Saturday, September 27, 2008
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'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.
Friday, September 26, 2008
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}
Wednesday, September 24, 2008
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.
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.
Tuesday, September 23, 2008
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.
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.
Sunday, September 21, 2008
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!
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!
Saturday, September 20, 2008
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!!
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!!
Friday, September 19, 2008
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.
On my way to the hospital now. Please pray we get the results today and we have answers.
Thursday, September 18, 2008
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.
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"?
Terrible, horrible, no good, very bad day
Talk about adding insult to injury!!
The biopsy happened this morning. The procedure itself went well, afterward was not so good. Steve did not come out of anesthesia easily and when he did he was in horrible pain. They quickly gave him pain meds only to give him something else to reverse the narcotics when he became non responsive and not breathing. By the time he returned to his room he was in unbearable pain. He was left alone in his room to suffer like that. I immediately found his nurse and informed her this situation was unacceptable and something needed to be done now. She was reviewing his chart and said the only thing she was authorized to give was a small dose of fentanyl. Steve has been wearing a fentanyl patch so has already built a tolerance so I knew this would not help much. Obviously their concern was his breathing, I understand that and agree. But you cannot breathe anyway if you are in that kind of pain.
I told the nurse to give him the med and after that I wanted him moved back to the step down unit {they moved him to a telemetry room, quite far from the nurse and a higher patient/nurse ratio} and put back on the bi-pap and medicated! They said that if he has the pain meds he might have to be intubated...my response was "good, then he'll be getting oxygen and pain management! Yes I do get that being on a respirator is a very big deal but they just took him off one for surgery and they could put him back on one for what was looking to be a very serious situation.
At that point the nurse had the nurse manager come in and talk with us about our options while the nurse called the doctor. He did explain that where Steve was really was not much different from the step-down unit except in step-down it was 3-1 and telemetry it's 4-1 and her other 3 patients were stable. This felt ok so then we moved on to pain relief. Just then the nurse came back and said doctor put him back on his previous pain meds and she had in her hand a dose of fentanyl, dilaudid and percocet. Within minutes Steve was drifting off. He did start to go pretty deep and his oxygen levels were dropping. My agreed upon job was to sit there and wake him enough to remind him to take deep breaths. I had to do that a lot.
Somewhere around 3pm he was able to get a little more comfortable and stopped thinking he was about to die. He asked me at one point to go get all the kids so he could say goodbye. I'm glad I didn't listen to that request! They gave him about 10 pillows and we spent the next few hours adjusting and re-adjusting pillows, trying to get comfortable. By the time I left at 11:30 he was finally medicated enough that he was able to sleep and was breathing well. Oh..and no chest tube! No idea why as I did not get to speak to the surgeon. He has a large hole on the left side of his chest and two smaller ones on his back. His entire chest cavity hurts.
So we have probably a day and a half now to get word on the biopsy. I did research a little on the net today and learned that UCSF treats over 200 types of Interstitial Lung Disease. There is a chance the biopsy won't yield any answers and if that's the case it looks like UCSF is the place to go. We'll cross that bridge when/if we get there. Right now Steve just needs to recover from this current crisis and come home to his family who misses him fiercely.
The biopsy happened this morning. The procedure itself went well, afterward was not so good. Steve did not come out of anesthesia easily and when he did he was in horrible pain. They quickly gave him pain meds only to give him something else to reverse the narcotics when he became non responsive and not breathing. By the time he returned to his room he was in unbearable pain. He was left alone in his room to suffer like that. I immediately found his nurse and informed her this situation was unacceptable and something needed to be done now. She was reviewing his chart and said the only thing she was authorized to give was a small dose of fentanyl. Steve has been wearing a fentanyl patch so has already built a tolerance so I knew this would not help much. Obviously their concern was his breathing, I understand that and agree. But you cannot breathe anyway if you are in that kind of pain.
I told the nurse to give him the med and after that I wanted him moved back to the step down unit {they moved him to a telemetry room, quite far from the nurse and a higher patient/nurse ratio} and put back on the bi-pap and medicated! They said that if he has the pain meds he might have to be intubated...my response was "good, then he'll be getting oxygen and pain management! Yes I do get that being on a respirator is a very big deal but they just took him off one for surgery and they could put him back on one for what was looking to be a very serious situation.
At that point the nurse had the nurse manager come in and talk with us about our options while the nurse called the doctor. He did explain that where Steve was really was not much different from the step-down unit except in step-down it was 3-1 and telemetry it's 4-1 and her other 3 patients were stable. This felt ok so then we moved on to pain relief. Just then the nurse came back and said doctor put him back on his previous pain meds and she had in her hand a dose of fentanyl, dilaudid and percocet. Within minutes Steve was drifting off. He did start to go pretty deep and his oxygen levels were dropping. My agreed upon job was to sit there and wake him enough to remind him to take deep breaths. I had to do that a lot.
Somewhere around 3pm he was able to get a little more comfortable and stopped thinking he was about to die. He asked me at one point to go get all the kids so he could say goodbye. I'm glad I didn't listen to that request! They gave him about 10 pillows and we spent the next few hours adjusting and re-adjusting pillows, trying to get comfortable. By the time I left at 11:30 he was finally medicated enough that he was able to sleep and was breathing well. Oh..and no chest tube! No idea why as I did not get to speak to the surgeon. He has a large hole on the left side of his chest and two smaller ones on his back. His entire chest cavity hurts.
So we have probably a day and a half now to get word on the biopsy. I did research a little on the net today and learned that UCSF treats over 200 types of Interstitial Lung Disease. There is a chance the biopsy won't yield any answers and if that's the case it looks like UCSF is the place to go. We'll cross that bridge when/if we get there. Right now Steve just needs to recover from this current crisis and come home to his family who misses him fiercely.
Tuesday, September 16, 2008
To quote Laryssa Thomas, AWESOME!
That is my daughters newest favorite word. Sometimes I think she says it every other sentence. Today it's my new favorite word.
First of all there was no biopsy today. Apparently there was an emergency surgery so Steve got bumped back to 8am tomorrow. When they have you held captive they can do whatever they want! As frustrating as that is I do take this as good news in a way. I was very concerned about him undergoing this stress on his body while so very ill so the more time he has to heal the better I feel. I was told that the results should be back in 24-48 hours.
So I was able to meet with the doctors today and they were able to give me some answers to some questions I had. First of all they tell me that the thrush in Steve's throat and esophagus and is some of the worst they have seen. He is in a lot of discomfort from it right now so hopefully the medicine kicks in soon.
But the main question I had was concerning his heart. I have been so afraid these past few days that he was experiencing heart damage. One of the complications of the disease they think he has is right sided heart failure. A sign of that damage would be pitting edema and severe respiratory distress. By the time you reach this point you are either in or close to end-stage. Steve had both symptoms. The doctors told me today that his echocardiogram was normal!
He looked better today. His pain is still bad but he looked more alert and seemed to have less difficulty with his breathing. We even took a couple of walks around the floor. It was funny to see all the nurses and doctors standing there with huge smiles on their faces, so happy and surprised to see him up and moving. That doesn't happen much where he was at. It amazes me how many of them knew who he was. My husband makes quite an impression on people. He got the nurse aide, Adelle to promise to bring him homemade lumpia!
I have to say that today made a big difference for me. We still have a long way to go but I do really feel hope today. Jason even said "God's going to heal him". I love that kind of faith! A few days ago I could barely see him coming home from the hospital, now I definitely have no doubt he is coming home.
I'm really tired so I will update more later. I'll have to talk about the conversation with the sleep study clinic. "Mr. Thomas do you realize you have acute obstructive sleep apnea"? Steve, to me "did you know I have that"? Me "do you not realize I sleep {try!} in the same bed"?!
Oh...and he taught me how to play rummy. I think he cheated, he blamed it on the narcotics.
More later......
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11
First of all there was no biopsy today. Apparently there was an emergency surgery so Steve got bumped back to 8am tomorrow. When they have you held captive they can do whatever they want! As frustrating as that is I do take this as good news in a way. I was very concerned about him undergoing this stress on his body while so very ill so the more time he has to heal the better I feel. I was told that the results should be back in 24-48 hours.
So I was able to meet with the doctors today and they were able to give me some answers to some questions I had. First of all they tell me that the thrush in Steve's throat and esophagus and is some of the worst they have seen. He is in a lot of discomfort from it right now so hopefully the medicine kicks in soon.
But the main question I had was concerning his heart. I have been so afraid these past few days that he was experiencing heart damage. One of the complications of the disease they think he has is right sided heart failure. A sign of that damage would be pitting edema and severe respiratory distress. By the time you reach this point you are either in or close to end-stage. Steve had both symptoms. The doctors told me today that his echocardiogram was normal!
He looked better today. His pain is still bad but he looked more alert and seemed to have less difficulty with his breathing. We even took a couple of walks around the floor. It was funny to see all the nurses and doctors standing there with huge smiles on their faces, so happy and surprised to see him up and moving. That doesn't happen much where he was at. It amazes me how many of them knew who he was. My husband makes quite an impression on people. He got the nurse aide, Adelle to promise to bring him homemade lumpia!
I have to say that today made a big difference for me. We still have a long way to go but I do really feel hope today. Jason even said "God's going to heal him". I love that kind of faith! A few days ago I could barely see him coming home from the hospital, now I definitely have no doubt he is coming home.
I'm really tired so I will update more later. I'll have to talk about the conversation with the sleep study clinic. "Mr. Thomas do you realize you have acute obstructive sleep apnea"? Steve, to me "did you know I have that"? Me "do you not realize I sleep {try!} in the same bed"?!
Oh...and he taught me how to play rummy. I think he cheated, he blamed it on the narcotics.
More later......
"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." - Jeremiah 29:11
Monday, September 15, 2008
A very nice visit.
The bronchoscopy went very well. They did not even need to sedate him, just numbed his throat locally. The doctor says he saw nothing alarming, this was expected. What he did see was lots of thrush {yeast} which can be a side effect of steroid treatment. It was all the way down into his esophagus. He did say he didn't see much in his lungs but thrush can still be there without actually seeing it. This could explain the swallowing trouble and even breathing difficulty. He just has not recovered this time like he has in the past. They have started him on anti-fungal drugs.
So the biopsy is scheduled for tomorrow.
I took Charis for a visit. She always cheers him up and was very happy to see her. He looked good, his hair was washed and that always makes anyone feel better. He did get to walk around the nurses station using a walker. He said it was hard but he was glad to do it. His breathing is still labored and he tends to crash at night but today he is alive and I am thankful for that!
Where was God in this today?
*I reconnected with a long lost friend today. This may have never happened had it not been for this. It was nice to just let it all out, I knew she was the perfect one to let me do that.
*I am feeling the love and concern from all of my friends. I can actually say the prayers are felt. The cloud I have been walking under the past few days seem to be lifting....a little. Remember the other day when I said I wasn't feeling hope? It's back. Reality is still facing me square in the face but I don't just walk in this world and I believe God is the one in charge here...not the doctors.
*A dear friend reminded me of something today. You never take the first word on anything when it comes to your health. Always get a second and even third opinion. I think when this current crisis is over and Steve is well enough to travel {see...I told you the hope was back} we will still got to San Fransisco. Sure couldn't hurt! {the diagnoses they have given is Idiopathic Interstitial Pneumonia. It's not something you want to have.}
Prayer needs:
1. That Steve tolerates the biopsy tomorrow and doesn't have anesthesia complications.
2. My kids are struggling and it's showing. I got calls from teachers today and of course they were understanding when I explained the situation. But I don't want them falling so far behind they can't catch up.
3. I really need good, deep and restful sleep. Right now it's only coming in waves. I'm feeling ok but that is probably because I tend to function very well in crisis mode. The crash afterwards is ugly.
So the biopsy is scheduled for tomorrow.
I took Charis for a visit. She always cheers him up and was very happy to see her. He looked good, his hair was washed and that always makes anyone feel better. He did get to walk around the nurses station using a walker. He said it was hard but he was glad to do it. His breathing is still labored and he tends to crash at night but today he is alive and I am thankful for that!
Where was God in this today?
*I reconnected with a long lost friend today. This may have never happened had it not been for this. It was nice to just let it all out, I knew she was the perfect one to let me do that.
*I am feeling the love and concern from all of my friends. I can actually say the prayers are felt. The cloud I have been walking under the past few days seem to be lifting....a little. Remember the other day when I said I wasn't feeling hope? It's back. Reality is still facing me square in the face but I don't just walk in this world and I believe God is the one in charge here...not the doctors.
*A dear friend reminded me of something today. You never take the first word on anything when it comes to your health. Always get a second and even third opinion. I think when this current crisis is over and Steve is well enough to travel {see...I told you the hope was back} we will still got to San Fransisco. Sure couldn't hurt! {the diagnoses they have given is Idiopathic Interstitial Pneumonia. It's not something you want to have.}
Prayer needs:
1. That Steve tolerates the biopsy tomorrow and doesn't have anesthesia complications.
2. My kids are struggling and it's showing. I got calls from teachers today and of course they were understanding when I explained the situation. But I don't want them falling so far behind they can't catch up.
3. I really need good, deep and restful sleep. Right now it's only coming in waves. I'm feeling ok but that is probably because I tend to function very well in crisis mode. The crash afterwards is ugly.
Change of plans. Of course.
The three doctors got together and had a discussion. They are going to do the bronchoscopy today because they are concerned that it they do the thorocotomy his lung might collapse. If the bronch looks ok they will do the thorocotomy tomorrow. Hurry up and wait.
I'm on my way out the door now. Will update later.
PS Some people have asked if they can send cards or flowers. He cannot have flowers where he is but he would love cards. Steve is currently at:
Community Regional Medical Center
2823 Fresno St.
Fresno CA 93721
559-459-6000
{he gets moved around so a room number isn't reliable}
I'm on my way out the door now. Will update later.
PS Some people have asked if they can send cards or flowers. He cannot have flowers where he is but he would love cards. Steve is currently at:
Community Regional Medical Center
2823 Fresno St.
Fresno CA 93721
559-459-6000
{he gets moved around so a room number isn't reliable}
He may not be able to breathe but he still thinks he's funny.
Well this day started off with a bang.
The phone started to ring at 6 am. If you have a loved one in the hospital that is not a good way to be woken up! Also, if you have a loved one in the hospital don't ever leave their side.
The call was Steve telling me they moved him to a different room, same location just across the floor. Then he calls an hour later to say they came and took his breakfast away because they are taking him away for his "test". "What test"?? He said his bronchchchcoscopoctomyyyyyy. Yeah...he's drugged up! So I asked, "do you mean bronchoscopy"? "Yeah! That!". So I tell him they can't do that. He is scheduled for a surgical biopsy this afternoon that requires 2 hours under anesthesia and they have to sedate you heavily for a bronch. Hello??!! He is in the hospital for respiratory distress.
So I try to tell him to get his nurse on the phone but they have already started sedating him and he is flying higher than a kite. I hung up and called back for the nurse. Of course they have me on hold forever and I'm trying not to panic. She finally comes on the phone and has no idea what exactly they are doing but "it's ok honey, they will do his procedure and he will be just fine". That goes over real well with me. I know this is the hospital he needs to be in because the specialists will see him there but it is so hard for me because they just treat you so differently there. When I kept trying to get her to explain exactly what is going on it became real clear she didn't even have any idea why my husband was even there in the first place. I'm going to look funny all day now because of that bump on my forehead from banging it on the desk!
Finally the pulmo doc comes in {I think this was another one of those God moments} and he gets on the phone with me. He has no idea what is going on either, says he's going to get on the phone now. So I hang up and call radiology and ask to speak to the bronch nurse. He confirms that yes they are doing the test soon, it was scheduled by the other doctor as an outpatient. I explain the situation and tell him to cancel now...then his other phone rings and it's the doctor. I hang up to let them work this out while I sit here biting my nails down to the quick.
Twenty minutes later it's my husband on the phone. "Well everything is changed now. They are sending a guy down from San Fransisco and they are going to prep me for a lung transplant"! You could have heard a pin drop here. I tell him that's not funny. He thinks it is. I tell him you better be joking. He swears he isn't. There is silence for a moment and then he says "that was a good one, wasn't it? Took me a while to think it up being on these drugs". Does he realize I am in charge of his meds at home?
Everything is straightened out now. There is no need to do the bronchoscopy anyway since they are doing the thorocotomy {such big and scary words!}. He won't be double sedated and bee in further distress now. My heartbeat is now slowing down a little. Believe me when I say this isn't the first thing of this sort. Either they make you well or try to kill you.
And on top of that I have a plumbing emergency. Thankfully Jason's girlfriends step-dad is a plumber. And a really nice guy. Another God moment there.
I'll update when we know more about the surgery today.
The phone started to ring at 6 am. If you have a loved one in the hospital that is not a good way to be woken up! Also, if you have a loved one in the hospital don't ever leave their side.
The call was Steve telling me they moved him to a different room, same location just across the floor. Then he calls an hour later to say they came and took his breakfast away because they are taking him away for his "test". "What test"?? He said his bronchchchcoscopoctomyyyyyy. Yeah...he's drugged up! So I asked, "do you mean bronchoscopy"? "Yeah! That!". So I tell him they can't do that. He is scheduled for a surgical biopsy this afternoon that requires 2 hours under anesthesia and they have to sedate you heavily for a bronch. Hello??!! He is in the hospital for respiratory distress.
So I try to tell him to get his nurse on the phone but they have already started sedating him and he is flying higher than a kite. I hung up and called back for the nurse. Of course they have me on hold forever and I'm trying not to panic. She finally comes on the phone and has no idea what exactly they are doing but "it's ok honey, they will do his procedure and he will be just fine". That goes over real well with me. I know this is the hospital he needs to be in because the specialists will see him there but it is so hard for me because they just treat you so differently there. When I kept trying to get her to explain exactly what is going on it became real clear she didn't even have any idea why my husband was even there in the first place. I'm going to look funny all day now because of that bump on my forehead from banging it on the desk!
Finally the pulmo doc comes in {I think this was another one of those God moments} and he gets on the phone with me. He has no idea what is going on either, says he's going to get on the phone now. So I hang up and call radiology and ask to speak to the bronch nurse. He confirms that yes they are doing the test soon, it was scheduled by the other doctor as an outpatient. I explain the situation and tell him to cancel now...then his other phone rings and it's the doctor. I hang up to let them work this out while I sit here biting my nails down to the quick.
Twenty minutes later it's my husband on the phone. "Well everything is changed now. They are sending a guy down from San Fransisco and they are going to prep me for a lung transplant"! You could have heard a pin drop here. I tell him that's not funny. He thinks it is. I tell him you better be joking. He swears he isn't. There is silence for a moment and then he says "that was a good one, wasn't it? Took me a while to think it up being on these drugs". Does he realize I am in charge of his meds at home?
Everything is straightened out now. There is no need to do the bronchoscopy anyway since they are doing the thorocotomy {such big and scary words!}. He won't be double sedated and bee in further distress now. My heartbeat is now slowing down a little. Believe me when I say this isn't the first thing of this sort. Either they make you well or try to kill you.
And on top of that I have a plumbing emergency. Thankfully Jason's girlfriends step-dad is a plumber. And a really nice guy. Another God moment there.
I'll update when we know more about the surgery today.
Sunday, September 14, 2008
Hope Now
If everything comes down to love
Then just what am I afraid of
When I call out Your name
Something inside awakes in my soul
How quickly I forget I'm Yours
I'm not my own
I've been carried by You
All my life
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free
When my life is like a storm
Rising waters all I want is the shore
You say I'll be ok and
Make it through the rain
You are my shelter from the storm
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free
I'm not my own
I've been carried by You
All my life
Everything rides on hope now
Everything rides on faith somehow
When the world has broken me down
Your love sets me free
You've become my hearts desire
I will sing Your praises higher
Cause Your love sets me free
Your love sets me free
Your love sets me free
How Ironic
I tried to start this blog months ago and I could not think of a title so I chose Life. I have no idea why. My intentions at the time was to just have a happy little blog talking about my family and pets and just....Life. And here I am now fighting for one.
I'm not a person of "big" words and I don't really usually have hugely important things to say but I need to do this right now so I can process what is happening. My husband is seriously ill. If I believe what I read on the net...well I'm not going to put those words here and give them any power. I have seen miracles in my life, lots of them. I don't know why I'm struggling now to believe that I will see another. Right now I'm just sad. God is here with me, I know that. He has shown himself in so many little details over the past few days and then I forget when I see something else that frightens me. I need to remember them so I can hold on to them. So I'm going to keep record of it all here. It may not look all pretty and neatly packaged but that's ok, neither is Life.
Since Thursday:
* Drove up to the hospital dreading the parking situation at this particular hospital and was upset that I needed to get in there quickly. When I drove up a car was pulling out...in the very first parking spot by the entrance.
*Even though I got security called on me for my little tantrum in the waiting room {they told me to have a seat and they would let me know when he could have visitors, I don't think so!} I got in there pretty quickly which I'm told is not done.
*After all the ER trips Steve said to me THIS time was the best he was ever cared for. The nurse and staff were very open and honest and cooperative with us. He's right, that was unusual.
*Our friend Willie was able to use his pass and get in to see us. That was a comfort.
*My friends Paul and Edith came. Paul said it was unusual for him to be home that day. Having their presence, even if it was just in the waiting room was comforting.
*THIS hospital has Pepsi. {hey...gotta remember even the small details!}
*When they were transporting Steve to his room the transporters showed me where the back elevator is. I can get in without having to buzz the intercom and ask permission to actually see my own husband. Shhh.
* I had a very important question for the specialist that I really needed to know. I had been told he had fibrosis on his lungs. This is very bad. He told me he did not see any. I'm choosing to believe that it WAS there and God healed him of that. I'm going to admit I'm struggling with this one.
*Yesterday was Steve's birthday. Laryssa really wanted to see her daddy but I was worried she might be frightened to see how very ill he is this time. The nurse said they would let her visit him, which is a big deal in the intensive care environment. One of her best friends, Anne was praying and those prayers were answered. We spent 3 hours and had a wonderful visit. Steve was not even on oxygen the whole time and none of the alarms went off. She gave her daddy lots of hugs.
*Shortly after we left Steve crashed a little bit and they had to work hard to help him breathe better. He was trying to be brave for his daughter and paid a little for it. As a result he missed dinner and was very hungry. It was past visiting hours so I did not think I could bring him anything. Some dear friends took me out to dinner on the other side of town and as we were leaving I ran into the nurse manager from his floor! I asked her about bringing him food and she told me exactly what to do and say to get into his room!
*The hospital called someone in from home, on their day off to put in the much needed PICC line so now he can get his medicines like he should and will be so much more comfortable and not get stuck all the time.
*That I have so many friends who love us. It has been overwhelming to see all the friends we have supporting us.
I'm waiting on the big miracle. I'm waiting for them to tell me he is going to live. I'm trying to have faith. I'm ok with what God is going to do. I may be happy or I may be sad but this will not change the love I have for Him.
Prayer needs:
1. Tomorrow they are going to do a lung biopsy. Steve is afraid and I worry about the pain, he is already in so much and the pain meds are not covering it all. I worry about the anesthesia in his poor condition.
2. That I am able to accept the help that is being offered. This is a big deal for me and I'm struggling.
3. That everything falls into place so my kids get to where they need to be so I don't have to worry.
4. Steve's pain and breathing.
That's all for now, have to get things done here. I will try and update often. It helps to do this because sometimes it's hard to explain things over and over and over.
I'm not a person of "big" words and I don't really usually have hugely important things to say but I need to do this right now so I can process what is happening. My husband is seriously ill. If I believe what I read on the net...well I'm not going to put those words here and give them any power. I have seen miracles in my life, lots of them. I don't know why I'm struggling now to believe that I will see another. Right now I'm just sad. God is here with me, I know that. He has shown himself in so many little details over the past few days and then I forget when I see something else that frightens me. I need to remember them so I can hold on to them. So I'm going to keep record of it all here. It may not look all pretty and neatly packaged but that's ok, neither is Life.
Since Thursday:
* Drove up to the hospital dreading the parking situation at this particular hospital and was upset that I needed to get in there quickly. When I drove up a car was pulling out...in the very first parking spot by the entrance.
*Even though I got security called on me for my little tantrum in the waiting room {they told me to have a seat and they would let me know when he could have visitors, I don't think so!} I got in there pretty quickly which I'm told is not done.
*After all the ER trips Steve said to me THIS time was the best he was ever cared for. The nurse and staff were very open and honest and cooperative with us. He's right, that was unusual.
*Our friend Willie was able to use his pass and get in to see us. That was a comfort.
*My friends Paul and Edith came. Paul said it was unusual for him to be home that day. Having their presence, even if it was just in the waiting room was comforting.
*THIS hospital has Pepsi. {hey...gotta remember even the small details!}
*When they were transporting Steve to his room the transporters showed me where the back elevator is. I can get in without having to buzz the intercom and ask permission to actually see my own husband. Shhh.
* I had a very important question for the specialist that I really needed to know. I had been told he had fibrosis on his lungs. This is very bad. He told me he did not see any. I'm choosing to believe that it WAS there and God healed him of that. I'm going to admit I'm struggling with this one.
*Yesterday was Steve's birthday. Laryssa really wanted to see her daddy but I was worried she might be frightened to see how very ill he is this time. The nurse said they would let her visit him, which is a big deal in the intensive care environment. One of her best friends, Anne was praying and those prayers were answered. We spent 3 hours and had a wonderful visit. Steve was not even on oxygen the whole time and none of the alarms went off. She gave her daddy lots of hugs.
*Shortly after we left Steve crashed a little bit and they had to work hard to help him breathe better. He was trying to be brave for his daughter and paid a little for it. As a result he missed dinner and was very hungry. It was past visiting hours so I did not think I could bring him anything. Some dear friends took me out to dinner on the other side of town and as we were leaving I ran into the nurse manager from his floor! I asked her about bringing him food and she told me exactly what to do and say to get into his room!
*The hospital called someone in from home, on their day off to put in the much needed PICC line so now he can get his medicines like he should and will be so much more comfortable and not get stuck all the time.
*That I have so many friends who love us. It has been overwhelming to see all the friends we have supporting us.
I'm waiting on the big miracle. I'm waiting for them to tell me he is going to live. I'm trying to have faith. I'm ok with what God is going to do. I may be happy or I may be sad but this will not change the love I have for Him.
Prayer needs:
1. Tomorrow they are going to do a lung biopsy. Steve is afraid and I worry about the pain, he is already in so much and the pain meds are not covering it all. I worry about the anesthesia in his poor condition.
2. That I am able to accept the help that is being offered. This is a big deal for me and I'm struggling.
3. That everything falls into place so my kids get to where they need to be so I don't have to worry.
4. Steve's pain and breathing.
That's all for now, have to get things done here. I will try and update often. It helps to do this because sometimes it's hard to explain things over and over and over.
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