We are all glad that dad is home and healing there. He has been sick for 14 days straight, causing great concern. Radiation, diet, and medication were all ruled out as possible causes so more tests were ordered when dad returned to Toronto on Thursday to have his trach stitches removed. Although they tested for C difficile when he was in the hospital, they retested again. We're glad the results came back negative for that once more. We're not sure why this is happening but are relieved to see some improvement in the past day or two. Hopefully it's just an infection that was taking a while to clear up.
Now we have yet another concern to add to the list. The on again/off again, re-occurring pressure sore near dad's tailbone, that previously had him bed-ridden for two years, is back with a vengeance as of yesterday. Mom checks dad a couple times each day and it wasn't there in the morning before getting up for the day. By the time dad was transferred back to bed, it was broken open very badly. We really hope this isn't going to be the big deal it has become in the past.
I write semi-jokingly: Who ever is poking that voodoo doll out there, enough is enough!!
Sunday, September 18, 2011
Saturday, September 17, 2011
Friday, September 9, 2011
A VERY BIG SURPRISE!
The door bell just rang. Guess who was on the other side? No, seriously guess...
HE'S HOOOOOMMMMEEEEE! :D
HE'S HOOOOOMMMMEEEEE! :D
Good News!
The trach is out! We are so excited here this morning. An ENT just came by and took the trach out. Add this to the five hours sleep we got here last night and we are both ready to jump up and run around...well, wheel around in dad's case! Mom will be surprised when she arrives shortly. FINALLY some good news and progress moving us one step closer to going home! BIG smiles in this room right now! Dad was so excited he didn't mind the vampire lady taking blood this morning and adding one more hole to his vein!
Thursday, September 8, 2011
Wasted Day
It was a tad frustrating in our world today. Dad's nurse this morning was not our favourite. She apparently doesn't read charts because she showed up with a suppository. Thank goodness I was here to stop her! She also wrote in dad's chart that he is not to get any meds tonight in his feed tube...unbelievable!!! She also forgot to inform us of his cancelled CT scan until after the porter arrived and dad was transferred onto the gurney and wheeling down the hall to go! My favourite part of the morning was when she tried to tell mom that mom would not be bathing dad because it was the nurse's job. Even after we told her that mom does this by herself everyday for the past seventeen years, this nurse was still adamant that she would be the one doing his care. Needless to say, it was already done when the nurse returned a little later.
The neurosurgeon was by today and within minutes of his visit, ENT was shortly behind. They did not take the trach out this afternoon. With all of the chest thrusts and suctioning required right now, they felt it best to wait until the morning when the emergency team is in and he can be more closely monitored. So the plan is to get the trach out in the morning and then meet with the speech therapist for his swallowing assessment. It's looking more like a Saturday release now. We'll hope for that.
We're getting ready for some sleep here tonight. Now that dad can talk, he won't shut up, so I might have to tape his lips closed here soon. Just kidding. We didn't sleep much last night because just as we started to doze off, someone would come in to check vitals, take blood, give meds, empty IV, etc. Hopefully tonight will be a different story.
Thanks to all for continuing to check in. Dad appreciates all the comments you've been sending.
P.S. Dad says if he stays in here much longer, by the time he does get released, all the water he drinks will pour out all of the needle holes he's been pricked with, it will look like a sprinkler.
The neurosurgeon was by today and within minutes of his visit, ENT was shortly behind. They did not take the trach out this afternoon. With all of the chest thrusts and suctioning required right now, they felt it best to wait until the morning when the emergency team is in and he can be more closely monitored. So the plan is to get the trach out in the morning and then meet with the speech therapist for his swallowing assessment. It's looking more like a Saturday release now. We'll hope for that.
We're getting ready for some sleep here tonight. Now that dad can talk, he won't shut up, so I might have to tape his lips closed here soon. Just kidding. We didn't sleep much last night because just as we started to doze off, someone would come in to check vitals, take blood, give meds, empty IV, etc. Hopefully tonight will be a different story.
Thanks to all for continuing to check in. Dad appreciates all the comments you've been sending.
P.S. Dad says if he stays in here much longer, by the time he does get released, all the water he drinks will pour out all of the needle holes he's been pricked with, it will look like a sprinkler.
New Day, New Dilema
I just sent mom home from the hospital. She was waiting around to find out the results of the abdominal x-ray that occurred late tonight and to see if a CT scan would take place tonight as well. Dad's stomach has now distended and was bloated to the point where it was putting pressure on his diaphragm and making it difficult to breathe. The nurses want to get 7 cans of feed in him a day but he's not even tolerating 3 cans. The x-ray shows enlarged pockets in his colon but they are going to wait until morning for the CT as dad had fallen asleep and they don't feel it's an immediate concern. I am beginning to think that dad is just looking for attention!!! If only this were true.
His trach is currently plugged and if he makes it through the night without any complications then it could possibly come out tomorrow. After that, he has to stay another 24 hours for swallowing assessments and monitoring. We are still hoping for a Friday release but we'll have to wait and see what happens with his lung, and now his stomach.
The unit manager and nurse practitioner have been checking in many times today with mom. It is clear that mistakes were made and dad's case "slipped through the cracks" over the long weekend. Dad was supposed to loose the P.S.W. night sitter but one has been assigned to him anyway. I think they aren't wanting to ruffle any feathers with us right now!
His trach is currently plugged and if he makes it through the night without any complications then it could possibly come out tomorrow. After that, he has to stay another 24 hours for swallowing assessments and monitoring. We are still hoping for a Friday release but we'll have to wait and see what happens with his lung, and now his stomach.
The unit manager and nurse practitioner have been checking in many times today with mom. It is clear that mistakes were made and dad's case "slipped through the cracks" over the long weekend. Dad was supposed to loose the P.S.W. night sitter but one has been assigned to him anyway. I think they aren't wanting to ruffle any feathers with us right now!
Tuesday, September 6, 2011
Always Something
Now that the long weekend is over and regular staff are back around, everyone is weighing in on what's been happening this past weekend. The neurosurgeon was surprised to see dad still here as he had ordered ENT to change the trach on Saturday (as we were originally told). He wasn't sure why the respiratory therapist was making these decisions because the purpose of dad's trach was the throat surgery, not a respiratory condition - an ENT responsibility. So within a couple hours dad's trach was changed right there in his room. Mom plugged the hole when I spoke to her and hearing his voice simply say "Hi Kim Kim" was the best sound I've heard in weeks. Finally some progress here. We are hoping that this trach will be removed by Wednesday.
Last night was another horrible night with dad. He required lots of suctioning and chest thrusts so an x-ray was ordered. Today we learned that part of dad's left lung has collapsed and he also has pneumonia. High doses of antibiotics were immediately started intravenously. Dad's "food" has finally been changed and we think the reaction to the old stuff is finally over. What a busy couple of days it's been for my mom who's been there for 36 hours straight (without sleep). Brad is taking over the night shift tonight as there is not a P.S.W. assigned to dad anymore (as he's out of the critical stage).
What an awful week but the end is in sight...just lots of hurdles to jump before we get there.
Last night was another horrible night with dad. He required lots of suctioning and chest thrusts so an x-ray was ordered. Today we learned that part of dad's left lung has collapsed and he also has pneumonia. High doses of antibiotics were immediately started intravenously. Dad's "food" has finally been changed and we think the reaction to the old stuff is finally over. What a busy couple of days it's been for my mom who's been there for 36 hours straight (without sleep). Brad is taking over the night shift tonight as there is not a P.S.W. assigned to dad anymore (as he's out of the critical stage).
What an awful week but the end is in sight...just lots of hurdles to jump before we get there.
Monday, September 5, 2011
More Delays
A discouraging day for mom and dad today as a visit from the respiratory therapist informs another step on the road to speaking... The trach dad currently has in does not have any holes to allow air flow when plugged which means they will have to change his trach to one that has the tiny holes before they can cap it. This means dad will be in the hospital longer than we thought. Dad has also been sick all day, reacting to the feeds, a new issue to now deal with. What a crappy situation. Due to this latest development, mom will be staying with dad tonight.
The good news (because we have to find some in here somewhere) is that dad did not require much suctioning today. Also, the new pain meds are allowing him to sleep and relax a little more. Thank goodness for that.
The good news (because we have to find some in here somewhere) is that dad did not require much suctioning today. Also, the new pain meds are allowing him to sleep and relax a little more. Thank goodness for that.
Sunday, September 4, 2011
Recovery Mode
Dad was pretty out of it for most of the day. He doesn't even remember talking with my two aunts that came to pick me up this morning. The doctors reassessed the meds he is taking for pain. No more morphine! The effects of this drug took a while to wear off today, leaving dad confused and at times upset. He was so out of it today he didn't wake up while being transferred back to the air bed! It's possible that he might get his trach corked tomorrow but I will believe that when it happens. I expect dad to be here in the hospital until at least Wednesday or Thursday. I am back in staying with dad now until my brother gets here to take over the night shift. He is asleep now and hopefully remains that way. The doctor that saw dad today said that dad needs a good two full days of solid sleep to help build back some strength. It's going to be so hard to leave here later tonight to head back to my own home. I'm not sure how I will pull out of personal mode and back into professional one...sigh. Can't wait for this ordeal to be over!
A Hard Days Night
It was a brutal night here with dad. I'm not sure why but anxiety was high and sleep was not happening. He needed to be suctioned quite a bit and the meds weren't doing anything to relax him. In fact, it made him more agitated. Most of what was going on was "in his head" and I wonder if he should be getting morphine anymore because it's messing him up more than it's helping. At 5:15 when he was given his regular meds, he was finally able to relax and has now been sleeping for the past two hours. He is so exhausted... Sure hope we hear something about this damn trach today.
Saturday, September 3, 2011
Another Day Down
Last night dad slept the longest since he's been here. I'm glad that I stayed as he was able to relax enough to rest. Not much occurred here today. There was less suctioning required than yesterday. We brought in his wheelchair but he didn't get up today. It took a really long time to run through the feeds today as they had it set up to run super slowly. Still no word on the trach at this point. It's all a waiting game over the long weekend. I am staying with dad again tonight in hopes that he will get more sleep. We will keep you updated as more information becomes available. Thanks for checking up on us.
Friday, September 2, 2011
♬ I Think It's Going To Be A Long Long Time ♬
The charge nurse (after her meeting with mom) arrived with 4 signs to post around his little space in his tiny room that informs all staff that they need to move his foley catheter when he's turned. This morning when we arrived it was on the opposite side...a BIG NO NO as it could pull and damage his bladder. This is one mistake that definitely won't be repeated. His med order was actually correct this evening so hopefully this is finally sorted out.
Dad had a choking/coughing fit this afternoon and required a great deal of suctioning. We were about to call in the respiratory therapist but were able to calm him before that was necessary. His hips were really bothering him today and he felt it was because of the air bed. Although he's on one at home (a different kind though) it didn't seem to be working. We're not convinced it actually was the bed, but to settle him and try something new, we requested to have him transferred back to a regular one. We'll see if this is a decision we'll regret later or not. He's very paranoid about his trach and all day has been worrying about the night shift. A different P.S.W. is here now and he's afraid that she won't understand his requests as nobody seems to be able to read his lips. He has requested that I stay the night with him and how can I not comply? The fear and anxiety is worse than the pain and sore body he's experiencing. If I can ease his mind and reassure him that things are ok, then that's what I'll be doing. That being said, I think tonight is going to be a long, long night. Cue the music here. ;-)
We can only hope that tomorrow will be a better day.
Dad had a choking/coughing fit this afternoon and required a great deal of suctioning. We were about to call in the respiratory therapist but were able to calm him before that was necessary. His hips were really bothering him today and he felt it was because of the air bed. Although he's on one at home (a different kind though) it didn't seem to be working. We're not convinced it actually was the bed, but to settle him and try something new, we requested to have him transferred back to a regular one. We'll see if this is a decision we'll regret later or not. He's very paranoid about his trach and all day has been worrying about the night shift. A different P.S.W. is here now and he's afraid that she won't understand his requests as nobody seems to be able to read his lips. He has requested that I stay the night with him and how can I not comply? The fear and anxiety is worse than the pain and sore body he's experiencing. If I can ease his mind and reassure him that things are ok, then that's what I'll be doing. That being said, I think tonight is going to be a long, long night. Cue the music here. ;-)
We can only hope that tomorrow will be a better day.
About To Blow A Gasket
I apologize in advance for the emotionally charged post that you are about to read. I also want to preface my rant by saying that I have great respect for this facility, the programs, and staff here at this hospital (although it will not appear so when I begin venting). This post will most likely be much more "personal" than "factual"...
We still have not sorted out the med mess here. Despite many discussions about dad's bowel routine (we call "treatment"), they are still getting it wrong. A 'treatment' usually takes 2-3 hours and occurs every other day, and is hard on dad's hips/butt (due to the H.O.). Since dad hasn't eaten anything all week, mom does not want to do a 'treatment' until Saturday. Why put him through that when there won't be any result? It took almost 3 days to get his feeds sorted out! We've discussed this with each new nurse and all other people working on dad's case the past few days since coming out of ICU. Last night they gave dad one of the meds he takes the day before 'treatment' day. Mom caught this but was too late (and not that big of an issue). She stressed at that point that there WOULD NOT be a 'treatment' done until Saturday. Today just after we arrived, the nurse shows up with a suppository and was ready to begin a 'treatment'!!! Insert choice four letter words here. We don't understand why these communication issues are happening. EVERY appointment over the past 2 months (urologist, radiologist, neurologist, E.N.T., etc) has started with sharing the med list/routine. Every single person we've been in contact with here has heard my mom talk about this. It's so hard having to watch my mom fight and go over people's heads to make sure my dad is getting the (individualized) care that he needs. The common response is "that is our routine here" but dad is not "routine" in any sense of the word. Anyone that knows our situation knows that anything and everything that can be unique and unusual occurs with my father. We feel like we are always bitching and coming across as nasty or mean. It's not enough to have to deal with the physical and medical issues, we also have to argue, rant and rave, and get loud for anyone to listen. It's awful. This is not who we are...but who we are forced to be to advocate for dad.
Dad had a horrible night and did not sleep. The poor man is so exhausted it's not funny. As soon as we arrived this morning and dad's security blanket (a.k.a mom) was here, he could relax and fall asleep. For the past 3 hours he has slept the most (and deepest) since surgery. The wonderful P.S.W. stayed longer than her 12 hour shift until we arrived because dad had such a hard night. He said that he wouldn't have made it through the night without her. We are soooo grateful.
The respiratory therapist was here this morning and deflated the balloon in dad's trach. This is one step closer to being able to talk again. Mom is currently having a meeting with the charge nurse to go over dad's file and (hopefully) get everything sorted out. We hate having to 'go over heads' but these mix ups need to stop and we need to stop repeating the same information over and over and over.
Stay tuned to see how our "drama" unfolds...
We still have not sorted out the med mess here. Despite many discussions about dad's bowel routine (we call "treatment"), they are still getting it wrong. A 'treatment' usually takes 2-3 hours and occurs every other day, and is hard on dad's hips/butt (due to the H.O.). Since dad hasn't eaten anything all week, mom does not want to do a 'treatment' until Saturday. Why put him through that when there won't be any result? It took almost 3 days to get his feeds sorted out! We've discussed this with each new nurse and all other people working on dad's case the past few days since coming out of ICU. Last night they gave dad one of the meds he takes the day before 'treatment' day. Mom caught this but was too late (and not that big of an issue). She stressed at that point that there WOULD NOT be a 'treatment' done until Saturday. Today just after we arrived, the nurse shows up with a suppository and was ready to begin a 'treatment'!!! Insert choice four letter words here. We don't understand why these communication issues are happening. EVERY appointment over the past 2 months (urologist, radiologist, neurologist, E.N.T., etc) has started with sharing the med list/routine. Every single person we've been in contact with here has heard my mom talk about this. It's so hard having to watch my mom fight and go over people's heads to make sure my dad is getting the (individualized) care that he needs. The common response is "that is our routine here" but dad is not "routine" in any sense of the word. Anyone that knows our situation knows that anything and everything that can be unique and unusual occurs with my father. We feel like we are always bitching and coming across as nasty or mean. It's not enough to have to deal with the physical and medical issues, we also have to argue, rant and rave, and get loud for anyone to listen. It's awful. This is not who we are...but who we are forced to be to advocate for dad.
Dad had a horrible night and did not sleep. The poor man is so exhausted it's not funny. As soon as we arrived this morning and dad's security blanket (a.k.a mom) was here, he could relax and fall asleep. For the past 3 hours he has slept the most (and deepest) since surgery. The wonderful P.S.W. stayed longer than her 12 hour shift until we arrived because dad had such a hard night. He said that he wouldn't have made it through the night without her. We are soooo grateful.
The respiratory therapist was here this morning and deflated the balloon in dad's trach. This is one step closer to being able to talk again. Mom is currently having a meeting with the charge nurse to go over dad's file and (hopefully) get everything sorted out. We hate having to 'go over heads' but these mix ups need to stop and we need to stop repeating the same information over and over and over.
Stay tuned to see how our "drama" unfolds...
Thursday, September 1, 2011
A Heavy Heart
It was awful leaving dad tonight. The effects of the surgery and radiation (as warned) kicked in late this afternoon and dad was very uncomfortable and in pain. It's so hard to see him this way. He's very unhappy with his new specialized bed. We're not sure if it really is the bed or just the discomfort he is feeling from the surgery and radiation. I wouldn't be surprised if we have to change back to the regular bed tomorrow.
After discussions with literally 10 different health professionals (nurses, dietitian, pharmacist, etc) we STILL had mix ups with meds tonight. I'm not sure why this is happening because we've shared the med list so many times, with so many people, that it shouldn't be a concern. This is when I am extra thankful that my mom is so "in tune" and knows her stuff because she caught mistakes simply by the colour of the liquid (since his pills are still being crushed and added to liquids). It's very frustrating and makes us fearful to leave him at all!
Thankfully the same P.S.W. that was with him last night is there again tonight. She's really nice and dad likes her. This is reassuring to us as we left him with lumps in our throat and tears in our eyes. I have a feeling that the next couple of days are going to be like this...not fun. :(
After discussions with literally 10 different health professionals (nurses, dietitian, pharmacist, etc) we STILL had mix ups with meds tonight. I'm not sure why this is happening because we've shared the med list so many times, with so many people, that it shouldn't be a concern. This is when I am extra thankful that my mom is so "in tune" and knows her stuff because she caught mistakes simply by the colour of the liquid (since his pills are still being crushed and added to liquids). It's very frustrating and makes us fearful to leave him at all!
Thankfully the same P.S.W. that was with him last night is there again tonight. She's really nice and dad likes her. This is reassuring to us as we left him with lumps in our throat and tears in our eyes. I have a feeling that the next couple of days are going to be like this...not fun. :(
A Special Message from Dad
This message is specifically for the Montreal fans (you know who you are) that have been posting comments on this site. Dad says STOP SWEARING...don't use fowl language such as the H-word!
Sense of humour in tact? Check!
Sense of humour in tact? Check!
So Far A Much Better Day
Mom and I arrived this morning and were very pleased to see dad looking relaxed. He slept through most of the night and has had a few naps throughout the day. Lip reading is a little easier today as he's more alert when he's trying to talk to us. The neurosurgeon came by today to talk about next steps. Dad's trach SHOULD come out on Saturday and then he needs to stay for another day to be monitored and assessed for swallowing....but this is the long weekend coming up and many of the specialists aren't in the building, so we're not exactly sure if it will happen on this schedule or not. We brought in dad's wheelchair today and got him up for half an hour. It was good for him to get a change of position and scenery. His specialized air bed arrived this afternoon so we are just about to get him back in that bed. His blood pressure has significantly dropped since getting up so we need to limit the time he's out of bed to short periods for now.
Mom continues to advocate for dad's care and each new nurse assigned to the case has to get the run down. It's amazing how many times she's had to share his med list since being here....pre-op, recovery, ICU, and now each nurse on the ward. The pharmacist just left and we THINK we've gotten it all straightened away now. It's been a struggle because one of dad's meds that he's been on for 17 years can not be stopped and he wasn't getting it....now he is thanks to her.
We've also had to speak directly to a dietitian because they still haven't been feeding dad. He got 15cc's per hour for a couple hours last night (whoop de doo) and then we had to get them to turn it off because he can't "eat" lying flat. They don't seem to understand the issue with dad's hips (not being able to sit up on an angle due to pressure on the hips) and thought he could be on continuous feeds throughout the night. The neurosurgeon stressed on day 1 that he needed nutrition and it's taken mom on their case to finally get this situation addressed. He will get increased dosages tonight until we leave and then tomorrow they will start a feeding routine a little more comparable to his regular eating schedule. Progress is being made.
We also had another "reunion" today as dad's first physiotherapist from 1994 stopped by to say hi. Dad recognized her voice before he even saw her. She joked that dad might want to punch her instead of visit as dad wasn't the kindest to her back then during those traumatic times! Physiotherapists always get a bad rap (as they push the patient in order to improve) and anyone that knows my dad knows how uncooperative he could be back then. Dad was really glad to see her.
Tomorrow they should be reducing the air cuff in his trach and hopefully in a day or two we can cork the trach so he can talk for a while. This process will be much easier for him (and us) if he could talk. We are all pretty tired today...I guess the week's adventures have worn us out a little. If dad's bed were just a little wider I think mom and I would both curl up and nap with him!
Mom continues to advocate for dad's care and each new nurse assigned to the case has to get the run down. It's amazing how many times she's had to share his med list since being here....pre-op, recovery, ICU, and now each nurse on the ward. The pharmacist just left and we THINK we've gotten it all straightened away now. It's been a struggle because one of dad's meds that he's been on for 17 years can not be stopped and he wasn't getting it....now he is thanks to her.
We've also had to speak directly to a dietitian because they still haven't been feeding dad. He got 15cc's per hour for a couple hours last night (whoop de doo) and then we had to get them to turn it off because he can't "eat" lying flat. They don't seem to understand the issue with dad's hips (not being able to sit up on an angle due to pressure on the hips) and thought he could be on continuous feeds throughout the night. The neurosurgeon stressed on day 1 that he needed nutrition and it's taken mom on their case to finally get this situation addressed. He will get increased dosages tonight until we leave and then tomorrow they will start a feeding routine a little more comparable to his regular eating schedule. Progress is being made.
We also had another "reunion" today as dad's first physiotherapist from 1994 stopped by to say hi. Dad recognized her voice before he even saw her. She joked that dad might want to punch her instead of visit as dad wasn't the kindest to her back then during those traumatic times! Physiotherapists always get a bad rap (as they push the patient in order to improve) and anyone that knows my dad knows how uncooperative he could be back then. Dad was really glad to see her.
Tomorrow they should be reducing the air cuff in his trach and hopefully in a day or two we can cork the trach so he can talk for a while. This process will be much easier for him (and us) if he could talk. We are all pretty tired today...I guess the week's adventures have worn us out a little. If dad's bed were just a little wider I think mom and I would both curl up and nap with him!
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