Helllooooooo my long lost blog followers..... We have certainly been busy bee's this summer and on the go A LOT!! Since graduation we have been to Alaska for a 10 day visit ....thanks to my awesome family and recently just got back from Orlando for 7 days from a baseball tournament with Brooks' team at Disney's Wide World of Sports! I have lots of pictures to share and stories to tell :0)
Between Alex's therapies and Brooks' sports, my free time is very limited these days and we are always on the go. Today we ventured to Wolfson's hospital for a 12 hour day for a Baclofen Pump trial. I meant to blog earlier in the week to get you prayer warriors praying but time just slips away from me these days and before I know it, night has fallen and I'm exhausted and ready to pass out. He went under IV sedation to have a large dose of Baclofen injected into his spine. After 2 hours they do several tests and then again after 4 hours.... that's when they will really be able to tell if the meds are working as this is the peak of the dose. There has been a huge success with this operation especially with cerebral Palsy patients and you would never know they have it after they have gone thru this procedure. Well like any of our other adventures thru this ordeal, once again we are TAKING THE SCENIC ROUTE as I like to call it and a route that we know all too well! We left the house at 6:30am and arrived at Wolfson's at 7am for check in. He was weighed in ( now a whopping 185...OMG CAN YOU BELIEVE IT) and a physical therapist performed many different range of motions with his arms and legs so that they could get a good baseline reading with his limbs to see if at 4 hours there is a difference in his movement. He also had to be videoed walking etc. At 9:30 is when he was scheduled to go back and be sedated then injected with botox and the baclofen into his spinal column. Well, there was another case before ours that was taking longer so we were put off for about another 2 hours just sitting and waiting in the waiting room. Finally at 11:30 they took him back and we waited to hear. About an hour after they took him I just wanted to make sure he was doing ok under sedation with his breathing so I headed to the nurses station and asked if she would please call and check on him to see how it was going. I catch the doctors assistant out of the corner of my eye heading into a stairwell and yell her name to grab her attention. She was on the phone and actually was looking for me as she had a question from the anesthesiologist in regards to Alex. They wanted to know if Alex had any prior back problems as they were having difficulty penetrating the spinal column to inject the drug. OMG.... are you kidding me? This is the LAST thing that I thought they would have problems with lol!! They had tried 4 times already unsuccessfully and after they spoke with me were going to try a couple more times to see if they could make it work. NO SUCH LUCK! Here comes the scenic route part.... what the doctor is thinking is that when he was shot in the head and the bleeding was so profound that he may have bled into his spinal column causing scarring therefore making it difficult to penetrate the spinal column. DOES THAT EVEN HAPPEN LOL???? Never in a million years would that have even been the slightest concern to me with this procedure. I'm more worried that he won't come out of the anesthesia than anything else, lol! So this is the choice I have to make. Since Alex is under sedation we can go ahead and inject the botox or we can bring him "to" and get him xrayed, catscanned, MRI'd to find out what is causing the blockage. Here's the catch.... if we proceed and give botox.... you have to wait another 3 months for it to wear off so that we can get a good baseline reading for the baclofen trial to really know if it is working. There was no way to go ahead with the botox, get him xrayed and back in OR for procedure as they were booked with other patients. Sooooooooo, poor kid was sedated, been emotionally tramatized with all this I said go ahead with Botox since he is already under and we will wait for the trial in 3 months. He'd been thru enough today to not go thru with SOMETHING! While I am sad and feel sorry for him because it took a lot of coercing and buidling up to get him to agree to this trial... i feel that maybe we have this roadblock because there is something else we need to know or that God wants us to see. Hopefully I will have results from the xray in the next couple of days and I'll post and give you the status and where we go from here.
Alex has been in a lot of pain since we got home even to the point that I had to contact the doctor to see if we could get him some pain meds however that is a no go as well until they see him tomorrow if he is still in pain! Please say a little prayer for him that the pain subsides..... my little (big) guy has been thru so much already I truly hate to see him in any sort of pain!
He continues to have an awesome attitude.... still full of piss and vinegar however he continues to improve on a daily basis and still getting stronger as time goes by. He came out of sedation today insisting that I get Brooks a white flying horse, from him, for Brooks' 15th bday tomorrow .... hahahahahaha! He was dead serious and kept saying I better make sure to get it! He cracks me up and was feeling NO PAIN today when he woke up thanks to some good meds!!
We still have a very long road ahead of us......we still deal with obstacles daily. Yes we have learned to adapt but there are those days that I so wish I could go back and have the Alex I had prior to January 6, 2010. As for now, we are taking a break....enjoying summer and time off of school. It is our plan to enroll Alex for some online college courses come January of 2012 and hopefully the baclofen pump will be installed and he will be a little more "independent" and maybe at some point.... ATTEND college on his own. I continue to put my faith in God that he will provide all of our needs and that Alex will at some point be fully recovered and independent. "Faith is not believing that God can.... It's KNOWING that he will"! Hard to believe all that we have been thru and where we are today.... I have much much appreciation for and to the handicapable (Alex's term) world. It's been a long time since I have expressed it but remember that your life can be changed in the matter of a phone call. Count your blessings... then count them again and be sure to thank HIM for those blessings on a daily basis. It can ALL be taken away in a heartbeat and your life will be forever changed! Hug those babies... spend time with loved ones.....say I love you every day.....pay it forward whenever you can..... trust in Christ...... BELIEVE WITH ALL YOUR HEART..... Jesus is very much alive and is a MIRACLE MAKER..... Alex Michael Ross is living proof of that!
I'm not certain if a lot of you are still there or not.... I only have myself to blame as my free time is almost non existant these days. If you are reading this.... please continue to lift Alex up in prayer.... even though I don't blog on a regular basis..... we still very much need those prayers to cope and deal with life on a daily basis. It has gotten easier as time goes by but the loss and void are still very real and fresh..... thinking only time can heal this. We continue to MOVE FORWARD not looking back but focusing on the positives ahead and I really hope the roadblocks are removed and Alex can move forward with this baclofen pump trial.
Below is a little read up on the baclofen pump and how it could potentially be a GREAT thing for Mr. Alex! I'll be in touch as soon as xray results come out! PROMISE!
Baclofen is a muscle relaxant medicine commonly used to decrease spasticity related to multiple sclerosis, spinal cord injuries, or other neurological diseases. Spasticity is a motor disorder characterized by tight or stiff muscles that might interfere with voluntary muscle movements.
How does baclofen work?
Spasticity is caused by an imbalance of excitatory and inhibitory input in the spinal cord. This imbalance causes hyperactive muscle stretch reflexes. These reflexes result in involuntary spasms and increased muscle tone.
Baclofen (a gamma-aminobutyric acid (GABA) agonist) works by restoring the balance of excitatory and inhibitory input to reduce muscle hyperactivity. In this way, it allows more normal motor movements.
What are the side effects?
Oral and intrathecal baclofen can have potential side effects. Some side effects of baclofen include dizziness, drowsiness, headaches, nausea, and weakness.
Why is intrathecal baclofen preferred over oral baclofen?
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.
What is the baclofen pump system?
The baclofen pump system is the intrathecal (directly into the spinal fluid) method of delivering the medicine. The system consists of a catheter (a small, flexible tube) and a pump. The pump, a round metal disc, about one inch thick and three inches in diameter, is surgically placed under the skin of the abdomen near the waistline.
The pump stores and releases prescribed amounts of medicine through the catheter. The pump is refilled by inserting a needle through the skin into a filling port in the center of the pump. With a programmable pump, a tiny motor moves the medicine from the pump reservoir through the catheter. Using an external programmer, your treatment team can make adjustments in the dose, rate, and timing of the medicine.
Patients must return to their doctor's office for pump refills and medicine adjustments, typically every two to three months. The pump is taken out and replaced at the end of the battery's life span, which is usually five to seven years.
Who is a candidate for the pump system?
Anyone who has spasticity and is not responsive to oral medicine can be considered for the baclofen pump system.
What are the advantages of the baclofen pump system?
It efficiently reduces spasticity and involuntary spasms, promoting a more active lifestyle, better sleep, and reduced need for oral medicines.
It continuously delivers baclofen in small doses directly to the spinal fluid, increasing the therapeutic benefits, and causing fewer and less severe side effects compared to the oral medicine.
It can be individually adjusted to allow infusion rates that vary over a 24-hour period.
It can be turned off if spasticity reduction has shown no benefit.
Pain and discomfort from spasms and spasticity are often reduced or eliminated.
Baclofen therapy evaluation
If you are considering intrathecal baclofen therapy, you will likely have an initial evaluation by a treatment team that might include a doctor who specializes in rehabilitation (physiatrist), a physical therapist, an occupational therapist, a nurse, and a social worker. All of these professionals work as a team to provide a comprehensive evaluation of your spasticity symptoms and to establish a treatment plan adapted to your personal needs.
How will my doctor know if the baclofen pump system will work?
If your treatment team recommends the baclofen pump system after your evaluation, you will have a trial of the intraspinal therapy to test the potential effectiveness of the medicine.
During the medicine trial, baclofen is injected into the spinal canal (using a small needle) and you are assessed by the treatment team over two to four hours to determine how well the medicine treats the spasticity. If your muscles don't relax during the first trial, a larger dose might be given on a later date to determine its effectiveness.
Patients who experience positive results with the intrathecal medicine can decide with their doctor and family members if they should have a baclofen pump system implanted during a surgical procedure. Prior to surgery, you will meet with the surgeon and nurse to ask questions about the procedure.
What happens after the procedure?
After the implantation procedure, you will stay in the hospital a few days so your recovery can be closely monitored. While you are in the hospital, the dose of baclofen will be adjusted. You will have follow-up visits with your doctor.