Friday, December 31, 2010
Out
Just a brief update - just found out he did get transferred out of ICU this evening - Praise the Lord! He is at Herman Memorial TMC (downtown Houston).
Out of ICU (maybe)
Around 4:00 one of the neurosurgeon residents came to talk with us (the head neurosurgeon was still in surgery). They had determined that Mark no longer needs to be in ICU - which is great! But there are no open beds on the regular neuro floor. So he will move to the floor once a bed opens up. The good thing is that he is no longer considered critical. Travis and I were able to spend the entire day with him (other than when they did some tests and the mri) and he was doing very well. They are controlling his pain and we were able to carry on some nice conversations. Praise the Lord for that special time!
The results of the mri were not new to us. They noticed the tumor putting pressure on the thalamus and they noticed the arnold chiari malformation. They said that the tonsil descent is significant. These were all things we already knew.
How we proceed is somewhat of a problem. The chiari issue is starting to cause significant issues for Mark. He has lost a lot of function and control of different things. His balance is severely affected, he has to have a catheter and he does have some loss of sensation in his fingers and toes and various other issues too numerous to name. So the logical step in chiari issues would be to do the decompression surgery. However, the complication is that we still don't know if there are leaks.
If there are still leaks then the decompression could be a relief temporarily but very soon would be an issue again. So we have to determine IF he is still leaking csf fluid from his spine and WHERE the leaks are if he is. The where is important. Because if it is still spontaneous leaks they need to be repaired before we proceed with surgery. If the there are leaks up by where the chiari malformation is then hopefully the surgery would help to resolve those (and need to be patched during surgery).
If the leaks are in the spine the question as to how to stop them is also there - the blood patches may or may not be working/have worked/will work. If the blood patches don't work he will need to have the nerves that are where the leaks are cut and tied off. This could mean a number of different things like nerve damage, muscle issues or paralysis. So obviously blood patches would be better!
If there aren't leaks then we will proceed with the decompression right away.
The doctor even commented that as bad as he is getting we may need to proceed with the surgery and then address the leaks. If you are wondering why they don't just do that anyway, well, we asked. But a resident doesn't necessarily have all the answers. He said they may be what we do, but there are a lot of issues involved here. Mark is a unique case.
He also looked us in the eye and said that he might not get better. Some people with these issues don't. His case is very unique. It's not as easy as people who just have arnold chiari malformation, or someone with just leaks, or someone with just a tumor - all of those issues can be serious and significant - and he has all 3! That was a lot to take.
We have a mixture of feelings after today. We are sad and scared, but we are also hopeful and trusting. We are sad that Mark is still in pain and still has so long to go. But we also place our hope and trust in God. We know that he has lined up every event in perfect timing so that we are where we need to be to bring Him glory. We will continue to place our trust in Him - that He will guide us to know what to do, and that He will guide the doctors and surgeons to know the timing and order of the procedures and surgery(s) that need to take place. Thank you for your continued prayers! I will close with something that I have included before, but it speaks our hearts so clearly: (by Kerrie Roberts)
I’m running back to your promises one more time, Lord that’s all I can hold on to,
I gotta say this has taken me by surprise, but nothing surprises you.
Before a heartache can ever touch my life, it has to go through Your hands,
and even though I, keep asking why, I keep asking why,
No matter what, I’m gonna love You, no matter what I’m gonna need You,
I know that You can find a way to keep me from the pain
but if not, if not, I’ll trust you, no matter what, no matter what.
God can and will heal Mark from this pain in HIS time and to HIS glory - we trust HIM!
Love to you all!
The results of the mri were not new to us. They noticed the tumor putting pressure on the thalamus and they noticed the arnold chiari malformation. They said that the tonsil descent is significant. These were all things we already knew.
How we proceed is somewhat of a problem. The chiari issue is starting to cause significant issues for Mark. He has lost a lot of function and control of different things. His balance is severely affected, he has to have a catheter and he does have some loss of sensation in his fingers and toes and various other issues too numerous to name. So the logical step in chiari issues would be to do the decompression surgery. However, the complication is that we still don't know if there are leaks.
If there are still leaks then the decompression could be a relief temporarily but very soon would be an issue again. So we have to determine IF he is still leaking csf fluid from his spine and WHERE the leaks are if he is. The where is important. Because if it is still spontaneous leaks they need to be repaired before we proceed with surgery. If the there are leaks up by where the chiari malformation is then hopefully the surgery would help to resolve those (and need to be patched during surgery).
If the leaks are in the spine the question as to how to stop them is also there - the blood patches may or may not be working/have worked/will work. If the blood patches don't work he will need to have the nerves that are where the leaks are cut and tied off. This could mean a number of different things like nerve damage, muscle issues or paralysis. So obviously blood patches would be better!
If there aren't leaks then we will proceed with the decompression right away.
The doctor even commented that as bad as he is getting we may need to proceed with the surgery and then address the leaks. If you are wondering why they don't just do that anyway, well, we asked. But a resident doesn't necessarily have all the answers. He said they may be what we do, but there are a lot of issues involved here. Mark is a unique case.
He also looked us in the eye and said that he might not get better. Some people with these issues don't. His case is very unique. It's not as easy as people who just have arnold chiari malformation, or someone with just leaks, or someone with just a tumor - all of those issues can be serious and significant - and he has all 3! That was a lot to take.
We have a mixture of feelings after today. We are sad and scared, but we are also hopeful and trusting. We are sad that Mark is still in pain and still has so long to go. But we also place our hope and trust in God. We know that he has lined up every event in perfect timing so that we are where we need to be to bring Him glory. We will continue to place our trust in Him - that He will guide us to know what to do, and that He will guide the doctors and surgeons to know the timing and order of the procedures and surgery(s) that need to take place. Thank you for your continued prayers! I will close with something that I have included before, but it speaks our hearts so clearly: (by Kerrie Roberts)
I’m running back to your promises one more time, Lord that’s all I can hold on to,
I gotta say this has taken me by surprise, but nothing surprises you.
Before a heartache can ever touch my life, it has to go through Your hands,
and even though I, keep asking why, I keep asking why,
No matter what, I’m gonna love You, no matter what I’m gonna need You,
I know that You can find a way to keep me from the pain
but if not, if not, I’ll trust you, no matter what, no matter what.
God can and will heal Mark from this pain in HIS time and to HIS glory - we trust HIM!
Love to you all!
Waiting
We are in a waiting period right now. They did an MRI here this morning and hope to have results yet today, however they did comment on it being new year's eve which usually means a lot of accidents. So depending on that we may not get the results till tomorrow. Until they read the mri they won't really have a plan in place as far as treatment goes. The nurse did say that it sounds like he will transferred to a regular bed later today since he has been stable since yesterday afternoon. Praise the Lord for that! It is quite a process right now to visit him, and it will be nice to know that he isn't as critical. They are monitoring a lot of things right now just to rule out that there aren't further complications or something else going on that caused everything to go down hill the past couple of days. So far things look fine. I don't know when we will know more and I don't know when we will get the results of the mri for sure, or when we will be able to consult with the doctors again. I will update here when I do know.
I am not allowed to have my phone on in this area, but did find a computer to give an update. I will not be able to check my phone till later today or this evening. Please refer to the blog for updates. Thank you for the continued prayers. Mark is stable. He was joking around with us and smiling late this morning - he is now resting. We appreciate all the prayers! Happy New Year, and please be safe as you celebrate!
I am not allowed to have my phone on in this area, but did find a computer to give an update. I will not be able to check my phone till later today or this evening. Please refer to the blog for updates. Thank you for the continued prayers. Mark is stable. He was joking around with us and smiling late this morning - he is now resting. We appreciate all the prayers! Happy New Year, and please be safe as you celebrate!
FYI
For those wanting to catch up on our situation and are new to the blog please go to the right of the screen and click on November 2010 - scroll down till you see the post dated November 27 titled "More Health Updates" and that will give a brief summary of what's lead up to this point. Thanks.
Thursday, December 30, 2010
Tranferred
This is the first chance I've had to get to a computer since my last post. I know many of you are anxious for updates - Mark is enroute to a hospital in downtown Houston where he will be in the Neuro-ICU. When I said goodbye he was awake and alert! Praise the Lord for that! We were so very very blessed at the hospital here - one of the administrators is a friend and she was a tremendous help to us! She was able to make the connections we needed to get him to the hospital and with the doctors that he needs. The girls were even allowed a short visit with daddy before he had to go as they took him by ambulance there. Everyone was very kind and helpful and very concerned for Mark - they don't generally see people as young as he is in the ICU unless they were in a car accident or something.
Where will they go from here? We're not sure. Why did he take such a sudden turn for the worse? We don't know. The doctors here theorize that the cerebellum tonsils have slipped further and possibly gotten pinched. His body seems to be putting itself into a coma-like state off and on and they said it's our bodies 'defense mechanism' when it's in a lot of pain or having a lot of issues. Hopefully we'll get to the bottom of this. We don't know what the plans are but I'm sure it will include another mri and hopefully surgery very soon (we never thought we'd be so anxious to have someone have surgery!).
Thank you for all your prayers and concern, I just don't have the time or energy to update everyone individually, but please don't think that I don't appreciate your calls, texts, prayers and concern. I will do my best to keep updating here. We know the Lord is wrapping us in His love - each event has been orchestrated to His glory and praise Him for that! Love to you all!
Where will they go from here? We're not sure. Why did he take such a sudden turn for the worse? We don't know. The doctors here theorize that the cerebellum tonsils have slipped further and possibly gotten pinched. His body seems to be putting itself into a coma-like state off and on and they said it's our bodies 'defense mechanism' when it's in a lot of pain or having a lot of issues. Hopefully we'll get to the bottom of this. We don't know what the plans are but I'm sure it will include another mri and hopefully surgery very soon (we never thought we'd be so anxious to have someone have surgery!).
Thank you for all your prayers and concern, I just don't have the time or energy to update everyone individually, but please don't think that I don't appreciate your calls, texts, prayers and concern. I will do my best to keep updating here. We know the Lord is wrapping us in His love - each event has been orchestrated to His glory and praise Him for that! Love to you all!
A Turn
I'm sorry there has been sporatic and very incomplete updates - I am home to shower and am taking a moment to update here -
Yesterday Mark seemed to be having a better day - by better I mean that he maxed out on his pain killers and was able to get up and have a somewhat regular day. At bedtime for the girls he bent over for a moment and had a severe reaction. He grabbed his head and laid down - he was in worse pain then I've ever seen him. We called the doctor and he said to take him to the nearest ER. They did a CT scan right away and determined there was no bleeding in the brain - Praise the Lord! There they gave him some IV pain meds that really seemed to help. They wanted to keep him overnight for observation.
Throughout the night his blood pressure kept dropping lower and lower and by this morning he was completely unresponsive - his oxygen levels were low as well and they moved him to the ICU. There, they were able to stabalize him and late morning he began to be responsive again. By noon he was carrying on a conversation with me but seemed confused as to why he was in the hospital and what had happened.
The doctors know that he is already getting highly specialized care. They tried getting ahold of his doctors in Houston but the neurologist is sick and the neurosurgeon is on vacation. So they are transferring him to The Woodlands in the meantime where they will decide how to proceed. That is all I know right now - we are waiting for the transfer at this time. I will do my best to update the blog as often as possible.
Thank you for the prayers! God has graciously answered and Mark is stable now. Please continue to pray as we figure out where we go from here. New Year's blessings to you all!
Yesterday Mark seemed to be having a better day - by better I mean that he maxed out on his pain killers and was able to get up and have a somewhat regular day. At bedtime for the girls he bent over for a moment and had a severe reaction. He grabbed his head and laid down - he was in worse pain then I've ever seen him. We called the doctor and he said to take him to the nearest ER. They did a CT scan right away and determined there was no bleeding in the brain - Praise the Lord! There they gave him some IV pain meds that really seemed to help. They wanted to keep him overnight for observation.
Throughout the night his blood pressure kept dropping lower and lower and by this morning he was completely unresponsive - his oxygen levels were low as well and they moved him to the ICU. There, they were able to stabalize him and late morning he began to be responsive again. By noon he was carrying on a conversation with me but seemed confused as to why he was in the hospital and what had happened.
The doctors know that he is already getting highly specialized care. They tried getting ahold of his doctors in Houston but the neurologist is sick and the neurosurgeon is on vacation. So they are transferring him to The Woodlands in the meantime where they will decide how to proceed. That is all I know right now - we are waiting for the transfer at this time. I will do my best to update the blog as often as possible.
Thank you for the prayers! God has graciously answered and Mark is stable now. Please continue to pray as we figure out where we go from here. New Year's blessings to you all!
Wednesday, December 29, 2010
More Christmas
Baby's First Christmas hat!
Dan and Amy sent a gift card for Build-a-Bear and the girls had so much fun getting accessories to their bears they built with daddy a few weeks ago.
An awesome play nativity set
Thank you for all the wonderful gifts and packages! Monday, December 27, 2010
Doll House!
Nana and Papa got the girls an amazing doll house that requires some assembly. They are so excited to put it together with daddy. (this project has been put on hold temporarily)Saturday, December 25, 2010
Merry Christmas
The girls had asked for some interesting things from Santa this year - Gabie wanted a daddy horse to go with her unicorn family. Eliya wanted a robot kitty and Rachel wanted a Dora mermaid that swims. Luckily all were found and the girls were thrilled with what was left by Santa. He even ate the milk and cookies! (unlike last year when gabie ate them :)Friday, December 24, 2010
Presents!
We had some wonderful packages full of presents from our congregation in Wisconsin and friends in South Dakota. We enjoyed lots of gifts and enjoyed having family time together.Family Pictures Time
After we got ready for church on Christmas Eve I got some pictures with the girls and some other random shots. We were all dressed up so nice it was a great opportunity to get some nice pictures in. Now that I'm looking at them I wish I would've gotten more, but they still turned out good :)Wednesday, December 22, 2010
Gingerbread House....or Village!
Look at the amazing creation we made!
Okay, just kidding, we did not make this. In fact I don't think I could even make one small piece of this. There was a raffle for this gingerbread village that someone made. I didn't even know about it. But someone knew someone who knew someone who knew about our situation and the people that won it wanted us to have it. It is amazing! And almost all completely edible - a few pieces have already disappeared! We are so blessed by this amazing decoration given to us :)
Okay, just kidding, we did not make this. In fact I don't think I could even make one small piece of this. There was a raffle for this gingerbread village that someone made. I didn't even know about it. But someone knew someone who knew someone who knew about our situation and the people that won it wanted us to have it. It is amazing! And almost all completely edible - a few pieces have already disappeared! We are so blessed by this amazing decoration given to us :)
Monday, December 20, 2010
Pickle Ornament!
Stephanie and Travis have a pickle ornament tradition, which although I know of the idea, had never done it ourselves, so they introduced us to the game and then part of the prize was our own pickle ornament to carry on the tradition! Thanks guys! (Rachel was the lucky finder of the pickle)Presents from the North
After watching Micaiah with this present, I'm so excited to see her at Christmas, she dove-bombed for the present and ripped it right open! What fun! When I tried to pull it back to make her wait she held on tight! So I grabbed the camera to capture the moment.
My wonderful Bible study group from the girl's school in Stevens Point put together a Christmas package for us. It included lots of wonderful gift cards - THANKS GIRLS!!!! And some awesome presents for the girls that they love - THANKS CHRISTINA! What a fun way to end the day.
My wonderful Bible study group from the girl's school in Stevens Point put together a Christmas package for us. It included lots of wonderful gift cards - THANKS GIRLS!!!! And some awesome presents for the girls that they love - THANKS CHRISTINA! What a fun way to end the day.Sunday, December 19, 2010
Christmas Program
4 Beautiful Girls in their Christmas dresses
Our trio of Christmas angels 
Faith Lutheran Church let our girls be a part of their Children's Christmas Program this Sunday. They did a wonderful job singing the songs. Of course Rachel was.....well, Rachel. Which means she was the 'one' that had to lift her dress/angel costume up by her head / stop on the procession when on the step up on stage so no one else could get up there (and just sat there), wave at people from up on stage and say hi, she would sing a couple words from the songs with a smile and then her whole face would drop and she'd fall on her knees in a pout. Oh well, I was glad she participated and we really enjoyed the program.
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