Friday, December 31, 2010


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.

Wednesday, December 29, 2010

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.

Tuesday, December 28, 2010

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.

Monday, December 27, 2010

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!

Sunday, December 26, 2010

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!

Saturday, December 25, 2010


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.

Friday, December 24, 2010

The breathing tube and catheter are out. Jacob is still on low flow oxygen. He is awake and aware but not particularly alert. He's watching Caillou on t.v. getting ready for his brother to come visit.

Christmas Eve

There is more talk about removing Jacob's breathing tube sometime this morning. They were waiting for him to thrash around to be sure that he would stay awake enough to breathe on his own but I explained that he is not a trash around kind of kid. He has been awake for much longer periods of time since last night. He is aware. He is upset but consolable. They are also talking about weaning his head drain, which means they will place the outlet for the drain above the level of his head so that his body will have to start doing the work of absorbing extra fluid rather than letting it drain right out of his head. It sounds worse than it is and we can't see anything but a tube and some fluid so it's not as gross as it sounds. So overall, recovery is still going well, moving in the right direction. I almost forgot that he did move his right arm this morning so he may have some extra weakness on his right side after we get home but everything is still working.

Matthew Sr. and Jr. had a sleepover last night and tonight is Mommy's turn with Matthew and Daddy's turn with Jacob. Matthew said he missed me and said "I love you poopy face, stinky butt". Everything is as it should be.

Thursday, December 23, 2010


I was restless in the morning. I was agonizing over our decision. I decided that we could change our mind at the very last minute if we wanted to. On the ride up, I asked Matt if he was having second thoughts. He said no, what about you. I said yes, every second. Once we got to the hospital, I regained my strength. I knew we were doing the right thing for Jacob. He would have to forgive us. Maybe he would thank us one day. But once Jacob was taken away, I clung to Matt and sobbed. He said that we had to be strong for Jacob. And we were.

When I woke up today, I couldn't believe what we had done, but not in a regretful way. Always a mix of emotions.

Jacob moved his legs this morning and squeezed my hand some more. They will probably remove the breathing tube this morning. He has opened his eyes ever so slightly. He just needs the pain medication and rest for now.

Wednesday, December 22, 2010

Jacob has not fully waken yet and is still using a breathing tube, although he is doing some of the work on his own. He did squeeze my hand and nodded yes but he has not opened his eyes. His face is not swollen at all. He looks like a little angel sleeping. I'll post pictures eventually...
Jacob is done. No transfusion. Only about 2 ounces of blood lost. MRI scan shows complete disconnection. We haven't seen him yet...

Tuesday, December 21, 2010

< 1 Day

Left functional hemispherectomy scheduled for 8:30 am tomorrow at Boston Children's Hospital. I feel... confident. Matt Sr. is having dinner with Matthew Jr. at Grandma and Grandpa's house. Jacob is napping. I am blogging and doing laundry and thinking about what Jacob is going to eat for dinner. I have had migraines for the past few days which must be how my body copes with stress because I feel... detached, as if I am preparing to do the surgery myself. I do not feel relaxed but there is something soothing about making a list and checking it twice - packing overnight bags for Matthew Jr., packing a bag for Jacob, packing a bag for Mommy and Daddy, packing, packing, packing... I feel... anxious. I will post again tomorrow afternoon. Thank you everyone for your hugs and kisses and emails and comments and cards and phone calls and Facebook status updates. We feel you wrapped up all around us.

Friday, December 17, 2010

5 Days

Nana asked me how I was feeling. I said I didn't know. I don't think I will know exactly until Wednesday. I do know that every morning after I drop Matthew off at school, I am overcome for a moment with a mix of emotions. Many times I am overcome when I think about all of the friends, family, and strangers to me who are thinking about Jacob, who are praying for Jacob. I think about God all of the time. I believe that his plan for Jacob is to be my teacher, to show me what is possible, to show me what is important, and to show me who I am. Sometimes I am overcome by the thought of what I will never know. But only for a moment. I have to drive. On Wednesday I can be overcome but for now we have to attend to life. By the way, I told Matthew that Jacob will be in the hospital next week and he said, "but then I won't have a brother." Then he wanted to know who he would be staying with and what Jacob was going to the hospital for. I said that Jacob had a boo-boo inside his head. Matthew asked if they were going to fix his balance then. I said yes. He said how. And I said with special tools in his ears and nose. What to say?

Monday, December 13, 2010


Three-and-a-half hours later, we are moving forward with surgery. I nearly gasped when I saw Jacob's chest x-ray with these large cloudy masses near the bottom of each lung and then I realized that we were looking at his liver and his stomach. His physical exam went well. The phlebotomist drew blood on the first try. Amazing! Jacob usually ends up with about 5 bandages and bruising whenever he needs a blood test. So no news will definitely be good news in the next few days as the blood tests are run and the x-ray is examined. He will probably be scheduled for surgery at 7:30 am next Wednesday and it will last about 6 hours. I almost lost it when we were talking to an anesthesiologist about the procedure because it's really not as simple as knocking someone out and disconnecting their brains. As his neurosurgeon described him, however, Jacob is ROBUST. He will tolerate the procedure well. He is 33 pounds and 3 feet tall.

Sunday, December 12, 2010

10 Days

Jacob's pre-operative appointment is in Boston tomorrow from 1:00 - 3:30 pm. I have to prepare a list of his medications tonight and actually pack the bottles tomorrow morning to verify his dosages. When Jacob began taking Depakote, he developed an aversion to fruits and most vegetables. I posted before that a possible side effect of Depakote is food perversion because it may leave a metallic taste in the mouth. So as a result, Jacob has been constipated because he mostly eats dairy and carbohydrates. I have been giving him Miralax as needed and a multi-vitamin with iron daily. Jacob had some blood tests a few weeks ago and apparently his blood cells are large, indicating either an iron deficiency or a folic acid deficiency. Since he has been taking the multi-vitamin, his pediatrician determined that he would also need to take folic acid because this deficiency is also a possible side effect of Depakote. So basically, whenever Jacob is able to stop taking Depakote, he will also be able to stop taking the Miralax, the multi-vitamin, the folic acid. The other medications he is on are Flovent, to prevent an asthma attack, and Proventil, to treat an asthma attack. And actually, asthma isn't diagnosed in children Jacob's age because many children grow out of it so it is really called reactive airway disease at this stage. I'm looking forward already to a year from now when maybe Jacob won't be taking ANY medication AT ALL. Nothing will ever be as bad as prepping Jacob's thigh and administering an injection every morning but... Sometimes I have to do a little detective work and look for evidence of a wet syringe to know I already gave him that and rinsed it or look for stains on Jacob's shirt to see which one dribbled out of his mouth.

Thursday, December 9, 2010

13 Days

The background of the blog has always been colorful and child-like because this is the story of Jacob afterall. I changed the design in October to a dark and scary bridge. Trevy's Mommy often writes about the Miracle Nightmare and the Healing Side of hemispherectomy surgery. So I went literal. We are ready to cross and scared as shit. But 'tis the season and there are enough miracles to go around for everyone.

Tuesday, December 7, 2010

15 Days

Matthew has had a cold for about two weeks. Mommy has had a cold for about a week. Jacob has had a hint of a runny nose and has coughed about five times for a few days. Uh oh. The albuterol rescue inhaler is locked and loaded for the first sign of a crackle or a wheeze. Matt Sr. is healthy. I know that isolating Jacob for the past 4 weeks has limited his chance of infection and definitely allowed him to recover from the pneumonia. But I couldn't isolate Matthew as well and I can't resist kissing all over him... Hopefully I have the worst of it. I have been coughing into my sleeves and washing and sanitizing my hands before touching Jacob or his food. I am hopeful that if Jacob does get worse that he will have enough time to get better before the 22nd. And I know this will not become pneumonia again because he has it so mild right now and I am watching his nose and listening to and feeling his chest for any signs of breathing difficulty. And no fever. Fingers crossed... again.

Thursday, December 2, 2010

20 Days

The same thing happened to me in October. My heart, my stomach, my intestines, my mind - all in alignment, although my muscles were tight, my bones ached, and my migraine headaches were recurrent. Last week after I cancelled the rest of the specialist appointments that I had scheduled in the heat of pneumonia, I felt a calm come over me. And although my muscles have been tight and my bones ache and my migraine headaches are getting on my nerves, I have been feeling so positive and so hopeful. My stomach is churning and my intestines are squirming and my heart is racing. I am excited for Jacob to be free.

Wednesday, December 1, 2010

21 Days

The benefit for Jacob was held one year ago today. Wow. Sometimes it feels like just yesterday and other times it feels like a lifetime ago. Two rounds of Constraint Therapy later, Jacob is consistently using his right hand to assist his left. A year ago, he didn't even know he had a right hand. He took his first steps in February and said his first word in May. Now he is learning to step up and over, he is commando crawling, he is walking backwards, he is squatting... a year and a half ago he couldn't sit up on his own. A year ago, he scooted with one leg and one arm. He now uses sounds, words, gestures, or signs for mama, dada, milk, more, done, up, down, help, ball, please, thank you, excuse me, me, my turn, pen, paper, tractor, ice cream, phone, binky, baby, hot, hat, open, yes, no, train, purple, blue, green, pink... I know there are more.

The benefit truly was a gift of hope and opportunity.