1-1-11

Whoa! It's New Year's Eve already? I was in labor at this time 4 years ago...

When Jacob was born, I knew my baby Matthew was becoming a little boy. Matt and I swear that he grew in the few days that we were in the Birthing Center. His butt was enormous compared to our new baby Jacob's. Matthew is my first-born, my New Year's Day gift. We rolled on the carpet together, crawled all over the place, played with every toy that was ever made. I sang him to sleep, danced with him until he leaned towards his crib, kissed him all over. I love this little boy.

Home Sweet Home

We were discharged at 5:30 pm yesterday. We felt that there was no reason to keep him there overnight just to have IV fluids. We weren't planning to let him dehydrate and to kill him. He was able to take a few steps at the hospital while I was holding his hand but sure enough after we were home he didn't want anybody to help him. But he needs help. His muscles are very weak. He's only been walking since February so we remember what it was like to guard him closely and pick him up all the time. He can sit up on his own so the challenge will be to make sure that he is happy and stimulated and to push him without overdoing it. He will be able to start rehab next week. He will continue to take his anti-seizure medication until his neurologist thinks it's time to wean and then I will be asking for another EEG to be sure.

The EEG patterns were non-epileptic. Jacob likely will go home tomorrow. And they lived happily ever after.

903B Northeast

The IV went back in yesterday afternoon and Jacob is scheduled for an EEG today. He has been running a fever off and on so they took blood for a culture and so far no infection. He is eating and drinking but not enough. He is still sleeping most of the time. The EEG is to see if Jacob has been having seizures since the surgery and to decide if he needs to be on a different medication. My theory is that he has phantom brain like a phantom limb after amputation. His right hemisphere has over-compensated for the left and now that it is gone, maybe the right is behaving as if the left was still there. Just a theory. At least we will have some answers before we leave the hospital instead of going home and being in constant paranoia over seizures. I would rather have watched Jacob's surgery, scalp, skull, brains and all, than see him having a seizure.

December 28th

A slice of toast with butter, an ounce of apple juice, and a sip of water and milk. We are recording everything Jacob eats and drinks. They monitor intake by our records and output by weighing Jacob's dirty diapers. When he meets their guidelines, he will be able to go home. He had physical therapy yesterday, really just playing with toys to see how far he is from his baseline before surgery. They have decided that he will need outpatient rehab when we go home which is what I expected. It's better than inpatient rehab. Jacob has moved his right limbs but he seems to be ignoring his right arm again and lets it hang limp at his side. But he can move it especially when he is agitated and wants to push the therapist or nurses away. He started closing his eyes and pretending that he was sleeping when they come around. He is still very weak all over. Very unsteady although he tries to sit up on his own. Once he is home we will spend a lot of time playing on "the big bed". I bought us a king size bed for Christmas because Jacob is still sleeping with us and Matthew sometimes wants to join in. Now we all fit together. I had to cram myself into Jacob's crib last night to help him sleep. It was actually more comfortable than the pull-out chair believe it or not. We also have a roommate now. Very strange to share a hospital room but last night went okay. Just another experience.

December 27th

Jacob had a great night. He's back on Tylenol and had a dose of morphine this morning when his drain tube was REMOVED and he was stitched back together. He's sleeping now and Matt went home to plow with Matthew. Jacob's IV was also REMOVED and we are recording how much he eats and drinks. If he maintains his fluids, he may be able to go home in a few days. They had told us 5 to 7 days and Wednesday will be the 7th day!

December 26th

The day after Christmas is both my mother's and my father's birthday. Matthew Jr. thinks that getting older means you're going to "make the cemetery". Happy Birthday Mom and Dad!

Jacob has had a rough time since we were transfered to the 9th floor. He has been running a fever and has needed a low dose of morphine to manage his pain, which has had an effect on his heart and respiration rates. He is comfortable but needs some "blow-by" oxygen. We saw him have seizures in the afternoon while he was eating his grilled cheese and drinking apple juice and milk. It lasted for about twenty-minutes where he would appear to have a blank look on his face and then his eyes would travel to the left corner of his face. In between, he would continue eating and drinking and would talk to us. His body and especially his left hand was also trembling. Jacob's neurologist had said a few weeks ago that we should not be surprised if Jacob had seizures following surgery and neither the nurses or the neurosurgeons are particularly concerned. My guess is that his body and his brain are in a state of "what the f*** just happened" now that the anesthesia has finally worn off. His right hemisphere isn't getting any signals from the left anymore and is realizing that it has to take-over. This is just my guess. As long as he is stable and comfortable... and I haven't seen any more seizures since.

P.S. I have held his warm chubby body twice!

Christmas

Jacob is off the low flow oxygen and his head drain has been moved up higher. It will probably be clamped off by the end of the day. He was moved from the ICU to the 9th floor this afternoon. He has been saying be-be (binky) and Momma and Dadda and yah and uses his left hand to gesture towards his blanket or the t.v. He is napping right now and when he wakes up, we're going to see if he wants to eat a grilled cheese sandwich. Milkshakes will be next... Following the surgery, Jacob had 3 doses of morphine and then nothing for nearly 32 hours because he wasn't able to breathe on his own and narcotics would suppress his bodily functions. Once the breathing tube was removed and after he showed some discomfort, he was given tylenol. 2 doses so far. Unbelievable. His pain seems to be at a level that he is tolerating well.

Matthew Jr. and I slept over Nana's last night and woke up at 5 am to open presents. He was so sad when I said I had to get going. He held on to me and cried and then shrugged it off as best as he could. I know he understands but he is having a hard time coping. Hopefully today will fill him up inside because he gets to see nearly everyone that he is related to on our little island. Santa went to his house too so he has something to look forward to when he goes home with Daddy tonight.