Tuesday evening

Tray here. My thoughts below:

It has been a slow day with lots happening, much of which we have reported already. Although he is quite uncomfortable and there are some post-surgical complications, the neurological tests and MRI look very good. We are quite happy about that.

They have not decided for sure yet so we have not talked to Jacob about the likelihood of radiation therapy. He really did not what to have to do that. He has enough to deal with at the moment so we will save that info for a later time.

Jake is still forgetting to breath when he relaxes so they have altered the medication and taken him off all narcotics. Narcotics have been withheld for two hours and he is still comfortable but we are a little concerned that it will be a long night. He has been having quite a bit of pain in the lower back part of his head where they cut out the skull and put in the metal plates. He also complains of bad headaches.

They tried to get him to set-up mid-afternoon but it caused a lot of pain. After several minutes they quite trying because he was breaking out in red and white blotches and his face was swelling. It was kind of scary. This happened once before during the day when he was in bad pain. They are watching that but are not sure why.

Jake still has 3 friends here full time (Matt, Adam, Amanda and Amanda’s Mom Donna) as well as Tammy, Tiffany and I. Charise Barber is with her mother Robin who also had brain surgery and is back in the hospital with post-operative infection. Charise has been staying here in PICU with us some of the time. The group has a big nice waiting area and they have been making-up songs and filming a documentary about Jake’s experience here. It has been good for Jake to have them step in from time to time. He actually laughed once today. Jake has been pretty drugged and has come up with some funny lines. I have noted a few of the funniest.

While everyone was in the room yesterday he got a strange look on his face, open his eyes and said –“I have to adjust myself.”…As he did he said “There is defiantly a tube up my penis.”
As the nurse and I were trying to change his sheets after he threw up I took the bare side to protect his privacy a little. His eyes were shut and we were not even aware he was conscious when he said, “Dad, quite checking out my butt.”
Amanda was helping him try to get his head shifted on the pillow and said, “I will say one, two, three, and then we can try together.” He opened his eyes and squinted up at her and said “One, two, three, PISH POSH. You haven’t had brain surgery.” Then kind of grinned and said, “Ok, one, two, three….” And tried to move his head up.
When he tries to move his head he grabs the hair they left on the top of his head and pulls his head up using the hair as a handle. The nurses say nothing but frown a little at the move. When we were trying to move him up on the bed he asked me to lift his head using his hair, I obliged, grabbed a handful of hair and lifted his head so we could get a pillow under it. Someone said ouch, don’t do that. Jacob quickly spoke back and said, “It is the best way, why else would they leave hair up there.”

Personally, I slept for almost 5 hours this afternoon and am preparing for another night with Jake. I was getting a little blurry eyed so rest was necessary. Tammy is doing well and said that she had a great nights sleep last night. Tammy and Tiffany also got a few hours of sleep during the day. Tammy and Tiffany will probably go back to the Ronald McDonald house tonight to sleep. Jacob’s friends will be here tomorrow as well.

He will remain in intensive care in critical condition for the next day at least. The care he is receiving is very good and we would give the hospital high marks for both compassion (for patient and family) and competence.

For those in the area, he is still not up for visitors, except occasionally when he is alert and not hurting. There is no way to predict when that will be so visitors have a high chance that all they could do is see him laying there. Tammy and I stay pretty busy helping him and resting. Visitors may be appreciated late in the week. We will note on this blog when that is the case.

Thank you all for your prayers and thoughts. We feel fortunate that things are going as well as they are and are staying positive about the future.

Tray