Wednesday 2/23

Collin is doing well with his Baclofen and Propranolol. It is time to consider a BP. BP is a small, hockey puck shaped device that would be surgically placed inside Collin's adbomen. The pump contains Baclofen and is continuously administered into his spine. The BP allows extremely small doses of Baclofen to target the nerves in the spine without affecting his entire body. Currently Collin is receiving his Baclofen orally, which causes his entire body to be affected by the drug. The pump will inject about 1/1000 the dose needed orally. The BP can be externally refilled by injecting more Baclofen into the hockey puck via needle.
Because of Collin's Spina Bifida, the staff is not sure that he can get the catheter installed into his spine. On Thursday (2/24), Collin will get an MRI of his spine and head.

Propranolol - 7.5, Q6
Baclofen - 5, Q?
Methodone - 1, Q6
Valium - ?, Q?

Thursday 2/24

Collin had an MRI on his back and head. Collin's brain shows universal damage. The medical term is Ischemic Brain Injury. Collin's entire brain is affected. There appears to be fairly significant volume loss. The fluid in the brain has obviously increased. Doctors showed us the MRI from early February compared to today and there is an obvious difference. Official reading is that the increase water volume is due to brain shrinkage. The neurologist is not 100% convinced this is all volume loss. HC is still a question.
Other result of the MRI is a tethered cord. MB staff seems convinced he has a tethered cord. We were always told by SC that you can't tell if the cord is tethered by an MRI scan. Scar tissue makes it look like tethering. We are not convinced that the MRI results are conclusive for tethering.
Asked Neurologist if HC could cause the brain damage we saw on the MRI. We were told that this type of damage would be caused by lack of oxygen to the brain, not HC. However, HC could be causing some of the symptoms Collin is experiencing such as arching, sweating, high heart rates, curled hands and fingers. Need to talk with Neurosurgery tomorrow.

Propranolol - 5, Q12 (Changed Dose and Frequency. Skipped dose Thursday night)
Baclofen - 5, Q?
Methodone - 1, Q6
Valium - ?, Q?

Friday 2/25

After his MRI his heart rate was very low. The doctors were very concerned and decided to hold off on the Propranolol. At 8:00am Collin was very relaxed. By about 8:30am Collin was not very relaxed and started going through this arching episodes. Also his heart rate was at higher levels than we normally see (since he was on Propranolol). He would easily get into the 150, 160 and even 170 range. Spent almost all day sweating and heart rates fluctuating between 100 and 170.
Met new Dr. Shultz. She said Hi, we've decided as a staff that it would be good to move to SC, do you protest?
Met with Dr. Morris (Neurosurgery). Not convinced Collin has tethered cord, but is very concerned about HC. He is a very experienced Neurosurgeon, but thinks SC has a better history with Collin. Need to address shunt, tethered cord and BP.

Propranolol - 7.5, Q6
Baclofen - 5, Q?
Methodone - 1, Q6
Valium - ?, Q?

Sunday 3/6

More Storming. Very frustrating. Not sure what is going on. Here is his meds:

Propranolol 4.5ml Q6 (started 3/5/11 pm)
Morphine 1.0 Q4 (started 3/5/11pm)
Bachlofen 7.5 mg Q8
Antibiotics (started 3/5/11 pm)
Clonidine 0.2patch (3/4/11pm changed to 0.1, increased 3/6/11 am)
Zantac
Oxybutinin 1.8ml Q8?
Anti-nausea med?