Here's the latest. She seems to be doing really good. She tried not taking any IV fluids last night, so we'll see if that affects her. This will be really, really long b/c I'm going to post all the updates from the beginning, in case some of you don't know the whole story (read from the bottom up to start at the beginning of the saga). Sorry for any grammar/spelling errors...
July 10, 2008
Well she tried going off of the IV fluids for 3 days (Fri -Sun) after returning from Mayo and then spent most of that week with nausea and not able to eat, so went back on fluids and that seemed to help a lot. Helped so much that for the first time in about 5 months she was able to go to church on the 6th.
Still waiting on a couple of the test results from Mayo and still has the colonoscopy to do. Trying to find out why she has to be on the fluids in order to keep the nausea away, but no answers yet. Saw her oncologist and he will do the maintenance B-cell chemo next week. You can pray that will go through smoothly. Also for the kidney results to be ok.
She is gaining her strength back a little at a time but is progressing well enough that she went to HYVEE by herself and to family doctor. I have reluctantly given up part of the grocery shopping so she can do some of that now - nice of me ain't it? Come to think of it since Jenni has been here I think I have only been in there once this week. Jenni and the kids are here this week while Anna is going to Vacation Bible School and she is having a good time doing that. Jamie, Cassie and Hudson were also here over the long weekend and we all had a blast. Hey that was a pun and I wasn't even trying.
Thanks again for all the prayers. Cecil
Sent: Sunday, June 29, 2008 1:01 AM
Subject: Nona Update- 6/28/08 (Mayo visit)
On Thurs, we had return visit to GI Dr. She said the CT scan showed no problems, except thought there might be cist or something on a kidney so scheduled a sonogram for that on Fri. Then went to Pulmonary doctor and he wanted to do a pulmonary function test, did that later in the day. He looked at the x-ray that was done the day before and said, as we expected, there was fluid in bottom left cavity. He also wanted to look at the most recent x-ray from Mercy, which again out of all those documents did not have, so he will call us when he gets that and looks to see if it is better, the same or worse. He thought it would be fine to leave it alone as long as it was either the same or better, if worse, he wanted to talk about what to do. He also said the pulmonary test was normal and said she must have been above normal before the chest tubes and fluid.
On Fri, we then went to get the ultrasound done on kidneys. Next was Thyroid doctor and he asked why we were there, we said because we were told to be there. ha.. He went over everything and said looked like was doing everything right except she hadn't got a thymoglobulin test, so ordered that. Otherwise only thing suggested was to increase calcium. So, only thing left is colonoscopy and endoscopy in Aug or sooner if done back home. We got home around 6 PM Friday.
The bad news is they didn't find anything that was causing nausea up to this point. The good news is they didn't find anything that was causing the nausea up to this point. Why is that good? Because it might just mean that it will take more time to get this out of her system and that’s all. Some of us think and from what I have read from other people that has had c-diff is that it could still be lingering affects from that and could be months and months to be completely over it.
As I told Nona that even if we go to Mayo and they don't find anything, it will have been worth it to have gone just to make sure we haven't missed anything. I am also under no elusion that something could still pop up that we haven’t seen coming.
Did Mayo wear her out? She has slept almost 24 hrs straight since being home. Pray for her strength to return and nausea to continue to get less and less, for the kidney ultrasound test to be normal and for upcoming colonoscopy. (And for her hair to stop falling out! - doctors believe it is from not eating for 5 weeks)
After being up this evening she has had nausea and headache, hope it is just from the long week at Mayo.
P.S. I tried to put everything in order below, it is a long story.....
Sent: Wednesday, June 25, 2008 9:29 PM
Subject: Nona Update- 6/25/08 (Mayo visit)
Not a lot to report. Setting up tests and appointments. Yesterday saw the GI dr and she setup a colonoscopy and upper endoscopy (she wants biopsy’s) but couldn't do it until Aug. It is because the last time she had one done the sedative was not effective (they gave her as much as they safely could) and could not finish because of the pain. So they have to do one with putting her under and those are harder to schedule.
Today she saw Hematologist about the lymph nodes and he wanted to see the slides. (Ok we brought a 30lb box of documents and cd's and didn't have what he wanted.....) So he ordered them from Mercy to look at. So next was CT scan. You know what you have to drink to do that and you know how nauseated she is. Well only 2 or 3 swallows and up it came. Dr decided to let her drink water and do it anyway. Then the GI office called when we were back at hotel and wanted her to see lung specialist and since didn't have an appointment you just have to go and wait to see if they can see you. They wanted a more recent scan of the chest so down we go to get that done. At least didn't have to drink anything. By then too late to see anyone so we go back in the morning to wait and see, plus she wants her to see Endocrinologist and that will also be a wait and see tomorrow and then a return visit to GI doc.
She is in bed now with nausea. Walked alot today, probably the most she has walked since out of hospital. Most of the buildings are tied together by either skywalks or underground subways they call them. So that is nice but wore her out. More later I am sure... Cecil
Sent: Monday, June 23, 2008 10:53 PM
Subject: Nona Update- 6/23/08
She was determined to get back down to see Hudson James and we did. Although Friday night she started nausea/migraine and wouldn't quit so went the ER to get shot. After hour and half we started back to Jamie's and she said was like she wanted to jump out of her skin. Got home, talked to Jamie and decided to go back, it was unbearable. After another 4 hours and trying three different drugs, we went home and she pasted most of the night. (She has taken the same meds for migraine and nausea before and never reacted like this, but nothing is normal anymore) So we almost went back home but in the morning she felt better so on to the party at Jenni's! Had good time seeing everyone there. Got home Sunday night and she threw up again and nausea. Monday took her to appointment with thyroid doctor and then came here to Mayo. Will see doctor at 2 on Tuesday and away we go....... wonder if they have a roller coaster at Mayo.... We sense lots of prayers going on.... CS
Sent: Tuesday, June 17, 2008 10:59 PM
Subject: Nona Update- 6/17/08
Her hard work paid off as she did pretty well this last weekend. Was totally drained when we got home Sunday night but slept well that night too. We talked on way home that it must be about 5 months since we had made any trips at all, so was good to "get out". The folk’s 60th anniversary went very well, everyone had a good time. Even the hot air balloon ride for mom and dad went really good. I had my doubts they would go up, but sure enough they did and had good time. Philip, Warene, Carolyn and Loren did a good job of putting everything together.
Jenni, Anna and Jacob came back with us and we will be taking them back down on Thursday and will be with our new grandson (Oh yeah, Jamie and Cassie will probably be there too :-)) until Saturday and then to Anna for her birthday (3 already!). Some of you were laughing at my story about the powered cart, but yesterday the gals and Anna and Jacob went to a store where there were these powered things and Anna and Nona were driving it (glad I wasn't around) and went into the clothing department and Nona claims that Anna pushed on the gas at the wrong time and they knocked over whole rack of clothes. And you thought I was kidding about the wheely....
Still on for Mayo, it is coming fast now. Pray for wisdom for doctors and for Nona as she is not looking forward to more tests - don't blame her. Still doing the IV at home so will be taking that with us. Thanks for all the kind words and prayers. Cecil
Sent: Thursday, June 12, 2008 1:34 AM
Subject: Nona Update- 6/11/08
She is really trying to get stronger so can go to the anniversary party this weekend, she made it all the way down and up the stairs using each leg (she has only been able to start with her "good" leg going up the stairs because the other one is weaker and couldn't use it to go up). Wears her out but shows she is getting stronger. Also ventured out to a store today - she needed something but didn't know what it was until she saw it, uh huh..... She used the little powered cart thing and I will be glad when she doesn't have to use that anymore - I thought I was keeping up and next thing I knew she was 8 rows over and I lost her several times..... Think I saw her do a wheely once...
Nausea has come at times but doesn't last as long and then is gone. Thankful for that. Mayo is moved to June 24th. Thanks for the prayers. Cecil
Sent: Wednesday, June 04, 2008 10:11 PM
Subject: Nona Update- 6/04/08
Dr. Morgan scoped down her throat and said "what am I supposed to be looking for?" it was shrunk down so much that he had went past where he needed to look. So he said no need to leave the trach in. No trach - is that nice or what. She also did the dishes and cooked a meal this evening - first time in don't know how long.... It wore her clear out but she enjoyed cooking again. Pray for continued healing and strength. Cecil
Sent: Wednesday, June 04, 2008 12:33 AM
Subject: Nona Update- 6/03/08
Well we have half of Sunday, all of Monday and Tuesday with no nausea and she slept very well last night. And today she has eaten breakfast lunch and supper. AND she felt good enough for me to take her to vote! It has been a long long time since she has felt this good for this long. I know - watch it - it could come back.... Tomorrow she sees the ENT doctor and will decide about whether he feels like the trach can come out. Wouldn't that be something? We don't want to push it and have it out before being ready, but it would be very good to have it out. I have walked her down to the mailbox several times and it is very good for her to get outside. She wants me to take her to Walmart or even Hy-Vee - she says it has been a long long time since she has been out to shop. I don't know, I kinda hate to loose the grocery shopping responsibility when she gets to feeling well enough to do that. (hahahahahahahahahahahaha that was a big joke - although last time I was in there I only had to ask 2 clerks where something was)
Still holding onto the Mayo appointment, her platelets are still pretty high and white count is still elevated - there is still something not quite right yet. Thanks again for all the prayers and concern. Cecil
Sent: Sunday, June 01, 2008 11:01 PM
Subject: Nona Update- 6/01/08
Well tomorrow (Fri) brought more nausea and throwing up. So Saturday on her birthday she was not feeling very good at all. Did not eat but drank some. Late Saturday she had high blood pressure and started a headache. At 3:30 woke up with large headache and pressure was still up there. Took some meds and slept off and on. Sun morn was still too high and decided to go to urgent care clinic. By the time she saw the doctor blood pressure was back down and headache was almost gone.... So after 3 hours we went back home, but since it was so close to Machine Shed (close could have been 50 miles I suspect), she wanted to get her favorite, pot roast. So brought it home and she ate some and everything settled well. Ate some more later in the day, stayed down again. Felt well enough by 9PM that she wanted some DQ. So that all sounds good, although we are still in the roller coaster so will see w hat tomorrow is like. That all for now. Thanks for your continued prayers. Cecil
Sent: Thursday, May 29, 2008 11:01 PM
Subject: Nona Update- 5/29/08
The roller coaster continues.... She was able to go to the Dr appointment, and he said things were looking fine with the bone marrow and so forth and did not want to do the chemo right now until she feels better - she was still very weak and tired from diarrhea. He increased the fluids to two liters a day. On Wed she started feeling better again and eating a little bit again and nausea going away. Thursday normal stool and was hungry - although did not sleep much Tues and Wed nights. Took her for a drive today and went by Long Johns and she thought shrimp sounded good so brought some home for her to eat and she ate it.... Right now she is feeling pretty good except for being very tired and weak. We shall see what tomorrow brings. ----CS
Sent: Monday, May 26, 2008 11:30 PM
Subject: Nona Update- 5/26/08
The nausea and diarrhea is back - actually constipation first then diarrhea. Trying to carry on with IV fluid and see if it will pass. Dr appointment tomorrow for the B-cell treatment, we'll see if she is up to going, will probably call and see if they really want her to come. Send in stool sample to check it out. We'll see. Later. CS
Sent: Thursday, May 22, 2008 7:11 PM
Subject: Nona Update- 5/22/08
Probably is good news since I am updating already uh? This is second day of no nausea and eating some and doing the instant breakfast drink. It has been quite a while since no nausea. We have been going slow on the food but she has been doing real well so far with it and actually being hungry. I still think they mis-diagnosed the c-diff at the start and are just now getting over it after taking the Flagly, I could be wrong but they never could find anything that would have caused nausea. I would be so happy to cancel the appointment at Mayo........ But of course with everything we have been through, I am not going to get hopes up too high yet...
We will continue the IV fluids and IV Zofran, then slowly cut back and see what happens. Well that is it for now. Thanks to all. Cecil
Sent: Tuesday, May 20, 2008 11:43 PM
Subject: Nona Update- 5/20/08
Well I will admit I put off sending out another update, just tired of bad news I guess. After taking the labs on Tues 13th she just kept getting worse and by noon there was just no use to try to stay home any longer, barely being able to get to bathroom and back to bed. So back to ER. Had it worked out to demand a transfer to another hospital but for reasons that we can talk about some day, we were admitted back to Mercy. Dr did some more testing; found her to be dehydrated (even with IV fluids at home) and anemic with other lab results out of whack. He also said that from one of the tests it showed she has been malnourished for about 5 or 6 weeks - yup that would be correct, probably last real meal she had eaten.
So started on IV TPN (food) and IV fluids. Giving 3 kinds of nausea meds to keep it under control, which of course makes her tired and hard to want to move around. Oncologist wanted to run a bone marrow biopsy to rule in/out Leukemia and a few other nasty things like that. (Because of the elevated inflammation markers, there was reason to be concerned about that and also because of the swollen lymph nodes that started this process to begin with, there were lots of symptoms that were bothering). Again when a doctor says it won't hurt much, they always mean it won't hurt THEM much. Pulling the bone marrow out is painful, more so than giving the bone marrow biopsy. They do both while they are in there so they can run different tests from them. Few days later the results came back and he said the red and white blood cells were normal. One result in the "good" column!...
However nothing else that can pinpoint what is causing the no food staying down the hatch problem. Ran a test for H. Pylori, negative. I don't remember what other tests there were. (I signed a release to get a copy of all the documents so we would have them once we went somewhere else so we could take them with us - they gave the copies to me in a box, the box weighs 30 lbs - that kind of explains what all she has been through... and does not include the last hospital stay)
The IV food helped get her numbers back in line but nothing was found causing the nausea, so today we were released to go home but before we go she vomits and has a fever, oh well. Got an appointment at Mayo but could not see her before end of June. We can keep calling and if they have a cancel, we can get in sooner. Are starting her on fluids now in hopes to keep ahead of trouble. She is keeping down instant breakfast drinks with whole milk, so hope that continues.
Thanks for all the prayers and concern. We will get through this and see the sun again, and someday see the Son. CS
Sent: Monday, May 12, 2008 10:57 PM
Subject: Nona Update- 5/12/08
Had to start her on IV fluids here at home on Sunday afternoon. That is typical, 2-4 days from coming home having to start IV. Taking labs tomorrow, so will see where all the numbers are at. Ate 5 or 6 bites of food since getting home Thurs, none to speak of yesterday or today. Drinking some all through the day. Will talk to them tomorrow about some IV nutrients - would rather it went through to the stomach but she is going to have to have some someway. Her back started hurting tonight (of course...) Got call from Mayo today, told me to have her doctor call (again) and talk to their doctor, haven't heard back. Seems like I just did an update yesterday but it was last Thursday - where's the time go...... Cecil
Sent: Thursday, May 08, 2008 9:54 PM
Subject: Nona Update- 5/8/08
Flagyl is not working for the nausea. Taking doses of several meds just to keep it under half way control. The insurance company decided today at 4 that she was all healed up and ready to go home. 100.7 fever, nauseous, weak, and dr admitted that they didn't know what was causing the nausea, but Dr agreed that she is good enough to go home. So here we are. Working with family doctor to try to get into Mayo. Pray that in the mean time she will get enough fluids to stay down and that she can keep down some nutrition.
Sent: Monday, May 05, 2008 8:10 PM
Subject: Re: Nona Update- 5/5/08
This is second full day of Flagyl and she has eaten a little bit two meals in a row. That is different and hasn't happened in weeks. Still very tired and weak and doesn't walk very far. Still has fevers and nausea and all that but it seems to be a bit better. Still holding my breath of course. Potassium is very low again so getting it in IV. That should change once things get back in order. Thanks for all prayers and verses and all. Cecil
Sent: Saturday, May 03, 2008 9:40 PM
Subject: Nona Update- 5/3/08
They had taken her off of the IV fluids yesterday and by 4 this morning she was back to vomiting, nausea and getting dehydrated. I had our bags packed and was ready to move her today. Frustrated that we/they still had no clue as to what is causing diarrhea, nausea, etc. after almost 4 weeks in here for this. Long story short - they got back the results of stool sample this afternoon and it shows she has c-diff (Clostridium Difficile). It is the bad bacteria in the intestines usually caused from being on antibiotics for extended time and being in the hospital. They had tested this when we were in here before and was negative so don't know why it didn't show up then. The right kind of antibiotic will treat this, and hopefully it will quickly stop the symptoms that she is having. I have become pretty good at being a pessimist, so am concerned that this strand could be the one that is harder to get rid of and the one that Flagyl won’t work on. Hope not. The symptoms of c-diff are: nausea, diarrhea, vomiting, and weakness - so sounds pretty close to what she is going through for 4 weeks.... Am hoping by Monday we will know that it is working, however, one thing that it will actually do is make her have diarrhea - weird - but she should be starting to get over the nausea.
We talked them into getting her back on IV fluids this morning and is doing much much better. And now taking the antibiotic we hope and of course pray, to be on the road to recovery. All for now.. Cecil
Sent: Friday, May 02, 2008 9:44 AM
Subject: Re: Nona Update- 4/28/08
Pain is better, nausea is worse. Didn't eat anything to speak of yesterday again nor today. Dr talked about going home with more fluids than last time, no we aren't doing that. If don't get it figured out by Monday we are moving somewhere else.
Sent: Thursday, April 28, 2008 AM
Subject: Re: Nona Update
Since around 3PM yesterday she has not had nausea. They are being much more aggressive in giving her nausea medication, using about twice as much as when we were in before. That seems to be helping and she is hungry and able to eat some without having to force it down. She is on a morphine pump and has been able to keep on top of the pain with it. They will put on a different kind of patch on her back and hopefully will work better and then can wean off the pump. Know results of bone scan tomorrow.
But of course we can't have all good news... She was low on hemoglobin and so has to have two units of blood and also low on potassium again. They are thinking it is because of lack of nutrition, hope so.
Sent: Thursday, April 26, 2008 9:25 AM
Subject: Re: Nona Update
As some of you already know, Nona is back in hospital. The nausea and vomiting and diarrhea and dehydration is back, even though we were doing the IV fluid at home for 4 days. Fever up and down. So family doctor said better get back to ER and try again to get to the bottom of what is causing this. If they don't have it under control by Monday her doctor is going to insist they either get it figured out or send her to where they will. So after 5 1/2 hrs in ER she got a room. If any of you have seen the new addition they are putting on the north side of the hospital, it is called the Nona Stinemetz north wing......
Thursday, April 24, 2008 1:17 PM
Nurse said that her family dr should see her. So we went, had to get wheel chair to get her up to second floor where office is. She ordered home nurse to give IV fluids for few days and put some meds in the IV (like potassium, which can make you nausea if taken my mouth) and also some phenergan that comes in paste to rub on the wrists so she won't have to swallow it. We will try this and see how it goes.
Sent: Thursday, April 24, 2008 9:25 AM
Subject: Re: Nona Update
Hospital sent us home yesterday but she wasn't ready and told them so. Had fever and had nausea. But we are home and she is very weak, having a nurse come this morning and evaluate her. Let you know more later.
Sent: Tuesday, April 22, 2008 12:01 AM
Subject: Nona Update 4-21-08
Going to get a scope in the morning to look at the stomach and try to see if there is some kind of problem there that is causing this nausea and such. Not pleasant but not as bad as other things she has had to go through. Also, another doctor has said he thinks it is one of the meds she is taking that is causing it (the one that keeps heart rate down - something she has had for years - and they changed that med when she was in ICU with the A-Fib problem), so he has changed that back to her normal med. But Nona thought should go ahead with the scope and get it over with. She hasn't eaten anything but couple bits of jello/crackers for days now. Not walking much now either so back on with the leg wraps to stop any blood clots.
So tonight they started on IV "food". She has a pic line again so they can do that IV. Her urine infection is back again. That is what the fever was from no doubt. They will find something to give after the biotic so that it will prevent it from coming back - that would be good cause this is the third round of it.
Ok tomorrow we should see if scope shows anything and if the meds change has helped. Thanks to everyone. God is in control. JustMe.
Sent: Saturday, April 19, 2008 4:23 PM
Subject: Nona Update 4-19-08
Will be in hospital till probably Monday. Low on potassium again, trying to give it by IV in the hand but it burns too bad, don't know yet what they are going to do there - still can't get the pills down as yet. Eating some crackers a little at a time trying to get things going, slow process. White count is back in the normal range. Trying to walk as much as possible, slow process also. Dr's are baffled by nausea. If can't get it under control will probably talk to gastro specialist. That's it for now I reckon.
Go see Expelled: No Intelligence Allowed -- excellent.
P.S. They just took her temp and it is 101... go figure..
Sent: Thursday, April 17, 2008 6:06 PM
Subject: Nona Update 4-17-08
Back in hospital Tuesday afternoon. She was having lot of diarrhea and getting dehydrated again. On clear liquid diet today and try to do more solids tomorrow. Nausea and back pain is pretty constant - getting meds for both every 4 hours. The leg vein problem is improving, trying to keep leg up and moist heating pad on it. Urine came back negative so that is good. We'll see what tomorrow brings... Thanks just meec.
Sent: Sunday, April 13, 2008 10:20 AM
Subject: going home today
She is weaker than before but insurance is pressuring dr to release her. Dr had to tell them she was keeping her another day (yesterday) whether they liked it or not. The vein in right leg is from vericous not deep, but it can turn into the deep clot, have to watch it closely. Elevate the leg and heating pad. Dr said she had those with last child and didn't go away - had to have surgery to remove. Just what we would need. So we will be going home this am (ok nurse just said it will take her a while, but have until 5, so who knows when). Giving her a hose type thing to put on the leg. She still got nausea at breakfast didn't eat much. Is not walking but to bathroom. So I will have to be the sergeant at home, wish me luck or whatever it will take.
Dr. said they did a study on healthy 20 year olds, put them in hospital for 7 days and allowed only to get out of bed to go to bathroom. It took them 6 weeks to get back to normal.
My guess is we will be back, but who knows. She said she doesn't feel right. So here is what we have to do. Keep the leg elevated above the heart, put on heat. Start walking more, which makes the leg worse and so try to stay off the leg, but have to walk more. Eat so can get stronger, can't eat much because of nausea, take antibiotic because still have urine thing, but that makes more nausea. Take vitamin and potas, but it is hard to swallow makes gag. Never have said what this was in first place I guess we will just say it was the flu. Hopefully she will be able to eat some lunch then will feel better I think.
Sent: Monday, April 11, 2008 8:01:26 PM
We are still in hospital (since early Mon morn) and she is about as nauseated now as 5 days ago. Was better this morning and then ate a little for lunch and then threw it up. Stool samples were all negative. Her white count has come down to 13,000. Since samples were negative they stopped the Flagyl and will stop the Leviquin tomorrow if the urine is negative for the infection she has there. If it still shows infection they will try a different antibiotic for that. We know that antibiotic can cause nausea so might be in a circle here. She has had very little to eat since last Fri. One way to loose weight but not the best way! Hoping for better tomorrow. Cecil
Sent: Monday, April 7, 2008 8:01:26 PM
We are back in hospital. She couldn't eat and wasn't able to drink much, it was coming back up, since Fri. So early this morning she was weak enough couldn't get out of bed. Dehydration and vomiting, diarrhea did its work. Took a CT scan and stomach and pancreas showed ok. So stool sample might show intestine infection, since she has high white count there is infection somewhere. Hopefully the sample will show us. Hoping this will be a short stay. We are having reunion with all our nurses...... more later. Ec
Date: Mon, 31 Mar 2008 21:43:40 -0500
Subject: Nona Update
We went to the ENT Doctor today to put it a different trach (one without the cuff in it) and have him look down her nose to see how the swelling is doing. She was pretty apprehensive about changing the trach out - understandable so, since doing that in the ER seemed to be what started all the air and so forth - but it went smoothly and she could breathe better afterward. Then he put a scope down the nose to see the swelling and he looks at me and says, is this Nona Stinemetz? The swelling had gone way down and he could see things that he couldn't see before...... So that is good news since that is what we were trying to do to start with. A week from Wednesday he will again change out the trach to a shorter one and then maybe after another week or so go to the metal one that will be much smaller and not as noticeable. We have 4 other doctor appointments in April so hope all goes as well as this one. She is still very weak but is doing exercises and trying to gain strength back. The swelling in legs and ankles have almost gone back to normal. So we still have long way to go but it is encouraging today. Thanks for all the prayers and EVERYTHING else that you do for us.
Cecil & Nona
Sent: Tuesday, March 25, 2008 10:48 PM
Subject: Re: Update
As the picture showed she came home to fanfare from the grandkids. Was beginning to wonder if we would ever get her home! Her protein is still pretty low and will have to bring it up with protein type foods - we found out today that the swollen ankles are from low protein. So high protein foods and walking will help the swelling. She will have about 5 doctor appointments in April to follow up on everything. The IV potassium worked to get it back up but will have to check it again to make sure it stays up. Just to tell you a story about how many times we about went home just to have something else come up (happened about 3 times) -- night before last, well earlier in morning, the aide comes in to check vitals like always and I was barely awake but I heard him say "it's 101". I jumped up and went right over to her and felt her forehead to see if she was really that warm. Well he just then realized what I had thought and he says no no I just took her glucose and it was 101. I just knew her temp had jumped up again.
Is still very weak but is getting around fairly well. Steps are not good right now, that is still very difficult but will come back in time. Still on pain meds fairly often and that too will come down as her body is healing. She will still be on the trach collar for moisture (a hose hooked to machine that produces moisture), mostly just at night but during the day if it gets too dry. Does not sleep laying flat yet so getting the adjustable foundation for our sleep number bed was good thing.
The chest x-ray still is showing the blood in left lower lobe. She (we all had of course) prayed allot about this and read scripture and felt that the Lord was leading her not to have the surgery and remove the old blood. The blood will go away in time, but the problem is that it will take it months to go away and by then the lung will have scared and most likely (according to the doctors) will not be able to use that lobe because it will not expand again. So it is possible in time that she may have to have oxygen, it is also possible that she will not. She believes the Lord will take care of this problem and will heal her lung. And if that doesn't happen then the Lord has other plans and will give her whatever it takes to move forward. She has had perfect peace about this decision and has not wavered from it. The kids/spouses and I are backing her 100% on this and are praying that God will indeed intervene and make her whole again. Of course in the mean time she still has the original swelling of lymph nodes to deal with, in that, we won't know for another week whether those have gone down or not. So more to pray about that.
So here we are at home. Many days to go but does it feel good to be home. Sorry to those I didn't get called back by phone, I will try to do that soon. Thanks for all the prayers and everything else.... Cecil
Sent: Monday, March 24, 2008 1:05 PM
She's not coming home today either. Her electrolytes are out of whack, her potassium is very low and she's having a lot of water retention in her legs and feet. They gave her some meds for the potassium thru IV and are changing some of the meds for those things, so we'll see how they work today and thru the night. She did have a great night last night. So we'll not make any more guesses on when she's coming home!
Iowans--is there anyone that could come over and help me with the kids while Dad makes a run to Iowa City for their new bed foundation. Alisha will go stay with Mom, so I'll be here with 4 or 5 (Dad might take Mia) kids...! :) I think he was wanting to leave around 4.
Date: Sat, 22 Mar 2008 09:56:24 -0500
Mom did not come home Friday, as planned. Thurs. night she started running a fever and throwing up. They did a blood culture, but that will take up to 5 days to get results back. A flu swab was negative, but a urine analysis showed an infection there, so they are giving her Levaquin for 5 days. She has walked about 9 times today and looks and acts better this afternoon/evening. So we don't know about a release date yet. She decided not to do the surgery and Dad said he would email more about that when she gets dismissed. Jenn
Date: Fri, 14 Mar 2008 16:11:51 -0500
The needle did not work. They were only able to draw a little bit out. Figured out it's old blood--a clot just sitting. Dr. Barth said her options are surgery to remove it or to just leave it there. It would damage a small amount of her lung, but he said that would only effect her if she climbs a mountain or runs a marathon. They're getting a second opinion from a surgeon this afternoon/evening to see what he says. So that's where we're at right now. Just wanted to let you all know since the procedure was this morning. Keep praying.
Sent: Friday, March 14, 2008 12:04 AM
They did an ultrasound of Mom's lung yesterday and it showed there is a "moderate" amount of fluid in her chest cavity. In the morning (Friday) she will have thoro-something-sentesis done--they use a needle to try and drain the fluid out. Praying that this will work so she doesn't have to have another chest tube. The ultrasound didn't show if the fluid is old blood, new blood, or just some other fluid. I don't think her lung is collapsed--the main concern is that just letting the fluid sit in there and waiting to see if it will absorb on its own would cause irreversible scaring on her lung. They're both taking this pretty hard. But she looks better than she did yesterday, so we're hoping this is just a small hill to climb, rather than another mountain. BUT God can move even mountains. Thanks for continuing to pray for all of us through this long ordeal.
Sent: Tuesday, March 11, 2008 5:45 PM
She is doing GREAT! The last chest tube is out and so far, so good! Pain level was good when I left the hospital and her blood pressure was good too. They started the 3rd round of the chemo. AND she's moving back up to the 8th floor today! Her room was ready, just waiting on the nurse finish up paperwork. The doctors said if she keeps up the progress, she'll be home in a few days!!!!! It's good to smile again :)
Sent: Sunday, March 09, 2008 10:57 PM
Praise God!!! She had a pretty good day today, all things considered. They took her off the ventilator and took out one of the chest tubes, and also took her off the insulin and sedative drip. She had some pretty good pain with that, but had a good late afternoon/evening. She's doing great off the vent. We'll see how the night goes. The anxiety and pain control will be the toughest for her, once again. The doctor is hopeful that she'll be out of ICU within the next day or two! Keep praying that there are no more setbacks and that she continues on the road to recovery. Thank you so much for all your support. Those who came up and those who have been staying and those who have brought food. We appreciate it more than we can say or express.
Sent: Friday, March 07, 2008 1:15 PM
She is tenuously stable for now--after last night almost bleeding out. She's in the fight for her life and she's fighting hard. They keep her pretty heavily sedated. She is on a ventilator, but it's mostly for support (in order to sedate her enough to keep her calm, she needs the ventilator). They put another chest tube in on the same side to drain some "old" blood (from the artery nick that bled so badly yesterday) that was causing the lung to collapse. Another chest x-ray was due this afternoon to check on her lung. It was down to 50%. They also decided to put a feeding tube in since she hasn't been able to eat for a while and of course now can't eat. It should hopefully be out very shortly.
I think that's all. Keep praying. She's fighting hard.
Sent: Sunday, March 02, 2008 2:47 AM
Things have been really good the last 2 days. Her swelling is the smallest she's been since the 23rd when we started measuring her!!! Since the coughing seemed to make the swelling worse, they decided to deflate the cuff (balloon) on her trach. After they did that, the swelling decreased. I think that makes them think the air is leaking from a lung(s). She feels quite a bit better. Still has some back pain and anxiety, but we're able to control both of them w/out too much trouble. It has helped all of us to have so many family members come to help and support. I think the plan is to clamp off the chest tubes and see if the swelling stays down. If it does, they'll take the chest tubes out and hope it stays down. I think! It's starting to get confusing and I forget things (not a surprise to most of you, I know!). But the good news is, her swelling has stayed down for 2 days now! Keep praying, though:)
Sent: Friday, February 29, 2008 3:18 AM
Subject: Re: Update
Ok well lets have some good news then. After the left chest tube she has gotten control of the pain again after several hours of struggle. Her left eye is almost back to normal. She has lost 1 1/2 inch around her face, has been communicating and smiling and is setting up in a recliner and wants to stay there for the rest of what is left of the night. It is about 62 degrees in here but she is comfortable - the morphine does that. She smiles when even Jamie is cold and she isn't..... All this is not explaining where the leak is coming from but for now they are just trying to stabilize things and then get an idea of what to do next, or if things continue to improve then means the tear is healing on its own. It looks like she is going to be able to rest if not sleep some so that will let us get some sleep also. YEAH!! The ICU room is VERY nice and BIG. High tec, flat screen TV, touch screens, monitors on wall, couch pulls into a bed, recliner, and of course the hospital bed. Jamie gets the couch, she wants the recliner so I get the bed! It was funny the other day she was sitting in chair beside the bed so I was laying in the bed and covered up, about 6 in the morning in comes some kind of doctor and he comes at me like he is going to look me over - I said no no, it's her!! Don't take any of this wrong, there is probably a long road ahead but this might be the first step finally in the right direction, we will know more in couple of days. Remember we have moved a step forward before just to then go back two.... So here we go... just ec.
Sent: Thursday, February 28, 2008 10:07 PM
I'm really getting tired of writing these. And they don't have nearly enough good news in them!
This afternoon, the left side started swelling--both eyes are now swollen shut. The "crackling" started in her left arm. So they waited around forever to see the cardiothoracic doc and he said to take her to ICU so they can monitor her lots better. They talked about intubating her (putting a tube down her throat for breathing) and taking the trach out so they could look closer for any holes in her trachea. Not good. They took a chest x-ray and after looking at that, a lung specialist said her left lung was now collapsing and had a pocket of air so he preferred to do a chest tube on the left side and let the lung fix itself and wait on the intubating (hopefully that won't happen). So they did another chest tube. This time the morphine was built up in her system and the pain has been much better. So now we hurry up and wait to see if this will stop the swelling. It could take more than a month for the air to absorb back into her system, but she surely shouldn't get worse if this will fix the problem.
That's all I know for now. Keep praying. Jenn
Sent: Thursday, February 28, 2008 12:31 PM
Mom is doing remarkably well (as of around 10am when I talked to Dad), all things considered. Started out with awful pain that they couldn't get under control. Around 4am she finally was able to get ahead of the pain with the morphine drip and then was able to rest. She was up in the chair eating breakfast this morning! She's very tired. Swelling is about 1/4" smaller today. The lung doctor still hasn't been in to see her today. Not sure if this will fix the swelling or not.
Sent: Thursday, February 28, 2008 1:05 AM
Didn't sleep much last night (Tues.)--had a lot of back pain and a headache. Around 4am she was finally able to sleep some. This afternoon, her swelling got worse (she gained an inch) and her right hand and arm starting swelling. Called the cardiothoracic doctor and he ordered another CT scan. Her right lung was much worse (collapsed farther and still the pocket of air), so they put a chest tube in. She's in a lot of pain, but her lung aired right back up, so that's a good sign. They're hoping this will solve the air swelling problem, we'll just have to wait and see. Hoping the chest tube won't have to be in more than a few days. The problem is going to be controlling the pain and avoiding another adverse reaction to the meds.
Sent: Tuesday, February 26, 2008 2:46 PM
They did another CT scan to check on her lung. The doctor that talked to them about the results said he does NOT recommend a chest tube. Said the left side is good and the right side is only a little bit down. GOOD NEWS! He wants her to get up and about a little more and that will help with her lungs and also maybe help drain some swelling in her face. She's still very, very swollen.
Sent: Monday, February 25, 2008 3:30 PM
They did a scan in her room this afternoon. Had to take the trach out b/c it was too small to put the scope through. It showed there was NOwhere the air was getting out (no punctures or tears or anything). He went way down and clear up into her vocal chords. He feels that the previous balloon trach wasn't big enough. So he put one in with a bigger cuff/balloon. He's hopeful that this will fix things. It will take at least 2 weeks for the swelling to come down. He said if he comes back tomorrow and she hasn't swollen any more, he'll consider that improvement. Of course, with all they did this afternoon, she's swollen even more than earlier today. Sooo, this will hopefully work. Dad says she can't get much bigger at this point.
Sent: Monday, February 25, 2008 10:09 AM
She had a decent night last night. Dr. Hiatt (oncologist) came to see her early this morning and he's fine with starting the chemo today. He said it will only attack specific tissues and won't make her sick, so he had no problems with starting her on it today. She is/will be moved to the south side of the 8th floor. Yeah for positive!! :)
Sent: Sunday, February 24, 2008 3:26 PM
Bad night last night--a combination of the meds they gave her caused her to have severe hallucinations. Not much sleep. They put another trach in as well. This one has a balloon on the end to block off any air except thru the trach. This way, hopefully, it will stop the air getting under her skin and that swelling will finally reduce. With this trach she can't talk at all. It might be in for several weeks, just depends on how long it will take to resolve the air problem.
Sent: Saturday, February 23, 2008 1:31 AM
The swelling (most of it) is from air under her skin. Supposedly common with trachs, but we're thinking the ER doc might have punctured something when he put the new trach in Wed. morning b/c she didn't have this much or this kind of swelling until after that. Could just heal on its own, might have to be surgically fixed and be hard to keep closed. Or might have to let the air out (meaning, I assume, they poke a hole and let the air out for lack of proper wording!!). She's not having much pain with this, just incredibly uncomfortable. Her doctor put her in the hospital to make sure the air doesn't go below the chest. As she told her pastor tonight, this is the first time in her life her nose has looked so small! (I never thought she had a big nose??). That's what I know so far. Thanks again for praying.
Sent: Friday, February 22, 2008 3:45 PM
She's back in the hospital :( After getting the new trach in Wednesday, she continued to swell at a rapid rate. As she said, her face looks like the Good Year blimp. It's pretty bad. Doctor wanted to see her, and decided to admit her. Doesn't know what's causing the tissues to swell so badly. Ordered a chest x-ray. He said there was obviously air under her skin that is causing some of the swelling. So that's where we're at with things. We continue to covet your prayers. This has been a very long and drawn out ordeal with seemingly everything that can go wrong, going wrong.
Date: Wed, 20 Feb 2008 14:37:56 -0600
Well, made a trip via ambulance middle of night. Her trac came partially out and we couldn't get it back in. ER Dr put in the new metal one that Dr Morgan was going to put in today. Very painful since it was out for a while. Seeing Dr Morgan this afternoon. Maybe one of these days will settle in and be back to half way normal..... Cecil
Sent: Monday, February 18, 2008 8:55 PM
Subject: Mom update
She's on her way home! Test results showed same as before-no cancer, just over-active lymph nodes. He thinks the b-cell chemo will work. She gets a stainless steel trach put in Wed--it will be much smaller, almost flush w/ her neck. Pray that everything goes okay at home, that we'll be able to keep the swelling and pain under control.
Sent: Friday, February 15, 2008 11:54 AM
This is Jenni. Sorry if you get a duplicate email from Dad. Anyway, they just saw the doctor and he wants to keep her another day--she had quite a bit of pain yesterday and the medicine that finally took care of it, she won't be able to have at home. So, he feels more comfortable (as do Dad & I) having her stay another day. The doctor usually comes around in the mornings, so hopefully she'll be discharged before too late in the day.
Sent: Monday, February 11, 2008 10:27 PM
Well.... When the doctor does the biopsy wed he wants to insert a trac - temporarily for a backup since she is still swelling in the throat. Not something we are wanting but she does need to get sleep and she can shut it off during the day and turn on at night... We just know that God is in control.. Cecil
Sent: Wednesday, January 16, 2008 2:11 AM
Took Nona in with chest pain and shortness of breath. Did several tests and all were negative. Decided to go ahead with the heart cath to make sure it wasn't a problem there. That also showed negative, Dr said her heart was in good shape, valves, arteries, etc. Praise God. So we will watch the chest pain and when it flares up again will see what Dr says.... Will have the iodine radiation done in 2 weeks, they don't want to change her meds on that until the radiation - so she will be tired and wore out for another 2 weeks
Sent: Sunday, January 13, 2008 12:44 AM
This is Jenni. Wanted to let you know what is going on with Mom...she's been having trouble w/ her heart and breathing the last several days. Fast, erratic heart beat, hard to breathe, etc. She finally went to ER this afternoon. The doctors think it is just related to her thyroid, but they are keeping her tonight (Sat.) and are doing a stress test in the morning. She is trying to get her iodine treatment scheduled for next week since she's having so much trouble, with the heart/breathing and also with just being extremely tired. Anyway, the consensus seems to be that once she can get her thyroid medicine at the right level (they don't want to up the dose before she gets the iodine treatment b/c then it will take too long to get it out of her system so the radiation can kill off the tissues properly), the issues with her heart and breathing will go away. Just wanted to let you guys know so you can be praying for her. Dad is staying with her tonight and we're all planning to go see her in the morning. It took a long time to get the results from all the tests, so it was late when she got settled in her room. I'll try to update you again tomorrow after we hear the results of the stress test.
Take the thyroid out…. (this was removing the cancerous thyroid)
Sent: Thursday, November 29, 2007 10:51 AM
We arrive at hospital 9:15 am and surgery will be around 10 - 10:15 am.
Long before this (before Jacob was born Aug. 31st actually), they'd done 2 biopsies on her lymph nodes in her neck to find the problem causing the swelling. That's when they found the thyroid cancer. So this all really started May/June (??) 2007, if not earlier.