Rough Day

Today, Jacob woke up pretty irritable.  Josh and I got to the hospital pretty early so we could be there in case the Doctors came in because we heard they were going to be there at 7:30 am.  Of course the doctors didn't come in until around 8:15, but at least we were there in plenty of  time.  Jacob was crying and fussing because he was cranky and hungry.  He has been on a steroid ever since the surgery to prevent swelling in his brain, and it has made him extremely hungry.  He is being weened off of it and should be done with it on Wednesday, but is starting to show signs of looking like the Pillsbury dough boy and has gained 1.4 lbs in the last week and a half.  He missed his first therapy appointment at 8:30 am due to a lot of crying and him being a bit difficult taking his medicine, but I was able to get it down him and have him calmed down by his 9:00 am session.  He finished his morning therapies with a little complaining and a bit of drooling, and we decided to try giving him some Tylenol.  After that I was able to get him to take a nap and he seemed to wake up in a much better mood.  He made it through his afternoon therapies without too many complaints and we then settled for a little nap in the afternoon.  His somewhat good mood was fairly shot lived though, because he woke up form his afternoon nap and seemed irritable again.  I don't quite know why.  Maybe he is cutting some molars?  Maybe weening him off the steroid is making him cranky?  I am just not sure, and I hate that feeling.  Hopefully he will rest well tonight and tomorrow will be a better day for him (and I got them to adjust the therapy schedule so it is not quite so early for him). 

This picture is of him sitting up by himself and Josh holding his hand (taken with my phone), which is somewhat incredible considering he could not even hold himself up by himself yesterday.

Joshua was a good trooper, he hung out at the hospital all day with not much to do except schoolwork, and did not complain too much.  He even was able to help the therapists in keeping Jacob interested in what they wanted him to do at times.  He really is a good big brother and I can see Jacob looks up to him a lot. Hopefully we can get him doing something more exciting tomorrow.  I also promised one more trip to the zoo this week, so I will break away in the next couple of days and keep my promise.

Weekend of (a bit of) Rest

We started out the weekend with a bit if a grumpy Jacob, I'm guessing because he worked so hard on Friday and probably because his new neighbor had the nurses coming in every couple of hours throughout the night (and a couple of them were a bit noisy).  He had an early therapy Saturday that he did not really want to cooperate for, and then a catnap, and by his second therapy he was starting to warm up.  Lucky for him though, it was only a half day of therapies.  By Saturday evening he was feeling better and his roommate got checked out, so he and Rick had the room all to himself.  He slept all night long without interruptions.  

This morning he was still a bit grumpy, but after a little time with Rick and Myself playing, he was having a bit more fun.  The Therapists have left a lot of things for us to keep him busy for the weekend, so we did our best at getting him to play (I even took some video to show them so they don't think that he never does anything they want him too, he just does it when they are not around).  

Today, I noticed a sudden empty private room down the hall a couple doors, so I asked his nurse what you had to do to get on the list for one.  By the end of the day, they had moved him into it.   Now, no more late night move In's to worry about and no one to wake him up in the middle of the night (especially because he has been upgraded to the vital sign check only at 8am and 8pm).   

This weekend my sister Erin flew back to Seattle with her son Charlie to see us and take Josh out to get him out of the hospital some more (he had hung out with our friends Liz and Gary a bit, but we didn't want them to think they had to take him everyday).  They went to the zoo, and went to the Locks where they saw a fish ladder and he had a good time seeing his cousin.

We also seem to find some new animal somewhere in or around the hospital that Josh has to get his photo with, so this time it was the elephants by the Giraffe entrance.  It is amazing all of the things they have around the hospital to interest the kids (and some of us adults to).  I wonder how many more we will stumble upon (when we do I guarantee we will get a photo with them). 

Rick flew home tonight to check on the house and animals, and try to get in a somewhat productive work week until Thursday, although I know he regretted leaving thinking he would be more help here with us, but we will be fine for the next four days.  He has decided to take Josh back with him next weekend, so Josh can get back into a routine and be able to start school again after spring break, and I think it is a pretty good idea.  I will miss them, but hopefully we will see them soon enough, we will just have to make the most of this week and weekend till they are both gone.

First official day of rehab

 As promised I took a photo of some of the decorations that Bill and Lisa sent us.  It made our St.Patrick's day a bit more cheery!  Thanks again Bill and Lisa!

This morning Josh said we had to visit good old Ronald who is out front of the Ronald McDonald House and get a photo with him.  At least I got them all to smile, although I had to work a little harder for Ronald. 

Jacob had his first official day of rehab today, and it went pretty good.  They split it into 1 1/2 hours in the morning, let him get lunch and a nap and then 1 1/2 hours in the afternoon.  He lasted pretty well with that (they were originally afraid he wouldn't).   He also got a new way to be able to get a ride around the hospital.  They fitted him in a special size chair with wheels and he seemed to like it fairly well.  Now he does not have to lay in bed propped up to eat his food. 
The only hiccup all day was with the insurance, but I am sure it will get all resolved next week.  So far they have only approved him for one week of therapy.  As much as we would like to be home soon, we know that one week is not going to cut it.  Jacob is much too far away from being where he needs to be to go home.  So far they are saying they can most likely get the insurance to get it to at least 3 weeks and then we can go from there. So, I guess we will see what happens. 
And to end the day, he got his first bath, it was not as enjoyable as his usual baths, but I think he appreciated getting clean for the first time in over a week.  When we got back from our bath, we got to move our bed over to the side of the room with the window, because our roommate moved out.  We were pretty excited at the thought of a window view and that it looked like it might be a quite night, but then at 10:45 pm they moved in a teenage boy.  Oh well, it still might be a quite rest of the night, I suppose.

Finally Mobile and Happy St. Patrick's Day

First I have to apologize for not getting the update done last night, I got on the computer to do it and I did not have an Internet connection in the Ronald McDonald house room.  Apparently our room is a bit too far away from the wireless router (they gave me a cord to use from now on).  So hopefully from now on I will be able to stay on the update schedule that I like (at night before bed).

 For the past week Jacob has been in the giraffe section of the hospital, which has been appropriate because one of his favorite stuffed animals is a giraffe.  On Wednesday though he was able to get the drain pulled from his head and they came and told us he would probably get moved to the rehab section which is in the train section of the hospital.  I guess that is good, because now we are more mobile.  We can get him out of bed whenever we want and he does enjoy being walked around and seeing new sights.  He seemed much happier when the drain came out and Dad got to hang out with him and stay the night.  Josh and I went to stay at the Ronald McDonald house for the night. 

 We came in first thing this morning and Dad was acting so goofy, we actually got a smile out of him.  It was the first one I have seen in a week.  It is still a bit of a half smile because he is still getting used to using the right side, but we will take it either way. 

At around noon they came and got him and moved him over to his new room #3135 in the train section.  He now has a new roommate (I believe a quieter one) and a change of scenery.  Our friends Bill and Lisa also sent us some decorations for his room to make it festive for St. Patrick's day.  I will take pictures when we are done decorating and post later. 

Oh so Depressed

We went into the hospital this morning and got there just before the physical therapist and the occupational therapist came in to see Jacob.  I guess to they took him in for a chest xray this morning because he had a rattle in his chest, but luckily that turned out to be nothing and cleared up later.  He did a bit better than yesterday with the therapy, but still only lasted about 20 minutes.  He seemed pretty wiped out and as I watched him and talked to him I began to realize that he just seemed so depressed.  It made me feel very sad.  How do you tell a 2 yr old not to be depressed?  How do you make them feel better when they have to lay in a bed all day long? Especially when they don't really know what you are doing to them to begin with.

Well the good news was that today they clamped off Jacob's drain in is head to test it to see how it would do.  With the drain clamped off, we could take him out of bed more, sit him up more and just get him a bit more mobile.  At least it started out as good news.  After about a half a day of being clamped, we noticed he started leaking out of the drain.  So the nurse practitioner from neurosurgery had to come and asses the situation.  She cleaned things up a bit, put new dressing on, and noticed he had some fluid puffing on the left side and told us we had to unclamp the drain for a while.  So much for Jacob's freedom.  They unclamped the drain, and let it run at a lower pressure to take out some of that fluid and after an hour came to turn up the pressure a bit.  Jacob was doing pretty good, but by the time the changeover for the nurses came, he was leaking a bit again, so they had to turn the pressure back down a bit.  We will just have to see where it is at in the morning.  Dr. Ojemann did say that it happens often and that tomorrow the drain was going to come out regardless.  I guess what that will mean though is that we will just have to hope it does not create too much pressure in the head and cause too much fluid to be on the left side of his skull.  I guess they know what they are doing better than I do (since they are the experts, and I am not). 

I forgot to post this photo of Jacob's incision yesterday.  We were pretty impressed with the amount of hair that they left.  we even mentioned that to Dr. Ojemann and he told us that since he lost his hair a few years ago he had a lot more respect for hair now, so he liked to leave as much as he could.  I thought that was a pretty good answer.

Joshua hung out at the hospital with us pretty much most of the day and did pretty well.  He worked on his reading work for school and practiced writing out his numbers from 1 to 25 or so.  He also said that when they take out the drain to Jacob's head he will not be afraid of him or to touch him then, because I guess that is what has really been bothering him.  I suppose that is pretty good news, especially because I think Josh can help break Jacob out of his little funk.  He did go another day with eating well, but today he did not poop.  Hopefully tomorrow he will take care of that little problem.  I would hate to see him have to get another suppository. 
By the way I think I have forgottent to report that so far Jacob has not had a seizure since before he had the surgery on March 10th. :)

Poop Day!

Last night was Rick's night to stay at the hospital, so I stayed with Josh and waited until he got up this morning.  He slept in for a while and then got up and had breakfast and we took out time getting to the hospital.  I had talked to Rick and he said Jacob had a pretty good night, so we did not rush.  When we did get there I took one look at Jacob and said "what is wrong with him, he looks terrible".  He was so ashen color and so lethargic, I was worried.  I was beginning to think our luck was changing.  I asked Rick if he had gone poop yet, because he had been eating so much, and he told me he still had not.  The nurses were starting to get concerned too, so the had a suppository planned for him at noon.  So around noon they put it in and we waited.  Meanwhile Jacob fell back to sleep.  We had no idea how long it would take but we did ask questions about what we would do if it didn't work.  Luckily as we were talking about it all Jacob woke up and started to get very uncomfortable.  He then started grunting a bit and we then knew it was coming (and oh boy, did it come). As soon as we got one diaper changed, he filled another.  Immediately the color came back to his face and he had a look of relief.  He just all of the sudden seemed to feel so much better.  I truly felt better too.  I even got to get him out of bed when he managed to flip himself all of the way over on his belly in bed (while wearing a restraint on his left hand to prevent him from pulling out his drain).  I guess the nurse figured that was good cause to give him a reprieve from bed.  It was awesome because he fell asleep on my chest and did not move for about an hour.  I was happy!

After the pooping Rick actually felt better to leave and take Joshua to the top of the space needle.  They had a great time and stayed and hung out for a while and Josh got a small space needle to take home and carried it everywhere the rest of the night.  He even felt he needed to sleep with it, but we convinced him to put it next to him. 

My Mom decided she wanted to take tonight's shift to give Rick and I a break, so we let her.  We will see what tomorrow brings. 

March 13

We had another pretty good day, although Jacob has roommate who did not.  we woke up to a lot of crying and screaming and the nurses were struggling to comfort the poor little guy.  He was in a lot of pain and did not have his Mom there to help comfort him, but they had a few nurses doing their best to rock him and make him feel better while trying to make the pain go away.  I think after an hour or two of listening to the crying and such Jacob started getting a bit stressed. They finally got him somewhat settled (for a while anyway) and he had some family able to get there and Jacob relaxed again and was able to eat and sleep well again.  It did prevent me from being able to leave to go get coffee and something to eat for a while though (I did finally get some).  When Rick and Josh (and my Mom and sister Shaun) got there, I took a break and went over to the Ronald McDonald house to clean up and show Josh around the game rooms and play for a bit before we had to head back to the hospital.  When we did get back to the hospital they let us get Jacob out of bed for about 15 minutes.  He was looking a bit stir crazy being in that bed and hooked to everything for so long.  Especially because of the drain in his head, we have to get the nurse every time we have to readjust him so that his head stays at a certain level with their equipment.  Hopefully that drain will come out in the next day or so.  The Therapists are coming Monday morning, so the work is going to really begin to get him up and moving around more.    By the way, he does not look that happy in this photo, but I can assure everyone that he was content to get out of bed and snuggle with Rick and I, at least until he started to get tired again.  I think he just is giving me these looks when I take a picture of him to show me he does not always appreciate being shown in just his diaper. Although I am still working on getting a smile out of him, I think he is also still trying to figure out why we have him in this situation to begin with and might be a bit irritated with us.

Josh is getting more and more comfortable seeing Jacob with each day is seems.  He did have to leave the room when Jacob got out of bed, but he later told me that is was because he was afraid Jacob was going to pull off his wrap and he did not want to see the stitches on his head.  He will go back Monday with me and work on some reading work for school, and maybe we will check out some of the activities at the hospital in the sibling play room to keep him from getting too bored.  We will let you know Monday night how it all went.