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Asking for prayers for my son...


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I am praying for you and your son and your whole family. My husband had a craniotomy one year ago as well as other brain issues. It is so scary, and your son has had many more scares than my husband, for sure. You must be a pretty amazing mom. God IS in control.

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Hubby is on his way to the hospital to be with me for Jonathan's last surgery - #9. He's an add on, so he could go first or it could be later. They will put the shunt back in where it has been externalized. It shouldn't be a big surgery like the ones last Sat. and this Wed. but I know that this is it. Either it works or it doesn't. I have to tell you though, that last night about 11:00 the nurse came in and gave me his lab results for the CSF (cerebral spinal fluid) and I was more encouraged that this might actually work than I have been in a long while. Normal protein count in the CSF is 15-45 and Jonathan's was 878 last check. This makes the CSF very thick and difficult to drain. Well, last night's labs showed it at 122!! Wow! That was a huge difference. They were wanting it to be lower before internalizing the shunt today, but they were not expecting those good numbers! I wish I hadn't doubted.

 

Yesterday, I couldn't rejoice that the fluid had drained off the ventricles for having to have "talks" about end of life care. Today (and hopefully in the days to come) I pray that the Lord will help me have a new way of thinking so that instead of wondering "Will the shunt stop working today?", I can learn to rejoice by focusing instead on "Today the shunt is working!". Moment by moment, not thinking beyond the present and realizing that the Lord is always faithful regardless of what happens.

 

So today is a huge day for Jonathan and hopefully a new way of thinking for me. I'm a slow learner though. I'll keep you posted. And thanks again.

 

Penny

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Penny, I am so happy for the good news. I will continue to pray that Jonathan continues to improve each day. I will also pray for peace for you and your family. I can't imagine what you all are going through right now but you have been a real testimony to me and I'm sure many others.

 

Thanks for the updates!

 

God Bless,

Elise in NC

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Yesterday, I couldn't rejoice that the fluid had drained off the ventricles for having to have "talks" about end of life care. Today (and hopefully in the days to come) I pray that the Lord will help me have a new way of thinking so that instead of wondering "Will the shunt stop working today?", I can learn to rejoice by focusing instead on "Today the shunt is working!". Moment by moment, not thinking beyond the present and realizing that the Lord is always faithful regardless of what happens.

 

So today is a huge day for Jonathan and hopefully a new way of thinking for me. I'm a slow learner though. I'll keep you posted. And thanks again.

 

Penny

 

Praying for you and Jonathan and your husband - all of you involved.

 

The bolded above is brilliant - I think sometimes the biggest hurdle is realizing there is a different way of looking at a situation. You know that already and that will give you the courage to keep going. God bless your and your strength!

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Thank you to everyone - you bolster MY faith.

Praise! Jonathan is back in ICU and the Dr. is pleased with how the surgery went. The shunt was flowing very well when he placed the catheter in the abdomen. If Jonathan is doing well, he will go to the floor tomorrow. The fact that the protein is decreased and the shunt is flowing caused the Dr. to say, "I'm not giving up yet on this shunt; we may still have a few tricks left up our sleeve." It is obvious that the surgery on Wed. changed the playing field for the better. He did leave the right catheter externalized for now, although it is clamped, and if they run into any trouble they can access the shunt through it. If there are no indications of any problems in a few days, they will just remove the right catheter at the bedside. We got the feeling that Jonathan may be in the hospital until mid-week for observation.

 

Please continue to pray for Jonathan's healing and recovery.

In Christ, my hope,

Penny

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Thank you to everyone - you bolster MY faith.

Praise! Jonathan is back in ICU and the Dr. is pleased with how the surgery went. The shunt was flowing very well when he placed the catheter in the abdomen. If Jonathan is doing well, he will go to the floor tomorrow. The fact that the protein is decreased and the shunt is flowing caused the Dr. to say, "I'm not giving up yet on this shunt; we may still have a few tricks left up our sleeve." It is obvious that the surgery on Wed. changed the playing field for the better. He did leave the right catheter externalized for now, although it is clamped, and if they run into any trouble they can access the shunt through it. If there are no indications of any problems in a few days, they will just remove the right catheter at the bedside. We got the feeling that Jonathan may be in the hospital until mid-week for observation.

 

Please continue to pray for Jonathan's healing and recovery.

In Christ, my hope,

Penny

 

Continuing to pray. :grouphug:

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We are still in ICU but are continuing to be hopeful. He has kept down feeds for over 24 hours and is tracking with his eyes. He has spoken already as well. These are good signs.

Thanks again to everyone,

Penny

p.s. - tonight the other kids and my husband and I are going to have a mini celebration and watch fireworks on the river from the ICU waiting room which gives an excellent view. I finally felt the freedom to come home this weekend for the first time in 3 weeks to be with the other kids, and my husband and I will swap back tonight.

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We are still in ICU but are continuing to be hopeful. He has kept down feeds for over 24 hours and is tracking with his eyes. He has spoken already as well. These are good signs.

Thanks again to everyone,

Penny

p.s. - tonight the other kids and my husband and I are going to have a mini celebration and watch fireworks on the river from the ICU waiting room which gives an excellent view. I finally felt the freedom to come home this weekend for the first time in 3 weeks to be with the other kids, and my husband and I will swap back tonight.

:grouphug::grouphug::grouphug:

 

Great signs!

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We are still in ICU but are continuing to be hopeful. He has kept down feeds for over 24 hours and is tracking with his eyes. He has spoken already as well. These are good signs.

Thanks again to everyone,

Penny

p.s. - tonight the other kids and my husband and I are going to have a mini celebration and watch fireworks on the river from the ICU waiting room which gives an excellent view. I finally felt the freedom to come home this weekend for the first time in 3 weeks to be with the other kids, and my husband and I will swap back tonight.

So thankful for the good report. You are still in my prayers.:grouphug:

 

Oh, how I know how good it feels to really 'feel' it is ok to leave the room for more than just a few minutes and then to get to actually go home.:hurray:

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We are still in ICU but are continuing to be hopeful. He has kept down feeds for over 24 hours and is tracking with his eyes. He has spoken already as well. These are good signs.

Thanks again to everyone,

Penny

p.s. - tonight the other kids and my husband and I are going to have a mini celebration and watch fireworks on the river from the ICU waiting room which gives an excellent view. I finally felt the freedom to come home this weekend for the first time in 3 weeks to be with the other kids, and my husband and I will swap back tonight.

 

:grouphug::grouphug::grouphug: Enjoy your mini celebration and your time at home.

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We are so thankful! Jonathan came back to the neuro floor late yesterday out of ICU. God is good. Without his merciful intervention in Jonathan's life I truly don't believe we would be on the floor...much less going home tomorrow! Yes, that is the plan! The neuro-surgeons said that they had "exhaled" and that if we were comfortable, then they were comfortable. Home health nursing is in place, so we were good with the plan to go home tomorrow. And to think that a week ago we didn't know if Jonathan was going to make it home at all, or that there was a possibility of going home under hospice makes us very mindful of the grace of God to us during this time. Jonathan has been through so much (9 surgeries in all and 1 day short of 4 weeks in the hospital), and we know it will take time for him to gain his strength back. Again, we are just so thankful to the Lord.

 

Thank you to everyone for your encouragement and prayers during this time. You have been so patient in enduring my updates. When a crisis of this magnitude hits, your world comes to a screeching halt, but the Hive has been a tremendous blessing, and I thank you from the bottom of my heart.

 

Blessings,

Penny

p.s. - now I actually get to go home and start planning for the coming school year and a VERY adjusted start date...we usually start back the week after the 4th but that isn't happening this year and that's o.k.! :D

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We are so thankful! Jonathan came back to the neuro floor late yesterday out of ICU. God is good. Without his merciful intervention in Jonathan's life I truly don't believe we would be on the floor...much less going home tomorrow! Yes, that is the plan! The neuro-surgeons said that they had "exhaled" and that if we were comfortable, then they were comfortable. Home health nursing is in place, so we were good with the plan to go home tomorrow. And to think that a week ago we didn't know if Jonathan was going to make it home at all, or that there was a possibility of going home under hospice makes us very mindful of the grace of God to us during this time. Jonathan has been through so much (9 surgeries in all and 1 day short of 4 weeks in the hospital), and we know it will take time for him to gain his strength back. Again, we are just so thankful to the Lord.

 

Thank you to everyone for your encouragement and prayers during this time. You have been so patient in enduring my updates. When a crisis of this magnitude hits, your world comes to a screeching halt, but the Hive has been a tremendous blessing, and I thank you from the bottom of my heart.

 

Blessings,

Penny

p.s. - now I actually get to go home and start planning for the coming school year and a VERY adjusted start date...we usually start back the week after the 4th but that isn't happening this year and that's o.k.! :D

So glad to hear the good news.

If it is any consolation, my son went into the hospital, basically on the 3 of July,2010, we normally start our new year no later than the 15th of Aug., we came home from Denver on the 15th of Oct, 2010 and no we didn't do school while we were there.:tongue_smilie:I tried but it was just to much stress with everything else.

We are going to play a bit of catch up this year yet but it will be ok.:D The main thing is you are ALL going home to enjoy it.

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So glad to hear the good news.

If it is any consolation, my son went into the hospital, basically on the 3 of July,2010, we normally start our new year no later than the 15th of Aug., we came home from Denver on the 15th of Oct, 2010 and no we didn't do school while we were there.:tongue_smilie:I tried but it was just to much stress with everything else.

We are going to play a bit of catch up this year yet but it will be ok.:D The main thing is you are ALL going home to enjoy it.

 

Wow! Sounds like you've had a rough year! I hope things are better for you. Ours started last Sept., but we've had some good months up until April and not a long stretch like you had. I hope your catching up goes well, and you are right, we are ALL going home and that is what matters.

Blessings,

Penny

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Yes! We are back home and even though we are more tired than we realized, we are glad to be here. Jonathan is tolerating sitting in his wheelchair for longer periods of time and by all accounts seems to be at his baseline except for general weakness. It's pretty amazing. Thanks for asking.

Blessings,

Penny

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