How Many Kings

HOME!

He arrived home around 7:30 this evening. I told you prayer works.

Home for Christmas

No time for details right now. Steve has been in the hospital since Saturday. It's not looking like he will be home in time for Christmas. But I know prayer works so would you please be praying? Thank you!

{and Paul & Edith, if you read this I have been trying to call you. My phone is not cooperating today so I will keep trying!}

When I was a kid...

They didn't have VCR's or DVR's. I had to wait an entire year to see this again. And it was a big event for me! My kids think I'm weird.

The God who spoke is speaking still

I'm taking a break from posting Steve updates for a while. He spent another night in the hospital but came out doing great. God is answering prayers and I just need to focus on that. I know you all are praying regardless of where he is and how he is doing and that is all that matters!

Setback?

I guess they are bound to happen. Not really sure what to think about it. The appointment with Steve's doctor on Thursday wen really well. She didn't want to discontinue the oxygen therapy until we were sure he was getting enough. So last night he wore an O2 monitor on his finger while he slept. It never went above 91 and usually hung around 87-89. This is not good.

While he is awake his O2 couldn't be better. But during sleep it takes a nosedive. I have no idea what this means but there is an easy fix. Oxygen. From everything I have read oxygen therapy saves and extends your life. So if that's what he's going to need then that is what we will do. We just have to figure out how to pay for it. The insurance people are starting to be a little difficult but I know it will all work out. We actually found out yesterday that a local company supplies for trachs and I met the manager and I have a feeling they will be very easy to work with. Logistics, *sigh*

All things considered Steve continues to feel good. He is working hard at catching up at work and has adjusted really well to his new way of breathing. For the most part we don't even notice it and he says it's the same at work. People stare occasionally but he doesn't care...he can breathe!

Oh, and the cats came back. Just like I thought Mozzarella tried to sneak back like nothing happened. He missed his appointment for Friday but I will get that cat neutered, even if I have to do it myself!

The Thomas Zoo

Two of our cats have gone missing.

We haven't seen Mozzarella since last night. We have a feeling Stinky and Cheese told him he had an appointment to be neutered and his life as he knows it was about to be over. Stinky denies this {he doesn't care about much since his fateful day} but Cheese looks guilty.

Gracie has not been seen either. I have a feeling this is because we had to put away the food last night in preparation for Mozzie's "surgery". You do not mess with Gracie's food.

The dogs are clueless.

The food is back out, I'm sure Gracie will reappear once she feels satisfied her protest was noticed. Mozzie will wander back in as if nothing has happened and then get tossed in the garage. He has another appointment tomorrow.

Yes...the Thomas Zoo is returning to "normal"!

Hanging in there

Steve continues to do well. We actually just passed an entire week without seeing a doctor of any kind! WOO HOO! Not that we don't like them but we'd rather spend our time doing other things!

We do have appointments today and tomorrow but those are follow-ups so we don't expect anything out of the ordinary to happen.

Steve still says he feels better than he has in a very long time. He seems so be adjusting to the trach in a very unusually quick and problem free way. Still no suctioning and no pain, in fact the soreness is pretty much all gone. One thing he has had to get used to is the fact that there is nothing there to warm the air when he breathes. When you breathe through your nose or mouth the air is warmed before is hits your lungs. Gods wonderful design! But when you breathe through a plastic tube there is nothing warming that air. Makes for a bad chest ache! So he tries to remember to keep it tucked in his shirt. I did get him some bandannas yesterday so he's going to try wrapping those around his neck and see if that helps.

So all things considered the Thomas Zoo is doing well. We kind of feel hungover and it's strange to not be in constant crisis mode, or waiting for the other show to drop. I do admit that night time is a little weird and I have to stop myself from checking if he is alive. He is so still and so quiet. I am now remembering when I feel that fear that God is faithful and I have to trust. It was funny this morning. I guess a pillow occluded his trach and he let out a little snort, hadn't heard that since the night before surgery....and I was thankful! {not that he snorted...thankful he doesn't snort anymore!}

When did he pass away?

Both of the oxygen companies showed up at my door at the same time. We had equipment from two different places, never understood why.

So they are getting their paperwork together and one of them asks "when did he pass away"?

I kind of had to choke back a laugh and then said "he didn't, he just went to work"!

It was one of those moments when you really wished you had a camera to catch the looks on their faces.

I have always believed that God has the funniest sense of humor. I know He is getting a kick out of all of this. I sure am!

Tomorrow

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.

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!

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!

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.

This is hard.

It's really, really, really hard.

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!!!}

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!!

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!}

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.

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.

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!!

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!

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.

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.

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!

This just says it all!

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.
*

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.

9. Jesus will still love you.

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*

Homecoming!!

The vet called. Bruno is eating, peeing and pooping like he should. She said he is also HOWLING! He would like to come home now. We go to get him at 5 tonight. We can't wait!

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.

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!

That was fast!

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?

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.

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!

It was heartbreaking to see Bruno like this. He recognized Jason and I right away and walked over toward us. He is so sick, the vet gives him a 50/50 chance.

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.

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!

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.

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!

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!

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.

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.

"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........

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!

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!

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.

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.

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.

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.

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.}

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.

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.

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.

Refine Me

I come into this place
Burning to receive your peace
I come with my own chains
From wars I've fought for my own selfish gain

You're my God and my Father
I've accepted your Son
But my soul feels so empty now
What have I become?

Lord, come with your fire,
Burn my desires; refine me
Lord, my will has deceived me
Please come and free me
Refine me

My heart can't see
When I only look at me
My soul can't hear
When I only think of my own fears

They are gone in a moment
You're forever the same
Why did I look away from You
How can I speak Your name?

Lord, come with Your fire,
Burn my desires; refine me
Lord, my will has deceived me
Please come and free me
Come rescue this child
For I long to be reconciled to You

It's all I can do
To give my heart and soul to You
And pray, and pray, oh I will pray

Lord, come with Your fire,
Burn my desires; refine me
Lord, my will has deceived me
Please come and free me
Come rescue this child
For I long to be reconciled to You

Refine me, refine me
Refine me, refine me

A Very Long day

Steve is now settled in for a week of pulmonary rehab. He seems ok, maybe a little nervous. Just walking to and from the car felt like a million mile trek to him. My day started at 6 am and it's now past midnight. I feel like I have been beaten and bruised. I really want our life back where strangers are not allowed to intrude and treat us like we are 5 year olds. I'm tired of people telling us what to do like we have no brains in our heads. I'm verging on becoming very impolite if it continues.

I've cried a lot today.

I'm really truly sorry for being such a complainer. I try to be happy, I try to remember God is in all the details. There are good days. But then there are just rotten days like today.

Maybe tomorrow will look brighter.

I think we all need a little smile! {Go ahead and laugh. You know you want to!}

Saw this posted somewhere else today and could not resist sharing. Enjoy! {I really think Chris needs to add this to the worship list}

Really Scared

I'm feeling the walls closing in around me. My usual response to this is to hide, I'm trying not to do that but I am.

Steve is still in ICU. The main issue right now is pain. He is still struggling respiratory wise but he's as stable as he's probably going to get, at least for now. Apparently he is having complications from the biopsy and now has pleurisy. They are starting him on morphine today. Once he's stable enough they are sending him to inpatient rehab. They can help him with his lung issues and pain management so he can come home.

This is a whole new game for us. He is going to have to go on disability, for how long I have no idea. We are depleted. Steve has struggled these last eight months to work and keep our heads above water but now we're sinking. I was trying so hard to be positive and make it work for so long but right now I'm staring at a 48 hour PG&E notice and the same with the water bill. Steve's dad helped with the house payment this month but I don't know what we'll do next month. The church has been wonderful with food, that has been such a blessing. I'm not even opening the medical bills right now.

I don't know how much more I can do. I know I have to but I'm just really scared. I guess I need to sit down and figure this out.

Normal.

I ran into some old friends Sunday, in Wal-Mart of all places. Hadn't seen them in years, probably won't for several more. We exchanged pleasantries and made small talk. They asked how Steve was and I said he's doing great. Yes I lied. Just for once in eight months I wanted to feel normal, even if it was only for 5 seconds.

After a very long and confusing and frustrating and worrisome day yesterday Steve is back in ICU. He's stable now and resting. I'll post more details later. Maybe.

The Valley of Baca

Not much change today. Steve just has no energy or strength whatsoever. I know this would be expected of someone so seriously ill but it's very hard not to worry. We decided we're calling UCSF on the morning to see how quickly they can get him in. I know we are now with a good doctor here but he still did say he has no answers. We took off his fentanyl patch and he's not taking any pain meds, his choice. He thinks the narcotics are what's wiping him out. We'll see.

So speaking of hearing God. Something interesting has been happening these past couple of weeks. I've read Psalm 84 before but I never really paid attention to the particular reference to the Valley of Baca and never heard any teaching on it. I just assumed it was a place on the map. Last night at my churches 20th anniversary party that was the one passage my pastor read. Again "The Valley of Baca" stood out to me. God was trying to tell me something. I meant to look it up last night but was so tired I just collapsed in bed. Well this morning I got in the car and turned on the radio and the first song playing was "Better is One Day". That song is written using the 84th psalm. OK GOD...I hear you!! {I don't think I have ever heard that song played on the radio}

I haven't had a lot of time to study but what I've found so far is giving me comfort. I'll come back and post after I learn a little more about it.

Please pray for my friend Beth. Her mom is having more surgery today and she is very worried. Thank you!

Not a good day today

Steve's struggling. He's regretting checking out last night. Please pray for him. And me. I don't know if I can handle another ER trip right now.

GOD IS STILL ON THE THRONE!

Today was the day we have been waiting for all week. Last Friday I was given the news that my husband had a disease that kills within 3 years, someone in his current condition only months. The biopsy was only to confirm which variety of the disease he had, like it mattered.

Today they doctor came and told us his biopsy was normal! He was very confident that while Steve has been very ill for months now he does not have some deadly disease waiting to kill him. My belief is that whatever that doctor saw on all of the test results last week God healed. He does that sometimes.

I hear Him now.

We still need prayer. Steve is still very ill and they do not know why. There are theories and we are trying some things and he will be followed closely, we may still make that trip to San Fransisco. He came home tonight, my husband is very persuasive with those doctors. His feet immediately swelled up and his pain is intense. I am exhausted.

I probably will not post for a few days, unless something significant happens. We need to regroup and try and rest. I'm sure you all can imagine everything around here is in chaos and I will be spending a lot of time getting my husband to rest. For now we are rejoicing in the news today and hoping for continued healing. We believe!!

Snow Day

Where I live my kids have no clue what it means to have no school because of snow. Today we're pretending. They have been so stressed and yesterday was not a good day when they were dropped off so they're staying home. Of course I expect them to clean...we'll see how that goes!

On my way to the hospital now. Please pray we get the results today and we have answers.

It's not easy being green.

Today was better. Steve is a bit more "comfortable" and seems to be breathing a bit better. Of course every time the RT {respiratory therapy} people come in they say he has either diminished or no breath sounds. Yesterday the RT guy brought in a student and she was trying to listen but of course heard nothing. So my very helpful husband took a very deep and painful breath and coughed a little and started wheezing. He told her to take a listen now. She was fascinated. Wasn't that nice of him? Sheesh!


Tonight Steve coughed up something, I'll spare my readers the details in case you're having a snack. He started to feel his throat tighten and his voice changed. He sounds like Kermit the Frog. It's a little funny. They were giving him some breathing treatments to help with that when I left.

Oh, and He may not have an infection after all. It might be due to the steroids so they are backing off a little on them to see if the white cell count goes down. The biopsy results should come back tomorrow. Please pray they do and we have some answers.

Infection

I guess it was to be expected, right? Having a hard time hearing God's voice right now. I know it's there. Just can't hear it. Sorry to be so pathetic right now. Was it Mother Teresa that said "I know God will not give me anything I can't handle. I just wish that He didn't trust me so much"?