Friday, April 30, 2010

We need an Allelujah STAT!

Today was a fabulous day, wait I will one up that, today was a SUPERCALIFRAGILISTICEXPIALIDOCIOUS DAY! Today we went to see Dr. Ackerman for our follow up visit for the surgery to put the shunt in Baby Kee's brain. Our appointment was at 10:45 am Indy time so we went ahead and drove to Indy last night and got our little e $89 a night studio apartment about a mile from the hospital, it's our new home away from home!

We arrived a Riley a little early after going to Hardee's to grab some grub. We checked in and waited, did I mention we bought a new stroller? Its a Peg-Perego and Mommy LIKES! I normally wouldn't purchase something this pricey but we didn't buy a new travel system before he was born, my sister in law found our old set at a yard sale for $50 and we are getting so much use out of our stroller right now I wanted a good and comfortable one for him. I found this strollert

at Babies R Us for $159.99 regularly over $200. I used my handy dandy 20% coupon, the gift card I received from my Agent for Administrative Professional day, and a $55 stash I didn't know my husband had that he graciously gave for the stroller fund! Out of my pocket was only $42 (because I had to buy him 2 new packages of pacis, since we loose 1 a week, and Hyland's teething tables because I heard they work wonders!)
So......back to my they got us into see Dr. Ackerman rather quickly.....we sat and talked about how he was doing. No problems so far and she said everything looked great! She gave us her business card with his shunt settings on it. If he has to have an MRI the shunt will have to be reset because it is a magnetic one. She then sent us down to Radiology to have a CT done. Herb the CT manager came and brought us back, he remembered us from 2 weeks ago! I could not believe it, as many kids as he sees, he remembered us and baby Keegan! That right there is one reason Riley is just so amazing! But anyway so we got the CT done and headed back up to Dr. Ackerman's office. She came in relatively quickly and told us everything looked wonderful, the shunt was working like it should and already making progress. She brought us in a room with a couple of computers and had his 2 recent CT's pulled up on the computer. We compared the CT the morning after surgery to the CT he had done today. His "ventricles" or spaces that were holding fluid in his brain were already a tad smaller. She was very please as were Ry and I. We left there feeling REALLY good, something going right for us for once!

After that we headed down to the first floor, our genetics appointment was scheduled for 2:20, it was 12:30, so it was a long shot but we checked in hoping they would get to us sooner than 2:20. One of the nurses came out and told us Sarah, the Nurse Practitioner for Dr. Walsh, could see us earlier! We were more than excited. She led us back and after waiting for about 20 minutes or so, which for some ungodly reason all doctors seem to make you wait in these tiny room in agony, Sarah came in. She talked with us for what seemed like forever. We talked about his development, his recent surgery, DNA testing and a mirage of other random topics (like my crib being recalled-ugh! that is another topic for another day!). She finally evaluated him and said he had better tone then he did in November but he was still rather "floppy". I told her I have set a goal in my head to reach by his first birthday and that would be to sit unsupported, she thought that was very doable! This appointment went rather smoothly, and I am so glad I called and rescheduled it for a day we were already up here because it seemed rather pointless and if we traveled the 3 hrs in our truck with the way gas prices are for that, now I would have been ticked!

So today was a GREAT day for us, I feel so blessed to finally be hearing some good news and able to share it with our blog family! Thanks again for all the support and the MANY MANY prayers that have been said for us!

Is it finally our turn to have stuff go right? I sure hope so!

Tuesday, April 27, 2010

The Second Longest Day of Our Lives

April 15th we took our one and only Booga Booga to Riley to have a shunt put in his little head to help drain the CSF or Cerebral Spinal Fluid. I am gonna start this story VERY early in the morning and at the VERY beginning of the second longest day of our lives, apart from Keegan's day of birth.

I woke Keegan up on the 15th at 4:30 am because the last time he could have formula was 5 am. After this he could have pedialite or water until 8 am and after that nothing. NOTHING, ABSOLUTELY NOTHING until after surgery. I was beyond worried because we weren't scheduled to head into surgery until mid afternoon because our Neuro Surgeon had a lecture to do in the morning and since we were just cleared for surgery at 5 pm the day before we were an "add on."  We got to the hospital around 9 am, checked in on the second floor. Our nurse met us at the check in desk and brought us back to our little waiting room. It was really no bigger than some people's walk in closets. Ryan, Keegan and I started the LONG journey of waiting in this tiny room. It had 2 chairs, rather hard if you ask me, and a chair that folded out to a cot like bed.  We got settled, turned the TV on and began our 5 hour wait. I had brought snacks, books and toys because I knew it was going to be a LONG day.  We changed Keegan into this lovely gown circa 1973, picture #1,  and put on his little sockies with the grippers on the bottom because everyone knows that 6 1/2 month olds will get up and walk around the hospital! Late Morning Kee began to get hungry, and by hungry I mean starving.

Poor little booger hadn't eaten since 4:30 am and there was absolutely nothing I could do to help him.  He started crying, the crying commenced to screaming and when a nurse came in to say she was paging the OR to see when the were ready for us, I knew it was bad. Not only were our poor ear drums blown out, but we were disrupting ALL the people around us. We finally got him calmed down and he fell asleep on his daddy. Curled up like a big boy on his chest, evidenced by picture #2. This process of screaming and falling back asleep commenced for the next couple of hours and around 2 pm Indy time, the anesthesiologist came in to talk to us about how they were going to sedate baby Kee. Surgery was getting closer and the knot in my stomach became bigger and bigger. Around 2:30 a cot was wheeled to us; it was GO TIME! We laid our sweet baby Kee, who had NO IDEA what was happening to him, on this HUGE cot with railings all over; similar to a cage. He looked so scared, there are no words to describe how you feel when you place that child on the stretcher and just pray with your whole being that he will come back to you and in better condition than when he left.

The OR nurses wheeled him away and we were instructed to then check into the waiting room on the 3rd floor. We were told after we checked in to go get something to eat and come back up to the waiting room for our hourly check ins with the nurse on duty. We went down to the cafeteria, it was closed-we hadn't eaten since breakfast that morning and were starving. They have a McDonald's in the hospital so we went and grabbed a burger along with all the interns and residents at Riley and on the IUPUI campus. We brought our greasy burgers and HORRID iced coffee up to the waiting room where we sat in anticipation for 2 and a half hours. We got an update shortly after 3 that he had been put under around 2:52 and so far everything looked good. I began updating my face book status to allow friends and family in on what was happening. I also got to play Words With Friends, my newest, favoritiest addiction. Around 4ish the nurse came in to let us know everything was proceeding well and the way it looked they were close to finishing up. I was excited to hear this and was eagerly anticipating holding my poor little baby.

A short while later Dr. Ackerman, clad in blue scrubs, made her way to us in waiting room. I was never so happy to see her in all my life! She came to tell us he was out of surgery, he did very well and that we should be called to go into the recovery room soon. She put his shunt in the back of his brain ran the catheter down the right side of his body where she "installed' extra tubing so as he grows it will stretch out. The catheter drains into his stomach cavity where the extra fluid is absorbed into his body and expelled via urine or waste.

A short while later the phone at the waiting room desk ran and the nurse at the desk approached us to tell us they were ready for us in recovery on the second floor. I practically ran to the glass elevators and it couldn't go fast enough one floor down. I took my right out of the elevator, left at the end of the hall and left at the end of that hall, leading us right into the recovery room. I had heard the nurse explain the directions to some of the other parents a million times in the last 2 and half hours waiting for it to be our turn- AND NOW IT WAS!

We stepped into recovery, lots of machines beeping away and nurses busily rushing around. Little Boog was sprawled out in his crib/cot hooked up to a bunch of machines and being carefully monitored. He had been given some sugar water and the nurse brought me a 2 oz bottle of Enfamil so my starving baby could finally eat. We were down in recovery for about 20 minutes or so until they moved us up to the 4th floor in the neuro/heart unit. Keegan was the first bed in a room at the end of the hall across from the nurses station. This made it very nice AND easy in case we needed to get someones attention in  hurry. We settled in. It had been a long day. His nurse gave Ry, my mom and myself the tour of the unit showing us where the playroom, bathroom and parents lounge were. I was very impressed. His unit was a locked down unit meaning you had to have a password to enter and not everyone has a password; this made me feel very secure. The parents lounge had recliners, a TV a shower and washer and dryer. It also had COFFEE! We found out shortly after this wondrous tour that Keegan is allergic to Morphine, yes that is right, he is taking after his daddy already. He turned BRIGHT AS A TOMATO! The only exception was some white spots on his ears and face.

Ryan stayed with him that first night, Mom and I went back to the hotel to get a good nights rest. Hanging out in a hospital ALL.DAY.LONG has a way of wearing on you. Keegan had what is called a shunt series done that night. Its a series of X-Rays showing the shunt and its track all the way down his belly. Ry said he slept pretty good that night. By the time my mom and I got to the hospital the next morning they were ready to wheel him downstairs to the first floor for a CT. Dr. Ackerman and our resident had already been in and made the rounds for the morning. Dr. Ackerman said she may not release him till the next day (which would be Saturday April 17th). I was completely okay with this because we have a 3 hour ride home from Indy and I didn't feel comfortable being discharged later in the day Friday only to get home Friday night and have problems. This way, heaven forbid, if something did happen after discharge we would have time to get up to Indy later in the afternoon!

Friday night I was SOOOOO sick of eating McDonald's so we ordered some Hot Box Pizza-IT WAS FABULOUS (in my high pitch sing-songy voice)! Their bread sticks were orgasmic times 2! We had a ton of leftovers because I overbought so I gave it to his nurses! They were fabulous and I hated to see it go to waste so I ask one of them if they would eat it, and of coarse they said yes! Friday night was pretty uneventful, the nurses continued to come in every 4 hours to take vitals and in the night they fed him and changed him for me. I didn't sleep but an hour that night because Keegan's room mate had a horrible headache and the morphine wasn't working for him. He is a 10 y/o who had a shunt put in when he was about Keegan's age. He went to Riley the week prior and was going to have have a "shunt revision". It is when they have to go in and change the settings and functionality of the shunt. They did that one  day and found it didn't work so by the next day the poor boy had to have a new one put in. The problem with shunts is you have to have that perfect balance of fluid for the pressure to be "normal". If the pressure is too low it will cause the brain to sag and bleeding to occur but if the pressure is too high you can cause strokes and other problems. Keegan's poor roommate seemed to be suffering from low pressure headaches that would come out of nowhere, I keep thinking that that will be us one day and it freaked me out!

I know I can't live our life like that. I can't be constantly thinking of the next surgery or if something is going to go wrong.  I need to keep in the positive mode thinking about how Keegan is benefiting from these wonderful advances in technology. He WILL come far and he WILL succeed! We may just have more hurdles in our race to the finish than other kids his age!

By Saturday morning we got him pooping (by giving him a glycerin suppository) and he was back to his old eating schedule. He was fussier at times than usual but over all a different baby than even a week before, You could just tell he was grateful to feel better. We packed up all of our stuff and loaded the stroller! Grandma even bought him a Tye-dyed teddy bear that says Riley on it.  We were then released by Dr. Ackerman with strict instructions that he was not to take a bath, until we saw her again, because he had dissolvable stitches in his head and his little belly (Where they fed the catheter through) were glued shut. We were also instructed to watch for any signs of shunt malfunction: vomiting, irritability, soft spot becoming hard and bulging, sleeping too much or too little, infection along the shunt tract and other scary scary signs. We are three hours from Riley; that is a long way to travel with a very sick baby! We were also instructed if we noticed malfunction or infection that we were to bring him to the nearest ER where they could stabilize him and get him safely to Riley. Fortunately we have not had to do that but the thought just terrifies me!

Thank You for all your prayers and support, it has been a rough couple of weeks. It has taken a toll on our sleep and mental health but we are coming out of it. We go back to Riley on Friday the 30th of April for a follow up with the Neuro and to get some CT's taken. We will also be seeing our genetists, Dr. Walsh. We will be asking Dr. Walsh about DNA testing at this appointment even though at this point I am unsure if I want another one or not. Having a special needs child is something I didn't prepare myself for. I always told myself that it didn't matter; and it doesn't BUT it changes your whole outlook on life. I have been struggling with an internal debate for the last couple of weeks-one part of me doesn't want the second child because I want to be able to pour everything I have (financially, emotionally, physically and so on) into Keegan and his future care. Although Hydrocephalus is a manageable problem, he has it for the rest of his life. He has to be monitored by a neuro the REST.OF.HIS.LIFE.  So that is one part of me, the other part thinks how much a sibling could benefit from him and he from them. I don't know who or where I would be without my sisters, I have learned a lot from them through the years and look forward to the years to come.  I also think about when we are long gone who will he have besides his Aunts and their families? I don't know, I know its a lot to think about at this point in our lives, but I will be 29 in July and not getting any younger.....only time and testing will tell I guess.

I promise to update more often, the last two weeks have been filled with new and exciting things. I have been hooked up with Mad Max. They fundraise for Riley. They had a HUGE rummage sale last week, we made over $1700 is rummage sales, raffle tickets for a 2009 Harley Fat Bob, T-Shirt sales, and quilt sales. What they do is nothing short of amazing. There is a Poker Run they are putting on (the 3rd annual) on Saturday May 8th. It will go from our local Riley Satellite hospital 120 miles out to the Vanderburgh county 4-H. All sales from tickets will go to Riley. They are fabulous and I have formed some great new friendships through them! I am sure I will be posting TONS of pics of that soon!

Keegan's therapy commenced last Thursday as usual. Per Dr. Ackerman "no mercy"! He did REALLY well, which his therapist was hoping he would do. She attributed the Hydrocephalus and the slow build up of pressure in his brain to the last couple of weeks of fussiness during his therapy sessions. Hopefully he will be sitting up VERY soon. One can only hope!

**I am posting this with lack of a few pictures because my stupid computer didn't want to cooperate last night! Ugh! So I will edit with pics soon and an update on the most recent trip to Riley 4-30!


Wednesday, April 14, 2010

Our First Surgery

This is just a quick update as I am sitting in our hotel room in downtown Indy. We came up today to see the Pediatric Neurosurgeon and she thinks it urgent enough that we stay. She is operating on him tomorrow afternoon to place a shunt in the back of Keegan's head to drain the fluid in his head. I will post detail later and all that good stuff but I just wanted to give a quick update!

Praying for Keegan!

Thursday, April 8, 2010

No Good Title....

You know that feeling of dread when you get bad news? I have had the feeling to many times to count since September when Keegan was brought into this world. The most recent occuring this evening just as I was leaving work to go home for the day.

Keegan had a CT of his brain done today for what our Pedi thought was "excessive englargement" of his head in the past couple of months. I didn't really sweat it, we have had them done before and nothing really ever came of it; no fluid (water) on the brain just residual blood from the uterine stroke. We got there, got in fairly quickly, and had it done. He did such a great job staying still.

When the phone call came I knew it was probably the doctors office and when I heard the familure nurses voice on the phone, chipper as always, I knew everything would be okay. I was WAY wrong. She proceeded to let me know the CT found water on Keegan's brain; otherwise known as Hydrocephalus. She then told me that tomorrow (friday) morning she would be calling Dr. Walsh at Riley, our neurogenetic doctor, and ask him how he wants to proceed. She said they will ask if he would like to see Keegan sooner than his May 24th appointment and whether Dr. Walsh wants to refer us to a Pediatric Neruosurgeon or they should.

Before the conversation was even finished I started FREAKING out. I point blank asked Mary, our nurse, what this meant. I then had to rephrase because I know what Hyrocephalus means but what does it "mean." She said she would get with our Pedi and ask him. Are we dealing with Mental retardation, seizures, eating problems???I have sooooo many questions running through my head.

I know Dr. Crecelius will get back to us as soon as possiable but it doesn't seem fast enough. I want something to be done about this yesterday. You never want your kids to suffer and when they do you just want to be able to help and take that away. I can't do that for him, I would if I had the chance. He has only been in this world a short couple of months and had to deal with medical needs far beyond his years.

I will update when I know more. Please continue to pray for us, we could REALLY use it!

Wednesday, April 7, 2010

Sunday, April 4, 2010

How do you give a 6 month old a haircut?

Today we were faced with that delima.....not only is he ONLY 6 months old, but Keegan can't hold his head up by himself let alone sit without support for anything length of time. So we did what any normal parents of a 6 month old who can't do these thing did.....

We took him to the front porch while daddy held him so Papaw Mike could trim the mop!

At first it was very challenging, you see Baby Keegan became unusually fussy; that was until we realized that it was his lunch time-DUH! Sooooo mommy ran and made a bottle while Papaw Mike contined to trim away.....

Then we worked on the sides......

Then the edges......

Last but not least we trimmed up the mullet of a back that was going on......

Now he just looks like  a trimmed up little man!



Thanks Papaw Mike for the Hair Cut and Happy Easter Everyone!

Saturday, April 3, 2010

6 Months Has Come and Gone

Keegan turned 6 months old on March 23. All day long all I could think about was "what was I doing this time 6 months ago?" Oh they started the pitocin, oh I got my epi, they realized I needed a c-section. My worries went from "when are they gonna get this baby out of me.....WOW to what doctor or specialist he is seeing when.

Monday the 29th we went to see Dr. Crecelius for his 6 month check-up. Everything looked good, he is weighing in at 20 lbs 12 oz, he is currently 26 inches long. His head circumfrence is 53 cm, up from the 46 cm at Dr. Walsh's office in the Fall. Dr. Crecelious is a little concerned about how large his head has grown so we have a CT scheduled for Thursday the 8th in the afternoon.

At the doctor's office we started getting all our referrals together for the various procedures and specialists we need to see. As it stands right now we are seeing a plastic surgeon on April 13th for the removal of Keegan's extra fingers and toe; while I think this should be a pretty cut and dry procedure I am obviously not a surgeon! On April 14th we are seeing a Pediatric Gastrointerologist for further testing into his extra gallbladder/cysts that were found WAYYYYY back Here. After birth the doctors haven't really focused on this AT ALL. Which is a bit concerning since we were followed by a Perinatologist for my entire pregnancy due to this finding. On May 6th we are going to see a Pediatric Opthamologist, the only one in our city! This is for his "lazy" eye and checking his vision for other problems. This leads us to our Semi-Annual appointment up at Dr. Walsh's office at Riley on May 28th. 

It's going to be a busy couple of months for us as far as in and out of doctors offices and procedures. We do have some big news on the AFP front, if you remember his AFP levels; although dropping, were pretty high from birth. In the fall they were hovering around 1500, when it was redrawn in January it dropped to the 500 area which was still higher than Dr. Walsh wanted it to be. Dr. Crecelious had it redrawn on Monday to find it was all the way to down to WAIT FOR IT............22! We are beyond excited since it is now in "normal" (between 11-300) area! This means NO CANCER! YEA! I did a little happy dance at my desk when the doctors office called to me this GREAT news!

Last but not least, we had Keegan's 6 month pictures taken at Penny's on his 6 month birthday. Here are some shots from that experience!

Have a very Happy Easter with Family and Friends!