Maybe a little too fast for Steve!
Dr. Damrose called back a little while ago. He says he will absolutely perform the tracheotomy. His scheduler will call us on Monday to set it up and Dr. Damrose will get in touch with Steve's primary doctor and discuss taking him off of the coumadin {he has to be off the coumadin and on a different blood thinner for about a week before surgery so he does not bleed too much and then he will go back on it after}.
To say Steve is nervous is an understatement. But he is still ready to do this. He just wishes it was over and done with, the waiting is hard.
A friend at church said a while back that he felt God saying "help is on the way" when he was praying for us. Maybe this is it?
Friday, October 31, 2008
Bruno today
Just had a nice visit with Bruno. Poor little guy stood right up when he saw me and walked right over. He is still having bloody diarrhea but there was no vomiting last night or today. I think he has lost a little weight but not too much. They are going to try and feed him a little today and see how he handles it. He is more alert and clearly wants out of there. He is in a tiny little isolation room all by himself and I am sure that now that he is more alert is very scared and lonely. I just held him and loved on him for nearly two hours. If there was a chair in there I'm sure I would have stayed longer!
It was hard leaving him. I kept trying to get him to go to sleep but he was having none of it and sat there and stared at me as I left. I hope he comes home soon!
The boy is too funny for his own good.
If you haven't read the previous post yet please do so now or this won't make any sense.
Done reading? Ok...
Brandon said, "it's too bad dad doesn't have his neck hole yet because we could dress him up as a Pez dispenser for halloween"!
Steve didn't think it was that funny. He has no sense of humor.
Done reading? Ok...
Brandon said, "it's too bad dad doesn't have his neck hole yet because we could dress him up as a Pez dispenser for halloween"!
Steve didn't think it was that funny. He has no sense of humor.
Decisions
Yesterday was a very long day.
First of all...the vet called this morning and said Bruno is better! He is still very sick but he seems to have turned a corner and is more alert. They are continuing IV fluids and antibiotic medicines. I'm going down there in a little while to spend some time with him. They tell me it's just like human babies, when their loved ones are with them and can hold them they get better faster. I am very thankful to God right now. I know it may seem trivial to some but the love we have for that little guy is very real and important to us.
So we met for a very long time with the pulmonary specialist yesterday and we have made a decision. Steve is going to go ahead and get the tracheotomy. I know this sounds drastic but it really isn't. All signs are pointing to Steve having an upper airway obstruction. Basically the muscles controlling his vocal cords are swelling and inflaming and closing when they are being irritated by the acid from his stomach. If he gets a tracheotomy it is placed below the vocal cords and even if they are completely shut he can still breathe without difficulty.
He will still be able to speak and breathe through his mouth and nose. All he has to do is close off the opening to the trach. This will also take care of his sleep apnea. The doctor was very clear yesterday that Steve does have asthma. Most likely caused by the acid reflux as well. The trach won't change that but he can administer his medicines through it.
The goal is to get him breathing well and allow him to heal and get well. We are still going to pursue the GI doctors at Stanford and possibly the surgery to correct the stomach problem. They do not even have a consult appointment available until the first week in December and most likely will not even consider surgery for months because of the clots in his lungs and the blood thinning drugs he needs. Steve needs help now. He's been hospitalized 13 times since the end of January, has not been to work since the first week in September and he needs to get back to his life.
Please pray that the doctors agree and if this is something that can be done it gets done very soon. Steve is very nervous but relieved. It's a little scary but a lot hopeful and he is very anxious to just get this done. So am I. I bet you all are too!
First of all...the vet called this morning and said Bruno is better! He is still very sick but he seems to have turned a corner and is more alert. They are continuing IV fluids and antibiotic medicines. I'm going down there in a little while to spend some time with him. They tell me it's just like human babies, when their loved ones are with them and can hold them they get better faster. I am very thankful to God right now. I know it may seem trivial to some but the love we have for that little guy is very real and important to us.
So we met for a very long time with the pulmonary specialist yesterday and we have made a decision. Steve is going to go ahead and get the tracheotomy. I know this sounds drastic but it really isn't. All signs are pointing to Steve having an upper airway obstruction. Basically the muscles controlling his vocal cords are swelling and inflaming and closing when they are being irritated by the acid from his stomach. If he gets a tracheotomy it is placed below the vocal cords and even if they are completely shut he can still breathe without difficulty.
He will still be able to speak and breathe through his mouth and nose. All he has to do is close off the opening to the trach. This will also take care of his sleep apnea. The doctor was very clear yesterday that Steve does have asthma. Most likely caused by the acid reflux as well. The trach won't change that but he can administer his medicines through it.
The goal is to get him breathing well and allow him to heal and get well. We are still going to pursue the GI doctors at Stanford and possibly the surgery to correct the stomach problem. They do not even have a consult appointment available until the first week in December and most likely will not even consider surgery for months because of the clots in his lungs and the blood thinning drugs he needs. Steve needs help now. He's been hospitalized 13 times since the end of January, has not been to work since the first week in September and he needs to get back to his life.
Please pray that the doctors agree and if this is something that can be done it gets done very soon. Steve is very nervous but relieved. It's a little scary but a lot hopeful and he is very anxious to just get this done. So am I. I bet you all are too!
Thursday, October 30, 2008
I just want a break.
I really have been trying to be thankful. I know I have many things to be thankful for, I really do. But today is just really dark.
The phone has started to ring and none of it has been good news.
First of all the vet called and the puppy is worse. We are awaiting blood tests and then we will have decisions to make. Yesterday they told us he could come home. Now he may never come home.
Steve's work called. Apparently Steve thought he'd be going back today and they wanted to know why he isn't there. What are we supposed to tell them? We have no idea when he will be better. If he will be better. He is doing awful this morning and I fear he is heading for another admission. Even if he doesn't he certainly isn't moving far from the bed and his machines.
I had Laryssa's parent teacher conference this morning. She is doing excellent in everything except homework. Home. Chuckie is doing even worse. I meet with those teachers tomorrow.
It just feels like it's all falling apart and I can't do anything about it. I keep wondering what I'm doing wrong.
The phone has started to ring and none of it has been good news.
First of all the vet called and the puppy is worse. We are awaiting blood tests and then we will have decisions to make. Yesterday they told us he could come home. Now he may never come home.
Steve's work called. Apparently Steve thought he'd be going back today and they wanted to know why he isn't there. What are we supposed to tell them? We have no idea when he will be better. If he will be better. He is doing awful this morning and I fear he is heading for another admission. Even if he doesn't he certainly isn't moving far from the bed and his machines.
I had Laryssa's parent teacher conference this morning. She is doing excellent in everything except homework. Home. Chuckie is doing even worse. I meet with those teachers tomorrow.
It just feels like it's all falling apart and I can't do anything about it. I keep wondering what I'm doing wrong.
Wednesday, October 29, 2008
Narrowly escaped that one!
Steve needs more prayer. Again.
We just got home from a very long doctor appointment. Her first reaction when she saw him was to say "I'm calling an ambulance". But we had a good talk and sat with Steve for a very long time and helped him get the breathing under control. His lungs are clear, it's his throat that is closing up. He had a bad night with the reflux and then woke up suddenly this morning and the wheezing started. Taking deep breaths through his nose and a couple of breathing treatments and some anxiety medicine and a shot of steroids and he is doing a little better. He is home in bed now, on the Bi-Pap and oxygen. He is very nauseous and has no appetite. And I'm sure a little depressed.
He would really like to go to the mens group for our church at Starbucks tonight. It has been good for him to see how much our church body cares about him and it would do him so much good to get out. Please pray that he feels better by tonight and can make it. This cycle has to stop!
We just got home from a very long doctor appointment. Her first reaction when she saw him was to say "I'm calling an ambulance". But we had a good talk and sat with Steve for a very long time and helped him get the breathing under control. His lungs are clear, it's his throat that is closing up. He had a bad night with the reflux and then woke up suddenly this morning and the wheezing started. Taking deep breaths through his nose and a couple of breathing treatments and some anxiety medicine and a shot of steroids and he is doing a little better. He is home in bed now, on the Bi-Pap and oxygen. He is very nauseous and has no appetite. And I'm sure a little depressed.
He would really like to go to the mens group for our church at Starbucks tonight. It has been good for him to see how much our church body cares about him and it would do him so much good to get out. Please pray that he feels better by tonight and can make it. This cycle has to stop!
Tuesday, October 28, 2008
The quick version of an update
Sorry to make this so short but we are exhausted and the bed is calling my name.
Made it to Stanford today. Doctor was wonderful. They stuck a camera down his nose to visualize his vocal cords. I didn't have to be a doctor to see something was very wrong. One side of the muscles that control his vocal cords collapses all the way over to the other side. They are also very swollen and inflamed. The most likely cause is injury from the knee surgery in January and then to add insult the acid reflux is assaulting them.
We now have three choices. Botox in the cords, this would leave him without a voice. Tracheotomy, we don't even want to consider that yet. Nissen Fundiplication, this seems the most reasonable approach. Problem is with the recent pulmonary embolisms he cannot go off the blood thinners for a while and you can't do surgery while on them.
The doctor is referring him to the GI team at Stanford. It looks like we'll be hanging out there a lot over the next months. In the meantime we need to try and be aggressive with the reflux with diet and sleep positions {anyone got an extra recliner laying around?}
Then there is still the question about why all the reflux and everything else is happening. They are still looking at the carcinoid. We have an appointment with the surgeon on Tuesday. Hopefully more of our questions will be answered.
So we don't have absolute answers but it's getting closer. Steve slept the entire way there and back. And then went to bed as soon as we got home. I'm trying not to worry but it's hard to watch.
And Bruno continues to do well. The vet called today and said he has stopped vomiting and is alert and active. We are hoping he can come home tomorrow.
Thank you for all the prayers! Now I'm off to bed.
Made it to Stanford today. Doctor was wonderful. They stuck a camera down his nose to visualize his vocal cords. I didn't have to be a doctor to see something was very wrong. One side of the muscles that control his vocal cords collapses all the way over to the other side. They are also very swollen and inflamed. The most likely cause is injury from the knee surgery in January and then to add insult the acid reflux is assaulting them.
We now have three choices. Botox in the cords, this would leave him without a voice. Tracheotomy, we don't even want to consider that yet. Nissen Fundiplication, this seems the most reasonable approach. Problem is with the recent pulmonary embolisms he cannot go off the blood thinners for a while and you can't do surgery while on them.
The doctor is referring him to the GI team at Stanford. It looks like we'll be hanging out there a lot over the next months. In the meantime we need to try and be aggressive with the reflux with diet and sleep positions {anyone got an extra recliner laying around?}
Then there is still the question about why all the reflux and everything else is happening. They are still looking at the carcinoid. We have an appointment with the surgeon on Tuesday. Hopefully more of our questions will be answered.
So we don't have absolute answers but it's getting closer. Steve slept the entire way there and back. And then went to bed as soon as we got home. I'm trying not to worry but it's hard to watch.
And Bruno continues to do well. The vet called today and said he has stopped vomiting and is alert and active. We are hoping he can come home tomorrow.
Thank you for all the prayers! Now I'm off to bed.
Monday, October 27, 2008
If it's not one, it's another
Well Steve has been out of the hospital a grand total of 10 days...WOO HOO!! But now it's our puppy's turn. Jason was "gifted" with an adorable little purebred pomeranian puppy a couple of weeks ago by one of the regular customers at the pizza place he works at. You know the drill: mom, I'll take care of him, feed him, water him, walk him, bath him, train him, love him squeeze him and call him George. Well actually Bruno.
So could you say no to this little face?
Yesterday I noticed he was not his usual little toilet paper, underwear, shoe eating self. He was lethargic and then he threw up. My immediate fear was parvo so I went into high gear and started pumping the fluids in. Being a Sunday there aren't many choices for vet care and we really needed to go where the insurance dictates so Jason, Brandon and I took turns and stayed up all night keeping him hydrated. It was a good thing because the vet was very impressed by his good condition this morning and actually surprised that he tested positive for parvo. The plan is hopefully 2 days in the hospital on IV's and antibiotics and anti nausea medicines. If all goes well he should be ok. If all does not go well we will have decisions to make that we don't want to.
I know it's silly but if you don't mind please say a prayer for the little guy. I know some of my friends wondered if I needed another hole in my head more than a puppy but he really has been a bright spot in our lives lately with all that's been going on. It has really helped take the kids minds off things and on those really tough days of Steve being so sick you can't imagine how nice it is to come home to such a cuddly little ball of nothing but love!
We head for Stanford late, late tonight. Or actually early in the morning. Steve continues to do well. His pain seems well controlled and he has been sleeping a lot. Pray they have some answers for us tomorrow. He really needs to get back to his life and would like to go back to work soon. Not only for our financial well being {which we are doing ok for now...God is coming through in awesome ways!} but his self worth. He enjoys his job and is feeling out of sorts being away from it for so long. He really is a wonderful provider and a hard working man. I like that about him!
I'll update as soon as I can. As always...thanks for all the prayer and support!
So could you say no to this little face?
Yesterday I noticed he was not his usual little toilet paper, underwear, shoe eating self. He was lethargic and then he threw up. My immediate fear was parvo so I went into high gear and started pumping the fluids in. Being a Sunday there aren't many choices for vet care and we really needed to go where the insurance dictates so Jason, Brandon and I took turns and stayed up all night keeping him hydrated. It was a good thing because the vet was very impressed by his good condition this morning and actually surprised that he tested positive for parvo. The plan is hopefully 2 days in the hospital on IV's and antibiotics and anti nausea medicines. If all goes well he should be ok. If all does not go well we will have decisions to make that we don't want to.
I know it's silly but if you don't mind please say a prayer for the little guy. I know some of my friends wondered if I needed another hole in my head more than a puppy but he really has been a bright spot in our lives lately with all that's been going on. It has really helped take the kids minds off things and on those really tough days of Steve being so sick you can't imagine how nice it is to come home to such a cuddly little ball of nothing but love!
We head for Stanford late, late tonight. Or actually early in the morning. Steve continues to do well. His pain seems well controlled and he has been sleeping a lot. Pray they have some answers for us tomorrow. He really needs to get back to his life and would like to go back to work soon. Not only for our financial well being {which we are doing ok for now...God is coming through in awesome ways!} but his self worth. He enjoys his job and is feeling out of sorts being away from it for so long. He really is a wonderful provider and a hard working man. I like that about him!
I'll update as soon as I can. As always...thanks for all the prayer and support!
Friday, October 24, 2008
Not today either
I should learn by now not to make promises I can't keep. The update just needs to wait. I found myself feeling very overwhelmed today by all the medical information overload. I just need a break.
The plans are still moving forward for the trip to Stanford on Tuesday. I'm trying to stay hopeful. Yesterday Chuckie was home after throwing up the night before. Laryssa stayed home too...just because. We thought it was the pizza he ate but then Steve threw up last night. Everyone else seems ok. I am a little concerned because after a few days of feeling very well and then today I could not get him to wake up at all. He didn't move from bed until after 5 tonight. He had an ok couple of hours and then back to bed.
I think I may have miscommunicated somewhere because a friend asked the other day if everything is now ok since the blood clots were discovered. The answer is no. Let me preface all this with "unless God heals him". Steve is still very sick. The blood cots only add to what has been going on. Yes they may have been there from the beginning, or not but something caused them to be there and that is what we do not know. Something is making him very sick and that is why we are going back and forth to the hospital and multiple doctor visits. He is home but nothing has changed since his last discharge other than he is now on blood thinners to, hopefully prevent more clots.
I apologize for not making a more thorough update. I just need to focus on "regular" things right now and get everyone here ready for our trip on Tuesday. Please pray that we make it and don't have the same trouble getting there like last month!
In the meantime watch something that always cheers me up and makes me smile!
The plans are still moving forward for the trip to Stanford on Tuesday. I'm trying to stay hopeful. Yesterday Chuckie was home after throwing up the night before. Laryssa stayed home too...just because. We thought it was the pizza he ate but then Steve threw up last night. Everyone else seems ok. I am a little concerned because after a few days of feeling very well and then today I could not get him to wake up at all. He didn't move from bed until after 5 tonight. He had an ok couple of hours and then back to bed.
I think I may have miscommunicated somewhere because a friend asked the other day if everything is now ok since the blood clots were discovered. The answer is no. Let me preface all this with "unless God heals him". Steve is still very sick. The blood cots only add to what has been going on. Yes they may have been there from the beginning, or not but something caused them to be there and that is what we do not know. Something is making him very sick and that is why we are going back and forth to the hospital and multiple doctor visits. He is home but nothing has changed since his last discharge other than he is now on blood thinners to, hopefully prevent more clots.
I apologize for not making a more thorough update. I just need to focus on "regular" things right now and get everyone here ready for our trip on Tuesday. Please pray that we make it and don't have the same trouble getting there like last month!
In the meantime watch something that always cheers me up and makes me smile!
Wednesday, October 22, 2008
Not tonight
Please forgive me for yet again putting off the update. It was a very long day that included Steve's doctor drawing blood out of his foot {ok when is the last time you saw a doctor draw blood...the nurses do that...and out of the foot!} and sending us to the hospital for an unexpected ultrasound for suspected clots in his leg {which would have required another hospitalization and procedure we really did not want to deal with right now}. Praise God he was cleared in regards to the clot.
But all that to say we are exhausted. Steve asked me today how I manage to remember all the places we are supposed to go and people we are supposed to see. I just shrugged my shoulders and said "it's what I do". Wasn't really sure how to answer that! I did appreciate his appreciativeness. {Oh boy I sure do hope there aren't any English teachers out there grading me on grammar and sentence structure! Not to mention my excessive over use of punctuation!!}
I promise to try and update tomorrow. In the meantime Steve continues to do well, breathing is good {although his O2 readings are at 91...please pray for that} and his pain is tolerable with the morphine and rest.
But all that to say we are exhausted. Steve asked me today how I manage to remember all the places we are supposed to go and people we are supposed to see. I just shrugged my shoulders and said "it's what I do". Wasn't really sure how to answer that! I did appreciate his appreciativeness. {Oh boy I sure do hope there aren't any English teachers out there grading me on grammar and sentence structure! Not to mention my excessive over use of punctuation!!}
I promise to try and update tomorrow. In the meantime Steve continues to do well, breathing is good {although his O2 readings are at 91...please pray for that} and his pain is tolerable with the morphine and rest.
Shout Outs
I haven't forgotten. I did say I would post an update but I decided to wait until the end of today, we have two doctor appointments.
But I do want to give a couple of shout outs and direct you to a couple of blogs that have encouraged me lately.
First of all let me share this one: Desiring God
We have been watching John Piper videos at church for quite a while now and I confess here that I have found them difficult to follow at times. But the last couple times they were show I got a lot out of them. Probably because our life has been so changed these last 10 months that I seem to be "desiring God" so much more intensely.
I started reading the blog when my pastor added it to the church blog list. Some of it is a bit "wordy" and you have to dust off your bible to follow {hey..that's a good thing!} but a lot of it is just dead on. Particularly this entry. I was joking with my dear friend Paul the other day and sharing with him the words and scriptures God has given me recently. Sometimes they come in the night and I'll jump up and go to Bible Gateway {LOVE that site!} and search where that passage is. While I'm waiting for the search to load sometimes I sit here thinking "please don't be in Job, please don't be in job"! But maybe Job is a good book for me to be reading right now. If you've never read it I'll spoil the ending for you...it's a happy one!
But this particular message in that entry stood out to me:
"2. Let your tears flow freely when your calamity comes.
I admit here that I have struggled greatly with fear throughout this ordeal. I have never doubted that God is with me but I have also not been able to forget that people die every day and God has not promised us that they won't. But I have to remind myself daily, sometimes hourly, that He promises He will always be there beside me. Sometimes I worry that my sobs of pain show unbelief, I pray that it does not because believe me...I believe!
And now to the next one.
Bring the Rain...
Ooops!! I am running late for our appointments and don't have time to finish. I promise I'll get back........
But I do want to give a couple of shout outs and direct you to a couple of blogs that have encouraged me lately.
First of all let me share this one: Desiring God
We have been watching John Piper videos at church for quite a while now and I confess here that I have found them difficult to follow at times. But the last couple times they were show I got a lot out of them. Probably because our life has been so changed these last 10 months that I seem to be "desiring God" so much more intensely.
I started reading the blog when my pastor added it to the church blog list. Some of it is a bit "wordy" and you have to dust off your bible to follow {hey..that's a good thing!} but a lot of it is just dead on. Particularly this entry. I was joking with my dear friend Paul the other day and sharing with him the words and scriptures God has given me recently. Sometimes they come in the night and I'll jump up and go to Bible Gateway {LOVE that site!} and search where that passage is. While I'm waiting for the search to load sometimes I sit here thinking "please don't be in Job, please don't be in job"! But maybe Job is a good book for me to be reading right now. If you've never read it I'll spoil the ending for you...it's a happy one!
But this particular message in that entry stood out to me:
"2. Let your tears flow freely when your calamity comes.
"Job arose, rent his robe, and shaved his head, and fell upon his face" (1:20).
The sobs of grief and pain are not the sign of unbelief. Job knows nothing of a flippant, insensitive, superficial "Praise God anyhow" response to suffering. The magnificence of his worship is because it was in grief, not because it replaced grief.
And let the rest of us weep with those who weep."
I admit here that I have struggled greatly with fear throughout this ordeal. I have never doubted that God is with me but I have also not been able to forget that people die every day and God has not promised us that they won't. But I have to remind myself daily, sometimes hourly, that He promises He will always be there beside me. Sometimes I worry that my sobs of pain show unbelief, I pray that it does not because believe me...I believe!
And now to the next one.
Bring the Rain...
Ooops!! I am running late for our appointments and don't have time to finish. I promise I'll get back........
Monday, October 20, 2008
Every little kids dream!
Steve has now been on the blood thinner Coumadin {aka Warfarin} for about 10 days. It's a pretty common and very inexpensive drug. It actually was originally manufactured as rat poison! But taken in the drug form it's safe for it's intended purpose...thinning your blood so it's difficult for blood clots to float around and cause big problems. But there was one precaution about this medicine that surprised me: "Vitamin K decreases the effects of warfarin. Large amounts of vitamin K are found in foods such as liver, broccoli, brussels sprouts, spinach, Swiss chard, coriander, collards, cabbage, and other green leafy vegetables." Could you even imagine being a kid and you are told you can't eat green leafy vegatables? Throw in "eat plenty of nerds and pixie stix until you are comatose" and you are closer to heaven than actually being there!!
This is not exactly thrilling news for my husband who actually does enjoy a good salad and he LOVES brussels sprouts and can eat a huge bowl in one sitting. {LOL!! Laryssa was watching over my shoulder as I typed and exclaimed "Ewwww! Those are so gross!!"} But according to his doctor today this is only temporary. He needs to have regular blood tests to see how fast his blood clots and what dosage of the medicine he needs. Once this is all balanced out he can enjoy his veggies, in moderation. I just find that so funny!
I'll update more tomorrow about our doctor visit today and what our plans are. Right now we need to get kids heading to bed so we can turn in early as well. Please continue to pray for Steve's pain. He is now on two different types of morphine, we are hoping this does the job. His breathing has actually been ok, praise God!
This is not exactly thrilling news for my husband who actually does enjoy a good salad and he LOVES brussels sprouts and can eat a huge bowl in one sitting. {LOL!! Laryssa was watching over my shoulder as I typed and exclaimed "Ewwww! Those are so gross!!"} But according to his doctor today this is only temporary. He needs to have regular blood tests to see how fast his blood clots and what dosage of the medicine he needs. Once this is all balanced out he can enjoy his veggies, in moderation. I just find that so funny!
I'll update more tomorrow about our doctor visit today and what our plans are. Right now we need to get kids heading to bed so we can turn in early as well. Please continue to pray for Steve's pain. He is now on two different types of morphine, we are hoping this does the job. His breathing has actually been ok, praise God!
Friday, October 17, 2008
Wonders never cease
Steve had another rough night and then was told this morning he could not eat or drink. He didn't like that. The nurse told him it was cardiology orders. Well that really confused and worried us because we were told cardiology signed off, that he was fine in that respect. I got a hold of the nurse and she looked at his chart and realized that it was GI, not cardiology. Apparently the test they scheduled had the same initials but in reverse. She had a dislexic moment!
They took him for endoscopy and took some biopsies. We'll know more in a few days.
So I went home to take care of some errands and not too long later I got a call from Steve telling me to come pick him up! The doctor called and said since he did well during his procedure he could go ahead and go home. We had a long talk about remaining on his pain meds. No more withdrawals, even if they do make him feel drunk all the time. He can slowly wean as his pain allows. We have amassed such a variety of pain meds {and the kind you have to show ID to get!} that I think we should be able to keep that pain under control. And I hid the keys to the car!
Now he needs to really focus on being careful not to cut himself. Steve is a real manly guy in that he likes to work on the car/truck and "Tim Taylor" things around the house with a little "MacGyver" thrown in. And he always has a cut here, gouge there. He can't do that anymore. The phrase "bleed like a stuck pig" fits him well now. I have plenty of gauze and tape ready. YIKES!
Please pray that he remains well. While I know we could handle another ER trip and admission...God doesn't give more than can be handled...we really don't want to. It's getting harder and harder and harder to stay hopeful every ER trip or ambulance ride and, quite frankly we are just worn out. The fact is that nothing has really changed. In fact we now have the added complication of the blood clots {whether they have been there all along or not they are NOW causing him problems} and he still has the breathing issues. Yes we are finally hooked up with the right people who will hopefully find the right answers but right now I believe the only thing that will keep him home is God. We are hoping on that!
They took him for endoscopy and took some biopsies. We'll know more in a few days.
So I went home to take care of some errands and not too long later I got a call from Steve telling me to come pick him up! The doctor called and said since he did well during his procedure he could go ahead and go home. We had a long talk about remaining on his pain meds. No more withdrawals, even if they do make him feel drunk all the time. He can slowly wean as his pain allows. We have amassed such a variety of pain meds {and the kind you have to show ID to get!} that I think we should be able to keep that pain under control. And I hid the keys to the car!
Now he needs to really focus on being careful not to cut himself. Steve is a real manly guy in that he likes to work on the car/truck and "Tim Taylor" things around the house with a little "MacGyver" thrown in. And he always has a cut here, gouge there. He can't do that anymore. The phrase "bleed like a stuck pig" fits him well now. I have plenty of gauze and tape ready. YIKES!
Please pray that he remains well. While I know we could handle another ER trip and admission...God doesn't give more than can be handled...we really don't want to. It's getting harder and harder and harder to stay hopeful every ER trip or ambulance ride and, quite frankly we are just worn out. The fact is that nothing has really changed. In fact we now have the added complication of the blood clots {whether they have been there all along or not they are NOW causing him problems} and he still has the breathing issues. Yes we are finally hooked up with the right people who will hopefully find the right answers but right now I believe the only thing that will keep him home is God. We are hoping on that!
Thursday, October 16, 2008
Answers, maybe.
Steve is still in the hospital, tomorrow will be day ten.
We have tentative answers. It is a high probability he has had the embolisms {he has numerous clots in both lungs} from the beginning. This whole ordeal began January 29, 2008 when Steve went to the ER for chest pain and difficulty breathing. This was eight days after her had had minor knee surgery. The first thing they suspected was a pulmonary embolism but instead diagnosed pneumonia and gave him antibiotics and sent him home. He landed in ICU two days later.
Since then he has been hospitalized thirteen times. Every time we have encountered a new doctor or explained the progression of his illness to anyone assigned to his case I have stated that he was hospitalized within a week of knee surgery. None of them ever felt that had anything to do with it. Until this week.
The director of the UCSF Fresno Pulmonary and Critical Care department has been in every day since Sunday to see us. Her explanation has been that it has been very difficult to see his lungs clearly on all the CT scans done at the other hospital. Plus they stopped looking for a PE after that first one. This hospital did a different type of scan and that's when they saw them. Regardless of when or how the fact is they are there and they are making him very sick.
The treatment is blood thinners, which he is on and his blood tests are coming back looking like they want. He is in a lot of pain, very short of breath and his heart rate soars anytime he even tries to move out of the bed. They wake him numerous times at night because his vital signs get concerning and they way they wake him is to knuckle him in the chest...the chest that is causing him a lot of pain. We are told this is going to get better with time after the blood thinners have had time to do what they need to do.
As far as his breathing/lung problems they think they have an answer. Right now they are looking at two things. During his biopsy last month something called a carcinoid tumor was found and removed. It was very small and they were able to remove it all. The thing about carcinoids is they are typically in the GI tract and one of the problems with them is they can either be cancerous or they cause a thing called carcinoid syndrome . Steve does have many of the symptoms but for some reason I am not feeling like this is what he has. Tests have been done and we should know soon. The more likely answer is something called Vocal Cord Dysfunction.
This is a complex condition and a little hard to diagnose but everyone seems to be in agreement this may be Steve's problem. There are many causes for this but in Steve's case it seems clear to all that it is because of GERD. According to a radiological study done last month he is refluxing all the way up to his throat. This can cause the vocal cords to close down. This is life threatening. This is probably what has been sending him to the ER over and over and over and over. This would also explain the "Kermit" voice!
In people who have VCD without an obvious cause the treatment is speech therapy. In Steve's case he is probably going to have to have surgery. Right now the hospital is trying to get a GI doctor to come in and consult on Steve. The on the 28th we will go to Stanford to consult with an ENT doctor.
They are also saying asthma, again. According to the breathing tests he is showing strongly that he has asthma. This also could be related to to GERD. They will do more testing on this tomorrow, hopefully. He is getting treatment for asthma symptoms already but the frustrating thing is those treatments can actually worsen GERD. Could explain why he keeps getting worse. Unfortunately you are darned if you do, darned if you don't. At this point no one is really willing to stop those treatments to see if he improves because of the risk his breathing could get worse. I agree. We'll figure all that out after the GI and ENT doctors see him.
I really feel he is in good hands where he is. The doctors are wonderful and he has been blessed with some really good nurses and aides. He is bored, tired and frustrated but he realizes he needs to stay so we can get to the bottom of this once and for all. He says he can't even go to the bathroom without them running in and banging on the door to see if he's alright! So good to know they are watching at all times! {even though he would appreciate a little privacy!} He has been sleeping a lot and his feet are very swollen. He just wants to feel well again. This has been a very long road. He has been hospitalized almost constantly now for six weeks. He would appreciate visitors if anyone has time, or phone calls. If he's asleep he doesn't hear it so don't worry about disturbing his sleep.
He is currently at Community Regional Medical Center and the number is 459-6000.
We have tentative answers. It is a high probability he has had the embolisms {he has numerous clots in both lungs} from the beginning. This whole ordeal began January 29, 2008 when Steve went to the ER for chest pain and difficulty breathing. This was eight days after her had had minor knee surgery. The first thing they suspected was a pulmonary embolism but instead diagnosed pneumonia and gave him antibiotics and sent him home. He landed in ICU two days later.
Since then he has been hospitalized thirteen times. Every time we have encountered a new doctor or explained the progression of his illness to anyone assigned to his case I have stated that he was hospitalized within a week of knee surgery. None of them ever felt that had anything to do with it. Until this week.
The director of the UCSF Fresno Pulmonary and Critical Care department has been in every day since Sunday to see us. Her explanation has been that it has been very difficult to see his lungs clearly on all the CT scans done at the other hospital. Plus they stopped looking for a PE after that first one. This hospital did a different type of scan and that's when they saw them. Regardless of when or how the fact is they are there and they are making him very sick.
The treatment is blood thinners, which he is on and his blood tests are coming back looking like they want. He is in a lot of pain, very short of breath and his heart rate soars anytime he even tries to move out of the bed. They wake him numerous times at night because his vital signs get concerning and they way they wake him is to knuckle him in the chest...the chest that is causing him a lot of pain. We are told this is going to get better with time after the blood thinners have had time to do what they need to do.
As far as his breathing/lung problems they think they have an answer. Right now they are looking at two things. During his biopsy last month something called a carcinoid tumor was found and removed. It was very small and they were able to remove it all. The thing about carcinoids is they are typically in the GI tract and one of the problems with them is they can either be cancerous or they cause a thing called carcinoid syndrome . Steve does have many of the symptoms but for some reason I am not feeling like this is what he has. Tests have been done and we should know soon. The more likely answer is something called Vocal Cord Dysfunction.
This is a complex condition and a little hard to diagnose but everyone seems to be in agreement this may be Steve's problem. There are many causes for this but in Steve's case it seems clear to all that it is because of GERD. According to a radiological study done last month he is refluxing all the way up to his throat. This can cause the vocal cords to close down. This is life threatening. This is probably what has been sending him to the ER over and over and over and over. This would also explain the "Kermit" voice!
In people who have VCD without an obvious cause the treatment is speech therapy. In Steve's case he is probably going to have to have surgery. Right now the hospital is trying to get a GI doctor to come in and consult on Steve. The on the 28th we will go to Stanford to consult with an ENT doctor.
They are also saying asthma, again. According to the breathing tests he is showing strongly that he has asthma. This also could be related to to GERD. They will do more testing on this tomorrow, hopefully. He is getting treatment for asthma symptoms already but the frustrating thing is those treatments can actually worsen GERD. Could explain why he keeps getting worse. Unfortunately you are darned if you do, darned if you don't. At this point no one is really willing to stop those treatments to see if he improves because of the risk his breathing could get worse. I agree. We'll figure all that out after the GI and ENT doctors see him.
I really feel he is in good hands where he is. The doctors are wonderful and he has been blessed with some really good nurses and aides. He is bored, tired and frustrated but he realizes he needs to stay so we can get to the bottom of this once and for all. He says he can't even go to the bathroom without them running in and banging on the door to see if he's alright! So good to know they are watching at all times! {even though he would appreciate a little privacy!} He has been sleeping a lot and his feet are very swollen. He just wants to feel well again. This has been a very long road. He has been hospitalized almost constantly now for six weeks. He would appreciate visitors if anyone has time, or phone calls. If he's asleep he doesn't hear it so don't worry about disturbing his sleep.
He is currently at Community Regional Medical Center and the number is 459-6000.
Friday, October 10, 2008
New Every Morning
Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for him." Lamentations 3:22-24
I will try and remember that today is a new day. Steve is well and God is sustaining us. There is not a lot of new news but I will be sure to post more when/if there is. Thank you for the prayers.
I will try and remember that today is a new day. Steve is well and God is sustaining us. There is not a lot of new news but I will be sure to post more when/if there is. Thank you for the prayers.
Thursday, October 9, 2008
We now know why...
We know why his heart wasn't looking good. He has a pulmonary embolism.
I'm ready for this to stop.
I'm going to try and sleep a couple of hours and then head back to the hospital. Tomorrow is going to be a very long day.
I'm ready for this to stop.
I'm going to try and sleep a couple of hours and then head back to the hospital. Tomorrow is going to be a very long day.
Wednesday, October 8, 2008
Please Pray
Long story...very short...
Saw doctor this am, she called an ambulance. Steve is back in ICU, this time with significant changes to his EKG. His heart has been fine until now. He has been seen by 4 cardiologists so far. I'm home to feed and put kids in bed and then on my way back down there.
We are scared.
Will update when I can.
Saw doctor this am, she called an ambulance. Steve is back in ICU, this time with significant changes to his EKG. His heart has been fine until now. He has been seen by 4 cardiologists so far. I'm home to feed and put kids in bed and then on my way back down there.
We are scared.
Will update when I can.
Tuesday, October 7, 2008
Accepting Weakness
And He said to me, “My grace is sufficient for you, for My strength is made perfect in weakness.” Therefore most gladly I will rather boast in my infirmities, that the power of Christ may rest upon me. 10 Therefore I take pleasure in infirmities, in reproaches, in needs, in persecutions, in distresses, for Christ’s sake. For when I am weak, then I am strong. 2 Corinthians 12:9-10
Boy that verse is a tough one for me today. It's very hard to watch what is happening to Steve right now. Since he has been home he has barely moved from the bed. Well except for the last seven hours where he has been running to the bathroom every 15 minutes vomiting. He is very weak right now and even though it shouldn't surprise me, given what he has been through it worries me.
But......I have peace.
We are absolutely in a place right now where we have no choice but to put our complete faith in what God is doing. Steve was actually given a release to go back to work yesterday from the doctor at rehab last week {he did classify him "disabled" through the end of December but he can still work as he is able}. It is very clear to Steve that won't be happening. Just going to the doctor yesterday completely wiped him out. He has not eaten in days and all he has strength to do is sleep.
We have no idea if he will get a paycheck this Thursday. It is very difficult to get in touch with the payroll person right now and we just got the disability papers signed yesterday. So we are living in faith...and God is coming through. Little envelopes getting handed to us with "help", grocery bags at the front door, dollars stretching a little further than we are used to. I do know that if we have nothing else we have plenty of peanut butter, jelly and lasagna to last a year!! {that seems to be the staple that everyone provides...cracks me up!!}
But......still, I have peace.
So today I will do my best to just keep Steve comfortable. We are definitely in the "crash after crisis" stage here and everyone is just tired and beat up. But "after crisis" is an ok place to be.
{Update: He'll get a partial paycheck, we can work with that! The disability papers went in the mail today, praying for a quick turn around. This has been a bad day for Steve...the vomiting has not let up much except for a much needed 3 hour nap. I'm waiting for the pharmacy to call with some meds the doctor called in. She thinks he is either withdrawing from the morphine {he stopped it yesterday, does not like how it makes him feel} or just got the flu coincidentally. He does have a fever so probably is a bug.}
Boy that verse is a tough one for me today. It's very hard to watch what is happening to Steve right now. Since he has been home he has barely moved from the bed. Well except for the last seven hours where he has been running to the bathroom every 15 minutes vomiting. He is very weak right now and even though it shouldn't surprise me, given what he has been through it worries me.
But......I have peace.
We are absolutely in a place right now where we have no choice but to put our complete faith in what God is doing. Steve was actually given a release to go back to work yesterday from the doctor at rehab last week {he did classify him "disabled" through the end of December but he can still work as he is able}. It is very clear to Steve that won't be happening. Just going to the doctor yesterday completely wiped him out. He has not eaten in days and all he has strength to do is sleep.
We have no idea if he will get a paycheck this Thursday. It is very difficult to get in touch with the payroll person right now and we just got the disability papers signed yesterday. So we are living in faith...and God is coming through. Little envelopes getting handed to us with "help", grocery bags at the front door, dollars stretching a little further than we are used to. I do know that if we have nothing else we have plenty of peanut butter, jelly and lasagna to last a year!! {that seems to be the staple that everyone provides...cracks me up!!}
But......still, I have peace.
So today I will do my best to just keep Steve comfortable. We are definitely in the "crash after crisis" stage here and everyone is just tired and beat up. But "after crisis" is an ok place to be.
{Update: He'll get a partial paycheck, we can work with that! The disability papers went in the mail today, praying for a quick turn around. This has been a bad day for Steve...the vomiting has not let up much except for a much needed 3 hour nap. I'm waiting for the pharmacy to call with some meds the doctor called in. She thinks he is either withdrawing from the morphine {he stopped it yesterday, does not like how it makes him feel} or just got the flu coincidentally. He does have a fever so probably is a bug.}
Saturday, October 4, 2008
Watching and waiting for each breath...
As much as I am glad that Steve is home it's hard to sleep peacefully. Being in the hospital you get use to the machines that go ping. I know that if his oxygen level drops to a certain point little alarms go off and someone is there to help. At home I just sit and watch {I just looked over and the cat is nibbling on his fingers...LOL!}
It feels like whenever I had a new baby and I would just sit and stare at their chest, watching for it to rise and fall with each breath. One of the nurses explained to me that he won't just stop breathing. His body and brain will fight for oxygen and if he gets in trouble he will wake up. I know she's right because whenever he is in distress he is wide awake and fighting for each breath.
I just want peaceful sleep. I am afraid of getting back into the "old routine" of being awake all night, afraid he will be in trouble and I'll be asleep and then collapsing and sleeping half the day. That is not a life. Not for me or the kids. So I have a favor to ask. What scriptures are your favorites that encourage you when you have fear? What refreshes your trust in God? Would you mind sharing them with me? I could really use them right now! Post them here or email me at thomaszoo8@comcast.net Thank you!
Now I'm off to try and sleep. I think the cat's done.
It feels like whenever I had a new baby and I would just sit and stare at their chest, watching for it to rise and fall with each breath. One of the nurses explained to me that he won't just stop breathing. His body and brain will fight for oxygen and if he gets in trouble he will wake up. I know she's right because whenever he is in distress he is wide awake and fighting for each breath.
I just want peaceful sleep. I am afraid of getting back into the "old routine" of being awake all night, afraid he will be in trouble and I'll be asleep and then collapsing and sleeping half the day. That is not a life. Not for me or the kids. So I have a favor to ask. What scriptures are your favorites that encourage you when you have fear? What refreshes your trust in God? Would you mind sharing them with me? I could really use them right now! Post them here or email me at thomaszoo8@comcast.net Thank you!
Now I'm off to try and sleep. I think the cat's done.
Thursday, October 2, 2008
He is HOME!
Steve is finally home. He is very, very tired but happy to be home. He now has a portable oxygen concentrator that he can use 24/7 until he feels better. Yes I wrote until he feels better. I'm not really the "name it claim it" type but I thought I'd give it a try.
In the month of September Steve spent 26 days in the hospital, one and a half on October. Please pray for a home free October. He's on morphine and a couple of meds for anxiety {thank you Lord!!}. They also gave him some meds for the edema in his feet. It really is not a big issue but it bothers and worries him to see his feet and ankles so swollen. I re-arranged the furniture in our room last night so he has a clearer path to the bathroom, you know what those diuretics do!
We have an appointment with Dr. Balasubramanian at 4pm. He asks us to call him Dr. Bala. We really like him. I'll try to update later tonight after the appointment.
UPDATE:
The appointment went well. The Dr. did make some comment about difficulty with consistency and conflicting information and different hospitals and doctors. I gave him quite a glare for that..and just WHO'S fault is all the conflict? I'll make a post later about how infuriating these past nine months have been regarding getting referrals and appointments and the incompetence we have encountered. After I told him just what I thought about all of that he did say "I wasn't saying it was your fault". Thank you.
He thinks Steve is a mystery but not hopeless. He feels that he has been put on way too many different medications and that has done more harm to him than good. He has pretty much taken him off of all respiratory meds except one {still have the rescue meds as well} and he will be on morphine for a few weeks to see if that can get his pain under control. No more steroids, no more antibiotics. He is getting him into a ear/nose/throat doctor to look at his larynx, that may be part of his problem. Maybe. I think he is just looking at everything he can and I'm ok with that. He also want him to go to UCSF in San Fransisco. I was glad to hear that, I actually worried he might be offended if we went ahead and did that but he wants everyone who can to look at Steve's case. We'll return in three weeks to see him, if we don't have any problems before.
I feel better. The doctor did say he will help him and not abandon us and that felt really good. He really does seem like a good guy and everyone in the waiting room just raved about him. Of course the ultimate "good guy" is God and I'm trying to hold onto hope and faith. I'm taking it one day at a time and today was a good day.
In the month of September Steve spent 26 days in the hospital, one and a half on October. Please pray for a home free October. He's on morphine and a couple of meds for anxiety {thank you Lord!!}. They also gave him some meds for the edema in his feet. It really is not a big issue but it bothers and worries him to see his feet and ankles so swollen. I re-arranged the furniture in our room last night so he has a clearer path to the bathroom, you know what those diuretics do!
We have an appointment with Dr. Balasubramanian at 4pm. He asks us to call him Dr. Bala. We really like him. I'll try to update later tonight after the appointment.
UPDATE:
The appointment went well. The Dr. did make some comment about difficulty with consistency and conflicting information and different hospitals and doctors. I gave him quite a glare for that..and just WHO'S fault is all the conflict? I'll make a post later about how infuriating these past nine months have been regarding getting referrals and appointments and the incompetence we have encountered. After I told him just what I thought about all of that he did say "I wasn't saying it was your fault". Thank you.
He thinks Steve is a mystery but not hopeless. He feels that he has been put on way too many different medications and that has done more harm to him than good. He has pretty much taken him off of all respiratory meds except one {still have the rescue meds as well} and he will be on morphine for a few weeks to see if that can get his pain under control. No more steroids, no more antibiotics. He is getting him into a ear/nose/throat doctor to look at his larynx, that may be part of his problem. Maybe. I think he is just looking at everything he can and I'm ok with that. He also want him to go to UCSF in San Fransisco. I was glad to hear that, I actually worried he might be offended if we went ahead and did that but he wants everyone who can to look at Steve's case. We'll return in three weeks to see him, if we don't have any problems before.
I feel better. The doctor did say he will help him and not abandon us and that felt really good. He really does seem like a good guy and everyone in the waiting room just raved about him. Of course the ultimate "good guy" is God and I'm trying to hold onto hope and faith. I'm taking it one day at a time and today was a good day.
Wednesday, October 1, 2008
Who me? Frustrated?
I'm just numb now. I have no other emotions.
Steve is supposed to get out of the rehab hospital tomorrow morning. The plan was to see his pulmonologist at 1:00. While I was at the pediatrician with Laryssa for three hours the pulmo doctors office called and said they are canceling the appointment, he needs to see some other doctor....have no idea who or even how to pronounce their name. Now I'm being told he has to see some resident and they can't see him until the end of next week. If things go the way they have been he'll be back in the hospital by then anyway so why even bother. That pulmonologist stood in my husbands hospital room a week and a half ago and said he would see my husband in his private office. Right. Oh, and UCSF won't call me back. Wonder why.
I'm just done. I give up. I'm going back to bed.
UPDATE:
I guess freaking out and breaking down in tears works. More likely it was the praying I was doing.
The doctors office called back. Yes he did remember telling us he would follow my husband and he said he will see him tomorrow at 4:00. They even told me where to park so he could ride the elevator instead of using the stairs and if he was too weak to do that they will bring a wheelchair down for him {I have yet to see my husband ride in a wheelchair...he'll have to be paralyzed for that to happen!}
I cried at the pharmacy the other night too when they told my my prescription was at another store and I could not get it until the next day. They filled it anyway and got me out of there in less than ten minutes. I don't know if they felt sorry for me or if I freaked them out.
I'm crying a lot lately. Please pray for me.
I'll update after the appointment tomorrow.
Steve is supposed to get out of the rehab hospital tomorrow morning. The plan was to see his pulmonologist at 1:00. While I was at the pediatrician with Laryssa for three hours the pulmo doctors office called and said they are canceling the appointment, he needs to see some other doctor....have no idea who or even how to pronounce their name. Now I'm being told he has to see some resident and they can't see him until the end of next week. If things go the way they have been he'll be back in the hospital by then anyway so why even bother. That pulmonologist stood in my husbands hospital room a week and a half ago and said he would see my husband in his private office. Right. Oh, and UCSF won't call me back. Wonder why.
I'm just done. I give up. I'm going back to bed.
UPDATE:
I guess freaking out and breaking down in tears works. More likely it was the praying I was doing.
The doctors office called back. Yes he did remember telling us he would follow my husband and he said he will see him tomorrow at 4:00. They even told me where to park so he could ride the elevator instead of using the stairs and if he was too weak to do that they will bring a wheelchair down for him {I have yet to see my husband ride in a wheelchair...he'll have to be paralyzed for that to happen!}
I cried at the pharmacy the other night too when they told my my prescription was at another store and I could not get it until the next day. They filled it anyway and got me out of there in less than ten minutes. I don't know if they felt sorry for me or if I freaked them out.
I'm crying a lot lately. Please pray for me.
I'll update after the appointment tomorrow.
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