Wednesday, June 10th, Daniel went in for surgery to insert an Intrathecal Baclofen Pump to help relieve his severe muscle spasticity. Daniel had been receiving the highest dose of Baclofen (a muscle relaxant) he could receive daily for his muscle tightness, but he still had very tight muscles. His hands would be almost fixed in a fisted position along with the rest of his muscles in his body. This new pump was surgically implanted in his abdomen with tubing going around to his spinal area and it constantly delivers the baclofen were it is needed most, the spinal fluids. When Baclofen (or any medication) is taken orally (or in Daniel's case, through his G-tube) it is absorbed by other parts of the body and not all of it gets to where it needs to go. This new pump delivers it directly into the spinal fluid and nowhere else. He had been taking 100mg of Baclofen daily, and now with his pump he is at 130 MICROgrams! A whole lot less of the medication is now needed and will also prevent all the other side effects of the oral dose. His hands are now very relaxed along with his neck and arms, legs and feet. He has also been drooling a lot less more and we since found out that drooling was a big side effect of the large dose of oral Baclofen he had been receiving.
He did well during surgery but during recovery there were some scares, he had quite a few episodes where he stopped breathing. They had to bag him and provide oxygen for 2 days and lower the amount the Baclofen that his pump was set to release. Slowly they increased it again and he has been doing fine.
He has 2 large incisions, one on his abdomen and another down his spine, but the pain has been less than what was expected...I am thinking it is because now that he doesn't have that daily achiness from his muscle tightness and can relax more, the pain from the incisions is a little more bareable.
He was discharged Friday with pain medication and antibiotics as an extra precaution and instructions for us how to handle him and change the dressings around his incisions. He is still very sleepy from the uncomfortable stay in the hospital (he hates being there) and we are waiting to see how his energy level will be on Monday and if he can return to school for the last week. I would hate for him to miss the last week of school, he loves his friends there so much, but if he is still too tired from recovery I may just bring him in myself for a few hours.
His doctors and I are very hopeful that not only will this pump offer him more comfort, but will also help him in his recovery. Although the pump will not give him any new abilities, it just may allow him to move more since he won't have to constantly fight the tight muscles when he does want to move them.
In a month or so, Daniel's rehab doctor will re-evaluate him for in-patient rehab once he is recovered from this surgery! This would be the perfect timing since he is graduating from 5th grade and will be moving on to middle school in the fall. I know everybody will be so busy with graduation and summer approaching, but if you would like to attend Daniel's 5th Grade promotion, it will be on Wednesday, June 17th @ 6pm at Twin Oaks Elementary School. We are saddened that Daniel will move on to middle school and leave this wonderful school that has accepted him with loving, open arms. But we are so very thankful that his aide at school, Mrs. Anja, will be moving on with him to his new school. She has requested that she stay his aide and will be his aid when he goes on to 6th Grade!
http://www.medtronic.com/your-health/spinal-cord-injury-disease/device/
