Now I know how a YoYo feels. This has been one of the most frustrating experiences!!!
We were discharged late Tuesday. I had met with the continuing care nurse, had a bag of supplies to take home and had enough of Ben`s medication for 2 weeks. It was my understanding that home care was to arrive between 2000 and 2100 to give his medication.
Tuesday night NO one showed up!!! I waited until 2200 and called the only number I had for home care. It was a useless number that was only answered from 0800-1600 each day. I eventually had to give in and wake the other kids up and leave them at my mum`s. We went to Valley Regional where the story only got worse. The nurses were unable to flush the PICC line and were also unable to get blood return. After many failed attempts a peripheral IV was started and Ben finally got his medications. I was instructed to call home care to see if they could come give Ben`s next dose of medication. I tried all morning with no luck. By noon I decided to head back to Valley Regional so his next medications could be given. Before I left I called Lynne in Dr. Hong`s office to explain our situation. During the 5 hour wait at Valley I heard back from Lynne and it turned out Dr. Hong wanted us readmitted. The nurses at Valley were unable to give his medication, somehow pulled out the one IV he had and were unable to start another.
Once arriving at the IWK the nurse tried the PICC Line and it worked PERFECTLY!!!!!! Flushed easily AND had great blood return. We were discharged again Thursday. This time Home Care was to show up. Which they did however once again the PICC line would not get blood return. After over an hour of trying and several phone calls to the IWK the home care nurse gave up. I made arrangements for Harrison and Victoria then took Ben back to Valley. They did not want to see him and thought we should go right to the IWK. Which I did. We were once again readmitted through the Emergency department and Dr Bezuhly would be following Ben.
So here we are again. The PICC functioning to give the medications and still where it was according to an X-Ray. VRH and home care won`t take him without blood return, however the doctors don`t want to mess with the PICC or try a new one as that is something poor little Ben does not need right now. So we are here...for how long we don`t know. Over the weekend for sure and probably the holiday.
I just want to go home :(
Sunday, May 20, 2012
Tuesday, May 15, 2012
Ducks in a Row...
I have my ducks in a row....the doctors have their ducks in a row.....home care however is another story!
Yesterday was beyond frustrating. I was promised we could go home...but alas no...
Ben had to have his PICC repositioned, which also entailed yet another X-ray. Ben's medications have been switched to stronger ones twice a day but they make him sick, ID checked him out via swabs to make sure he wasn't really sick, so far all have come back negative. Hopefully that means his isolation precautions will be lifted this morning. We are going stir crazy in here!!
Last night Ben had a bad med line which caused the connection to his PICC to blow and bleed all over me. I got my first experience clamping and covering a blown line..yay me. At least I am confident I know what to do if it happens at home.
So now we are sat here waiting....with the same promises as yesterday...that we will get to go home and will be there sooner rather than later.
Sigh....
Sunday, May 13, 2012
Our "Home" Away From Home...
Thank You Child Life for finding me great toys to use while I'm here :)
Finally feeling up to having some play time :)
Our Room
Ben's bed (with his bouncy chair in it)
My so called "comfy" chair:
My bed and fridge:
The View....
Bathroom door:
TV and closets
Bathroom view one
Bathroom view two
So...
...we are still waiting to see what the final word on the PICC line is.
The radiologist was able to see it (FINALLY) BUT it isn't down all the way where they would like it. This may or may not be a problem, as Ben only needs it for antibiotics and not chemo nor TPN.
The doctors are supposed to make up their minds this afternoon so that the PICC can be tried.
The plan is IF we can use the PICC line as placed now to start the paperwork to get us HOME!!
I will be doing almost all the care myself however we will have to get private nursing care as well, and that may take a little bit of arranging.
There is no definite plan but things are starting to move in the home direction. Even though we are going home...the next 6-8 weeks are going to be really hard I think.
I will update more later when I know more.
The radiologist was able to see it (FINALLY) BUT it isn't down all the way where they would like it. This may or may not be a problem, as Ben only needs it for antibiotics and not chemo nor TPN.
The doctors are supposed to make up their minds this afternoon so that the PICC can be tried.
The plan is IF we can use the PICC line as placed now to start the paperwork to get us HOME!!
I will be doing almost all the care myself however we will have to get private nursing care as well, and that may take a little bit of arranging.
There is no definite plan but things are starting to move in the home direction. Even though we are going home...the next 6-8 weeks are going to be really hard I think.
I will update more later when I know more.
Saturday, May 12, 2012
PICC Line Trouble...
Before I begin with the events of the day I am going to explain some of the things I am talking about, mainly PICC lines, central lines and plain old peripheral IV (cannula).
A peripheral IV line (PIV or PVC) is the probably the most common type of IV access. It consists of a small catheter a few centimeters long that is inserted through the skin and into a peripheral vein. While we most often think of these IV lines being placed in the arms or hands, they may be placed in the leg or foot as well. In infants scalp veins can also be used.
This type of IV access cannot be used long term due mainly to the increased risk of infection. Depending on which country your from the national guidelines for replacing these IVs are somewhere in the range of 72-96 hours.
So the nurse very calmly explained that the PICC line in Ben's head is, at least for now, useless! Not sure what is in store for us tomorrow. The doctor isn't supposed to be in tomorrow but she assured the nurse she would be and that she would sit down with a radiologist and go over the X-rays. So for now there STILL is no plan....maybe tomorrow??
Happy Mother's Day to me huh??? Looks like mine will be spent in the IWK :(
A peripheral IV line (PIV or PVC) is the probably the most common type of IV access. It consists of a small catheter a few centimeters long that is inserted through the skin and into a peripheral vein. While we most often think of these IV lines being placed in the arms or hands, they may be placed in the leg or foot as well. In infants scalp veins can also be used.
This type of IV access cannot be used long term due mainly to the increased risk of infection. Depending on which country your from the national guidelines for replacing these IVs are somewhere in the range of 72-96 hours.
Central IV lines flow through a catheter with its tip within a large vein, usually the superior vena cava or inferior vena cava, or within the right atrium of the heart. This has several advantages over a peripheral IV:
- It can deliver fluids and medications that would be overly irritating to peripheral veins because of their concentration or chemical composition. Like chemotherapy drugs and total parenteral nutrition.
- Medications reach the heart immediately, and are quickly distributed to the rest of the body.
- There is room for multiple parallel compartments (lumen) within the catheter, so that multiple medications can be delivered at once even if they would not be chemically compatible within a single tube.
- Caregivers can measure central venous pressure and other physiological variables through the line.
Central IV lines carry risks of bleeding, infection, gangrene, thromboembolism and gas embolism. They are often more difficult to insert correctly as the veins are not usually palpable and rely on an experienced clinician knowing the appropriate landmarks and/or using an ultrasound probe to safely locate and enter the vein. Surrounding structures, such as the pleura and carotid artery are also at risk of damage with the potential for pneumothorax or even cannulation of the artery.
Peripherally inserted central catheter lines or PICC lines are used when intravenous access is required over a prolonged period of time or when the material to be infused would cause quick damage and early failure of a peripheral IV, and when a conventional central line may be too dangerous to attempt.
The insertion site requires better protection than that of a peripheral IV, due to the higher risk of serious infection if bacteria travel up the catheter. However, a PICC poses less of a systemic infection risk than other central IVs, because the insertion site is usually cooler and dryer than the sites typically used for other central lines. This helps to slow the growth of bacteria which could reach the bloodstream by traveling under the skin along the outside of the catheter.
The chief advantage of a PICC over other types of central lines is that it is safer to insert with a relatively low risk of uncontrollable bleeding and essentially no risks of damage to the lungs or major blood vessels. It is also externally unobtrusive, and with proper hygiene, care, and some good luck, can be left in place for months to years if needed for patients who require extended treatment.
The chief disadvantage is that it must be inserted and then travel through a relatively small peripheral vein which can take a less predictable course on the way to the superior vena cava and is therefore somewhat more time consuming and more technically difficult to place in some patients.
So now that everyone is up to speed we can proceed with the days "event".
Ben was to have his PICC line inserted today. This was a marathon event. Sites in his arms were numbed and we waited as Dr. Suzdec was sure she could get one in his arms. To cut a long story short she could NOT get one in his arms...nor his legs so she eventually got one in his head. The whole thing was an ordeal and I don't really want to relive it in text.
I was assured this was a "good" PICC line and that the formality of confirmation Xray was all that stood between us and the start of PICC care teaching.
Sound too good to be true??? Yeah....it was!!!
The first two X-rays the line could not be visualized. The second two X-Rays could not view it. FINALLY the third set of two X-rays were read and they too could not visualize the flipping line!!!!!
ARGH!!!
So the nurse very calmly explained that the PICC line in Ben's head is, at least for now, useless! Not sure what is in store for us tomorrow. The doctor isn't supposed to be in tomorrow but she assured the nurse she would be and that she would sit down with a radiologist and go over the X-rays. So for now there STILL is no plan....maybe tomorrow??
Happy Mother's Day to me huh??? Looks like mine will be spent in the IWK :(
Friday, May 11, 2012
And The Scans Are In!!
So we FINALLY got Ben's bone scan toady. The series of scans took a large portion of the day.
Ben had to be sedated and ended up needing some oxygen while sedated. The day was long but at least we had our test.
Not long ago I was told the scans are in. The scans were very good quality and showed a definite change on Ben's left side. The ENT crew, plastics and ID/Immunology are diagnosing this as a low grade bone infection and devising a course of treatment accordingly.
Ben will need long term IV antibiotics (6-8 weeks worth). This means the poor little guy will need to be sedated (again) taken downstairs and have a PICC line placed. He will spend some time in the PICU for monitoring then be sent back up here.
Once the PICC line is in place and I am taught how to care for it and issue the medications we can HOPEFULLY go home!
Once the PICC line is in place and I am taught how to care for it and issue the medications we can HOPEFULLY go home!
I will post more once they doctors have given me more information....**Sigh**
Doesn't look like we will make it home for Mother's Day :(
Thursday, May 10, 2012
I am slowly going CRAZY!!!
Today was a waste. Well not entirely but most of it was.
We were SUPPOSED to take Ben downstairs for a Bone scan...he was SUPPOSED to have and MRI and he was SUPPOSED to have 2 sets of repeat labs done.
It is 1730 and he has had 1 set of labs. Yup that's it ONE freaking set of labs!!!!!
The other tests were cancelled. They had Ben fast, had him dressed and changed, a new IV placed and everything. Once we got downstairs the radiologist decided it would be a pointless series of tests since he is so close post op and one set of tests had already been done. So they decided to wait and call ENT. ENT decided to cancel the tests until after we saw ID(infectious diseases)/Immunology.
Once we eventually saw ID/Immunology and they asked the same questions I have already answered 1,000,001 times, they decided.....(DRUM ROLL PLEASE)....to do the freaking bone scan and MRI. However because it was 1530 and Ben had eaten and DI was really busy we would have to wait until tomorrow. So we get to do this all over again tomorrow. Whoop dee freaking DO!
Dr. Mailman (the ID/immunology guy) isn't really sure what is going on. Because bone infections do not behave like other infections (mostly due to blood supply mechanics) they can fester a long time before a positive diagnosis. He things it is reasonable to assume that this is a real possibility. However no one is jumping to start antibiotics because once started, the antibiotics will be fairly long term. With this carries the risk of Ben having an active C. Diff infection, which to a little guy like him is very serious. So right now they are fighting over how to proceed. Apparently if the tests tomorrow come back inconclusive there is another more specific test that takes 2 days to complete. Not much information was given to me on that but that is another possibility. Dr. Mailman has not ruled out the idea that it could be some other secondary condition to Ben's Pierre Robin. Many of the other conditions cause arthritic changes that could result in the elevated inflammatory markers and would explain his pain. The new things that came up from this consult were as follows;
We were SUPPOSED to take Ben downstairs for a Bone scan...he was SUPPOSED to have and MRI and he was SUPPOSED to have 2 sets of repeat labs done.
It is 1730 and he has had 1 set of labs. Yup that's it ONE freaking set of labs!!!!!
The other tests were cancelled. They had Ben fast, had him dressed and changed, a new IV placed and everything. Once we got downstairs the radiologist decided it would be a pointless series of tests since he is so close post op and one set of tests had already been done. So they decided to wait and call ENT. ENT decided to cancel the tests until after we saw ID(infectious diseases)/Immunology.
Once we eventually saw ID/Immunology and they asked the same questions I have already answered 1,000,001 times, they decided.....(DRUM ROLL PLEASE)....to do the freaking bone scan and MRI. However because it was 1530 and Ben had eaten and DI was really busy we would have to wait until tomorrow. So we get to do this all over again tomorrow. Whoop dee freaking DO!
Dr. Mailman (the ID/immunology guy) isn't really sure what is going on. Because bone infections do not behave like other infections (mostly due to blood supply mechanics) they can fester a long time before a positive diagnosis. He things it is reasonable to assume that this is a real possibility. However no one is jumping to start antibiotics because once started, the antibiotics will be fairly long term. With this carries the risk of Ben having an active C. Diff infection, which to a little guy like him is very serious. So right now they are fighting over how to proceed. Apparently if the tests tomorrow come back inconclusive there is another more specific test that takes 2 days to complete. Not much information was given to me on that but that is another possibility. Dr. Mailman has not ruled out the idea that it could be some other secondary condition to Ben's Pierre Robin. Many of the other conditions cause arthritic changes that could result in the elevated inflammatory markers and would explain his pain. The new things that came up from this consult were as follows;
- Labs to be repeated to follow inflammatory markers, as well as his WBC and CBC results. Urine to be sent as well for testing.
- The bone scan, MRI and possible other 2 day test (that has yet to be named)
- Consult with Cardiology (apparently the inflammatory markers with the WBC levels can indicated heart issues) more than likely tomorrow as it is late now
- Consult with nephrology to make sure nothing is up with his kidneys ( a common problem with Pierre Robin babies)
- Consult with genetics, again
- Consult pain services to asses pain control
- Consult nutrition services (although not sure why as his weight is great)
So to sum up. I know NOTHING more than this morning. To be honest if anything the longer we are here the more questions that are brought up. Hopefully this mystery will be over soon.
I want to go home :(
Admission Day 3....
Yesterday was a bit exhausting. Most of it was spent waiting, although it wasn't really clear what we were waiting for.
Plastics and ENT were in again and decided yet more blood work would be needed. At supper time our nurse, Stacey, came in with another plan. More scans tomorrow, repeat labs and a consult with ID/Immunology. I had ENT recheck his ears since he was holding them. I didn't figure there was much point being admitted if it was a simple ear infection. After all babies/children with clefts are at risk for more ear infections and fluid build up. ENT took him downstairs to the clinic and had a good look with more specialized equipment. He saw no sign of infection, a tiny bit of fluid which he felt was insignificant and cleaned out Ben's ears since Ben was being so cooperative. So no infection and super clean ears...not really what I had wanted. At least with an ear infection we could have gone home.
I wondered why we had yet to start IV antibiotics since it looked like that was where this was heading yesterday morning. The poor nurse really couldn't help much. She didn't have the labs to review and all the information she had from the doctors is that his WBC didn't appear to point to infection although it was abnormal (I was confused as to what that means exactly) but all his other inflammation markers are "sky high". So for now the plan was to wait, watch and make attempts to control pain. The plus side is the aspirate from the lump was negative for infection so at least it isn't an abscess. Hopefully it is just scar tissue.
The pain control hasn't been great if I am honest. From his last exam at 1500 to 2320 last night he was so uncomfortable. He would scream, hold his jaw and ear, finally pass out from exhaustion only to wake a few minutes later screaming uncontrollably again. Our nurse over night, Amanda, tried the normal Advil and Tylenol protocol which did pretty much nothing. Amanda came in and allowed me to go downstairs to get a drink and some food since I had been in the room all day. She noticed he was clearly in pain and not just fussy. A late night consult with an ENT resident, whom to be honest looked scared to death of poor little screaming Ben, ordered Morphine. This allowed enough pain relief for sleep. He continued to moan and sob off and on all night in his sleep but he was able to rest.
Concerns are that it is early osteomyletis which hasn't yet taken hold as he was on strong antibiotics for so long, some other infection starting somewhere, some other disease process or genetic condition. There is also the possibility they won't find out what is causing it and we will have loads of follow up to try and figure it out.
The doctors aren't yet comfortable to send us home. Perhaps once they labs and new scans are in they may change their mind and let us go tonight or tomorrow morning. They seem to want answers as badly as I do.
For now Ben is back nothing by mouth. He will need to be sedated for his bone scan and MRI. The plan is to head downstairs at 11am for they dye injection then come back up here to wait for him to be sedated.
I will hopefully have more to update later on. Fingers crossed all goes well.
Plastics and ENT were in again and decided yet more blood work would be needed. At supper time our nurse, Stacey, came in with another plan. More scans tomorrow, repeat labs and a consult with ID/Immunology. I had ENT recheck his ears since he was holding them. I didn't figure there was much point being admitted if it was a simple ear infection. After all babies/children with clefts are at risk for more ear infections and fluid build up. ENT took him downstairs to the clinic and had a good look with more specialized equipment. He saw no sign of infection, a tiny bit of fluid which he felt was insignificant and cleaned out Ben's ears since Ben was being so cooperative. So no infection and super clean ears...not really what I had wanted. At least with an ear infection we could have gone home.
I wondered why we had yet to start IV antibiotics since it looked like that was where this was heading yesterday morning. The poor nurse really couldn't help much. She didn't have the labs to review and all the information she had from the doctors is that his WBC didn't appear to point to infection although it was abnormal (I was confused as to what that means exactly) but all his other inflammation markers are "sky high". So for now the plan was to wait, watch and make attempts to control pain. The plus side is the aspirate from the lump was negative for infection so at least it isn't an abscess. Hopefully it is just scar tissue.
The pain control hasn't been great if I am honest. From his last exam at 1500 to 2320 last night he was so uncomfortable. He would scream, hold his jaw and ear, finally pass out from exhaustion only to wake a few minutes later screaming uncontrollably again. Our nurse over night, Amanda, tried the normal Advil and Tylenol protocol which did pretty much nothing. Amanda came in and allowed me to go downstairs to get a drink and some food since I had been in the room all day. She noticed he was clearly in pain and not just fussy. A late night consult with an ENT resident, whom to be honest looked scared to death of poor little screaming Ben, ordered Morphine. This allowed enough pain relief for sleep. He continued to moan and sob off and on all night in his sleep but he was able to rest.
Concerns are that it is early osteomyletis which hasn't yet taken hold as he was on strong antibiotics for so long, some other infection starting somewhere, some other disease process or genetic condition. There is also the possibility they won't find out what is causing it and we will have loads of follow up to try and figure it out.
The doctors aren't yet comfortable to send us home. Perhaps once they labs and new scans are in they may change their mind and let us go tonight or tomorrow morning. They seem to want answers as badly as I do.
For now Ben is back nothing by mouth. He will need to be sedated for his bone scan and MRI. The plan is to head downstairs at 11am for they dye injection then come back up here to wait for him to be sedated.
I will hopefully have more to update later on. Fingers crossed all goes well.
Wednesday, May 9, 2012
Looks like we're staying
I honestly thought we'd go home today. While Ben is still very uncomfortable, and had a very LONG night... his fever is down. He has had numerous X rays and other tests. I figured we would go home to wait and see rather than wait here. That however is not the plan.
While no one is coming right out and saying what is going on, I'm thinking osteomyleitis. Or rather I am thinking that is what the doctors are thinking it is what it is. Both ENT and Plastics have been in today. More blood cultures were sent. It also looks like Ben will be having a bone scan, ultrasound and another MRI. Kind of sounds like that is what they are thinking.
Right now we are busy "waiting and seeing".....so for now we are staying...*sigh*
While no one is coming right out and saying what is going on, I'm thinking osteomyleitis. Or rather I am thinking that is what the doctors are thinking it is what it is. Both ENT and Plastics have been in today. More blood cultures were sent. It also looks like Ben will be having a bone scan, ultrasound and another MRI. Kind of sounds like that is what they are thinking.
Right now we are busy "waiting and seeing".....so for now we are staying...*sigh*
Tuesday, May 8, 2012
Readmitted....IWK
Here we go again....
Ben started feeling unwell on Sunday; fever, tired, cranky, and he isn't eating.. I thought perhaps he had picked up a virus somewhere in our many travels. Due to the fact Ben needs to be followed every few days by one doctor or another, we are ALWAYS in a hospital or doctors office around loads of sick people. However I was told that I needed to watch him closely for fever where he has had more surgery within the last month. When Ben's fever lasted more than 24 hours I called his local pediatric specialist.
This morning she reassessed Ben and found a small lump in his jaw along with his unusual fever. So a call by her to the IWK, a discussion with ENT and then Plastics resulted in the decision for us to be seen in clinic. Before I made it home to make arrangement's for Harrison to be looked after the peds office called. Apparently the IWK called her back and explained Ben would need monitoring and some tests and we may be admitted and to go prepared. The surgeons saw us pretty much right away. To be honest it was the first time I have waited less than 5 minutes! The decision was clear. Something is going on and it needs to be sorted sooner rather than later. Unfortunately as of right now no one seems to know what that may be!
While the incisions look fairly good there is still the concern of an underlying bone infection. So far Ben has had another MRI and a series of Xrays. Blood work will be done sometime after his medications wear off at midnight and again in the morning. Poor Ben is just so miserable!
Right now I don't know much. No one is saying much either. I just hope that we can go home soon!
The monitors are back and I can't say I am enjoying it. Hopefully tomorrow will bring good news and we can go home. Fingers crossed....
Thursday, May 3, 2012
Tuesday, May 1, 2012
We are still alive....kind of....
Please forgive me for being a bad blogger as of late. Life has been...complicated...for lack of a better word.
Ben has been recovering from his last surgery. While this should have been a much more straight forward recovery it really wasn't. Due to the fact the hardware on the left side of Ben's face was so difficult to remove, his pain control post op left a lot to be desired. He decided he didn't want to feed and things got thrown into a bit of a tail spin. The strong antibiotics were making him feel sick. His reflux medications didn't seem to help. He was placed back on morphine to control his pain and we ended up having to syringe feed to top up his feeds. Luckily all turned out okay and slowly over the past few weeks he has been weaned off the morphine, his antibiotics have stopped and his feeds have gone back to normal. We only had a couple trips to the city to be rechecked but over all things went fairly well.
Victoria has been sick. High fever, sore throat, body aches...the whole package really. She missed over a week of school. You know she isn't feeling well when she doesn't want to go to dance and unfortunately she was like that for a solid week. On a happier note her school choir sang at the Wolfville music festival and won Gold!!! She was very excited. Dance is winding down for another year and everyone is getting ready for the June recital. The costumes are beautiful and the photo shoots are coming up over the next few weeks.
Harry has had a double ear infection and a really sore throat. He has been on antibiotics as well and is finally getting back to his normal happy self.
Needless to say life has been busy, and to top it off I have been without a laptop for weeks. Now that my new work netbook has arrived things should be kept up to date a bit better.
Ben has been recovering from his last surgery. While this should have been a much more straight forward recovery it really wasn't. Due to the fact the hardware on the left side of Ben's face was so difficult to remove, his pain control post op left a lot to be desired. He decided he didn't want to feed and things got thrown into a bit of a tail spin. The strong antibiotics were making him feel sick. His reflux medications didn't seem to help. He was placed back on morphine to control his pain and we ended up having to syringe feed to top up his feeds. Luckily all turned out okay and slowly over the past few weeks he has been weaned off the morphine, his antibiotics have stopped and his feeds have gone back to normal. We only had a couple trips to the city to be rechecked but over all things went fairly well.
Victoria has been sick. High fever, sore throat, body aches...the whole package really. She missed over a week of school. You know she isn't feeling well when she doesn't want to go to dance and unfortunately she was like that for a solid week. On a happier note her school choir sang at the Wolfville music festival and won Gold!!! She was very excited. Dance is winding down for another year and everyone is getting ready for the June recital. The costumes are beautiful and the photo shoots are coming up over the next few weeks.
Harry has had a double ear infection and a really sore throat. He has been on antibiotics as well and is finally getting back to his normal happy self.
Needless to say life has been busy, and to top it off I have been without a laptop for weeks. Now that my new work netbook has arrived things should be kept up to date a bit better.
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