Tomorrow it will be the 1st of December. I will send my husband off to work, children off to school, put the dogs and cats out. Well actually the dogs will probably snooze on my bed. And then I will put a "DO NOT DISTURB" sign on my front door.
Do you think it will work?
Actually I have a lot of phone calls to make and probably a doctor visit for Steve. His numbers were very low regarding his blood thinning when he was discharged last Wednesday so we need to follow up on that. Don't need a blood clot now!
But maybe this is the start of a new phase in our home? All I know is I really need a vacation.
Sunday, November 30, 2008
Will we get used to this?
After so many years of constantly interrupted sleep this is just so strange. Steve used to struggle so bad all night long. Snoring and choking and the long pauses between breaths. It's startling to look over and see a pillow covering his face yet he is breathing, and breathing well.
I have not heard a snore or a snort since Sunday night. Jason called earlier and could hear his dad talking. Steve has talked in his sleep ever since I have known him. Holds entire conversations. It can be very entertaining! So he hears his dad talking and asks to speak to him. I told Jason his dad was asleep. "But he isn't snoring!". Yeah, I know!
While things are going well he is still having the chest pain and his reflux seems to have actually become worse. The pain where his gall bladder is is still pretty bad as well. We will explore all this in the coming week.
But at least he is BREATHING!
I have not heard a snore or a snort since Sunday night. Jason called earlier and could hear his dad talking. Steve has talked in his sleep ever since I have known him. Holds entire conversations. It can be very entertaining! So he hears his dad talking and asks to speak to him. I told Jason his dad was asleep. "But he isn't snoring!". Yeah, I know!
While things are going well he is still having the chest pain and his reflux seems to have actually become worse. The pain where his gall bladder is is still pretty bad as well. We will explore all this in the coming week.
But at least he is BREATHING!
Saturday, November 29, 2008
Ready to rid our lives of some stuff!
Well we are now on day 6 of Steves new life. I took a look around our room and decided it was time to be rid of a few things.
First I rolled out the oxygen compressor that is the size of a small refrigerator and sounds like an idling car. During the summer it put out so much heat our room was never below 90 degrees! Sure it might come in handy now that it is getting cold but did you read where I said it sounds like an idling car?
Along with the O2 machine went the miles and miles of tubing. That stuff actually jumps out to trip you every chance it gets. And I always had that nagging fear the puppy would chew through it and starve my poor unsuspecting husband of his precious air.
I also rolled out the spare O2 tank sitting in the corner. We were warned not to place it in the closet as it needed to "breathe". I'm still trying to figure that one out! While it wasn't as obtrusive as the big machine I did worry. You see I have two boys who are afflicted with a little of bit of pyromania and every time they came in my room they would eyeball that thing with such a longing look. I think it's best I remove that temptation.
While I was at it I packed up the Bi-pap machine. The $6000 Bi-pap machine for my husbands severe sleep apnea. The severe sleep apnea that he doesn't have anymore! I won't return it until we decide if this is permanent. If the trach is removed the apnea comes back. We'll cross that bridge when we get there. But in the meantime it can be stowed away in the closet where we don't have to look at it everyday!
I actually put away the nebulizer. It is still close by as he could need it from time to time if he gets a cold or needs a treatment if he has asthma issues. But he certainly is not needing it 6-8 times a day like he was. It can be pulled out of a drawer for the occasional times we may need it. I can also stow away the millions of supplies I constantly needed for it.
I have a feeling if things continue to progress well I can probably be rid of a few of the medicines that are taking up precious space.
Now I did have to add a couple of things. Of course there is the suction machine. I currently have that sitting in the kitchen. There is better lighting there and with all the other junk in our bedroom there was no space. I'm not sure what I will do with it yet. Especially considering that it has sat there and gathered dust since we got home. We used it once Thursday morning and have not touched it since. I'm told that is almost unheard of.
I did get a small humidifier that sits on the desk next to the bedside. The supply company did give us a machine for humidification but as small as it is it sounds like an idling engine. An idling diesel engine. No thank you.
We did get about $1000 worth of supplies. We sat and went through everything yesterday and just shook our heads. For the thousand dollars the insurance was billed we could have easily purchased all of those "supplies" for a fraction of that. The "trach care kits" are hysterical. For $10 a kit {we got a box of 30, a charge of $300...they send this monthly} you get a plastic 2 compartment tray, 1 pair of gloves {they aren't even sterile} 1 poly lined drape {it looks like that towel the dentist lays under your chin} 1 teeny tiny nylon bristle brush {the nurses actually told us DO NOT USE THAT BRUSH!} 1 slit trach gauze {they show you online how to make this out of a simple 4x4 gauze, and Steve rarely needs it anyway} 4 4x4 gauze sponges, 1 twill tape {no idea what THAT is for...it looks like a shoestring} 3 pipe cleaners and 2 cotton tipped applicators {people, they are Q-Tips!}. All of this for $300 a month. Our durable medical is $1000 a year. I think we will gather these supplies, only half or less of which are even necessary, ourselves.
We will be contacting the supply company on Monday to come pick up most of this "stuff". Now don't get me wrong, I am sure there are probably some people that really need all that stuff. I just guess we don't. And we are ok with that, we need the space!
First I rolled out the oxygen compressor that is the size of a small refrigerator and sounds like an idling car. During the summer it put out so much heat our room was never below 90 degrees! Sure it might come in handy now that it is getting cold but did you read where I said it sounds like an idling car?
Along with the O2 machine went the miles and miles of tubing. That stuff actually jumps out to trip you every chance it gets. And I always had that nagging fear the puppy would chew through it and starve my poor unsuspecting husband of his precious air.
I also rolled out the spare O2 tank sitting in the corner. We were warned not to place it in the closet as it needed to "breathe". I'm still trying to figure that one out! While it wasn't as obtrusive as the big machine I did worry. You see I have two boys who are afflicted with a little of bit of pyromania and every time they came in my room they would eyeball that thing with such a longing look. I think it's best I remove that temptation.
While I was at it I packed up the Bi-pap machine. The $6000 Bi-pap machine for my husbands severe sleep apnea. The severe sleep apnea that he doesn't have anymore! I won't return it until we decide if this is permanent. If the trach is removed the apnea comes back. We'll cross that bridge when we get there. But in the meantime it can be stowed away in the closet where we don't have to look at it everyday!
I actually put away the nebulizer. It is still close by as he could need it from time to time if he gets a cold or needs a treatment if he has asthma issues. But he certainly is not needing it 6-8 times a day like he was. It can be pulled out of a drawer for the occasional times we may need it. I can also stow away the millions of supplies I constantly needed for it.
I have a feeling if things continue to progress well I can probably be rid of a few of the medicines that are taking up precious space.
Now I did have to add a couple of things. Of course there is the suction machine. I currently have that sitting in the kitchen. There is better lighting there and with all the other junk in our bedroom there was no space. I'm not sure what I will do with it yet. Especially considering that it has sat there and gathered dust since we got home. We used it once Thursday morning and have not touched it since. I'm told that is almost unheard of.
I did get a small humidifier that sits on the desk next to the bedside. The supply company did give us a machine for humidification but as small as it is it sounds like an idling engine. An idling diesel engine. No thank you.
We did get about $1000 worth of supplies. We sat and went through everything yesterday and just shook our heads. For the thousand dollars the insurance was billed we could have easily purchased all of those "supplies" for a fraction of that. The "trach care kits" are hysterical. For $10 a kit {we got a box of 30, a charge of $300...they send this monthly} you get a plastic 2 compartment tray, 1 pair of gloves {they aren't even sterile} 1 poly lined drape {it looks like that towel the dentist lays under your chin} 1 teeny tiny nylon bristle brush {the nurses actually told us DO NOT USE THAT BRUSH!} 1 slit trach gauze {they show you online how to make this out of a simple 4x4 gauze, and Steve rarely needs it anyway} 4 4x4 gauze sponges, 1 twill tape {no idea what THAT is for...it looks like a shoestring} 3 pipe cleaners and 2 cotton tipped applicators {people, they are Q-Tips!}. All of this for $300 a month. Our durable medical is $1000 a year. I think we will gather these supplies, only half or less of which are even necessary, ourselves.
We will be contacting the supply company on Monday to come pick up most of this "stuff". Now don't get me wrong, I am sure there are probably some people that really need all that stuff. I just guess we don't. And we are ok with that, we need the space!
Friday, November 28, 2008
Today is better.
Steve actually came in and said that he feels better than he has in a very long time. I'm exhausted. I know we will have our ups and downs. Keep praying, please.
Thursday, November 27, 2008
Wednesday, November 26, 2008
Today I am THANKFUL for....
The fact that Steve is coming home today!!
I don't have time to post all of the details, I promise to get back to that later.
The trach part of the experience has gone better than expected. His doctor came in last night and said the surgery was practically bloodless and it had to be one of the easiest ones he had ever performed.
Thankful.
Things that did not go well was his reaction to the anesthesia. They actually called a stroke code Monday night. His CT was clear, he did not have a stroke.
Thankful.
He has been very confused. He still does not know what hospital he is in or why he had the surgery. But some things are coming back. Today he told the nurse he has 6 children {before he could not tell}
Thankful.
He can talk. And he can talk well.
Thankful.
We rented a car for the trip. I was supposed to have it back today. They are closed tomorrow, so I would not be able to return it until Friday and they would have to charge me for an extra two days. I called them and explained the situation. They are not charging me! {By the way it is Enterprise in case you ever want to use a company that has a heart!}
Thankful.
Beth {my best friend and an RN and the only other person Steve could remember for the last 2 days...he has asked for her numerous times!} is going to travel with me to pick him up. That will bring great comfort to Steve and it's always a good thing to have your very own private nurse with ER experience.
Thankful.
Last night on the ride home I was not paying attention to the gas gauge on the Toyota Yaurus. The instrument panel is in the middle of the dashboard and I just spaced on it. I noticed the light flashing while I was out in the middle of no where. The car started to sputter and slow down. Just then I looked up and there was the Pilot gas depot. I coasted up the exit and turned into the lot and just when I got to the pump the car died. I sat and laughed like a fool for a few moments! I will pay attention to the gas this time. I won't temp God on that one!
Thankful.
I have a wonderful God who still loved me, cares about me and keeps me safe even when I threw big huge tantrums yesterday and tell dear friends that I don't exactly feel like God is here with me right now and I am just sick of this. He knows I will come around and be grateful that He absolutely was and is with me. My kids throw tantrums, a lot. I still love them very much and would die for them.
Very Thankful.
I have wonderful friends who love us and pray for us and help and encourage us.
Extremely and Eternally Thankful.
Please continue to pray. Steve is well physically but this is emotionally hard for him. He needs lots of encouragement and support. I have talked with lots of people on the "net" who have had tracheostomies. All of them have said the first few weeks can be very hard and it takes time to adjust. All of them have said if they had it to do over they would do it in an instant, it changed their lives all for the better.
Have a HAPPY THANKSGIVING and of you think about it thank Jesus for being there for my family too!!
{Oh...and Laryssa turned 10 today!! WOO HOO!!!}
I don't have time to post all of the details, I promise to get back to that later.
The trach part of the experience has gone better than expected. His doctor came in last night and said the surgery was practically bloodless and it had to be one of the easiest ones he had ever performed.
Thankful.
Things that did not go well was his reaction to the anesthesia. They actually called a stroke code Monday night. His CT was clear, he did not have a stroke.
Thankful.
He has been very confused. He still does not know what hospital he is in or why he had the surgery. But some things are coming back. Today he told the nurse he has 6 children {before he could not tell}
Thankful.
He can talk. And he can talk well.
Thankful.
We rented a car for the trip. I was supposed to have it back today. They are closed tomorrow, so I would not be able to return it until Friday and they would have to charge me for an extra two days. I called them and explained the situation. They are not charging me! {By the way it is Enterprise in case you ever want to use a company that has a heart!}
Thankful.
Beth {my best friend and an RN and the only other person Steve could remember for the last 2 days...he has asked for her numerous times!} is going to travel with me to pick him up. That will bring great comfort to Steve and it's always a good thing to have your very own private nurse with ER experience.
Thankful.
Last night on the ride home I was not paying attention to the gas gauge on the Toyota Yaurus. The instrument panel is in the middle of the dashboard and I just spaced on it. I noticed the light flashing while I was out in the middle of no where. The car started to sputter and slow down. Just then I looked up and there was the Pilot gas depot. I coasted up the exit and turned into the lot and just when I got to the pump the car died. I sat and laughed like a fool for a few moments! I will pay attention to the gas this time. I won't temp God on that one!
Thankful.
I have a wonderful God who still loved me, cares about me and keeps me safe even when I threw big huge tantrums yesterday and tell dear friends that I don't exactly feel like God is here with me right now and I am just sick of this. He knows I will come around and be grateful that He absolutely was and is with me. My kids throw tantrums, a lot. I still love them very much and would die for them.
Very Thankful.
I have wonderful friends who love us and pray for us and help and encourage us.
Extremely and Eternally Thankful.
Please continue to pray. Steve is well physically but this is emotionally hard for him. He needs lots of encouragement and support. I have talked with lots of people on the "net" who have had tracheostomies. All of them have said the first few weeks can be very hard and it takes time to adjust. All of them have said if they had it to do over they would do it in an instant, it changed their lives all for the better.
Have a HAPPY THANKSGIVING and of you think about it thank Jesus for being there for my family too!!
{Oh...and Laryssa turned 10 today!! WOO HOO!!!}
Tuesday, November 25, 2008
At the hospital
Yesterday was a VERY long day. Steve pretty much was out the entire day. We had a scare, he seemed like he had had a stroke but the head CT was ok and he is doing better. He is a bit more alert but has lost a lot of memory. They are saying it is likely an anesthesia reaction. The doctors will be in soon and we'll find out more.He is not in too much pain and he is breathing well. He will not be able to speak for a few days so that is frustrating. He forgot that he had the tracheostomy and got very frustrated that he could not talk, I think he is getting it now.I have to head back but wanted to give a quick update. Thanks for all the love and prayers!!
Sunday, November 23, 2008
The day has come.
Well we leave here at 5am. Surgery is scheduled for 12:30. I should have internet access at the hospital so I will try to get online and post an update.
Steve is a nervous wreck but looking forward to getting it done and over with.
It's a likely possibility that I may be traveling on Thanksgiving day to pick him, if all goes well. We have decided Wednesday afternoon/evening is not the wisest time to make the trip but we'll see.
Please pray for all of the obvious. Also that we get there safely with little to no fog {of course most of you will have read this after we have already arrived!}
Steve is a nervous wreck but looking forward to getting it done and over with.
It's a likely possibility that I may be traveling on Thanksgiving day to pick him, if all goes well. We have decided Wednesday afternoon/evening is not the wisest time to make the trip but we'll see.
Please pray for all of the obvious. Also that we get there safely with little to no fog {of course most of you will have read this after we have already arrived!}
Friday, November 21, 2008
Better.
I feel better now. Thank you all for the continuing prayer.
We saw the local ENT and we really like him. He was very reassuring, told us we are doing the right thing and answered all of our questions. He will see Steve a week after surgery and follow up on all of his care.
The panic I was feeling yesterday is gone. It's still not going to be fun but I have confidence now and I know God is with us.
Steve forgot to ask him his important question but I'm pretty sure he can't use his trach as a paintball gun. But he could probably play a harmonica.
We saw the local ENT and we really like him. He was very reassuring, told us we are doing the right thing and answered all of our questions. He will see Steve a week after surgery and follow up on all of his care.
The panic I was feeling yesterday is gone. It's still not going to be fun but I have confidence now and I know God is with us.
Steve forgot to ask him his important question but I'm pretty sure he can't use his trach as a paintball gun. But he could probably play a harmonica.
Thursday, November 20, 2008
Emotional Crisis
I am going to be brutally honest. I'm having a very hard time. I'm struggling with the decision to go ahead with this surgery. There are so many issues, so many things to learn so much unknown.
I think more than anytime in my life right now I have to figure out how to "let go and let God". I like to think I am not generally the type of person who has a need to be in control. I've learned a lot over the years as a mother about giving up the "need" to control. But I guess in those situations I still have control over giving up control {yeah that gave me a headache too!}.
In this case I can't control any of it even if I tried, and believe me I have tried. What's interesting is my husband seems to be okay with what's going on. I'm not feeling the physical symptoms he is and he just wants to do it and move on. I'm stuck.
I could go on and on but I think I've been clear enough. I think now more than ever we could really use all the prayer and support we can get. I am not sleeping well and am pretty exhausted and there are a lot of things to accomplish in the coming days, and after. I need strength.
I think more than anytime in my life right now I have to figure out how to "let go and let God". I like to think I am not generally the type of person who has a need to be in control. I've learned a lot over the years as a mother about giving up the "need" to control. But I guess in those situations I still have control over giving up control {yeah that gave me a headache too!}.
In this case I can't control any of it even if I tried, and believe me I have tried. What's interesting is my husband seems to be okay with what's going on. I'm not feeling the physical symptoms he is and he just wants to do it and move on. I'm stuck.
I could go on and on but I think I've been clear enough. I think now more than ever we could really use all the prayer and support we can get. I am not sleeping well and am pretty exhausted and there are a lot of things to accomplish in the coming days, and after. I need strength.
Tuesday, November 18, 2008
Stanford called...
They were going to cancel the surgery. Of course my cell phone was dead when they left that message and when I finally realized it it was lunchtime everywhere and you can never get a hold of doctors offices between 12 and 2. But my husband has his ways! I tell you the man is amazing.
Apparently the cardiologist we saw last week had not faxed the surgery clearance to Stanford. I was warned when they first scheduled the surgery that anesthesia is very insistent about having all the i's dotted and t's crossed and if they asked for something make sure it was there in a timely manner as they have been known to cancel even on the day of, hour of surgery.
Steve got on the phone and tracked everyone down and by three o'clock the proper papers were faxed and Stanford received them and we are good to go.
We also got the medicine today. While the insurance company cleared it the co-pay was $150! {since we needed it so quickly we had to pay 20%, otherwise it would have been shipped for just $30} Well that was just too much for us right now and Steve asked his boss if there was anything else we could do. He said not to worry...he would call "Dave" and it would disappear! We picked it up today for $0! Now I get to stab him twice a day.
So things are falling into place. I could really do without any more obstacles as they are really wearing us down. I have to admit that I continue to struggle with wondering just what on earth are we doing. It's hard to see clearly when so much is going on all around me. Your continued prayers for peace and clarity are so needed and valued! Thank You!!
Monday, November 17, 2008
One down, a million more to go!
I said I wasn't worried, and I was right. The insurance did not even flinch at covering the cost of the $800 prescription. Now I can go down to my local Walgreens and pick up the medicine and starting Wednesday morning I get to inject Steve twice a day in the belly. He's thrilled.
We spent about 18 hours in the ER over the weekend. Actually Steve's breathing was great. He's having the classic signs of gall bladder attack. His labs were good but the ultrasound suggested more tests as it did look suspicious. After the CT scan the doctor came in and released Steve as they did not find anything on the test. He was told to see his doctor Monday for follow up to try and figure out what is causing the pain. He did suggest maybe an ulcer. The doctor said he {the doc} would have one if he had been through everything Steve had and is now facing a tracheostomy.
But here is the funny thing. You know you have to laugh. Steve always asks for copies of everything. He even has all the CD's of his scans and x-rays. I have no idea what he wants with those but if he feels he needs them then ok. I was reading the CT report and everything was looking ok and then I got to this: "visualized a normal appendix". I read that again and then showed Steve. We looked at each other and went "huh". I was there when he had that appendix removed 3 years ago. I'm pretty sure they did take it out. There was a pathology report after all.
So this leaves us to suspect one of three things. They looked at the wrong CT scan, he re-grew an appendix or there is something there that should not be there. We've been calling him "Lizard Daddy". Don't lizards re-grow tails? Steve's doctor is making phone calls today to try and figure it all out.
All things considered Steve is doing ok. He is in pain but he did go to work today. Apparently there is a big inspection going on and it is keeping him very busy and helps take his mind off the pain. The ER doctor was very re-assuring that this is most likely something that can wait until after the surgery, if he can stand it. They did not send him home with anymore pain meds because we already have them. And plenty of them.
If you don't mind, however please pray for his pain and nausea. He has barely eaten in two weeks and when he does he is in serious pain for a long time. He's now just working and sleeping. That's ok if we know he's going to get better!
We spent about 18 hours in the ER over the weekend. Actually Steve's breathing was great. He's having the classic signs of gall bladder attack. His labs were good but the ultrasound suggested more tests as it did look suspicious. After the CT scan the doctor came in and released Steve as they did not find anything on the test. He was told to see his doctor Monday for follow up to try and figure out what is causing the pain. He did suggest maybe an ulcer. The doctor said he {the doc} would have one if he had been through everything Steve had and is now facing a tracheostomy.
But here is the funny thing. You know you have to laugh. Steve always asks for copies of everything. He even has all the CD's of his scans and x-rays. I have no idea what he wants with those but if he feels he needs them then ok. I was reading the CT report and everything was looking ok and then I got to this: "visualized a normal appendix". I read that again and then showed Steve. We looked at each other and went "huh". I was there when he had that appendix removed 3 years ago. I'm pretty sure they did take it out. There was a pathology report after all.
So this leaves us to suspect one of three things. They looked at the wrong CT scan, he re-grew an appendix or there is something there that should not be there. We've been calling him "Lizard Daddy". Don't lizards re-grow tails? Steve's doctor is making phone calls today to try and figure it all out.
All things considered Steve is doing ok. He is in pain but he did go to work today. Apparently there is a big inspection going on and it is keeping him very busy and helps take his mind off the pain. The ER doctor was very re-assuring that this is most likely something that can wait until after the surgery, if he can stand it. They did not send him home with anymore pain meds because we already have them. And plenty of them.
If you don't mind, however please pray for his pain and nausea. He has barely eaten in two weeks and when he does he is in serious pain for a long time. He's now just working and sleeping. That's ok if we know he's going to get better!
Friday, November 14, 2008
The Half-Million Dollar Man aka the bionic pinkie
Just figuring in my head I would have to say that since January of this year the medical bills have come very close, if not actually over 500,000. The one time in ICU in February was over 50,000. He's been hospitalized 14 times total. Four ambulance rides. Numerous CT scans, surgical biopsy, x-rays, procedures, lab tests and enough medicines to supply a pharmacy of a small third world country. I figure that's enough for a bionic pinkie.
So today we were informed that the medicine Steve needs to have for 5 days before surgery is not covered. The price tag is $800. This medicine, Lovenox is an injectible blood thinner that he must have in place of the coumadin. Both drugs work differently, the coumadin could cause him to bleed too much during surgery.
If he cannot get the Lovenox the surgery gets canceled. If the surgery gets canceled the likelihood is high he will return to the ER again and again and again and again. He has only been released from the ER once, only to return an hour later and be admitted to the ICU. When I spoke with his doctor yesterday about getting the prescription called in she did say that sometimes insurance does not like to pay. She called it in early so she/we have time to work it out with them. Steve also has a call in to the HR guy at work. I would hope that an appeal to common sense would have them see that covering this medicine would be very cost effective in the long run. I'm not worried.
It's kind of interesting that there have been numerous obstacles to making it to the surgery that have come up this week. I'm not sure what it's all about but I have to trust that if this is what we are supposed to be doing God is going to make a way and it will all work out.
Steve went back to work on Tuesday and so far he's doing ok. Not great, but ok. He really needed to be there and get back into routine. Emotions can also play a role in vocal cord dysfunction and being home worrying about what was happening at his job has not helped. He comes home very tired but definitely in good spirits. He does not fear for his job as much as he was. He says they pretty much weren't doing it and are very relieved to have him back. He will be off the week of surgery but the doctors said if all goes as expected there is no reason he cannot return the following Monday.
So today we were informed that the medicine Steve needs to have for 5 days before surgery is not covered. The price tag is $800. This medicine, Lovenox is an injectible blood thinner that he must have in place of the coumadin. Both drugs work differently, the coumadin could cause him to bleed too much during surgery.
If he cannot get the Lovenox the surgery gets canceled. If the surgery gets canceled the likelihood is high he will return to the ER again and again and again and again. He has only been released from the ER once, only to return an hour later and be admitted to the ICU. When I spoke with his doctor yesterday about getting the prescription called in she did say that sometimes insurance does not like to pay. She called it in early so she/we have time to work it out with them. Steve also has a call in to the HR guy at work. I would hope that an appeal to common sense would have them see that covering this medicine would be very cost effective in the long run. I'm not worried.
It's kind of interesting that there have been numerous obstacles to making it to the surgery that have come up this week. I'm not sure what it's all about but I have to trust that if this is what we are supposed to be doing God is going to make a way and it will all work out.
Steve went back to work on Tuesday and so far he's doing ok. Not great, but ok. He really needed to be there and get back into routine. Emotions can also play a role in vocal cord dysfunction and being home worrying about what was happening at his job has not helped. He comes home very tired but definitely in good spirits. He does not fear for his job as much as he was. He says they pretty much weren't doing it and are very relieved to have him back. He will be off the week of surgery but the doctors said if all goes as expected there is no reason he cannot return the following Monday.
Monday, November 10, 2008
A Very Long Day at Stanford
Before I give the details of our Stanford visit today I'd like to ask a question. Can somebody clue me in to where the off button is for nearly 10 year old little girls who like to talk non-stop? We really enjoyed having Laryssa accompany us today but good grief, the kid didn't quit talking once!
The appointments went well today. First we saw the ENT {ear, nose and throat} department. We had a million questions to answer and then asked a million ourselves.
The surgery to do the tracheotomy is actually pretty simple and very low risk {For future reference: the procedure is called tracheotomy and what is in his throat/trachea is called a tracheostomy} While he is scheduled to be in the hospital 3-5 days if all goes well his stay can be shorter. The main reason to stay is to make sure he is stable after anesthesia and to teach him how to maintain his tracheostomy. Pain should be minimal, it's all about getting used to a new way of breathing. Since this department is where a lot of people travel to for head and neck surgeries they are very experienced at what they do and they are good at it.
Then we went to the anesthesia department for more questions and tests. Blood work, blood pressure, EKG...the whole shabang. We have to see a cardiologist here in town tomorrow to get clearance for surgery because of the blood clots in his lungs. While it is generally not ideal to do surgery so soon after having PE's {pulmonary embolisms} this is a warranted surgery where the benefits definitely outweigh the risks.
Steve will only need to use the tracheostomy while he is having an upper airway attack. I have done a lot more research and it seems so very clear that what the ENT doc said is what Steve has been dealing with all these months. No deadly lung disease. And it all seems to be traceable back to that knee surgery in January. While he has had the acid reflux longer than that the injury to his vocal cords made the situation worse and the blood clots, whether there since January or more recent have complicated everything. I found a PDF page that explains thing really well.
Steve is very nervous and frightened. I don't blame him. One thing that is a concern is that his voice may not be the same. He will be able to talk but they said it might be different because it will not be the same airflow. We just will not know until he heals. I have found some other sites where people do talk about this and some do say they have a bit of a froggy voice while others say there was no change at all.
So surgery is scheduled for November 24th at 12:30. I will try to make arrangements to stay there that night and return the next day. Please pray for: Steve's fear and anxiety, a safe surgery and pain free recovery, arrangements for me to be able to stay and the kids at home cared for, no voice loss and most of all...effortless breathing.
Saturday, November 8, 2008
It has bugged me for a while....
Used to be, back in the "old days" the Christmas stuff didn't go up until the day after Thanksgiving. Now while you are trying to recover from the diabetic coma from the trick-or-treating the night before you are awakened by "Jingle Bells"!
Without going into great detail my childhood does not hold many happy memories. Holidays were not looked forward to. Yes I got presents. Too many actually. But it wasn't about love. That's all I'll say for now.
So the "baggage" of Christmas to me has been my need to overspend and shower my kids with way too much "stuff". It was all I knew and it was what I thought I had to do to show them I loved them. Funny thing is I know my kids know they are loved many times over than I did as a kid.
And speaking of kids may I share that I have some of the most awesome ones that ever existed?! You think yours are great too? Well ok, but mine are pretty cool.
They know Christmas will be "small" this year and they have toned down the yearly begging and pleading that usually starts around this time. And for the first time in years I am actually getting into the spirit. My head is spinning with ideas {wait till you see the Christmas card I have planned!} and I'm looking forward to it. I actually wanted to change the blog to a Christmas theme but I'll wait until after Thanksgiving to give those who aren't quite in the spirit a little time to adjust.
But if you are in the mood to hear some really good and worshipful Christmas music go here and have your speakers on. The music player is up in the right hand corner. "I Heard The Bells On Christmas Day" is stunning. I can't wait to blast it while baking cookies and making ornaments. No Bah Humbug versions this year!
Merry Christmas. Remember He is the Reason for the Season!
Without going into great detail my childhood does not hold many happy memories. Holidays were not looked forward to. Yes I got presents. Too many actually. But it wasn't about love. That's all I'll say for now.
So the "baggage" of Christmas to me has been my need to overspend and shower my kids with way too much "stuff". It was all I knew and it was what I thought I had to do to show them I loved them. Funny thing is I know my kids know they are loved many times over than I did as a kid.
And speaking of kids may I share that I have some of the most awesome ones that ever existed?! You think yours are great too? Well ok, but mine are pretty cool.
They know Christmas will be "small" this year and they have toned down the yearly begging and pleading that usually starts around this time. And for the first time in years I am actually getting into the spirit. My head is spinning with ideas {wait till you see the Christmas card I have planned!} and I'm looking forward to it. I actually wanted to change the blog to a Christmas theme but I'll wait until after Thanksgiving to give those who aren't quite in the spirit a little time to adjust.
But if you are in the mood to hear some really good and worshipful Christmas music go here and have your speakers on. The music player is up in the right hand corner. "I Heard The Bells On Christmas Day" is stunning. I can't wait to blast it while baking cookies and making ornaments. No Bah Humbug versions this year!
Merry Christmas. Remember He is the Reason for the Season!
Friday, November 7, 2008
Thursday, November 6, 2008
Happy Thansgiving to us.
Just as we were leaving to see Steve's primary doctor this morning Stanford called. Oh...I haven't told you. We go to Stanford on Monday morning for pre-surgery consult. Surgery was scheduled for Friday November 21. Well they called this morning to re-schedule because the doctor has a conflict that day. So I ask her just how long will we need to be at the hospital that day {I didn't ask when they called earlier because...well...I have a lot on my mind these days!}. He will be in the hospital for 3 to 5 days!
Take a look at your calendar. It's Thanksgiving week. {and that Wednesday happens to be Laryssa's 10th birthday} *sigh*
Steve called back and tried to use his charming personality and see if they could bump it up a little but no dice. And the next available date is well into December.
It's not like we will be devastated to miss Thanksgiving but it just adds another thing to the whole picture of a really rough year. I have no idea what we will do, or what the kids will do. I definitely can't stay there all those days but it won't feel right to have turkey day without Steve here either.
So we went to his doctor appointment. She didn't feel comfortable clearing him for the surgery without seeing a cardiologist first, she is trying to get someone to see him tomorrow. But she did give him a release for work...at his own pace. I think this will do a world of good for Steve to be able to go back for a little while and feel useful again {not like he isn't useful around here because he is!}. He went down there yesterday to visit and is just itching to get back.
Then after the primary doc we went over to see the surgeon who did the biopsy in September. He was visibly horrified that we are doing a tracheostomy. We're horrified too but can't see an alternative. He admitted that he didn't know the entire history and could understand our feelings of desperation. I actually appreciated his honesty and he was very humble. He asked if we would consider seeing a general surgeon {he said "I'm just a little ole thoracic surgeon, LOL!} and see if he would do the fundoplication {the stomach surgery to stop the acid reflux}. We said of course and he is trying to get him to see us tomorrow.
While it would be nice to be able to have the surgery sooner than later I still question if Steve is strong enough to handle it and the stress could also aggravate the vocal cord issue so he would still have the breathing difficulties. It's so hard to know what to do!
And if that was not enough Steve has a nodule on his adrenal gland that the surgeon says may be another carcinoid tumor so he needs to see an adrenal specialist. He also needs to see a hematologist because of the blood clots.
While we were walking out to the car Steve asked what happened to the good old days when you had one doctor who did everything. I said "like when they had Doc Baker in Walnut Grove and he delivered the babies and buried the old folk and got paid with chickens?" Well Ma & Pa still had to go to Mankato to see a special doctor when Doc Baker couldn't figure out what was wrong with Baby Charles Jr. {I left out the part where he died anyway!}
We aren't making any decisions right now. If we can get into the surgeon we will go from there. We are still going to go to Stanford on Monday and explore all the options we have. Prayer is, as always much appreciated. And opinions and advice are welcome too!
And Bruno continues to do well. He did get sick all over our bed at 3am so I am limiting his intake today and giving him boiled rice and chicken, which he loves.
*
Take a look at your calendar. It's Thanksgiving week. {and that Wednesday happens to be Laryssa's 10th birthday} *sigh*
Steve called back and tried to use his charming personality and see if they could bump it up a little but no dice. And the next available date is well into December.
It's not like we will be devastated to miss Thanksgiving but it just adds another thing to the whole picture of a really rough year. I have no idea what we will do, or what the kids will do. I definitely can't stay there all those days but it won't feel right to have turkey day without Steve here either.
So we went to his doctor appointment. She didn't feel comfortable clearing him for the surgery without seeing a cardiologist first, she is trying to get someone to see him tomorrow. But she did give him a release for work...at his own pace. I think this will do a world of good for Steve to be able to go back for a little while and feel useful again {not like he isn't useful around here because he is!}. He went down there yesterday to visit and is just itching to get back.
Then after the primary doc we went over to see the surgeon who did the biopsy in September. He was visibly horrified that we are doing a tracheostomy. We're horrified too but can't see an alternative. He admitted that he didn't know the entire history and could understand our feelings of desperation. I actually appreciated his honesty and he was very humble. He asked if we would consider seeing a general surgeon {he said "I'm just a little ole thoracic surgeon, LOL!} and see if he would do the fundoplication {the stomach surgery to stop the acid reflux}. We said of course and he is trying to get him to see us tomorrow.
While it would be nice to be able to have the surgery sooner than later I still question if Steve is strong enough to handle it and the stress could also aggravate the vocal cord issue so he would still have the breathing difficulties. It's so hard to know what to do!
And if that was not enough Steve has a nodule on his adrenal gland that the surgeon says may be another carcinoid tumor so he needs to see an adrenal specialist. He also needs to see a hematologist because of the blood clots.
While we were walking out to the car Steve asked what happened to the good old days when you had one doctor who did everything. I said "like when they had Doc Baker in Walnut Grove and he delivered the babies and buried the old folk and got paid with chickens?" Well Ma & Pa still had to go to Mankato to see a special doctor when Doc Baker couldn't figure out what was wrong with Baby Charles Jr. {I left out the part where he died anyway!}
We aren't making any decisions right now. If we can get into the surgeon we will go from there. We are still going to go to Stanford on Monday and explore all the options we have. Prayer is, as always much appreciated. And opinions and advice are welcome too!
And Bruno continues to do well. He did get sick all over our bed at 3am so I am limiting his intake today and giving him boiled rice and chicken, which he loves.
*
Tuesday, November 4, 2008
A new day.
I've been sitting here glued to the TV watching the election results. Obama just finished his acceptance speech and all I can say is "wow". He wasn't my choice, for many reasons but we do live in a democracy and he was fairly elected. I do have to say what he had to say was inspiring. I truly hope he lives up to the promises he has made.
I agree with him when he said "If there is anyone out there who still doubts that America is a place where all things are possible, who still wonders if the dream of our founders is alive in our time, who still questions the power of our democracy, tonight is your answer". How so very true!
This has been going around in emails for a few days and it says all that really matters:
10 top predictions no matter who wins the election!!
1. The Bible will still have all the answers we need.
2. Prayer will still work.
3. The Holy Spirit will still move.
4. God will still enjoy the praises of His people.
5. There will still be God-anointed preaching.
6. There will still be singing to the glory of God.
7. God will still pour out blessings upon His people.
8. There will still be room at the Cross.
10. Jesus will still save the lost when they come to Him.
and God approves this message!
ISN'T IT GREAT TO KNOW WHO IS REALLY IN CHARGE?
So 2009 is going be very different for many reasons. I pray it is all for good. And I pray it is very different for my family as well!
PS I want to publicly thank my son Jason for making me go vote. After a not so very good day I just threw in the towel and wasn't intending to go. He was so excited about voting for the first time in his life he dragged me out at 7:45! I'm glad he did and I'm very proud of him!
*
Roller Coaster
Bruno is home. He is doing great and very happy to be home.
Two hours later Steve was re-admitted to the hospital.
I've lost track... is this number 14 or 15? *sigh*
Two hours later Steve was re-admitted to the hospital.
I've lost track... is this number 14 or 15? *sigh*
Monday, November 3, 2008
Homecoming!!
Sunday, November 2, 2008
Gloomy Day
Bruno doesn't get to come home today. He is vomiting again {but no diarrhea..that is great!}. They think it may be due to worms so they are going to deal with that today. He needs to be able to take his medicines by mouth before he can come home. We are trying to be patient.
Steve is having a hard time. I had to take him home last night in the middle of church and he hasn't really improved. I know he'll be ok, it's just hard to see him like this.
But....
God is still on the throne and He is always in charge.
Steve is having a hard time. I had to take him home last night in the middle of church and he hasn't really improved. I know he'll be ok, it's just hard to see him like this.
But....
God is still on the throne and He is always in charge.
Saturday, November 1, 2008
God in the small things.
Remember my first post on this blog? I said I was going to remember God in all the details no matter how small. All things considered when you look at all that has been happening here at the Thomas zoo a sick puppy might seem small to some. But to me it was big. If he died I would have gotten over it, the kids would have moved on, Libby {our little Jack Russel who adores him} and the cats would have forgotten. But my heart would break, even if just for a little while.
Thursday was a sad day. I was convinced Bruno was dying. He actually was. I stood in the shower with the water running so no one could hear me cry. With everything that has gone on these past months I don't think I have ever really "questioned" God. Maybe it was my Grandmother instilling in me as a very young child that you don't ever question God. Well that day, in the shower, I cried out and said "Jesus WHY"??!! He didn't yell back and he wasn't mad that I dared question. I felt His love and I felt Him say "after everything that has happened can't you trust me, even in this"? Oh.
It wasn't about a puppy. It was about me giving EVERYTHING to HIM. I'd been telling my kids and my friends for days to please pray for Bruno, but I have to admit that I really wasn't. I didn't trust Him to make it ok. Why should God be bothered with such an insignificant thing. Then I went to see the puppy and it was clear to me no one there had any power to make him better and he truly was in Gods hands. I prayed. And I prayed. And then I prayed some more. And you know what? God came through!
I don't really know completely what this is teaching me. All I can say is that I am so thankful right now that He loves me so much and he keeps putting up with me the way He does! Even over a silly little slobbery puppy!
Today I visited Bruno and he RAN to the door of the cage and when I picked him up he licked every inch of my face and neck! His tail was wagging so hard he was nearly airborne! And I bawled like a baby! He's getting sprung tomorrow. He can resume his underwear toilet paper shoe eating ways and I won't complain one bit!
Bruno Update
The vet called this morning and said Bruno is "PERKY"!! He is much more alert and peeing. No more vomit, no more diarrhea. They offered him some food but he only took one bite and refused any more. He is a bit of a finicky eater normally, he prefers underwear and shoes!
In case you've been wondering he is at Waterhouse Animal Hospital. They are the most wonderful people there and Bruno could not be in better hands!
Thank you all for your prayers. It means so much to us!
In case you've been wondering he is at Waterhouse Animal Hospital. They are the most wonderful people there and Bruno could not be in better hands!
Thank you all for your prayers. It means so much to us!
Subscribe to:
Posts (Atom)