McQ
07-10-2004, 02:07 PM
Friday from Jen:
Samuel jsst had his 6th surgery in six weeks yesterday. Now he has a third ventriculostomy. We are all praying that this will solve the hydrocephalus and he will not need to be shunted. Please PLEASE pray for a miracle here. If this does not work, they will shunt him again into the abdomen where it did not absorb last time. This will start a horrible circle of surgeries again if the 3rd ventric does not work. He looks tired and DONE with surgery now. I cannot take anymoer, and I don't possibly know how he can either but he keeps trucking along nevertheless. Please please pray tonight. The neurosurgeons make a decision tomorrow. We are in ICU again. We hate it. Anna cannot stay.
I have little to no access to a puter now and am using my time with Samuel to send this. Our website is not currently letting us update our software so we cannot post upddates there. I cannot get home to solve the computer issue which I bel;ieve is on our end. We are trying to see if we can find a used laptop puter or if my mom can find a local company to donate one to us for the interim.
Thanks to those who sent packages to us. I do not have time to thank you individually so please forgive me. It would be helpful if those who send things send a phone # as it is easier for me to give you a quick call rather than a note. I would love to thank you personally, of course. Stacie L, I know you are on this list THANK YOU! MOre than you know.
Kristina will hopefully send a more detailed update later. I am off to love Samuel for now.
Thank so much for your continued prayers and love. Please intercede on our behalf tonight.
Much love,
Jen
++++++++++++++++++++++++++++++++++++++++++++++
Later on Friday from Kristina:
Hi Guys -
To explain Samuel's surgery, you have these large spaces in the center of your brain called ventricles. They are always filled with a normal amount of fluid, but two of Samuel's are too full and that makes them expand, which puts pressure on his brain, which causes him to zone out to no-man's land and stop talking, reacting, etc. What the doc did was to put a drain from the two overfilled ventricles into a third ventricle in the hopes that the excess fluid would drain into this third ventricle and would then be absorbed. If this works, he will never need a shunt. If it doesn't, he has to have another brain surgery where they put a tube (shunt) into the overfilled ventricles, snake it down the side of his neck (under his skin) and into his abdomen. This did not work last time and he would have it for life so you can see why Jen is hoping against hope that this works. This was a MAJOR brain surgery he had yesterday.
As Jen said, when you send things to her, please include your phone number if you are comfortable with that because it makes her feel so bad that she doesn't have time to write acknowledgements/thank you's to people, whereas she has time for a quick phone call (FYI - a phone card would be a good gift). She was rambling/gushing about some of the nice gifts she has received lately. Here is some of what she said:
-Someone she doesn't know personally came to the hospital gift shop and picked out stuff for them (she loved the magazines) to then send to their room. She was very moved by that.
-Someone sent a duckie book and rattle and squeezy toy and Samuel somehow found the strength to hold that book with both hands for a minute or two - it interested him that much!
-Someone sent a Veggie Tales movie - S C O R E!!!!!!!
-Someone sent a cool shirt for Samuel.
-Someone won an auction at Equanimity Baby (Stacee, forgive me if I spelled that wrong) and then donated her item to Jen! So now Jen gets to get a back carrier Mai Tai sling from this awesome place! She is so excited because she really needs to carry Anna on her back so she can lean over the bed and take care of Samuel. She is so very thrilled and CAN'T WAIT to receive it!!
Again, those are just some of her comments. SHE knows who sent what, forgive me that I couldn't keep track as she was just gushing on and on and on. You guys are really making her feel special and are giving light to her days with your thoughtfulness. Hmmm... I still haven't sent her a thing... you guys are making me look bad! Just teasing.
The hotel arrangement has been working out so well!! She has been taking time to give attention to the other kids, which is awesome. The were able to go out to dinner last night at AZTECA (thanks so much to whoever provided that!). Can you imagine how nice it must have been to go out to a restaurant and have a nice meal together? Everyone except Samuel was there.
Jen wants to know what is going on with Levi. Please post any info to this group and I will call her and give her the info. Thanks in advance for that.
More as it becomes available.
Affectionately,
Kristina
++++++++++++++++++++++++++++++++++++++++++++++
One more from Jen yesterday:
Hi All,
Just a quick note tonight. I got on the hotel computer for a bit. I miss you all, BTW. I am feeling very lonely without reading your notes daily and even updating my site. Living so far from home in a hotel or hospital is not much fun. But we are together.
Anyway, I forgot to mention that those who know they are receiving pouches, these shipped today. I literally had to have Mark bring out the machine from home to finish up. Melissa J, your pouch shipped too. I hope you will love it. The proceeds were sent to Levi's Mom, April Dawn, I only wish I could do more for them.
Thanks for sending the update to the group about Live, I read this tonight and now know what to pray for him.
After sending the note earlier, I went into see Samuel and his pressure looked better than it had earlier. Our new Onc, whom I acutally LIKE, came in. I asked him if he had any news and he said he was just coming in as a concerned friend. My Mom and I prayed that if while we were at Mary Bridge, it was not the right polace, that we would be moved and now we are here in Seattle and I have such peace now. It was truly a God move as evidenced by the hotel that is being paid for by my insurance. We all know that that is a miracle in itself as normally insurance does not cover your accomodations. The hotel is paid for another week. I dare not even ponder that we might go home by then, just does not seem possible. At times it seems like we will never get home. You all keep saying we will. Thank you for that. I am usually a positive person but I feel that my joy is gone at times, it is hard to be optimistic though I don't feel so much like the other shoe is going to drop here. The
nurses have been great though I do miss some of the nurses from MB and the social workders as well. Several have called to check on us. We are hanging in there though I feel so guilty taking a swim and play with the kids while Samuel lays in his bed miserable. Our Onc mentioned the thrid ventricle being thickened and pondered aloud that maybe Samuel had Meningitis some time ago as well. Then mumbled something about neurological changes that were not reversible and I cannot even fathom him not talking again so I rebuke that now and pray that he will go home and talk a lot.
He loved the gifts from you ladies, many of whom I do not know. Thanks to the one who came to the hospital and shopped for us there, introduce yourself next time, okay? The book sent to me is awesome! Kaysha and Daniel are thrilled to get their gifts as well, thank you! Also, big thanks to those who sent letters and cards. I keep them with me at all times and read them often, I cherish them and the time you spent doing them. Thank you, God bless you. You are all wonderful, I miss being able to write and tell you that you are all THE BEST. Much love to you who pray for us, for Samuel. You warm my heart, bring joy to a boy who just had surgery again and got to get some new things to make him try to smile, or laugh. Just to be happy for a minute is a joy to me. I would give anything, all the money in the world,just to get my boy back.
The staff at this hospital have shown us great favor, and are so sympathetic to our situation that I am in disbelief. We are where we needed to be. Thank you to you all, I just don't know what more to say. You are the best. Please keep praying for Samuel and I will pray that God bless each and all of you.
Much love to you and yours, kiss your babies, cherish them tonight.
Jen
Samuel jsst had his 6th surgery in six weeks yesterday. Now he has a third ventriculostomy. We are all praying that this will solve the hydrocephalus and he will not need to be shunted. Please PLEASE pray for a miracle here. If this does not work, they will shunt him again into the abdomen where it did not absorb last time. This will start a horrible circle of surgeries again if the 3rd ventric does not work. He looks tired and DONE with surgery now. I cannot take anymoer, and I don't possibly know how he can either but he keeps trucking along nevertheless. Please please pray tonight. The neurosurgeons make a decision tomorrow. We are in ICU again. We hate it. Anna cannot stay.
I have little to no access to a puter now and am using my time with Samuel to send this. Our website is not currently letting us update our software so we cannot post upddates there. I cannot get home to solve the computer issue which I bel;ieve is on our end. We are trying to see if we can find a used laptop puter or if my mom can find a local company to donate one to us for the interim.
Thanks to those who sent packages to us. I do not have time to thank you individually so please forgive me. It would be helpful if those who send things send a phone # as it is easier for me to give you a quick call rather than a note. I would love to thank you personally, of course. Stacie L, I know you are on this list THANK YOU! MOre than you know.
Kristina will hopefully send a more detailed update later. I am off to love Samuel for now.
Thank so much for your continued prayers and love. Please intercede on our behalf tonight.
Much love,
Jen
++++++++++++++++++++++++++++++++++++++++++++++
Later on Friday from Kristina:
Hi Guys -
To explain Samuel's surgery, you have these large spaces in the center of your brain called ventricles. They are always filled with a normal amount of fluid, but two of Samuel's are too full and that makes them expand, which puts pressure on his brain, which causes him to zone out to no-man's land and stop talking, reacting, etc. What the doc did was to put a drain from the two overfilled ventricles into a third ventricle in the hopes that the excess fluid would drain into this third ventricle and would then be absorbed. If this works, he will never need a shunt. If it doesn't, he has to have another brain surgery where they put a tube (shunt) into the overfilled ventricles, snake it down the side of his neck (under his skin) and into his abdomen. This did not work last time and he would have it for life so you can see why Jen is hoping against hope that this works. This was a MAJOR brain surgery he had yesterday.
As Jen said, when you send things to her, please include your phone number if you are comfortable with that because it makes her feel so bad that she doesn't have time to write acknowledgements/thank you's to people, whereas she has time for a quick phone call (FYI - a phone card would be a good gift). She was rambling/gushing about some of the nice gifts she has received lately. Here is some of what she said:
-Someone she doesn't know personally came to the hospital gift shop and picked out stuff for them (she loved the magazines) to then send to their room. She was very moved by that.
-Someone sent a duckie book and rattle and squeezy toy and Samuel somehow found the strength to hold that book with both hands for a minute or two - it interested him that much!
-Someone sent a Veggie Tales movie - S C O R E!!!!!!!
-Someone sent a cool shirt for Samuel.
-Someone won an auction at Equanimity Baby (Stacee, forgive me if I spelled that wrong) and then donated her item to Jen! So now Jen gets to get a back carrier Mai Tai sling from this awesome place! She is so excited because she really needs to carry Anna on her back so she can lean over the bed and take care of Samuel. She is so very thrilled and CAN'T WAIT to receive it!!
Again, those are just some of her comments. SHE knows who sent what, forgive me that I couldn't keep track as she was just gushing on and on and on. You guys are really making her feel special and are giving light to her days with your thoughtfulness. Hmmm... I still haven't sent her a thing... you guys are making me look bad! Just teasing.
The hotel arrangement has been working out so well!! She has been taking time to give attention to the other kids, which is awesome. The were able to go out to dinner last night at AZTECA (thanks so much to whoever provided that!). Can you imagine how nice it must have been to go out to a restaurant and have a nice meal together? Everyone except Samuel was there.
Jen wants to know what is going on with Levi. Please post any info to this group and I will call her and give her the info. Thanks in advance for that.
More as it becomes available.
Affectionately,
Kristina
++++++++++++++++++++++++++++++++++++++++++++++
One more from Jen yesterday:
Hi All,
Just a quick note tonight. I got on the hotel computer for a bit. I miss you all, BTW. I am feeling very lonely without reading your notes daily and even updating my site. Living so far from home in a hotel or hospital is not much fun. But we are together.
Anyway, I forgot to mention that those who know they are receiving pouches, these shipped today. I literally had to have Mark bring out the machine from home to finish up. Melissa J, your pouch shipped too. I hope you will love it. The proceeds were sent to Levi's Mom, April Dawn, I only wish I could do more for them.
Thanks for sending the update to the group about Live, I read this tonight and now know what to pray for him.
After sending the note earlier, I went into see Samuel and his pressure looked better than it had earlier. Our new Onc, whom I acutally LIKE, came in. I asked him if he had any news and he said he was just coming in as a concerned friend. My Mom and I prayed that if while we were at Mary Bridge, it was not the right polace, that we would be moved and now we are here in Seattle and I have such peace now. It was truly a God move as evidenced by the hotel that is being paid for by my insurance. We all know that that is a miracle in itself as normally insurance does not cover your accomodations. The hotel is paid for another week. I dare not even ponder that we might go home by then, just does not seem possible. At times it seems like we will never get home. You all keep saying we will. Thank you for that. I am usually a positive person but I feel that my joy is gone at times, it is hard to be optimistic though I don't feel so much like the other shoe is going to drop here. The
nurses have been great though I do miss some of the nurses from MB and the social workders as well. Several have called to check on us. We are hanging in there though I feel so guilty taking a swim and play with the kids while Samuel lays in his bed miserable. Our Onc mentioned the thrid ventricle being thickened and pondered aloud that maybe Samuel had Meningitis some time ago as well. Then mumbled something about neurological changes that were not reversible and I cannot even fathom him not talking again so I rebuke that now and pray that he will go home and talk a lot.
He loved the gifts from you ladies, many of whom I do not know. Thanks to the one who came to the hospital and shopped for us there, introduce yourself next time, okay? The book sent to me is awesome! Kaysha and Daniel are thrilled to get their gifts as well, thank you! Also, big thanks to those who sent letters and cards. I keep them with me at all times and read them often, I cherish them and the time you spent doing them. Thank you, God bless you. You are all wonderful, I miss being able to write and tell you that you are all THE BEST. Much love to you who pray for us, for Samuel. You warm my heart, bring joy to a boy who just had surgery again and got to get some new things to make him try to smile, or laugh. Just to be happy for a minute is a joy to me. I would give anything, all the money in the world,just to get my boy back.
The staff at this hospital have shown us great favor, and are so sympathetic to our situation that I am in disbelief. We are where we needed to be. Thank you to you all, I just don't know what more to say. You are the best. Please keep praying for Samuel and I will pray that God bless each and all of you.
Much love to you and yours, kiss your babies, cherish them tonight.
Jen