into the room to tell us that the Resident on call at Riley said that if it a) wasn't red b) wasn't leaking c) he was acting normal d) didn't have a temp then there was nothing they could do {Appalling piece #3}. I was in shock. I knew there was something wrong and made a point to ask the doctor if they were just waiting for it to get worse. I said something to the effect of "well, we can catch this early enough that he doesn't have to be hospitalized BUT NO, its nothing" I was livid. By this time it was 4:30 and the doctor came back in the room to tell us he was gonna finish his paperwork, there was nothing they were going to do for us and to call Dr. Ackerman's office the following Monday.

I was pissed to say the least and appalled that they would send a child that can go from okay to not okay in the matter of a day back home. I will be having words and filing a complaint with the hospital yet again and taking him to the only other hospital in Evansville the next time something happens.

Sunday he woke up, Shunt was not any better or any worse and he continued to not be hungry. He would only take half his bottle and later on in the evening he started to vomit. My brain went into ::FREAK OUT MODE:: as I tried to tell myself there was NO way the cancer could come back already...right?!?!

I placed the 2nd call of the weekend to Dr. Ackerman's office on Sunday Evening and they again told me wait until the morning and give her office a call if the shunt didn't look better and he continued to throw up.

Soooo what do you think I did, yep that is right, I called them first thing Monday morning, Dr. Ackermans nurse scheduled an appointment for Keegan on Wednesday morning along with a CT and Shunt series. So Monday we played it cool and really didn't do anything to strenuous and Tuesday the same except I had an interview at JoAnn Fabrics at 9 in the morning. I applied a couple of weeks ago for a seasonal job. Nothing major just something to get me out of the house since the cooler days are coming and we wont be able to get out as much.

We left for Indy later in the afternoon arriving at our friend Christine's house around 7 or so. We went out to get some food then settled in for the night. I was exhausted and since we had to be at Riley between 730-800 for some labs for his Endocrinologist I wanted to get him and I to bed early.

Wednesday morning we got to Riley and got our blood work done but not without a vomiting spell of just stomach juices ...gross I know. Then we had the CT and Shunt Series done. After that we went up to see Dr. Ackerman. Long story short, and between much hemming and hawing on her part, she did a shunt tap. The pressure was fine. She then decided to turn his shunt down to 80 from 100, he has a programmable one. This will allow less pressure in his head and drain more fluid. We left there with strict directions to call the next day and let them know how he was doing.

Thursday morning around 3 am I gtubed a bottle (8oz) and 60 mL's of water. No sooner did I start the water than he was vomiting it up. You see he fell asleep at 5 pm on Wednesday and didn't wake up until 7am on Thursday so he hadn't eaten his late bottle. Sooooo when Dr. Ackerman's office opened at 8 I was on the phone updating them on his status. Almost immediately and without hesitation they told us in not so many words to get our happy butts up to the Riley ER. We would have another Shunt Series and CT done.

We checked into the ER right at 3pm Indy time. They got us in a room very quickly and got the CT and shunt series done and brought us back to our room. Dr. Smith, Dr. Ackerman's co worker, came down and told us the scans looked good. No swelling or gross changes from the scans the day before. Then Dr. Shih came in, off the clock, and was just talking with us about how he was 99% sure this wasn't tumor recurrence at this time. The ER resident then came in and told us they were going to go ahead and admit us for 23 hour observation since he wasn't eating. At this point they also decided to restart his steroids because he could be having some swelling (in his brain) and side effects from the steroid ween that was done the week before. They gave us 5mL's of the decadron while in the ER...and then we waited...for another 5 hours. What was the hold up you might ask.....well it was for the HEM/ONC Resident to come down and admit us......Then guess what....we waited nother hour for a "empty room".

We were finally settled into our room at 11pm on Thursday....yes 7 hours after we entered the ER. Keegan began eating regularly the next day. Thank Goodness for answered prayers! We ended up leaving Riley around 12:30 on Saturday afternoon with steroids on board and Keegan holding down food! We restarted the steroids and are going to take a much slower ween and at the first inclination of a problem I am supposed to go back to the last dose of steroids that we were on prior. It definitely scared me but I am soooo glad we had it checked out and he's feeling better.

As of today he is doing and actual normal. The shunt looks great and he continues to eat.....

Stay Tuned for a BIG Announcement!


  1. Beth,
    Thanks you for this update! When I saw your messages on FB for prayer I just prayed and prayed for Keegan. I am so glad to hear this was just from the reduction in steroids!!

    Excited to hear your big news!


  2. Oh my goodness, what a roller coaster. I don't know how you keep it all together. You are such an amazing Momma. We're so glad to hear Keegan is doing well now and pray for him daily. Excited to hear your news :)


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