Another day goes by

Jacob is doing well again today, he has been tired, but is eating well, and getting the rest he needs.  He has not thrown up today, and they are happy with that, but I guess we are not out of the woods on that yet, it could still happen before the end of the week the Dr. said.  He has not had to have a lot of pain medicine, mostly a bit of Tylenol, I think he has a pretty high tolerance to it like me, so that is good. He has complained a little bit, but not much, I would probably be complaining more.  He does not like all of the wires and tubes coming off him though and has tried many times to pull them off and out.  He has even gotten his head wrap pulled apart enough that it is starting to look like a birds nest.  The nurse and I even joked about trying to find a bird to put in it and he gave us a dirty look.  We had to finally put a new restrain on him to limit the movement of his left arm, so he could not reach the top of his head (of course we had to get permission from the doctor first).  I have not heard much babbling from him, and his cry is so quite, I don't know if that is from the tiredness, or if it has something to do with his left hemisphere not being there to work anymore, it is a question I will have to remember to ask his Dr. tomorrow.  Of course as I type this he is waking up and starting to get a bit louder in his cry.  He even managed to get 2 of his leads off, so the nurse had to come and move them (we will see how long that lasts).

Josh came to see him today and was again afraid to get too close to him and especially touch him, I have not been able to figure out why exactly he just said he was afraid.  I told him that Jacob was not sick and would not make him sick, but he was still afraid.  I don't know if the fact that Jacob is so quite and still sometimes makes Josh nervous, or what.  Jacob did get to see him though and I think liked it, at least until he realized he had food waiting for him and then he was more interested in that.  Before Josh came by to see us though, he got to play with his friend Milo, who is Liz and Gary's/Patricia and Tom's neighbor.  He is a year older than Josh and he made friends with him on our first trip out here almost a year ago and every time we come out he is always anxious to go and see him. 

All in all it has been a somewhat uneventful day, and hopefully Jacob will be more awake and ready to move around tomorrow, although with that could come some louder complaints, but I am ok with that.

The day after

Jacob looked pretty good today, although a bit cranky and tired, but who could blame him.  He woke up shortly after we got to the hospital this morning, and started complaining to us right away in his usual way of kicking at us and grabbing our hands and the nurse even asked us twice if he was in pain, so we explained to her that he was just mad and that was his way of trying to tell us.  He was then moved out of ICU due to the fact that he had a good night and moved into a regular room on a different floor.  He did have to go in for another MRI, but the Dr came and told us that everything looked good, just what they were hoping to see.  Needless to say he was a bit tired and still groggy after all was said and done.  Dr said tomorrow should be better and he should be more awake. Hopefully he will have a good night.
Joshua has having a bit of a rough time the whole day.  He was afraid to go in and see Jacob (I think he thought he was going to be swollen up like the dough boy).  When he finally did, he said he felt better, and was not afraid anymore.  I realized then how much more he knew about all that was happening then I did before.  He is a smart boy and was pretty concerned about his brother.  He later had a bit of a breakdown, but I think that had a little to more to do with being really tired.  I think he will feel much better in the morning.

Surgery is done

We just talked to Jacob's Neurosurgeon, and he is out and doing well.  It will be a bit before we can see him, but everything went smooth.  He had a little bit of blood loss, but it was less than average he said.  He will be out of it for a bit, and probably won't recognize the use of his right side right away, but that should not last long though.  That will also be a big part of his therapy.  They will send things off for a biopsy and should have some kind of results in a week or so, but that does not mean it will give a reason on why his malformation, it will just give us a name for it.  He also said it appeared that the 2 sides of the brain were not talking to each other, and he thinks that is a good thing, but it is hard to say for sure.  It could also mean it will be a bit more work for rehab. There definitely was an abnormality on the left side, but that the right side appears to be normal, so It appears the surgery was definitely a good thing.  The next week will probably be the hardest, with emphasis on the last part of the week (the next couple of days he will be a bit out of it with pain meds and then after that everything will start "waking up" so to speak).    

Waiting

Well, we got a pretty good nights sleep last night (as good as you can get in a situation like this).  Jacob went to sleep right away, and slept until 5 am before he woke up and then went right back to sleep until about 6 am.  We got to the hospital and he was in a pretty good mood considering his lack of food.  We had to wait a while at the surgery check in and were beginning to wonder if they were going to start the surgery without him.  Finally they came and got us and said they had a delay because they waiting for a room for him in ICU and one finally opened up.  So needless to say surgery did not start until about 1 pm.   He was in a pretty good mood while we were waiting, at least until about noon, and then his mood started to turn.  They then were ready to give him a medicine that made him all smiley and goofy, and then he got very sleepy and I had to say good bye.  That is when it got a bit hard.  I know it was not for good, but it was still hard.  They said they would update us every hour or hour and a half, but the first update didn't come until after it had been 2 1/2 hours.  Boy was I starting to stress.  Finally they called and said all is good and that they were just taking their time and he was doing very well.  At this time we are still waiting for it to be done, or the next update. But I will try to be patient.

One day to go

Jacob had another night last night of having trouble getting to sleep, so finally after midnight, I decided to do something I usually would not do, I let him sleep with me in bed.  It went pretty well, but then Josh woke me up at 5 am saying he couldn't breath.  Luckily, he did not wake Jacob up, but my luck did not last.  Jacob decided he was ready to get up at 5:30 am.  So needless to say I had another night of lack of sleep.  Oh Well, just getting prepared I guess.  I did get Jacob to finally go back to sleep at about 7:30, only to have to wake him up before 8 so he could get his medicine before the cut off time.  He was not too happy that I wouldn't let him eat anything, but did pretty good when we got to the hospital.  Got him checked in and in his gown for the FMRI, and he was quickly out with anesthesia. 

When he came out he did not want to wake up, so they made us wake him up, which did not make him happy.  It took 2 apple juice and some animal crackers and to get him away from the people who put him into that situation to get him to calm down.  All in all the screaming lasted about 10 minutes or so.  We then got him some lunch (grilled cheese) and he was much happier to finish the rest of the appointments.  By the time everyone had seen him though, he was one tired dude and fell asleep in the car on the way back to our home base. 

We are set for surgery at 11 am tomorrow, so hopefully we will get rested tonight for the big day.

Made it to Seattle

Hi all, after a long day we finally made it to Seattle.  It started out by waking up and then seeing snow coming down, never a good start to a road trip day.  We were ready (I loaded the car the night before so we could leave by 8am), but we had to wait for my Mom and Sister to get out to us so we could leave.  Unfortunately they had tire issues, so they did not make it out to us until 11am.  I guess it was a good test to my new motto that I have learned "be flexible".  Luckily our weather was only snow until we got out of Caldwell, and then it turned to just wet.  It was a pretty uneventful drive and we made it over the blues with some snow, but none on the road and we even stopped in Richland to have a quick visit with my Uncle Roger, Aunt Carol and cousin Scott.  We had a nice dinner with them and enjoyed seeing them, even though it was quick, and then headed on our way for the rest of our trip.  We made it into Seattle at about 10 pm (pst) and got settled for bed at about 12 am.  It was kind of a long night.  Jacob did not sleep all that well and woke up at about 3:45 am and did not let me get back to sleep until about 5 am.  I guess we are both going to try to take a nap today.  Our only appointment today is a neurophysc appointment, and then the fun begins tomorrow.   It is just to put a baseline on his development for them, so they know were he stands before surgery.  We will let you know what they find.

Thankful!

As we get ready to make the trek to Seattle for what I am know will be a life changing event (for all of us), I can not help but stop and think of all the friends and family that I am so grateful to have.  I don't think this is a journey I could undertake without everyone around me and all of the support you have all provided (and continue to provide).  I know that Jacob is a strong little guy, and with our help will come out of this with flying colors, but I am sure my/our strength will be tested just as much (if not maybe a bit more). 

I have to thank everyone for so much help and support.  There are so many of you, and I don't know the best way to do it, but we really appreciate everyone!  No matter what the outcome for little Jacob is I am so thankful to have him and Joshua and Rick, and even this squirmy little guy who weighed in yesterday at a whopping 15oz on his ultrasound.  We have also been blessed with so many family and friends and I am ever so thankful for all of you.

We had a care conference yesterday that my Mom set up with various therapists, doctors, home care nurses and such that have been/might be involved in Jacob's rehab and as it turns out we may need to be in Seattle for a little more time than originally anticipated to get all of the therapy Jacob may need in the beginning.  I guess we will figure it out as it comes along.  I am going to miss everyone that we will not see for a while, but hopefully when we get back, Jacob will be almost as good as new and on his way to a fresh start at being a kid with NO seizures!  I want to send all of my love out to everyone and know that I will be thinking of you all, even while being ever consumed with Jacob's situation.  I promise to keep updating constantly, as it will be helpful for me to tell all of you how he is doing.

All my love and Thanks! 
Meghan