Hi, it's Kristen, bringing you...
Words from Jill:
Today has been the first positive day we have seen in a while. I didn't update yesterday, because it was pretty much more of the same. Up some meds, decrease some meds, discontinue some meds; and Matthew would seize whenever he was awake until we gave him enough medication that he would sleep. Frankly, I was getting sick of it.
Yesterday, I started doing more research on the ketogenic diet (google this if you are unfamiliar with what the ketogenic diet is). I have a lot of reasons to believe this may be part of our answer for Matthew. I was going to be insistent today that we start this diet. Dr. D has said that this diet would be our next option. In talking with both the doctor on call (Dr Frost) and Dr. D that is would not be good to start it today because one of the side effects of the diet is that is can lower you ability to fight infection. The reason this is important for Matthew is because on Tuesday (or Monday??..I can't remember) he started coughing A LOT more. They took a specimen from his sputum (gross, sorry) and he has pneumonia, again. They think the antibiotic they started him on 2 weeks ago (after he extubated himself and got food into his lungs) was not strong enough to kill the bug. He had finished that antibiotic last Thursday. So they did a sensitivity on the culture to see what antibiotic would be best to kill this bacteria. (Wwhich by the way,the bacteria he has is a bacteria that is rampent in hospitals...go figure). They would like for him to get better from the pneumonia and then we can start the diet. I understand this and will wait a few days. The doctors both believe that having this infection may be part (or most) of the reason that we are not able to control the seizures.
Today Matthew was awake ALL day, and while he had quite a few seizures, it wasn't continuous and they would stop on their own. One of the new medications he is on can cause insomnia, and I could see this side effect today. I did get a couple smiles, and lots of "conversation" today from Matthew. He still has a viscious cough, and the staff is working hard to help him with antibiotics in his IV, antibiotics in his nebulizer treatments, chest percussion treatments, and frequent suction.
His seizure meds (once again for those who want to know, but also for my record keeping):
felbitol (increased today)
..that is TOO many, and we will not go home until at least two of these maybe up to 4 of them are discontinued.
Thank you all for the continued prayers, phone calls, emails, comments, support and all you are doing for our family! We love you all!