Baclofen Pump Surgery

After much thought, prayers, advice and consideration we have decided to go forth with this method of treatment for Truman. It is called an Intrathecal Baclofen Pump. It is used to treat patients with severe muscular disorders. A pump is surgically inserted in the abdomen and a catheter is inserted and connected to the spine. The placement of the catheter is determined by the area in which the treatment will be. In Truman's case it was placed just above the neck to deliver medication to treat the muscles below. Because Truman has severe spacticity ( tightness and constantly contracted muscles) this procedure has been recommended to better treat him. The pump is roughly the size of hockey puck and is filled with Baclofen (a muscle relaxer) that is strategically dispersed into his spinal fluid that delivers the medication directly to the nerves that control his muscles. He was getting Botox therapy in his Biceps, Triceps, Calves and Inner Thighs to help reduce his tone. This would happen every 3 months and painful, yet effective. The pump will now replace the Botox injections Yay!
Surgery went as well as could be expected. His Orthopaedic Surgeon, Dr. Jeffrey Shilt, did the surgery. He is very highly recommended and a great surgeon. There are only 2 Pediatric Orthopedic Surgeons in the Treasure Valley. Dr. Shilt is great. The surgery took place at St. Alphonsus, not my first choice in the beginning, but has turned out to be a great choice. The staff and doctors here are amazing. We are still here at the hopsital on the 5th floor in the peds unit. Very nice and spacious.
Truman has an incision on his abdomen, just opposite of his feeding tube button and then a small hole in his lower back. His pain is being managed well and he is comfortable. He slept pretty well all night and is now trying to eat and digest. Hopefully we will be able to go home today but I am not counting on it.
Thanks to all of our friends and family who have wished him well and sent their love. It has made this more bearable.

Bells and Whistles

Last night as Tom was hooking Tru up to his feeding tube the pump would not stop beeping. To back up a little bit...when we put Truman to bed at night we attach his feeding tube to him so we do not interupt his sleep when we plug him in to the pump nightly. Tom came in to our room after hooking him and made a comment about how the pump continually beeps an error alarm sometimes ( after two years of nightly feeding tube hook ups we still havent mastered the pump)...during the beeping Truman continues to sleep peacefully as if there were no interuptions or outside world. He is not disturbed in the least. I thought to myself...I am immediately awakened at the slightest noise anywhere. I am not sure if that is my motherly instinct or tghe fact that I am a light sleeper....the two could be connected and probably are. Anyway, back to the point...I also thought to myself that little Truman has been sleeping through alarms and pumps and noise since he was born. I often wonder how sad and abnormal it is for a child to be so used to alrams and pumps and rustling that he can sleep right through it. Maybe it is "normal" for him and I should stop worrying myself about things I can not change. (the funny part is...he can't seem to stay asleep when I want to take a nap) Is that divine intervention or just motherhood in general? I am going to step out on a limb and guess that it is motherhood.

Truman was having a seizure. This is a typical seizure for Truman. He has them about 2 or 3 times a month. They are considered grande mal seizures. Truman aslo has focal seizures and starring seizures. The most common seizures he has are focal seizures which he has several throughout each day.

Drinking from a Straw

We were at dinner a few weeks ago and thought we would try giving Truman a drink of water from a straw ( we left his cup at home) He totally did it!!!! We have been working on that for about 6 months now. It is the little things that excite us!

My Daily Schedule- Trumans POV

What a busy day I have. Mondays I usually get up and help my mom take Boston and Carson to school. She needs lots of help so I try really hard to do that. I try not make a stinky in my diaper right before we leave but sometimes it is really hard. After we drop the boys off at school it is off to feeding therapy with Jen. I love her. She is very funny and makes me laugh a lot. We start out with some stretching so that my muscles are ready to work. She likes to massage my mouth and tongue and gets really excited when I can swallow within 1 to 2 seconds. I got to practice sucking from a straw. I did it. Duh! It's not rocket science...it is just hard for my body to do what my brain tells it to do.

After feeding therapy we go home to watch some PBS. I love Clifford. Playing with my mom is fun too. My babysitter Brenda gets to come play with me all day. Except for when I go to JumpSTART Preschool. I get to play with my friends and teachers. I think they think I am working but really I just like to play.

I am going to go to bed now because I have to get up in the morning and go to preschool at Taft and then back to JumpSTART. I love school. I miss my mom a lot though. I think she misses me too beacause all she does is give me kisses and hugs and makes me talk all the time. She has to work on Tuesdays so I get to play with Brenda again. Woohoo!

Scoliosis

Today we learned that Truman has Scoliosis. His spine is curved at 30 degrees. The orthopedic surgeon explained to me that children with cerebral palsy are at a greater risk of developing scoliosis. Usually at this age it is not this far progressed but as Truman would have it he doesn't typically play by the rules. The exact treatments at this point are undecided. It looks like he will most likely have to wear a brace at night and an intrethecal baclofen pump will be inserted into his abdomen. An intrathecal Baclofen pump is a pump that is roughlty the size of a hockey puck that will deliver a the medicine Baclofen. Baclofen is a muscle relaxant medicine commonly used to decrease spasticity related to some types of Cerebral Palsy. Spasticity is a motor disorder characterized by tight or stiff muscles that might interfere with voluntary muscle movements. Baclofen can be taken orally or delivered into the intrathecal space. The intrathecal space contains the cerebrospinal fluid, the fluid surrounding the spinal cord and nerve roots. Oral baclofen causes side effects that might limit its usefulness. Of the oral baclofen delivered throughout the body, only a small portion goes to the spinal fluid where it is needed to work.
An intrathecal delivery system, which provides the baclofen right to the target site in the spinal cord, is an effective way to deliver the medicine.. .so this therapy combined with a back brace will hopefully at least get us through about 7 more years until he is big enough to tolerate spinal surgery. Truman's orthopedic surgeon and Physical medicine doctor have conflicting opinions about the pump in Truman. His is still very small and his body may reject it. So we will see what the verdict is as soon as they conference.
(The definitions of medications and pump explanation were found on www.clevelanclinic.org)

Meeting Baby Boy Tueller

I came out of surgery with my sister by my side along with Tom and Boston and Carson. They comforted me as I did them. When I was released from surgery recovery I was wheeled into a secret garden, hidden from the outside world...the Saint Luke's Newborn Intensive Care Unit. That is where I met my fragile newborn infant. I am not completely clear as to what emotions I felt at that moment or what I saw, but I can recall the fear and anxiety and terror. My baby boy looked like he belonged is a science fiction movie. His skin was transparent, he could not breathe on his own and he was attached to a "gazillion" wires and tubes. At this point he was inside an open bassinet that had a heater in it so that the doctors and nurses could continue to work on him and get him situated. He did not look real. I could see his chest rising and falling rapidly with the assistance of an oscillator. We had no name picked out. It would take about a week to come up with a name that seemed for this baby. I don't think I stayed very long.