Joshys first timeout.
Out my kitchen window
I LOVE the snow
But I mostly LOVE my boys!
Sunday, February 7, 2010
Wow how the days go by. I am going to make this as short and informational as I can before my brain goes dead and I loose what I am trying to say...
Josh started having some troubles with his breathing yesterday morning. Said it was hard to breath and feeling very tight like the fluid was building up again in the pleural area. So we went into ER for an x-ray and tap if needed. Wait let me rewind a little bit. Last Friday (a week ago) Josh was having these same feelings and we went to ER to be tapped. His doc drained about 800ccs out and it was causing a lot of pain and that is when he stopped. Josh went back this past Wednesday for another x-ray to confirm that there was in fact still fluid built up....Thursday he had another tap. Drained out about 2100ccs of bloody fluid. Back to yesterday. So we get to ER x-ray shows the fluid has built back up and his pulmonologist drained about 1600ccs off. Josh's blood work compared to blood work he had done last month showed a big change in a lot of different areas. Not good changes. Sodium low, potassium high, platelets low, Hgb low...it goes on and on. Well last Monday Josh started the new chemo that his oncologist has been talking about/ The change in blood values we hope are from that medication. He did not take that chemo yesterday and started back up on his Sutent last night. They changed him because his onc. doesn't feel like the Sutent (current chemo) is working anymore. But we'll see. Sooooooo more blood work was done last night after he had two units of blood. Most of the values came up. Including his potassium. Not good. They gave him something to help that value go down. This mornings values show that it did come back down a little bit. The others were still crazy, and today he received two more units of blood. The fluid is building up faster then it had been. Josh hasn't felt much relief for very long that is from the last tap. He may get tapped tomorrow or Tuesday. For now he is resting at the hospital with fluids and blood as needed. Because his platelets are so low (44,000) His incision site from yesterdays tap kept bleeding throughout the night. The nurses got it to stop this afternoon....
What now. Sorry I feel like I am all over the place. That is what happens when you don't blog as often as you should. So. Josh has a choice. Either he goes to the hospital every 2-3 days for a tap and then it could turn into every day or every other day.... OR the pulmonologist can put in a chest tube (been there done that. OWIE) and that will be a permanent drain. Not sure what Josh is going to do. As of right this minute he wants to just be tapped. Tomorrow though he said he would think about it and make a decision. Pray for wisdom. On a better note. His pain has been pretty well under control. He often skips a dose of his morphine on purpose. That is a answer to prayer!
Andrew is coughing crazy and jumping up and down asking for medicine....yet he already got it. It is now an hour past bedtime. Both of the boys have had bad coughs this week and just when I though Joshuah was getting better he sounds worse to day. Pray for their health.
Hooray we are getting a new bathtub for Josh! Our bathroom has been gutted (almost) for a week now. Andrew has enjoyed showers and Joshy likes his baths in the kitchen sink. Showers with brother seem to end in tears. Joshy is walking almost running all over the place. Says, Hi, up, out, ohhhh wow, and others. Very cute to see him grow and develop. Andrew will be 4 on the 18th. I can't believe how fast time is going. I have made it my goal for tomorrow to call and get him in gymnastics. I've been saying for months I am going to do it never have. Tonight when I picked him up from Auntie Sharla's he was hanging with his feet up on the "oh shoot" handle above his booster seat....when we got home he was swinging on Josh's trapeze bar like he was ready for the Olympics. :) I promise I will keep you updated as this week goes on. Love to all!
Being carried!
Josh started having some troubles with his breathing yesterday morning. Said it was hard to breath and feeling very tight like the fluid was building up again in the pleural area. So we went into ER for an x-ray and tap if needed. Wait let me rewind a little bit. Last Friday (a week ago) Josh was having these same feelings and we went to ER to be tapped. His doc drained about 800ccs out and it was causing a lot of pain and that is when he stopped. Josh went back this past Wednesday for another x-ray to confirm that there was in fact still fluid built up....Thursday he had another tap. Drained out about 2100ccs of bloody fluid. Back to yesterday. So we get to ER x-ray shows the fluid has built back up and his pulmonologist drained about 1600ccs off. Josh's blood work compared to blood work he had done last month showed a big change in a lot of different areas. Not good changes. Sodium low, potassium high, platelets low, Hgb low...it goes on and on. Well last Monday Josh started the new chemo that his oncologist has been talking about/ The change in blood values we hope are from that medication. He did not take that chemo yesterday and started back up on his Sutent last night. They changed him because his onc. doesn't feel like the Sutent (current chemo) is working anymore. But we'll see. Sooooooo more blood work was done last night after he had two units of blood. Most of the values came up. Including his potassium. Not good. They gave him something to help that value go down. This mornings values show that it did come back down a little bit. The others were still crazy, and today he received two more units of blood. The fluid is building up faster then it had been. Josh hasn't felt much relief for very long that is from the last tap. He may get tapped tomorrow or Tuesday. For now he is resting at the hospital with fluids and blood as needed. Because his platelets are so low (44,000) His incision site from yesterdays tap kept bleeding throughout the night. The nurses got it to stop this afternoon....
What now. Sorry I feel like I am all over the place. That is what happens when you don't blog as often as you should. So. Josh has a choice. Either he goes to the hospital every 2-3 days for a tap and then it could turn into every day or every other day.... OR the pulmonologist can put in a chest tube (been there done that. OWIE) and that will be a permanent drain. Not sure what Josh is going to do. As of right this minute he wants to just be tapped. Tomorrow though he said he would think about it and make a decision. Pray for wisdom. On a better note. His pain has been pretty well under control. He often skips a dose of his morphine on purpose. That is a answer to prayer!
Andrew is coughing crazy and jumping up and down asking for medicine....yet he already got it. It is now an hour past bedtime. Both of the boys have had bad coughs this week and just when I though Joshuah was getting better he sounds worse to day. Pray for their health.
Hooray we are getting a new bathtub for Josh! Our bathroom has been gutted (almost) for a week now. Andrew has enjoyed showers and Joshy likes his baths in the kitchen sink. Showers with brother seem to end in tears. Joshy is walking almost running all over the place. Says, Hi, up, out, ohhhh wow, and others. Very cute to see him grow and develop. Andrew will be 4 on the 18th. I can't believe how fast time is going. I have made it my goal for tomorrow to call and get him in gymnastics. I've been saying for months I am going to do it never have. Tonight when I picked him up from Auntie Sharla's he was hanging with his feet up on the "oh shoot" handle above his booster seat....when we got home he was swinging on Josh's trapeze bar like he was ready for the Olympics. :) I promise I will keep you updated as this week goes on. Love to all!
Being carried!
Saturday, January 9, 2010
I don't remember what I last posted and I don't want to read it. So here is what has gone on over the last 24hrs...
Friday morning Josh had another thorencentesis. Drained 1800ccs out from between the pleura and he chest wall. Thursday night he was VERY uncomfortable and in a lot of pain. Tossing and turning. Friday night was about the same. I canceled our nightly help so I could help him, I layed down on the couch and about every 15mins for two hrs "Jenae I need help" I lay back down. "Jenae, Jenae, Jenae, Jenae" At about 1230 I called an ambulance. Spent all night in the ER. When I left at 630 to go home and get ready for work they had yet to get him to a room. That didn't happen untill like 930am. He had an x-ray,
Oh my goodness!!! I just went to post this very long and information blog and the darn hospital internet messed up and deleted it!!!!UGH. Darn you devil it's your fault!
Well to make my very long story short he had all the test done and all came back normal. No fluid around Josh's heart. No blood clot. The fluid around the pleura area is lower. However the CT didn't come back that great. God is bigger then this! The tumors, that are in/on/around the lungs have spread, gotten bigger and are acting like a scar on the lungs. That is why he feels like he can't get a good breath. The doctors say there is nothing else they can do. And that Josh needs to go home and "get comfortable on pain meds." I don't think so. We are not in denial but we do serve a might big God. I will post more of what was written before it got deleted when I am at home next.....
Friday morning Josh had another thorencentesis. Drained 1800ccs out from between the pleura and he chest wall. Thursday night he was VERY uncomfortable and in a lot of pain. Tossing and turning. Friday night was about the same. I canceled our nightly help so I could help him, I layed down on the couch and about every 15mins for two hrs "Jenae I need help" I lay back down. "Jenae, Jenae, Jenae, Jenae" At about 1230 I called an ambulance. Spent all night in the ER. When I left at 630 to go home and get ready for work they had yet to get him to a room. That didn't happen untill like 930am. He had an x-ray,
Oh my goodness!!! I just went to post this very long and information blog and the darn hospital internet messed up and deleted it!!!!UGH. Darn you devil it's your fault!
Well to make my very long story short he had all the test done and all came back normal. No fluid around Josh's heart. No blood clot. The fluid around the pleura area is lower. However the CT didn't come back that great. God is bigger then this! The tumors, that are in/on/around the lungs have spread, gotten bigger and are acting like a scar on the lungs. That is why he feels like he can't get a good breath. The doctors say there is nothing else they can do. And that Josh needs to go home and "get comfortable on pain meds." I don't think so. We are not in denial but we do serve a might big God. I will post more of what was written before it got deleted when I am at home next.....
Tuesday, January 5, 2010
The events of this week have been crazy. Lots of frustration and confusion. Josh had another x-ray done yesterday. Come to find out Josh does have pneumonia. The fluid that is built up around the pleura was blocking the view of the lungs and when they drained off what they did on Sunday then yesterdays x-ray showed a little of the lungs and the doctors said it looked like there was fluid in the sacs of his lungs which means pneumonia....
Today when the doc came in the new info is now NO pneumonia! Josh doesn't have any symptoms of infection. No fever, no increase white count, no cough.... looking at the x-ray again they think there is just so much fluid still in there that it's putting pressure against the lungs and that may be why it looked like pneumonia. UGH! We are all home now. Josh received 2 units of blood yesterday and is feeling pretty good. He does still have some tightness in the chest. The plan at this point is to call Josh's doctor when he starts to get worse again and then the doc will set up a appointment with radiology and we'll go in and they'll tap....withdraw more fluid. At some point depending on how often he has to go in for a tap he will have to have surgery. During the surgery they would drain all of the fluid (right now they can only drain about a litre being safe and not a lot of pain). They will "ruff" up the pleura so it will stick to the chest wall. When that happens fluid can't accumulate there. This procedure is about 80-85% effective. Just like with every tap that is done there is always risk with surgery. When it comes down to it, it's all going to depend on how fast fluid is accumulating. Pray for HEALING! Pray that this Sutent (chemo) Josh is on will work overtime and God will use it to take away the cancer!
Being carried
Today when the doc came in the new info is now NO pneumonia! Josh doesn't have any symptoms of infection. No fever, no increase white count, no cough.... looking at the x-ray again they think there is just so much fluid still in there that it's putting pressure against the lungs and that may be why it looked like pneumonia. UGH! We are all home now. Josh received 2 units of blood yesterday and is feeling pretty good. He does still have some tightness in the chest. The plan at this point is to call Josh's doctor when he starts to get worse again and then the doc will set up a appointment with radiology and we'll go in and they'll tap....withdraw more fluid. At some point depending on how often he has to go in for a tap he will have to have surgery. During the surgery they would drain all of the fluid (right now they can only drain about a litre being safe and not a lot of pain). They will "ruff" up the pleura so it will stick to the chest wall. When that happens fluid can't accumulate there. This procedure is about 80-85% effective. Just like with every tap that is done there is always risk with surgery. When it comes down to it, it's all going to depend on how fast fluid is accumulating. Pray for HEALING! Pray that this Sutent (chemo) Josh is on will work overtime and God will use it to take away the cancer!
Being carried
Sunday, January 3, 2010
Happy New Year!
So a week or so ago I mention to Josh that I had a feeling he was going to be in the hospital for something in the near future, I didn't really think so but it just a feeling. It's been several months and praise Jesus Josh hasn't had to goto ER for anything. Well guess what. We're back at the hospital. :(
Josh started having some tightness and difficulty getting a deep breath 3-4days ago. Saturday morning it was worse and so I tool him to the doc and he said he didn't hear any wheezing or crackling but did hear some dimenished lung sounds on the right side. (I heard the same thing when I listened to him the day before) :) Anyway... so doc wanted an x-ray and sent us to the hospital ER for further testing. We spent from about noon on Saturday to 330am Sunday in the ER. He had x-rays, blood work and a CT done. He had fluid built up between the chest wall and the lungs. At 100 this morning they drained about a liter out via a very small cathater. It took him three times of poking before he got in. I guess the doc kept hitting resistance (tumor). Today Josh has felt much better. He slept REALLY good he said from 4am till 1130am when the doc came in today. He is able to breath better and doesn't feel like he needs as much O2. SO! It looks like this fluid is accumilating from the cancer and is not from infection. Bittersweet. If it was infection then it could possibly be treated. Because it is from the cancer it's just going to keep happening. When Josh starts to have symptoms ie: difficulty getting a deep breath, hard to breath then they will aspirate and remove fluid as needed. The doctor said that they could put a chest tube in (been there done that) and drain all of the fluid out and start over to see how fast it's accumilating. However when they took fluid out this am after about 800ccs it became really painful for Josh. They wouldn't be able to totally empty the fluid out via chest tube because of that reason. Wait and see. God is bigger then this and we believe this will not lead to the end! This circumstance is one more for us to surrender to God. It sucks! Yes. But it's a bump in the road to healing! God is working everyday. Proof? Well when we were sitting in ER yesterday Josh was getting pretty uncomforable and need to move around. Well I look over at him and he is lifting himself up off his chair with the strength of his arms and putting little weight on his legs (stability). Hello!?!? He hasn't done that in MONTHS! More? Since he got out of the hospital in October he hasn't been able to sit in his chair for more then and hour of two due to the bedsore he has and because it was just too painful on his whole body. Yesterday he was in his chair from 1130am to 600pm! NO real pain. Tell me God isn't working.
So a week or so ago I mention to Josh that I had a feeling he was going to be in the hospital for something in the near future, I didn't really think so but it just a feeling. It's been several months and praise Jesus Josh hasn't had to goto ER for anything. Well guess what. We're back at the hospital. :(
Josh started having some tightness and difficulty getting a deep breath 3-4days ago. Saturday morning it was worse and so I tool him to the doc and he said he didn't hear any wheezing or crackling but did hear some dimenished lung sounds on the right side. (I heard the same thing when I listened to him the day before) :) Anyway... so doc wanted an x-ray and sent us to the hospital ER for further testing. We spent from about noon on Saturday to 330am Sunday in the ER. He had x-rays, blood work and a CT done. He had fluid built up between the chest wall and the lungs. At 100 this morning they drained about a liter out via a very small cathater. It took him three times of poking before he got in. I guess the doc kept hitting resistance (tumor). Today Josh has felt much better. He slept REALLY good he said from 4am till 1130am when the doc came in today. He is able to breath better and doesn't feel like he needs as much O2. SO! It looks like this fluid is accumilating from the cancer and is not from infection. Bittersweet. If it was infection then it could possibly be treated. Because it is from the cancer it's just going to keep happening. When Josh starts to have symptoms ie: difficulty getting a deep breath, hard to breath then they will aspirate and remove fluid as needed. The doctor said that they could put a chest tube in (been there done that) and drain all of the fluid out and start over to see how fast it's accumilating. However when they took fluid out this am after about 800ccs it became really painful for Josh. They wouldn't be able to totally empty the fluid out via chest tube because of that reason. Wait and see. God is bigger then this and we believe this will not lead to the end! This circumstance is one more for us to surrender to God. It sucks! Yes. But it's a bump in the road to healing! God is working everyday. Proof? Well when we were sitting in ER yesterday Josh was getting pretty uncomforable and need to move around. Well I look over at him and he is lifting himself up off his chair with the strength of his arms and putting little weight on his legs (stability). Hello!?!? He hasn't done that in MONTHS! More? Since he got out of the hospital in October he hasn't been able to sit in his chair for more then and hour of two due to the bedsore he has and because it was just too painful on his whole body. Yesterday he was in his chair from 1130am to 600pm! NO real pain. Tell me God isn't working.
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