Tray here...
We brought Jake home yesterday evening. He is doing better than anyone ever expected. We feel so blessed.
He will go back in on Monday to get his stitches out and meet with Dr. Menezes again. He will have MRI’s every 2-3 months for the first year and then every 6 months for a couple of years. If they see any change he will start radiation therapy immediately.
For the next 3 months he is supposed to have no intense physical activity and should not lift over 10 pounds. Jake is more disturbed about that than anything. He is now 137 lbs – he started the summer at 155. He thinks he is way too skinny and wants to work out but can’t. Keeping him compliant with doctor’s orders is going to be a challenge.
His doctors say he can probably go to college this fall if he can get back to University of Iowa Hospital for his MRI’s. They also say that they will not approve a mission outside of the US – ever. A mission in the US is probably okay after a year or so from the surgery if all is well, but they reserve judgment until then. Dr. Menezes says even then it is only OK if he can get back to Iowa to have MRI’s on schedule.
Overall we feel very blessed. We cannot thank each of you enough for your prayers, thoughts, and acts. We found that he had candles lit for him in an Italian Basilica, he was being prayed for in a monastery, he had a special prayer in his behalf by the Mormon Tabernacle choir, he was prayed for in a Jewish synagogue, and was prayed for in many churches and homes across the world. We believe that there had to be divine intervention to have received such an unexpected and positive outcome. He also had friends (both adult and his age) in the hospital comforting and entertaining him every day. People helped with meals, with our boys, with my work and Tammy’s teaching, etc… Again thank you all very much, and especially thanks to God for the miracles we have seen.
If anything changes we will get back to you all, but for now, we are signing out…. (I am signing out. Tammy may have more to say, as I often miss things.)
Love to all,
Tray
Tuesday, August 18, 2009
Home
Jake is home. We are so happy! Now he just needs to take it easy for the next 3 months. That is where patience comes in. This will be a great time for him to learn that virtue. Sometimes gifts are forced upon you.
Sunday, August 16, 2009
Sunday
We had lots of wonderful visitors who cheered Jake up. Still hoping to leave tomorrow. Here is a picture of Jake and his friends entertaining the nurses by singing. Still hoping to go home tomorrow.
Saturday, August 15, 2009
Miracles Do Happen
As I said yesterday, the tumor is a grade 1 (slow growing). There was talk of radiation, but the doctors decided that they will just keep a close eye on Jake and watch for any changes by MRIs and hope that it won't grow back. They said there was a 30-50% chance it could grow back, but if you look at the glass is half full theory then it is 50-70% chance that it won't grow back. The doctors said that if they see any changes at all, then they will zap it with radiation. So the good news is no radiation for now and hopefully never.
I wish you could see for your own eyes how well Jake is doing. In fact, if it wasn't for getting steroids to prevent swelling, he could go home. We think he will go home Monday. I know if it weren't for all of you and your faith and prayers we wouldn't be doing as well. I know I have felt strength through your prayers and good will. Thank you!!!!
Tammy
I wish you could see for your own eyes how well Jake is doing. In fact, if it wasn't for getting steroids to prevent swelling, he could go home. We think he will go home Monday. I know if it weren't for all of you and your faith and prayers we wouldn't be doing as well. I know I have felt strength through your prayers and good will. Thank you!!!!
Tammy
Friday, August 14, 2009
Day 4 and Great news
Great news! The pathology report came back and the tumor is a grade 1. Miracles do happen!!!! They are going to consult with radiation and see if they think radiation is necessary or not. We are very hopeful and excited. Thanks for all your prayers, thoughts, and fasting. We are so encouraged.
Tammy
Tammy
Thursday, August 13, 2009
3 days after surgery
Jake is doing awesome. He walked down the hall. They moved him to the pediatric floor. If everthing continues well, I think we will be able to go home on Monday. I washed Jake's hair that they didn't shave. We will have to shave it when we get home to match. Here is a picture of his ouchy.
Thursday morning report
Tray here...
- Last night was the best night yet. He had a little trouble keeping his Oxygen level up when he was sleeping but otherwise he rested well.
They have given orders that he can leave PICU sometime today.
He got up and went to the bathroom in a normal toilet, he still walks like a stiff and uncoordinated Frankenstein, but he is walking.
His speech is still slow and slurred, he says he has to think about each word he says but the Doctors think that issue will disappear soon as the swelling etc in his head goes down.
They changed the dressing this morning. That was pretty painful but just normal for an incision. It appears like they cut along the same line as the previous scar – About 7 inches long from the middle of his neck to a little below the crown of his head.
He has staples in an incision above his temple where they screwed his head in place during the surgery. He gets those staples out today.
The issues we will need to deal with in the next few days include watching for Hydrocephalous which is a decreasing risk, regaining smooth speech, and determining whether or not radiation therapy in necessary and what kind to use.
We feel so lucky and blessed that his recovery thus far has been so fast and complete. He can walk, talk, hear, see, and move all his limbs. All of those things were concerns going in. Everyone, especially his surgeon, is exceedingly pleased at how the surgery went and the rapid recovery over the last 24 hours. Thanks to all for your prayers and thoughts in his behalf.
Tray
Wednesday, August 12, 2009
2nd day after surgery
Today was a great day! Jake is eating and he got up tonight and walked out of his room and visited the little boy next door. He looks like Frankenstien walking, but he is up and not complaining as much. It is a huge impovement from just this morning. The doctor came in and was very pleased. He told us we had him (doctor) running yesterday. He said he was very concerned about Jake (we didn't realize that). The nurse told us after he left that they had never seen so much of the doctor. She said, "I don't know what you have done, but he must like you." The doctor is a good surgeon, but when he talks, everyone jumps to attention. Although, I have not heard any negative comments. They all say, "you have the best and people come all over the world to see him." I guess a way to summarize him is he demands respect and perfection.
On a lighter note, they may move Jake out of PICU and I asked if Jake could go to the pediatric floor (much better care). The doctor got a twinkle in his eye and asked Jake how old he was. Jake said, "18." He said,"I think he could go to the pediatric floor as long as he doesn't pinch the nurses." He left the room laughing.
Anyway, great day and I assume better ones to come.
Tammy
On a lighter note, they may move Jake out of PICU and I asked if Jake could go to the pediatric floor (much better care). The doctor got a twinkle in his eye and asked Jake how old he was. Jake said, "18." He said,"I think he could go to the pediatric floor as long as he doesn't pinch the nurses." He left the room laughing.
Anyway, great day and I assume better ones to come.
Tammy
wed-mid morning
Tray here...
Last night was a lot better, Jake slept quite a bit and only had trouble forgetting to breathe once. I stood there for about 30 minutes telling him to breath every 15 seconds. He was pretty annoyed at me but when we didn’t tell him to breath his 02 saturation would drop as low as 75%.
The Dr. said that they would keep him in PICU for another day but they want to get him up and walking. He is afraid of the pain but willing. He is still having a lot of pain in his neck and bad headaches. His speech is pretty slurred but they said that will probably resolve itself over the next week or so.
He is spending time now listening to Tiffany read one of the Harry Potter books to him. When they were younger Tiffany used to read to him all the time.
All is well and Jake is a lot better today. Again, thank you all for your prayers and thoughts in his behalf.
Tray
Last night was a lot better, Jake slept quite a bit and only had trouble forgetting to breathe once. I stood there for about 30 minutes telling him to breath every 15 seconds. He was pretty annoyed at me but when we didn’t tell him to breath his 02 saturation would drop as low as 75%.
The Dr. said that they would keep him in PICU for another day but they want to get him up and walking. He is afraid of the pain but willing. He is still having a lot of pain in his neck and bad headaches. His speech is pretty slurred but they said that will probably resolve itself over the next week or so.
He is spending time now listening to Tiffany read one of the Harry Potter books to him. When they were younger Tiffany used to read to him all the time.
All is well and Jake is a lot better today. Again, thank you all for your prayers and thoughts in his behalf.
Tray
Tuesday, August 11, 2009
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
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
First day after surgery
Morning news:
Jake is medically doing well but had a very uncomfortable night. They are unable to give him much pain medication because when they do he breathes too shallow and infrequent so he us quite uncomfortable. We have to keep waking him up and reminding him to breath deep.
He blew out two of his IVs during the night.
The CT scan that they did yesterday evening came back looking just fine. He has a pocket of air in his head that they are watching. They are giving him oxygen full time – they said that will help the air pocket to absorb sooner.
Physically he had a bandage covering the full length of the back of his neck up to the crown of his head. He also has 2-4 staples in the sides of his head where they had his head bolted during surgery. He has an arterial IV and two vein IVs.
Afternoon news by Tammy:
He is having ups and downs today, but they have been doing pretty good about keeping the pain in control. He went for an MRI and the news was great on that. I assume that is good news about hydrocephalus. Still air in their though. He hates the oxygen mask and complains constantly about it. He’s doing about as well as he could be. From here on out it should be up hill (well at least we hope). We will get pathology report in a couple of days that will tell us more about the tumor. Thinking positively though.
Jake is medically doing well but had a very uncomfortable night. They are unable to give him much pain medication because when they do he breathes too shallow and infrequent so he us quite uncomfortable. We have to keep waking him up and reminding him to breath deep.
He blew out two of his IVs during the night.
The CT scan that they did yesterday evening came back looking just fine. He has a pocket of air in his head that they are watching. They are giving him oxygen full time – they said that will help the air pocket to absorb sooner.
Physically he had a bandage covering the full length of the back of his neck up to the crown of his head. He also has 2-4 staples in the sides of his head where they had his head bolted during surgery. He has an arterial IV and two vein IVs.
Afternoon news by Tammy:
He is having ups and downs today, but they have been doing pretty good about keeping the pain in control. He went for an MRI and the news was great on that. I assume that is good news about hydrocephalus. Still air in their though. He hates the oxygen mask and complains constantly about it. He’s doing about as well as he could be. From here on out it should be up hill (well at least we hope). We will get pathology report in a couple of days that will tell us more about the tumor. Thinking positively though.
Monday, August 10, 2009
Surgery All Done
We just met with Doctor Menezes following the operation. Jake is still in recovery. The surgery went more quickly than expected. They were closing him up in 6.5 hours. The tumor was quite a bit bigger than they thought and was intertwined with the brain tissue around it. It was also almost twice the size that it appeared in the films. From what he could see of the tumor the doctor things that it is grade 2 or higher – indicating follow-up radiation therapy. Jacob will be disappointed about that but we will help him deal with whatever is necessary The surgery went as well as it could go but it was also more difficult than they thought. There was a lot of scar tissue and the tumor was very deep in his head – 3-4 inches… almost in the middle of his head next to the brain-stem. . They had to cut away a lot more of the bone to get in and past the scar tissue. There was also a lot of scar tissue between shelf separating the cerebrum and the cerebellum and on the cerebellum itself. He said that it was very difficult to get into the area where the tumor was and the tumor was on and around some very critical areas of the brain just as expected. The Doctor said that if the tumor does come back it will be extremely difficult to remove again. They got everything closed up fine. To get the bone attached they used two Titanium plates, one on each side of the back of his head. That should present no further problem. One of the most dangerous things now is hydrocephalus. The ventricles were so small that they did not think they could get a ventricular drain in so they did not try. They will watch him closely. For the next 48 hours he will be in critical condition and in pediatric intensive care. Jake has kept his humor and keeps us all laughing, even amidst his pain. His friends have been here all day and they are making a documentary of Jake's experience. Jake will love that when he is feeling better.
Sunday, August 9, 2009
the night before surgery....
Tray here...
I was the night before surgery and all through the Ronald McDonald House were Jakes friends and family playing bull**** and enjoying life…
The surgery is tomorrow at 8:00 – we will go in to the hospital at 6:00 am. We expect the surgery to take 6-8 hours.
Jake had a great week with his friends. His band Funkulele practiced a lot and then recorded their first CD. Jakes girlfriend Amanda planned a private surprise prom for him. All of the family and friends gathered to watch UFC fight-night (even Tammy, who thinks UFC is evil, watched for a while.) Today we attended Church and gave Jake a priesthood blessing then drove to Iowa City.
We were offered a room at the Ronald McDonald house for the week. It is very near the hospital and will be comfortable and convenient. Several of Jake’s friends are staying at other friend’s apartments at University of Iowa and will be spending the week here to entertain Jake. Amanda, his girlfriend, and her mother got a hotel and plan to spend much of the week here as well. One of Jake’s school teachers (now a close family friend) is spending the day with us tomorrow as are several friends from Des Moines. Christy came so we have all of our family here except one son-in-law. (Someone has to keep the money flowing in) Christy, Tiffany and Corey are with us in Iowa City for the surgery tomorrow. Lexie Jo is staying home to manage the younger boys and the grandbabies. Friends in the area are helping get the younger boys to Football practice, having them over to entertain them, etc. It is amazing to us, and very humbling, how much support we have.
We played games all evening with Jake’s friends and had a wonderful time, my jaw hurts from laughing so much.
We are hopeful and positive. However things turn out, we will know we had a great week together and that the Lord loves him and us. We will take whatever happens and make the best of it.
Thanks to all of you for your prayers, thoughts and support.
Tammy started a blog to keep everyone up to date. t-n-tnews.blogspot.com.
Tray
I was the night before surgery and all through the Ronald McDonald House were Jakes friends and family playing bull**** and enjoying life…
The surgery is tomorrow at 8:00 – we will go in to the hospital at 6:00 am. We expect the surgery to take 6-8 hours.
Jake had a great week with his friends. His band Funkulele practiced a lot and then recorded their first CD. Jakes girlfriend Amanda planned a private surprise prom for him. All of the family and friends gathered to watch UFC fight-night (even Tammy, who thinks UFC is evil, watched for a while.) Today we attended Church and gave Jake a priesthood blessing then drove to Iowa City.
We were offered a room at the Ronald McDonald house for the week. It is very near the hospital and will be comfortable and convenient. Several of Jake’s friends are staying at other friend’s apartments at University of Iowa and will be spending the week here to entertain Jake. Amanda, his girlfriend, and her mother got a hotel and plan to spend much of the week here as well. One of Jake’s school teachers (now a close family friend) is spending the day with us tomorrow as are several friends from Des Moines. Christy came so we have all of our family here except one son-in-law. (Someone has to keep the money flowing in) Christy, Tiffany and Corey are with us in Iowa City for the surgery tomorrow. Lexie Jo is staying home to manage the younger boys and the grandbabies. Friends in the area are helping get the younger boys to Football practice, having them over to entertain them, etc. It is amazing to us, and very humbling, how much support we have.
We played games all evening with Jake’s friends and had a wonderful time, my jaw hurts from laughing so much.
We are hopeful and positive. However things turn out, we will know we had a great week together and that the Lord loves him and us. We will take whatever happens and make the best of it.
Thanks to all of you for your prayers, thoughts and support.
Tammy started a blog to keep everyone up to date. t-n-tnews.blogspot.com.
Tray
Tuesday, August 4, 2009
Jake's surgery date
Jake's surgery is set August 10. We still do not know what time. They will call on Friday and let us know. We assume it is in the morning. It will be around 6-8 hour surgery. We will keep you posted.
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