Steve was admitted to the hospital Monday night for pneumonia. He was released today and is doing MUCH better! This hit him hard and fast but, I believe, since he has been doing so well lately and regaining his strength he seemed to bounce back much quicker than he had been before the trach.
So we didn't make it through the month of April. That's ok. We are still praising God and enjoying Steve's continuing healing. I'm just thankful everyday that he is alive!
Thursday, April 23, 2009
Friday, April 17, 2009
In need of some help!
I posted this on my facebook today. Since I know there are still some people not over there I thought I should post this here:
Ok first of all this is a very hard thing for me to do, I almost never ask for help. As most of you know my husband spent the past year in the hospital, actually admitted 20 times. We were pretty sure at one point he wasn't going to make it. But praise God we found a doctor at Stanford who figured out what was wrong and three days before Thanksgiving he had surgery {a tracheotomy, allowing him to breathe} and he is on the road to being well.
As I'm sure you can imagine our lives were spent in crisis mode quite often and it took all my husband had in him just to stay employed and provide for his family. Something he did an incredible job of! But everything else took a back seat and we are seeing that the work ahead of us is overwhelming, if not impossible to do by ourselves. We have had many many offers of help but haven't really been able to see clearly what we needed help with as we have just been focusing on learning to live this new life we have now and adjusting to the medical challenges and regaining health and strength.
So what do we need? Well....we have rented a dumpster and we are hoping to rally our friends to come help out on Saturday May 2nd from 10 am till it's done. We need the back and front yard cleaned up and hauled off! We could easily fill the dumpster and lots of trash bags. We don't have a lot of yard tools so if you have some you don't mind sharing that would be great!
We will provide pizza and plenty to drink and some of the biggest hugs you could ever imagine {Brandon has become a master at hugs!}. If this is something you think you could help with please message me here or call at 776-3089 or email at thomaszoo8@comcast.net. Our family would be eternally thankful and my husband will sleep better knowing he does not have as much responsibility and an just rest. Did I say that man amazes me? We are very blessed!
Thank you all my loved ones for all your blessings and support!!!
Love Rhonda~
Ok first of all this is a very hard thing for me to do, I almost never ask for help. As most of you know my husband spent the past year in the hospital, actually admitted 20 times. We were pretty sure at one point he wasn't going to make it. But praise God we found a doctor at Stanford who figured out what was wrong and three days before Thanksgiving he had surgery {a tracheotomy, allowing him to breathe} and he is on the road to being well.
As I'm sure you can imagine our lives were spent in crisis mode quite often and it took all my husband had in him just to stay employed and provide for his family. Something he did an incredible job of! But everything else took a back seat and we are seeing that the work ahead of us is overwhelming, if not impossible to do by ourselves. We have had many many offers of help but haven't really been able to see clearly what we needed help with as we have just been focusing on learning to live this new life we have now and adjusting to the medical challenges and regaining health and strength.
So what do we need? Well....we have rented a dumpster and we are hoping to rally our friends to come help out on Saturday May 2nd from 10 am till it's done. We need the back and front yard cleaned up and hauled off! We could easily fill the dumpster and lots of trash bags. We don't have a lot of yard tools so if you have some you don't mind sharing that would be great!
We will provide pizza and plenty to drink and some of the biggest hugs you could ever imagine {Brandon has become a master at hugs!}. If this is something you think you could help with please message me here or call at 776-3089 or email at thomaszoo8@comcast.net. Our family would be eternally thankful and my husband will sleep better knowing he does not have as much responsibility and an just rest. Did I say that man amazes me? We are very blessed!
Thank you all my loved ones for all your blessings and support!!!
Love Rhonda~
Thursday, April 2, 2009
That wasn't funny.
Well we broke our record for no ER visits, but this one was not really "serious".
Tuesday afternoon I was on my way home from the grocery store when Steve called:
Him: Umm...I have a little problem.
Me: Which kid was it and what did they do?
Him: No, it's not that. My trach tube came out.
Me: So put it back in.
Him: I've been trying, it won't go in.
Me: I'm on my way home.
He was right, it wasn't going in no matter how hard he tried. And the hole was clearly starting to close down. Since he was breathing ok and his throat/vocal cords were not closing we had time so we headed to the ER {it was after hours, otherwise we would have gone to his ENT}
The ER was great about taking him right in. It's a good thing because he was starting to have difficulty breathing and his O2 numbers were in the low 80's.
So first the respiratory therapist tried to get it back in but it was a no go. Then the ER doc. It was brutal to watch, and it was extremely painful for Steve. They started talking a smaller tube but we explained that he had already experienced that last month and he could not tolerate it. So they called in the ENT.
The tube wasn't going in for him either so he numbed his throat up and stretched the hole open and after a lot of pushing and prodding and then "POP" it went in. RELIEF!! Steve's O2 numbers immediately climbed up to 99%.
What happened was Steve was doing some repair work in the backyard and he brushed up against something with a screw sticking out and it caught on the collar that holds the tube in place. Yanked the thing right out. He didn't even realize it until he saw it hanging on his shirt! Steve is such a ridiculously fast healer that that hole just started closing up instantly. Good thing he isn't into body piercing.
So last night I'm running kids around and doing some errands and I get a call:
Him: Umm...I have a little problem.
Me: What now?
Him: You aren't going to believe this.
Me: I probably will.
Him: My tube came out again.
Me: I DO know what todays date is you know.
Him: Dang it.
Tuesday afternoon I was on my way home from the grocery store when Steve called:
Him: Umm...I have a little problem.
Me: Which kid was it and what did they do?
Him: No, it's not that. My trach tube came out.
Me: So put it back in.
Him: I've been trying, it won't go in.
Me: I'm on my way home.
He was right, it wasn't going in no matter how hard he tried. And the hole was clearly starting to close down. Since he was breathing ok and his throat/vocal cords were not closing we had time so we headed to the ER {it was after hours, otherwise we would have gone to his ENT}
The ER was great about taking him right in. It's a good thing because he was starting to have difficulty breathing and his O2 numbers were in the low 80's.
So first the respiratory therapist tried to get it back in but it was a no go. Then the ER doc. It was brutal to watch, and it was extremely painful for Steve. They started talking a smaller tube but we explained that he had already experienced that last month and he could not tolerate it. So they called in the ENT.
The tube wasn't going in for him either so he numbed his throat up and stretched the hole open and after a lot of pushing and prodding and then "POP" it went in. RELIEF!! Steve's O2 numbers immediately climbed up to 99%.
What happened was Steve was doing some repair work in the backyard and he brushed up against something with a screw sticking out and it caught on the collar that holds the tube in place. Yanked the thing right out. He didn't even realize it until he saw it hanging on his shirt! Steve is such a ridiculously fast healer that that hole just started closing up instantly. Good thing he isn't into body piercing.
So last night I'm running kids around and doing some errands and I get a call:
Him: Umm...I have a little problem.
Me: What now?
Him: You aren't going to believe this.
Me: I probably will.
Him: My tube came out again.
Me: I DO know what todays date is you know.
Him: Dang it.
Monday, March 23, 2009
Is it possible?
We just left the hematologists office and he said so far everything looks good. He is running tow more blood tests that will be back in about 6 weeks. He doesn't expect anything significant to show up. We are right back to this all coming from the knee surgery. We're ok with that.
The surgery to replace the trach last week went just fine. Other than his usual post anesthesia reaction that always freaks them out. They came running to get me, ready to call 911! {we were in the surgery center} I get in there and he is surrounded by nurses trying to get him to respond. They look at me and ask if this is his usual reaction and I just say "yep, he'll be just fine in an hour". Of course this meant I had to stay in the recovery room with him. My heartfelt empathy goes out to anyone with a loved one with Alzheimer's. Having to remind him over and over where he is and why is not fun! But just as I said....an hour later and he was wide awake and joking and ready to leave!
So as we were leaving the doctors office today Steve asked if he had any more appointments. This doctor said to return in two months. I couldn't think of anyone else we needed to see. I then realized we could actually get through the entire month of April without seeing a single doctor! I don't think we visited the ER in March. This is a GOOD thing. No...it's a GOD thing!!!
God is GOOD!!
The surgery to replace the trach last week went just fine. Other than his usual post anesthesia reaction that always freaks them out. They came running to get me, ready to call 911! {we were in the surgery center} I get in there and he is surrounded by nurses trying to get him to respond. They look at me and ask if this is his usual reaction and I just say "yep, he'll be just fine in an hour". Of course this meant I had to stay in the recovery room with him. My heartfelt empathy goes out to anyone with a loved one with Alzheimer's. Having to remind him over and over where he is and why is not fun! But just as I said....an hour later and he was wide awake and joking and ready to leave!
So as we were leaving the doctors office today Steve asked if he had any more appointments. This doctor said to return in two months. I couldn't think of anyone else we needed to see. I then realized we could actually get through the entire month of April without seeing a single doctor! I don't think we visited the ER in March. This is a GOOD thing. No...it's a GOD thing!!!
God is GOOD!!
Wednesday, March 11, 2009
Better.
I deleted that last post because...well I just didn't want my "stuff" out there. If I can be honest here I struggle a lot with anger and when it comes to those I love it rears it's very ugly head more than I like. And I'm sure others as well. I like to believe God is working on me in this regard.
Steve has to have surgery next Wednesday to have his trach replaced. Why doesn't matter. God is in all the details and we may not understand why right now but someday we will.
Steve has to have surgery next Wednesday to have his trach replaced. Why doesn't matter. God is in all the details and we may not understand why right now but someday we will.
Tuesday, March 3, 2009
Not one in a million
But he is still my 1 in 6.76 billion!
The doctor called and the test he sent to Maine for PNH was negative. No word on the other tests yet but this was the one we were most concerned about.
Tomorrow Steve will have another bronchoscopy done to make sure the source of bleeding is not coming from his lungs. The CT scan to check for carcinoids is scheduled for the 17th.
The doctor called and the test he sent to Maine for PNH was negative. No word on the other tests yet but this was the one we were most concerned about.
Tomorrow Steve will have another bronchoscopy done to make sure the source of bleeding is not coming from his lungs. The CT scan to check for carcinoids is scheduled for the 17th.
Monday, February 23, 2009
One in a Million
I am going to have that printed on a T-shirt for my husband because apparently he may be One in a Million!
We had our appointment today with the hematologist/oncologist. I was expecting nothing much but that was not to be. Here is what we are now facing...
Three tests came back concerning.
Two weeks ago the doctor wasn't very concerned about the carcinoid cells. Now he is. The test for that came back "elevated". We don't know what that means at this point but more tests are being ordered. This is a very slow growing form of cancer, it could have been there 20 years so. Cat scans are being ordered right now, I'm not sure what's next. What we do know is that the current concern is the nodule on his adrenal gland. That gland sits on top of your kidney. The doctor assured me today that you can live a full life with just one kidney. Not sure I wanted to here that but ok!
Test number two is a little odd. He came up positive for something called lupus anticoagulant syndrome. This does not mean he has lupus. Actually I'm not sure I know exactly what it means but the doctor said it's treatable. They do not diagnose you with this disease until you have two positives so more blood work is being done.
Number three is a bit tougher. It's called paroxysmal nocturnal hemoglobinuria or PNH. It's usually not a good thing when your doctor is reviewing your record and suddenly says "wow". What he explained is when someone goes in for blood clot issues a battery of tests are run including this one. They never expect a positive because it is only seen in 1 to 5 in a million people. Most hematologists never see this their entire career, including Steve's doctor. A follow up test is being done. They shipped some blood via Fed-Ex today to Maine. Apparently a lab there specializes in this. It takes one week, we will know on Tuesday. Interestingly enough Steve's doctor will be traveling to a convention later this week in Florida. One of the items being discussed is PNH.
So here is how I am choosing to look at all this news.
1. Steve had all of these conditions and either God is going to heal him miraculously either divinely, through medicine and doctors or ultimately through death. Steve could have died many times over this past year and he didn't. I do not fear that as much as I used to. He truly is in God's hands.
2. The knee surgery/vocal cord injury/blood clots/tracheotomy all happened in Gods plan to reveal all this other stuff that we would have NEVER discovered otherwise and it can be dealt with. If all this had not happened it is entirely possible it might not have been found it until it was too late. Steve is only 52. Everyone keeps telling him he's young. If these are things that can be treated better to do it now than when he is older with decreased chance of recovery.
3. The tests are all wrong. Never know, we are talking about the man who had a suddenly re-grown appendix! I'm ok with this too.
There is a saying in the medical profession: When you hear hoofbeats you think horses not zebras. In other words you think of the most likely cause of a problem not the unusual.
It's looking like my husband is a zebra.
We had our appointment today with the hematologist/oncologist. I was expecting nothing much but that was not to be. Here is what we are now facing...
Three tests came back concerning.
Two weeks ago the doctor wasn't very concerned about the carcinoid cells. Now he is. The test for that came back "elevated". We don't know what that means at this point but more tests are being ordered. This is a very slow growing form of cancer, it could have been there 20 years so. Cat scans are being ordered right now, I'm not sure what's next. What we do know is that the current concern is the nodule on his adrenal gland. That gland sits on top of your kidney. The doctor assured me today that you can live a full life with just one kidney. Not sure I wanted to here that but ok!
Test number two is a little odd. He came up positive for something called lupus anticoagulant syndrome. This does not mean he has lupus. Actually I'm not sure I know exactly what it means but the doctor said it's treatable. They do not diagnose you with this disease until you have two positives so more blood work is being done.
Number three is a bit tougher. It's called paroxysmal nocturnal hemoglobinuria or PNH. It's usually not a good thing when your doctor is reviewing your record and suddenly says "wow". What he explained is when someone goes in for blood clot issues a battery of tests are run including this one. They never expect a positive because it is only seen in 1 to 5 in a million people. Most hematologists never see this their entire career, including Steve's doctor. A follow up test is being done. They shipped some blood via Fed-Ex today to Maine. Apparently a lab there specializes in this. It takes one week, we will know on Tuesday. Interestingly enough Steve's doctor will be traveling to a convention later this week in Florida. One of the items being discussed is PNH.
So here is how I am choosing to look at all this news.
1. Steve had all of these conditions and either God is going to heal him miraculously either divinely, through medicine and doctors or ultimately through death. Steve could have died many times over this past year and he didn't. I do not fear that as much as I used to. He truly is in God's hands.
2. The knee surgery/vocal cord injury/blood clots/tracheotomy all happened in Gods plan to reveal all this other stuff that we would have NEVER discovered otherwise and it can be dealt with. If all this had not happened it is entirely possible it might not have been found it until it was too late. Steve is only 52. Everyone keeps telling him he's young. If these are things that can be treated better to do it now than when he is older with decreased chance of recovery.
3. The tests are all wrong. Never know, we are talking about the man who had a suddenly re-grown appendix! I'm ok with this too.
There is a saying in the medical profession: When you hear hoofbeats you think horses not zebras. In other words you think of the most likely cause of a problem not the unusual.
It's looking like my husband is a zebra.
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