The latest on Frank is that there's nothing going on. Nuh-thing!
Two weeks ago he stopped taking ALL medicine! YEAH!
The first week was when we needed to watch the closest. If an underlying infection had been there, it would take a few days for the antibiotics to start to clear out, then a few more for a potential infection to show itself.
We've seen the Surgeon and the Infectious Disease Specialist (last week in Salt Lake City). Frank was given a 5% chance of recurrence... which would likely have led to more surgery to remove more bone. Gratefully, there is just NO activity happening.
So, it looks like our Celebratory Trip to Arizona after all The Madness, will be able to happen and just on time.
Showing posts with label Infection. Show all posts
Showing posts with label Infection. Show all posts
Thursday, February 19, 2009
Friday, February 06, 2009
Infections and Super-Antibiotics
Original Post Name: Ototoxicity and Mycin Drugs
Changed on 23 Nov 2010 due to daily Spam.
Since leaving the hospital, Frank has been complaining that he "feels like (he's) going to fall down" and that he needs to sit or lie down.
It went on five weeks. Then, the doctor's heard me and suggested he have a hearing test. I made the appointment, and the dizzy spells disappeared. To quote the doctor "just like taking a car to the mechanic." Wednesday, I took Frank to an PhD Otologist.
Yet ANOTHER picture that has NOTHING to do with the topic of the post.
Just a picture of Frank's interesting way of eating his Biscuit. :D
His hearing is perfectly fine. His balance seems to be too.
The Otologist was actually surprised that we didn't have a hearing test done before starting the Vancomycin. The Mycin family of drugs is WELL known for causing ear problems. Apparently Ototoxicity (hearing and balance issues) is a very rare side-effect of Vancomycin... it's one of the Mycin drugs that is less-likely to cause the ear troubles. Still, the side-effecs are known to present themselves a full six to eight months after completing the drug therapy.
Since Frank was only on the Vancomycin 2 1/2 weeks, his chances are low, but still, he won't be "clear" until his birthday next October. In the meantime, I have to watch for obvious things (complaining of being dizzy, walking into things, and falling over) as well as more subtle things (swaying or loss of fine motor control).
I thought you'd like to know about the link between Mycin drugs and your ears... in case you should ever need or know of anyone who might need them.
Changed on 23 Nov 2010 due to daily Spam.
Since leaving the hospital, Frank has been complaining that he "feels like (he's) going to fall down" and that he needs to sit or lie down.
It went on five weeks. Then, the doctor's heard me and suggested he have a hearing test. I made the appointment, and the dizzy spells disappeared. To quote the doctor "just like taking a car to the mechanic." Wednesday, I took Frank to an PhD Otologist.
Yet ANOTHER picture that has NOTHING to do with the topic of the post.Just a picture of Frank's interesting way of eating his Biscuit. :D
His hearing is perfectly fine. His balance seems to be too.
The Otologist was actually surprised that we didn't have a hearing test done before starting the Vancomycin. The Mycin family of drugs is WELL known for causing ear problems. Apparently Ototoxicity (hearing and balance issues) is a very rare side-effect of Vancomycin... it's one of the Mycin drugs that is less-likely to cause the ear troubles. Still, the side-effecs are known to present themselves a full six to eight months after completing the drug therapy.
Since Frank was only on the Vancomycin 2 1/2 weeks, his chances are low, but still, he won't be "clear" until his birthday next October. In the meantime, I have to watch for obvious things (complaining of being dizzy, walking into things, and falling over) as well as more subtle things (swaying or loss of fine motor control).
I thought you'd like to know about the link between Mycin drugs and your ears... in case you should ever need or know of anyone who might need them.
Wednesday, January 14, 2009
Wound Care and Heavy Hitting Antibiotics
I thought I’d intersperse a few pictures of the progress of the site of Frank’s incision with an update on recent progress.
Last Monday we decided to try to eliminate the Pre-Dosing of Tylenol and Benadryl for Frank. We missed five doses, then, Frank started throwing up. The vomit continued for five times in the next 14 hours.
That night I got just four hours of sleep. That day, I took Frank to the ER to have blood drawn and to the local doctor. As we knew it would be, the doctor said “this (was) way out of (his) league”, but he was able to be the Eyes and Ears for the SLC Doctor, whom he called.
Through phone consultation, they were able to determine that since Frank’s GI and ENT, as well as heart and respiratory was clear, all the nausea and vomiting was an allergic reaction to the Vancomycin, because we hadn’t been pre-dosing. Experiment failed… much to Frank’s discomfort and our dismay.
Just as Frank’s stomach settled down, a night-time dose of Benadryl wound up missing it’s target (it fell out of his mouth) and was discovered late the next day. Soon, he was throwing up again. Just one session with one missed pill.
A few days later, with the vomiting under control, explosive diarrhea started. My guess is it was another allergic reaction, however, it happened on the weekend and on Monday morning, we encountered another set of troubles.
The nurse came to try to clear Frank’s line (again). When it didn’t work, she ordered some Activase, then started to do the weekly bandage change and cleaning of the site of the PICC line.
When we were in SLC last week, the Nurse was very quick about pulling off all the tape. This time, Frank asked our Home Health Care Nurse to go quickly. I think she went to quickly. It only took about 35 seconds to loosen the adhesive, but in the process, she also pulled the line out 1½”. Then, she tried to push it back into him (which I think was unclean and dangerous since it’s originally put in during surgery with Ultrasound and X-Ray’s for proper placement). It popped right back out.
At this point, the Nurse had me call the Infectious Disease Specialist. When I got them on the phone, instead of talking with the Doctor’s Assistant (like normal) the Doctor himself was retrieved. He said that because we’ve “been having so much trouble with the line, pull it and switch to oral.”
We called the Home Health Care Pharmacy. As we were telling them to wait to send the medicine, the delivery driver was pulling up, so, three doses of Vancomycin and one of Activase had to be scraped. Man! That Pharmacy is FAST!
By this time, the itching and discomfort, combined with fear, caused Frank to start crying and getting all-worked-up. We calmed him down and pulled the line. Immediately after we pulled the line, SLC called and told us to wait and pull it the next day, since NONE of the local pharmacies carried the new medicine in the proper form (liquid suspension). Since the line was already out, Frank wound up going 35 hours without a dose of any antibiotic.
Last night, Frank and I slept like the dead. It was the first time in over two weeks we were able to get a full-night of uninterrupted sleep. Heaven.
Today we started Frank on the Zyvox. Tonight, at 12:45 am, one hour after I “usually” get up, VOILA, I’m awake! After tossing about and starting to rouse Tom, I finally got up to write this. Hopefully, I can go back to sleep before 3:00 am!
Tonight I needed to give Frank a dose of the Zybox, tomorrow, we’ll have shifted him to a 4am – noon – 8 pm dosing schedule. It actually took Tom’s help to convince Frank to swallow his medicine tonight. He has to take 13mL, and it tastes awful. With him being practically asleep, I needed Reinforcements to insure that he didn’t spit it out on / at me… it’s “just” $1.90 per mL! Like Tom said, “you’d think that for $24.70 a dose, they could make it taste good!”
I was completely drained physically and emotionally after yesterday’s hour-and-a-half session with the nurse (after pulling the line, we still had to draw blood for weekly lab-work). I was also disturbed at the change. I’m a SERIOUS creature of habit, and we were suddenly being forced to change methods of application and types of drugs. Would Frank have another allergic reaction? Would he be susceptible to some of the more serious side effects of the new drug (namely bone marrow troubles and or blindness)? Only time would tell and we were suddenly being forced to figure it out.
I wonder if we should have another PICC line put in. This one had a lot of troubles, but were they caused by us (I overslept once and put in the Heparin and hour to late, then the nurse pulled too fast). Would another line slow down too? Is the risk of putting Frank under anesthesia greater than the risks from the Zybox?
What about the cost of all of it? The PICC Line costs “about” $5,530.82 per month, just for the pharmaceuticals and supplies, plus the insertion cost, the Home Health Care Nurse and Weekly Labworks.
The Zybox costs $285 per bottle (our co-pay portion is $140 every 3.8 days) or $2,565 for the course until we see the doctor in February. The original plan was PICC for 6 weeks then oral for 4-6 more weeks, so, will we be on this Zybox for 8-10 weeks? That’s a lot of time to be on such a Heavy-Hitter. Of course, the alternative is to stop taking all these strong medicines, in which case, the infection in Frank’s bone would likely prove fatal.
These aren’t things a parent should have to think about.
We all want our kids to be healthy.
Frank is healthy, except for this one “little problem” he was born with. I AM grateful that once treated this shouldn’t affect him, I just hope the side-effects are short-lived and limited to fatigue and gastro-intestinal woes.
Last Monday we decided to try to eliminate the Pre-Dosing of Tylenol and Benadryl for Frank. We missed five doses, then, Frank started throwing up. The vomit continued for five times in the next 14 hours.
That night I got just four hours of sleep. That day, I took Frank to the ER to have blood drawn and to the local doctor. As we knew it would be, the doctor said “this (was) way out of (his) league”, but he was able to be the Eyes and Ears for the SLC Doctor, whom he called.
Through phone consultation, they were able to determine that since Frank’s GI and ENT, as well as heart and respiratory was clear, all the nausea and vomiting was an allergic reaction to the Vancomycin, because we hadn’t been pre-dosing. Experiment failed… much to Frank’s discomfort and our dismay.
Just as Frank’s stomach settled down, a night-time dose of Benadryl wound up missing it’s target (it fell out of his mouth) and was discovered late the next day. Soon, he was throwing up again. Just one session with one missed pill.
A few days later, with the vomiting under control, explosive diarrhea started. My guess is it was another allergic reaction, however, it happened on the weekend and on Monday morning, we encountered another set of troubles.
The nurse came to try to clear Frank’s line (again). When it didn’t work, she ordered some Activase, then started to do the weekly bandage change and cleaning of the site of the PICC line.
When we were in SLC last week, the Nurse was very quick about pulling off all the tape. This time, Frank asked our Home Health Care Nurse to go quickly. I think she went to quickly. It only took about 35 seconds to loosen the adhesive, but in the process, she also pulled the line out 1½”. Then, she tried to push it back into him (which I think was unclean and dangerous since it’s originally put in during surgery with Ultrasound and X-Ray’s for proper placement). It popped right back out.
At this point, the Nurse had me call the Infectious Disease Specialist. When I got them on the phone, instead of talking with the Doctor’s Assistant (like normal) the Doctor himself was retrieved. He said that because we’ve “been having so much trouble with the line, pull it and switch to oral.”
We called the Home Health Care Pharmacy. As we were telling them to wait to send the medicine, the delivery driver was pulling up, so, three doses of Vancomycin and one of Activase had to be scraped. Man! That Pharmacy is FAST!
By this time, the itching and discomfort, combined with fear, caused Frank to start crying and getting all-worked-up. We calmed him down and pulled the line. Immediately after we pulled the line, SLC called and told us to wait and pull it the next day, since NONE of the local pharmacies carried the new medicine in the proper form (liquid suspension). Since the line was already out, Frank wound up going 35 hours without a dose of any antibiotic.
Last night, Frank and I slept like the dead. It was the first time in over two weeks we were able to get a full-night of uninterrupted sleep. Heaven.
Today we started Frank on the Zyvox. Tonight, at 12:45 am, one hour after I “usually” get up, VOILA, I’m awake! After tossing about and starting to rouse Tom, I finally got up to write this. Hopefully, I can go back to sleep before 3:00 am!
Tonight I needed to give Frank a dose of the Zybox, tomorrow, we’ll have shifted him to a 4am – noon – 8 pm dosing schedule. It actually took Tom’s help to convince Frank to swallow his medicine tonight. He has to take 13mL, and it tastes awful. With him being practically asleep, I needed Reinforcements to insure that he didn’t spit it out on / at me… it’s “just” $1.90 per mL! Like Tom said, “you’d think that for $24.70 a dose, they could make it taste good!”
I was completely drained physically and emotionally after yesterday’s hour-and-a-half session with the nurse (after pulling the line, we still had to draw blood for weekly lab-work). I was also disturbed at the change. I’m a SERIOUS creature of habit, and we were suddenly being forced to change methods of application and types of drugs. Would Frank have another allergic reaction? Would he be susceptible to some of the more serious side effects of the new drug (namely bone marrow troubles and or blindness)? Only time would tell and we were suddenly being forced to figure it out.
I wonder if we should have another PICC line put in. This one had a lot of troubles, but were they caused by us (I overslept once and put in the Heparin and hour to late, then the nurse pulled too fast). Would another line slow down too? Is the risk of putting Frank under anesthesia greater than the risks from the Zybox?
What about the cost of all of it? The PICC Line costs “about” $5,530.82 per month, just for the pharmaceuticals and supplies, plus the insertion cost, the Home Health Care Nurse and Weekly Labworks.
The Zybox costs $285 per bottle (our co-pay portion is $140 every 3.8 days) or $2,565 for the course until we see the doctor in February. The original plan was PICC for 6 weeks then oral for 4-6 more weeks, so, will we be on this Zybox for 8-10 weeks? That’s a lot of time to be on such a Heavy-Hitter. Of course, the alternative is to stop taking all these strong medicines, in which case, the infection in Frank’s bone would likely prove fatal.
These aren’t things a parent should have to think about.
We all want our kids to be healthy.
Frank is healthy, except for this one “little problem” he was born with. I AM grateful that once treated this shouldn’t affect him, I just hope the side-effects are short-lived and limited to fatigue and gastro-intestinal woes.
Sunday, January 11, 2009
Jack, By Special Request
The Great, Great Uncle, whose name he shares, has made a special request to see what our Youngest has been up to during all the on-goings with his big brother's surgery. And since I'm all-about People Pleasing, here's a fill of pictures of My Little Trouble Maker.
Jack has no problem wearing his clothes inside out, all.day.long. Actually, he has a problem if you try to convince him that maybe, possibly, he could turn them around!
Throughout the surgery and hosptial stay, Jack was almost ALWAYS right.by.Frank's.side.
By Frank's side except when Jack couldn't be, like here, in the Surgical Waiting Area for families.
Bringing a present as Frank woke up from the Morphine.
Showing off the Ronald McDonald House, where he kicked Daddy in the back two-nights-in-a-row in the "Twin" (says Daddy) "Full" (says Mommy) size bed.
Going on walks around the hospital and wearing the gloves, just because brother had to, so then, Jack must also hae some gloves.
Jack still gets up at his normal time, kicks Dad it the back for two hours, and then waits bedside for Frank to wake up.
Waiting on the "guest bed" while Mom packs up to go home from the hospital.
Watching the final blood draw at the hospital.
Always trying to help (and often being held back)!
Chilling at home.
Most days, Jack dresses himself.
"Helping" Grandad remove the Steri-Strips.
"Holding up" the stairs at our local Community College / Dinosaur Exhibit.
Watching the surgeon remove the stitches.
Playing with the camera outside the Ronald McDonald House.
There may be "no turning back" but, when Jack gets a look in his eyes like this, make CERTAIN that you DON'T TURN YOUR BACK on him! Mischief will soon follow in his wake!
Jack has no problem wearing his clothes inside out, all.day.long. Actually, he has a problem if you try to convince him that maybe, possibly, he could turn them around!
Throughout the surgery and hosptial stay, Jack was almost ALWAYS right.by.Frank's.side.
By Frank's side except when Jack couldn't be, like here, in the Surgical Waiting Area for families.
Bringing a present as Frank woke up from the Morphine.
Showing off the Ronald McDonald House, where he kicked Daddy in the back two-nights-in-a-row in the "Twin" (says Daddy) "Full" (says Mommy) size bed.
Going on walks around the hospital and wearing the gloves, just because brother had to, so then, Jack must also hae some gloves.
Jack still gets up at his normal time, kicks Dad it the back for two hours, and then waits bedside for Frank to wake up.
Waiting on the "guest bed" while Mom packs up to go home from the hospital.
Watching the final blood draw at the hospital.
Always trying to help (and often being held back)!
Chilling at home.
Most days, Jack dresses himself.
"Helping" Grandad remove the Steri-Strips.
"Holding up" the stairs at our local Community College / Dinosaur Exhibit.
Watching the surgeon remove the stitches.
Playing with the camera outside the Ronald McDonald House.There you go. A snapshot look at Jack for the past little bit... there's no turning back now!
There may be "no turning back" but, when Jack gets a look in his eyes like this, make CERTAIN that you DON'T TURN YOUR BACK on him! Mischief will soon follow in his wake!Saturday, January 03, 2009
Grandad's Visiting
Besides being wiped out from maintaining a medication schedule that includes me being awake from 11:30 pm to 2:30 am, my Father-In-Law came into town on New Year's Eve. We've been having a good time visiting with him and so, my posting just has not been happening!
Here I am with Jack at lunch today. He kept covering his face and I'd grab his hands and pull them away for a picture. I love how playful this shot is... even the fact that Jack's a blur because: A) Frank was taking the shot, and B) Jack was playing so much!
Here I am with Jack at lunch today. He kept covering his face and I'd grab his hands and pull them away for a picture. I love how playful this shot is... even the fact that Jack's a blur because: A) Frank was taking the shot, and B) Jack was playing so much!
Monday, December 29, 2008
Don't Let It Fool You
The fact that Frank's been in the hospital hasn't been that "hard" for him. Here. Let me show you...
We arrived home on schedule and met with the Home Health Care Nurse. Unfortunately (for me) a dose of medicine has been added, so, instead of 2 1/2 hour doses every 8 hours, we've got 2 1/2 hour doses every 6 hours. So, I now MUST get up in the middle of the night for a few hours every night and Frank must be connected to the IV Line 8 hours out of every 24!
Let's just hope and pray that when the cultures come back (Wednesday) they'll have grown a bug resistant to an oral antibiotic, and we can pull out the PICC line!
We arrived home on schedule and met with the Home Health Care Nurse. Unfortunately (for me) a dose of medicine has been added, so, instead of 2 1/2 hour doses every 8 hours, we've got 2 1/2 hour doses every 6 hours. So, I now MUST get up in the middle of the night for a few hours every night and Frank must be connected to the IV Line 8 hours out of every 24!
Let's just hope and pray that when the cultures come back (Wednesday) they'll have grown a bug resistant to an oral antibiotic, and we can pull out the PICC line!
Sunday, December 28, 2008
Today's Plan
Well, we got a little more sleep; at least we at the hospital did - at the Ronald McDonald House, Jack was waking up at 4:30 and no one in the room was allowed to sleep... hee-hee-hee.
This morning, we clean up; then pack and load the van. Prep with others for prompt discharge and Home Health Care. Blood draw at 11:30 am, IV Drip starts at noon, finishes at 2:30 pm. Then, we're outta here!
We'll stop and let Frank (and Jack) walk around Toys-R-Us for about 45 minutes before we are ON THE ROAD! So... by 4:00pm we're driving through the fresh snow in the mountains. Our goal is to reach home and meet the Home Health Care right at 8:00... in time for the next dose of medicine!
Which reminds me, I may need to pick up some Benadryl and Tylenol to give on the road... I'll find out how much Frank needs and see if I have enough in my portable Medicine Bag.
We're all feeling pretty good and refreshed, which is a good thing since we'll have another long travel day ahead of us. :D
This morning, we clean up; then pack and load the van. Prep with others for prompt discharge and Home Health Care. Blood draw at 11:30 am, IV Drip starts at noon, finishes at 2:30 pm. Then, we're outta here!
We'll stop and let Frank (and Jack) walk around Toys-R-Us for about 45 minutes before we are ON THE ROAD! So... by 4:00pm we're driving through the fresh snow in the mountains. Our goal is to reach home and meet the Home Health Care right at 8:00... in time for the next dose of medicine!
Which reminds me, I may need to pick up some Benadryl and Tylenol to give on the road... I'll find out how much Frank needs and see if I have enough in my portable Medicine Bag.
We're all feeling pretty good and refreshed, which is a good thing since we'll have another long travel day ahead of us. :D
Saturday, December 27, 2008
Our Day in the Hospital
Has been uneventful. Frank feels great. He’s been very cooperative and only complains a little when his PICC line is connected and he has the oxygen sensor on his finger… he just doesn’t like the cords and lines.
He was given Rifampin this morning, which went fine, and as predicted, turned his pee a bright red-orange. Weird!
Right after he took the Refampin, the Infectious Disease Doctor called and said we should treat Frank for The Red Man Syndrome and slow down the dispersal of the Vancomycin… yes, he needs to stay on it, at least until they get some lab results back on just WHAT the bug(s) is. So, now, Frank gets Tylenol and Benadryl thirty minutes before his antibiotic, and then the Vancomycin is given over a TWO HOUR time period, three times a day. I’ve chosen a 4-6a, noon-2p, and 8-10p schedule for giving the medicine. When we get home, I’ll probably start going to bed right after Jack (at 8pm) and letting Tom give that dose, then I’ll get up and give him the 3:30 am pre-meds and the 4-6am dose. Hopefully, I’ll be able to give him the medicine while he’s sleeping and I can go in the next room and sew or something… we’ll see what the Home Health Care Machine and such is like. Maybe I’ll just sleep on his bedroom floor each early morning. :P
Let’s see. Tom came and spelled me this afternoon. I was able to go see the Ronald McDonald House, which was A.MAZ.ING and is worthy of it’s own post! Then, Jack and I went out and did a few “City Errands” before coming back around dinner-time.
Again, I’m VERY tired! Still haven’t caught up on the sleep. When Tom arrived at 8:30 this morning, he said I had big circles; I can't imagine what they look like now!
Oh yeah… we’re spending another night in the Hospital. Because of the allergic reaction, the blood draws were delayed. Frank needs three full doses and then two blood draws two hours apart, so, I’m not sure if the blood work will be done at 2 and 3:30 am or 10 and 11:30 am. Either way, we should be admitted in time to drive home during tomorrow’s projected storm, and then race to meet the Home Health Care Nurse and give Frank his NEXT dose of medicine.
{Can I rest yet? What about on Monday? Can I rest then?}
I think I’ll go find out when the blood draws are do and then go to bed.
PS: Pictures will have to wait until I'm back with my laptop that has an SD Memory card slot. ;)
He was given Rifampin this morning, which went fine, and as predicted, turned his pee a bright red-orange. Weird!
Right after he took the Refampin, the Infectious Disease Doctor called and said we should treat Frank for The Red Man Syndrome and slow down the dispersal of the Vancomycin… yes, he needs to stay on it, at least until they get some lab results back on just WHAT the bug(s) is. So, now, Frank gets Tylenol and Benadryl thirty minutes before his antibiotic, and then the Vancomycin is given over a TWO HOUR time period, three times a day. I’ve chosen a 4-6a, noon-2p, and 8-10p schedule for giving the medicine. When we get home, I’ll probably start going to bed right after Jack (at 8pm) and letting Tom give that dose, then I’ll get up and give him the 3:30 am pre-meds and the 4-6am dose. Hopefully, I’ll be able to give him the medicine while he’s sleeping and I can go in the next room and sew or something… we’ll see what the Home Health Care Machine and such is like. Maybe I’ll just sleep on his bedroom floor each early morning. :P
Let’s see. Tom came and spelled me this afternoon. I was able to go see the Ronald McDonald House, which was A.MAZ.ING and is worthy of it’s own post! Then, Jack and I went out and did a few “City Errands” before coming back around dinner-time.
Again, I’m VERY tired! Still haven’t caught up on the sleep. When Tom arrived at 8:30 this morning, he said I had big circles; I can't imagine what they look like now!
Oh yeah… we’re spending another night in the Hospital. Because of the allergic reaction, the blood draws were delayed. Frank needs three full doses and then two blood draws two hours apart, so, I’m not sure if the blood work will be done at 2 and 3:30 am or 10 and 11:30 am. Either way, we should be admitted in time to drive home during tomorrow’s projected storm, and then race to meet the Home Health Care Nurse and give Frank his NEXT dose of medicine.
{Can I rest yet? What about on Monday? Can I rest then?}
I think I’ll go find out when the blood draws are do and then go to bed.
PS: Pictures will have to wait until I'm back with my laptop that has an SD Memory card slot. ;)
Friday, December 26, 2008
Frank's Surgery
Thursday 25 December 2008 – Christmas & Prep Day
1100 – 1800 – Mom makes Hospital Gowns to prevent irritation to Frank’s sensitive skin (and to give HER something creative and relaxing to do while waiting for surgery day).
2000 – 2100 – Pack bags and put by front door
2330 - "Midnight Snack"
Friday 26 December 2008 – Surgery Day
Midnight – Mom & Dad to bed.
0500 – Mom Awake
0600 – Mom & Dad get up. Shower, load van, pack last few items.
0700 – Hit-the-Road – Three hour drive.
0720 – Electronic Highway Signage warns that Freeway is closed. Alternate is researched and traveled.
1000 – Arrive at half-way point (distance wise), normally would have arrived at destination by now.
1145 – Check-in Time at hospital.
1215 – Arrive at hospital (30 minutes late). Total travel time (3 hour trip) 6 hours, 15 minutes.
1315 – Surgery Time, wait about an hour.
1415 – Wait another 45 minutes… Mom and Jack go to Cafeteria for “lunch”.
1441 – Anesthesiologist arrives to take Frank. Surgery should take about an hour, but 90 minutes is reasonable. Dad and Frank are surprised, Jack and Mom RACE back upstairs to say “See You Later” to Frank.
1446 – As Mom, Dad, and Jack walk away, Frank is dancing around in the hall telling the doctor about his Stuffed Penguin’s Reversible Hospital Gown (that matches Frank’s two gowns.)
1535 – Dad goes to get something from the Van.
1546 – Surgeon arrives and Jack hi-jacks him showing off HIS Hospital Gown and matching dolls’ gown… doctor doesn’t even realize he’s suppose to be talking to Mom! Dad RACES back upstairs to talk with doctor.
1603 – PICC line in successfully … 27” long.
1620 – Dad and Jack head out for a break (and dinner).
1628 – Frank is ready for Mom.
1632 – Mom gets back to Frank, who woke up mad – yelling he was hurting and kicking his feet, so they gave him Morphine... and he crashed again.
1900 – As Dad is kissing him good-bye, Frank wakes and says “Is it over? I didn’t feel anything.” Dad told him that he’d need to stay at the hospital an extra night, and Frank ask if he “have to be hungry tomorrow too.” Did I mention that all day long Frank never complained about not being able to eat or about being hungry? He did get quivery-lipped and said “I just want my surgery to be done.”
1900 – 2000 – Frank eats… a lot! Water, crackers, ice cream, pancakes, peanut butter, and milk.
2030 – Frank doesn’t like all the “things” attached to him and wants to go for a walk.
2110 – Frank starts his antibiotic. We’ll need to administer it ever eight hours, for an hour at a time. HE HAS AN ALLERGIC REACTION to the Vancomycin – Red Man Syndrome – Flush, torso pain, crying and upset – Benadryl & Tylenol must change medicine and tell ANY and ALL doctors that he’s allergic to Vancomycin. This is not surprising in-the-least! Both sides of Frank’s family have allergies… drug, environmental, and food, so, a drug reaction is almost to be expected. Now though, I wonder how much longer we’ll have to wait to be discharged. They want three doses of his antibiotic in and two blood draws before we leave. It looks like we’ll be spending two days and nights here instead of just outpatient or one night. At least there’s a washer and dryer (for patients) down the hall. Also, we were blessed that my friend suggested and we got a room for Dad and Jack at the Ronald McDonald House… this cuts WAY down on our expenses! We also discovered the Parent Resource Center has free tickets to local museums and the zoo… to Dad and Jack are going to the Children’s Museum tomorrow after they visit in the morning.
All-in-all, after three months of troubles, and after Frank’s original surgery, I surprised myself with all my calm today. Right now, I’m so beat I can hardly keep my eyes open and I’m getting several headaches (different places are hurting), but, we’re waiting to hear back from the doctor about Frank’s reaction to the Vancomycin, so, I hardly want to go to sleep for them to wake me and be groggy… but maybe I will lie down.
PS: This post is going out the next day due to technical difficulties. Also, I just noticed that THIS is my 300th post! Wow!!!
1100 – 1800 – Mom makes Hospital Gowns to prevent irritation to Frank’s sensitive skin (and to give HER something creative and relaxing to do while waiting for surgery day).
2000 – 2100 – Pack bags and put by front door
2330 - "Midnight Snack"
Friday 26 December 2008 – Surgery Day
Midnight – Mom & Dad to bed.
0500 – Mom Awake
0600 – Mom & Dad get up. Shower, load van, pack last few items.
0700 – Hit-the-Road – Three hour drive.
0720 – Electronic Highway Signage warns that Freeway is closed. Alternate is researched and traveled.
1000 – Arrive at half-way point (distance wise), normally would have arrived at destination by now.
1145 – Check-in Time at hospital.
1215 – Arrive at hospital (30 minutes late). Total travel time (3 hour trip) 6 hours, 15 minutes.
1315 – Surgery Time, wait about an hour.
1415 – Wait another 45 minutes… Mom and Jack go to Cafeteria for “lunch”.
1441 – Anesthesiologist arrives to take Frank. Surgery should take about an hour, but 90 minutes is reasonable. Dad and Frank are surprised, Jack and Mom RACE back upstairs to say “See You Later” to Frank.
1446 – As Mom, Dad, and Jack walk away, Frank is dancing around in the hall telling the doctor about his Stuffed Penguin’s Reversible Hospital Gown (that matches Frank’s two gowns.)
1535 – Dad goes to get something from the Van.
1546 – Surgeon arrives and Jack hi-jacks him showing off HIS Hospital Gown and matching dolls’ gown… doctor doesn’t even realize he’s suppose to be talking to Mom! Dad RACES back upstairs to talk with doctor.
1603 – PICC line in successfully … 27” long.
1620 – Dad and Jack head out for a break (and dinner).
1628 – Frank is ready for Mom.
1632 – Mom gets back to Frank, who woke up mad – yelling he was hurting and kicking his feet, so they gave him Morphine... and he crashed again.
1900 – As Dad is kissing him good-bye, Frank wakes and says “Is it over? I didn’t feel anything.” Dad told him that he’d need to stay at the hospital an extra night, and Frank ask if he “have to be hungry tomorrow too.” Did I mention that all day long Frank never complained about not being able to eat or about being hungry? He did get quivery-lipped and said “I just want my surgery to be done.”
1900 – 2000 – Frank eats… a lot! Water, crackers, ice cream, pancakes, peanut butter, and milk.
2030 – Frank doesn’t like all the “things” attached to him and wants to go for a walk.
2110 – Frank starts his antibiotic. We’ll need to administer it ever eight hours, for an hour at a time. HE HAS AN ALLERGIC REACTION to the Vancomycin – Red Man Syndrome – Flush, torso pain, crying and upset – Benadryl & Tylenol must change medicine and tell ANY and ALL doctors that he’s allergic to Vancomycin. This is not surprising in-the-least! Both sides of Frank’s family have allergies… drug, environmental, and food, so, a drug reaction is almost to be expected. Now though, I wonder how much longer we’ll have to wait to be discharged. They want three doses of his antibiotic in and two blood draws before we leave. It looks like we’ll be spending two days and nights here instead of just outpatient or one night. At least there’s a washer and dryer (for patients) down the hall. Also, we were blessed that my friend suggested and we got a room for Dad and Jack at the Ronald McDonald House… this cuts WAY down on our expenses! We also discovered the Parent Resource Center has free tickets to local museums and the zoo… to Dad and Jack are going to the Children’s Museum tomorrow after they visit in the morning.
All-in-all, after three months of troubles, and after Frank’s original surgery, I surprised myself with all my calm today. Right now, I’m so beat I can hardly keep my eyes open and I’m getting several headaches (different places are hurting), but, we’re waiting to hear back from the doctor about Frank’s reaction to the Vancomycin, so, I hardly want to go to sleep for them to wake me and be groggy… but maybe I will lie down.
PS: This post is going out the next day due to technical difficulties. Also, I just noticed that THIS is my 300th post! Wow!!!
On Our Way
To Salt Lake for Surgery... and... the road's closed. We had a storm come through last night and the spot that's closed is prone to icy roads and high winds. We'll have to take an alternate route, which will add 1 1/2 hours to our 3 hour drive. We gave ourselves 4 3/4 hours to get there in time for Check-In.
Luckily, the surgeon knows were traveling from afar. So, if we're delayed too much, we'll call and probably Frank's surgery time will be pushed back some more.
Currently, windy and partially icy roads.
(PS: One nice thing about Tom's job is his laptop with mobile dial-up!)
Luckily, the surgeon knows were traveling from afar. So, if we're delayed too much, we'll call and probably Frank's surgery time will be pushed back some more.
Currently, windy and partially icy roads.
(PS: One nice thing about Tom's job is his laptop with mobile dial-up!)
Tuesday, December 23, 2008
What We've Scheduled
We’ve had a very long day of travels and lots of talking with medical personnel.
Frank will be having surgery on Friday, at 1:15pm. He was scheduled for 10:15, but we would have had to leave in the middle of the night or spent Christmas Night in a hotel, so, the Surgery Scheduler Rescheduled two other children to go in earlier. This is good for us, since we’ll be able to leave at 7am on Friday to go over.
During the removal of the wire and infected tissues (soft and or bone) a PICC line will also be put in. Because of the PICC line, Frank will need to spend (most likely just) one night in the hospital.
We already have a reservation for a nearby hotel, which Tom and Jack will stay at.
I’d thought we could care for Jack while Frank had his surgery, today I wondered more about that, but, since we don’t have many other options, I guess we’ll have to make it work. I will appreciate having Jack nearby, he’s just so crazy and wild and I get so stressed out with all the things I’m thinking of and trying to remember to ask. I know it’s not in Jack’s nature to just sit and be still, but at times like this, it would be nice if he could.
We’re driving home on roads covered in blowing snow with occasional ice. Tom was able to barter with his boss (he traded a vacation day to spend today doing “phone fixes” and physically take care of his calls tomorrow). I’ve been very glad to have Tom driving today!
The Infectious Disease doctor and his Physician’s Assistant and Nurse… I liked all of them. A lot. Even though we were there two hours, they were helpful and appreciative of my research (especially a set of 12 photos I’d made (and given to three other doctors) showing how Frank’s infection progresses).
What else… oh yeah, the PICC line. It will probably be in for six weeks… likely followed by another month of oral antibiotics. Frank will have to stop Hockey during this time, as well as no baths or swimming. Just quick, protected showers, and he CAN ice skate, but no contact. The line will be in his arm, and he’ll just have to be careful. If we REALLY want to, and things are going well, we could travel, but I’d have to keep Frank’s antibiotics refrigerated.
Frank is missing his Arizona family and wondering why they won’t be here while he’s having surgery. We’ll have to look forward and plan a trip (I was thinking February, but now, maybe March). We should be able to wait for the PICC to come out, and still catch part of Ren Faire and Spring Time in the Desert – which we love!)
I know I’m rambling, but I am very tired. the ID Dr confirmed that of the three Infection Samples, we haven’t had a good one yet. I have some names of the likely infection and new medicine. We’ll be stopping his antibiotic and actually HOPING for the infection to swell back up… to help the doctor identify all the area that need to be removed and also to help with testing for just WHAT this is… which will guide future antibiotic courses.
So, I’ll get you the technical names a bit later. For now, you know what’s going on and that surgery is planned for Friday.
Frank will be having surgery on Friday, at 1:15pm. He was scheduled for 10:15, but we would have had to leave in the middle of the night or spent Christmas Night in a hotel, so, the Surgery Scheduler Rescheduled two other children to go in earlier. This is good for us, since we’ll be able to leave at 7am on Friday to go over.
During the removal of the wire and infected tissues (soft and or bone) a PICC line will also be put in. Because of the PICC line, Frank will need to spend (most likely just) one night in the hospital.
We already have a reservation for a nearby hotel, which Tom and Jack will stay at.
I’d thought we could care for Jack while Frank had his surgery, today I wondered more about that, but, since we don’t have many other options, I guess we’ll have to make it work. I will appreciate having Jack nearby, he’s just so crazy and wild and I get so stressed out with all the things I’m thinking of and trying to remember to ask. I know it’s not in Jack’s nature to just sit and be still, but at times like this, it would be nice if he could.
We’re driving home on roads covered in blowing snow with occasional ice. Tom was able to barter with his boss (he traded a vacation day to spend today doing “phone fixes” and physically take care of his calls tomorrow). I’ve been very glad to have Tom driving today!
The Infectious Disease doctor and his Physician’s Assistant and Nurse… I liked all of them. A lot. Even though we were there two hours, they were helpful and appreciative of my research (especially a set of 12 photos I’d made (and given to three other doctors) showing how Frank’s infection progresses).
What else… oh yeah, the PICC line. It will probably be in for six weeks… likely followed by another month of oral antibiotics. Frank will have to stop Hockey during this time, as well as no baths or swimming. Just quick, protected showers, and he CAN ice skate, but no contact. The line will be in his arm, and he’ll just have to be careful. If we REALLY want to, and things are going well, we could travel, but I’d have to keep Frank’s antibiotics refrigerated.
Frank is missing his Arizona family and wondering why they won’t be here while he’s having surgery. We’ll have to look forward and plan a trip (I was thinking February, but now, maybe March). We should be able to wait for the PICC to come out, and still catch part of Ren Faire and Spring Time in the Desert – which we love!)
I know I’m rambling, but I am very tired. the ID Dr confirmed that of the three Infection Samples, we haven’t had a good one yet. I have some names of the likely infection and new medicine. We’ll be stopping his antibiotic and actually HOPING for the infection to swell back up… to help the doctor identify all the area that need to be removed and also to help with testing for just WHAT this is… which will guide future antibiotic courses.
So, I’ll get you the technical names a bit later. For now, you know what’s going on and that surgery is planned for Friday.
Saturday, December 20, 2008
Choices; choices!
Just when I'd given up on the Salt Lake City Surgeon, he called me. I left a message Tuesday morning, and he called back after 6pm on Thursday. The long-and-short of it is that after the Infectious Disease Appointment on the 23rd, if we have the all-clear to operate, he will operate on the 26th.
We could drive over that morning, do the surgery in the afternoon (about 30-45 minutes) and, if we feel up to it, drive Frank home that night. We'd probably spend the night in Salt Lake though and return the next day. There is, of course, a chance that Frank would spend the night in the hospital... but probably just a night.
Tom already has the 26-29 off of work (a rare thing to have 4 days in a row!) Since it's such a quick thing, Jack could go along with us.
So. Do we go to the highly recommended facility (in Denver) and wait about 3 more weeks for surgery, and a location further away (which means lots of drives for follow-up care this year). OR do we go to the closer facility, that has lost our tests and never follows up punctually, but they can take care of us in a few days, are closer for follow-ups, and the surgery would be on this insurance calendar year (where the deductibles are already paid). Also, in January, Jack's care would be more of a challenge and Frank and I would be away from home longer.
Which would you choose?
By way of Frank's current state... he's turning into the mess I've felt within myself for weeks. Yesterday we started to see yet another flare-up of his infection, which ruptured over the night and today (after cleaning) looks like a pin-needle hole into oblivion. Emotionally, he's even worse. Anyone who knows Frank knows that he has always been very sensitive and intuitive. As much as I think and talk about what's going on, there's really NO WAY to keep Frank in the dark. So. We keep him informed. The result is that since Thursday, when we heard the surgery could be in a week, every night and several times a day he breaks down crying and upset. He needs lots of cuddles and reassurance about whatever his latest concern is about his surgery.
Today we are going to the bookstore to look at the kids books on hospitals. I called around and found out that there are at least three such books in town. Funny thing about living in a small town... little things like going to get a book to comfort your child... they don't have them at the library, and it took 20 minutes for them to find even the few they have. I never thought of all these "little conveniences" that come with living in a city.
We could drive over that morning, do the surgery in the afternoon (about 30-45 minutes) and, if we feel up to it, drive Frank home that night. We'd probably spend the night in Salt Lake though and return the next day. There is, of course, a chance that Frank would spend the night in the hospital... but probably just a night.
Tom already has the 26-29 off of work (a rare thing to have 4 days in a row!) Since it's such a quick thing, Jack could go along with us.
So. Do we go to the highly recommended facility (in Denver) and wait about 3 more weeks for surgery, and a location further away (which means lots of drives for follow-up care this year). OR do we go to the closer facility, that has lost our tests and never follows up punctually, but they can take care of us in a few days, are closer for follow-ups, and the surgery would be on this insurance calendar year (where the deductibles are already paid). Also, in January, Jack's care would be more of a challenge and Frank and I would be away from home longer.
Which would you choose?
By way of Frank's current state... he's turning into the mess I've felt within myself for weeks. Yesterday we started to see yet another flare-up of his infection, which ruptured over the night and today (after cleaning) looks like a pin-needle hole into oblivion. Emotionally, he's even worse. Anyone who knows Frank knows that he has always been very sensitive and intuitive. As much as I think and talk about what's going on, there's really NO WAY to keep Frank in the dark. So. We keep him informed. The result is that since Thursday, when we heard the surgery could be in a week, every night and several times a day he breaks down crying and upset. He needs lots of cuddles and reassurance about whatever his latest concern is about his surgery.
Today we are going to the bookstore to look at the kids books on hospitals. I called around and found out that there are at least three such books in town. Funny thing about living in a small town... little things like going to get a book to comfort your child... they don't have them at the library, and it took 20 minutes for them to find even the few they have. I never thought of all these "little conveniences" that come with living in a city.
Wednesday, December 17, 2008
Where To Go
At the beginning of this, I contacted Frank's original surgeon. He was willing to consult on the phone and do the necessary surgery. Fast forward two months... when I talked with his office yesterday, the doctor's decided that Frank will need too much follow-up care for him to perform the procedure. Even when his nurse suggested we could stay in Arizona for six months, he said it's not enough. The likely-hood of needing long-term care for emergent and acute issues is too high. Also, if he operated, a closer doctor wouldn't want to provide follow-up care because of liability issues. So, as of yesterday, going to Phoenix is no longer an option.
The good thing about this is that it's made me keep asking and thinking... I just haven't been satisfied with the care out of Salt Lake (actually, I'm still waiting for them to call and schedule the surgery - it's been 24 hours since I called to schedule it). Along the way, I've discovered that The Denver Children's Hospital is one of the Top Ten for Children in America.
Also, my local Wyoming family contacted their pediatrician friend and I contacted my Arizona Ear Surgeon. Both of these people recommended the same surgeon out of Denver. I called his office and explained to the surgery scheduling nurse what we needed, she recommended two surgeons in the office who specialize in more of "facial plastics" than "just tubes and tonsils". Both of these doctors were also recommended by the Wyoming family pediatricians.
So. Frank has an consultation appointment on December 29th in Denver. He still has an appointment in Salt Lake City on December 23rd with Infectious Disease. I'll be calling Denver to see if they want to see him in their ID department or should I keep the appointment in Salt Lake.
As it turns out, Tom has December 26th-29th off (a RARE thing for him!) and so he may be able to go with us... if it looks like the weather will allow us to be back for him to work on the 30th. If a storm is pending though, I'll have to go alone and spend the night.
Ever since Mork & Mindy, I've always wanted to go to Denver (Boulder), although I'd prefer going for a reason besides surgery on my son, I'll still enjoy exploring a new place. Also, I'll have to go there frequently for follow-up care, and my brother's planning to move to Denver this year, so it will be nice to have a need to go there... I'll get to see my brother and his family more often than I normally would. How's that for looking for the silver lining?
I didn't think I knew anyone in Denver, but I've just remembered that a friend of ours whom we lived with while we were expecting Frank, he's from there and his family still lives there. Somehow it makes me feel better to know someone in a strange town... even if I have only met them once!
Right now, even though it's a little further away, I'm feeling much calmer about Denver than I have about Salt Lake.
The good thing about this is that it's made me keep asking and thinking... I just haven't been satisfied with the care out of Salt Lake (actually, I'm still waiting for them to call and schedule the surgery - it's been 24 hours since I called to schedule it). Along the way, I've discovered that The Denver Children's Hospital is one of the Top Ten for Children in America.
Also, my local Wyoming family contacted their pediatrician friend and I contacted my Arizona Ear Surgeon. Both of these people recommended the same surgeon out of Denver. I called his office and explained to the surgery scheduling nurse what we needed, she recommended two surgeons in the office who specialize in more of "facial plastics" than "just tubes and tonsils". Both of these doctors were also recommended by the Wyoming family pediatricians.
So. Frank has an consultation appointment on December 29th in Denver. He still has an appointment in Salt Lake City on December 23rd with Infectious Disease. I'll be calling Denver to see if they want to see him in their ID department or should I keep the appointment in Salt Lake.
As it turns out, Tom has December 26th-29th off (a RARE thing for him!) and so he may be able to go with us... if it looks like the weather will allow us to be back for him to work on the 30th. If a storm is pending though, I'll have to go alone and spend the night.
Ever since Mork & Mindy, I've always wanted to go to Denver (Boulder), although I'd prefer going for a reason besides surgery on my son, I'll still enjoy exploring a new place. Also, I'll have to go there frequently for follow-up care, and my brother's planning to move to Denver this year, so it will be nice to have a need to go there... I'll get to see my brother and his family more often than I normally would. How's that for looking for the silver lining?
I didn't think I knew anyone in Denver, but I've just remembered that a friend of ours whom we lived with while we were expecting Frank, he's from there and his family still lives there. Somehow it makes me feel better to know someone in a strange town... even if I have only met them once!
Right now, even though it's a little further away, I'm feeling much calmer about Denver than I have about Salt Lake.
Tuesday, December 16, 2008
Quick Update on Frank's Infection
We collected another sample last Wednesday. The doctor and I fought a bit on Friday. Monday the results came back... no new growth. The Infectious Disease doctor out of Salt Lake City (whose name my doctor didn't think to get >P) said no need for a PICC Line, stay on the Sulfa, keep Infectious Disease appointment on the 23rd, and plan on a surgery to remove the wire.
I understand the logic behind finding a surgeon nearby (Salt Lake is 3 hours and Denver is 5). I just haven't been able to track one down. I still want to go to the original surgeon(s) in Phoenix. I am looking for a new doctor though, and thinking I'd like to go interview a few, but not sure how I can get in to see them. Plus, what I talk with them about how they actually perform could be two different things.
Feeling like crying because I *should* find a close doctor, but I can't seem to find one I'm happy with. I just want to take him back "home" where I know the people and places. :P
I understand the logic behind finding a surgeon nearby (Salt Lake is 3 hours and Denver is 5). I just haven't been able to track one down. I still want to go to the original surgeon(s) in Phoenix. I am looking for a new doctor though, and thinking I'd like to go interview a few, but not sure how I can get in to see them. Plus, what I talk with them about how they actually perform could be two different things.
Feeling like crying because I *should* find a close doctor, but I can't seem to find one I'm happy with. I just want to take him back "home" where I know the people and places. :P
Sunday, December 07, 2008
War Paint
I haven't said much about it lately, but in this case it's not the "No News is Good News." Instead it's "No News is No Change." Basically, Frank's wound remains the same, as does the Cavalier and Unconcerned attitude of the Doctors and other Medical Staff I've been interacting with.
Once again... A picture that has nothing to do with the text in the post!
You can't see ANY SORT of a family resemblance between these two brothers, can you!!?!
Can you just imagine if they had the same coloring!?!? They'd look like carbon copies of each other! :D
Watch out! I'm preparing to go on The War Path again tomorrow regarding Frank's Infection, Care, and Treatment. In preparation for This Week's Battle, I've just spent an hour on the phone with my Father-In-Law, who's been a nurse for something like 40 years, many of them involved with Infectious Disease Control. He was giving me feedback, encouragement, and terminologies to use and remember as I work towards some change in the right direction with Frank's Infection. He's also been emotional with me over our love and concern for Frank and getting him the best care possible. All of this was SO HELPFUL and APPRECIATED!
At this point, I'm no longer excessively emotional (crying or screaming), I'm just deflated and determined.
Wish me luck in my quest... my goal for tomorrow morning: Get an Appointment with a Pediatric Infectious Disease Specialist for THIS WEEK; preferably in Salt Lake City, possibly in Denver or Phoenix, but hopefully in Salt Lake.
Once again... A picture that has nothing to do with the text in the post!You can't see ANY SORT of a family resemblance between these two brothers, can you!!?!
Can you just imagine if they had the same coloring!?!? They'd look like carbon copies of each other! :D
Watch out! I'm preparing to go on The War Path again tomorrow regarding Frank's Infection, Care, and Treatment. In preparation for This Week's Battle, I've just spent an hour on the phone with my Father-In-Law, who's been a nurse for something like 40 years, many of them involved with Infectious Disease Control. He was giving me feedback, encouragement, and terminologies to use and remember as I work towards some change in the right direction with Frank's Infection. He's also been emotional with me over our love and concern for Frank and getting him the best care possible. All of this was SO HELPFUL and APPRECIATED!
At this point, I'm no longer excessively emotional (crying or screaming), I'm just deflated and determined.
Wish me luck in my quest... my goal for tomorrow morning: Get an Appointment with a Pediatric Infectious Disease Specialist for THIS WEEK; preferably in Salt Lake City, possibly in Denver or Phoenix, but hopefully in Salt Lake.
Tuesday, November 25, 2008
Microbiology
We started Frank on Sulfa, a very old sulfur based antibiotic. We continue to treat the wound topically three times per day, covering it with Bactroban.
This photo has NOTHING to do with this post!
I just thought you might like to see the boys with their friends on our trip a week ago (or was it two?) to Salt Lake City. They had a great time playing in a field and with the drainage pipe.
This report will mean more to some of you than most, but I have so many nurses in my Circle of Life, that I thought you might just like to peek at the details...
Two weeks (or so) on the new Sulfa and then a follow up. Surgery is pretty much a definite, once we clear up this infection.
We are blessed that he remains strong and healthy and feeling well... just the site of the infection that we are trying to clear. Even the site feels good (unless we're cleaning it, then it's uncomfortable for him).
Frank has been having me tell him stories about his previous surgeries. He also likes finding his previous PICC Line scars (one on each arm). I think it helps him to know that he survived all this before... and he doesn't even remember it!
Last night when I told him he had a "Superbug" and he would need more medicine before surgery, he said "Well, that's a good thing!... I can take medicine and wait longer to have my surgery." I LOVED his happy attitude toward the fact that we'd made some progress!!!
This photo has NOTHING to do with this post!I just thought you might like to see the boys with their friends on our trip a week ago (or was it two?) to Salt Lake City. They had a great time playing in a field and with the drainage pipe.
This report will mean more to some of you than most, but I have so many nurses in my Circle of Life, that I thought you might just like to peek at the details...
Wound Culture (Aerobic)So. I actually wish I understood more of what this report is saying, but I do understand that Frank has a Superbug, and the Arytomycin we've been giving him has likely been feeding the bug rather than killing it. :P
ISO1 (Final)
Coagulase Negative Staphylococcus To Furter Be Identified
Staphylococcus epidermidis
Gram St (Final)
Moderate WBC
No Organisms Seen
Clindamycin (CD) R
Gentamicin (GM) <=1 S Levofloxacin (LV) 4 R Linezolid (LNZ) <=1 S Oxacillin (OX) >1 R
Penicillin (P) >1 R
Rifampin (RIF) <=0.5 S Vancomycin (V) 2 S
Two weeks (or so) on the new Sulfa and then a follow up. Surgery is pretty much a definite, once we clear up this infection.
We are blessed that he remains strong and healthy and feeling well... just the site of the infection that we are trying to clear. Even the site feels good (unless we're cleaning it, then it's uncomfortable for him).
Frank has been having me tell him stories about his previous surgeries. He also likes finding his previous PICC Line scars (one on each arm). I think it helps him to know that he survived all this before... and he doesn't even remember it!
Last night when I told him he had a "Superbug" and he would need more medicine before surgery, he said "Well, that's a good thing!... I can take medicine and wait longer to have my surgery." I LOVED his happy attitude toward the fact that we'd made some progress!!!
Superbug!
At 4:15pm yesterday, the final results of Frank's lab-work came in. He has an Unidentified Staph Infection which is multi-drug resistant (ie: it is resistant to MANY common antibiotics). The local doctor isn't "blowing me off", but he's not trained in this and wants us to see an Infectious Disease Specialist.
I did call back and tell the nurse that I WILL travel for to see the Specialist, but that it is Incovienent, Expensive, and (I feel) Unnecessary. I just don't see the need to drive Frank three hours just for the doctor to look at the lab report, reveiw the CaT Scan, confirm with other doctors that there is an infection, and then just shake my hand and glance at Frank.
So, we are waiting to hear when and where (phone or in person) that appointment will be.
I did call back and tell the nurse that I WILL travel for to see the Specialist, but that it is Incovienent, Expensive, and (I feel) Unnecessary. I just don't see the need to drive Frank three hours just for the doctor to look at the lab report, reveiw the CaT Scan, confirm with other doctors that there is an infection, and then just shake my hand and glance at Frank.
So, we are waiting to hear when and where (phone or in person) that appointment will be.
Wednesday, November 19, 2008
The Infection's Back
Frank's infection has returned and it's "Bigger than Ever!"
This morning the site swelled back up. I took him to the local clinic. I cleaned the wound and opened it back up. The Lab Tech delicately took a small sample while saying "we don't do this, the doctor does"; then refused to give me any more cotton swabs for me to finish cleaning the site, saying and "we don't have any Q-Tips!" Let's just hope this sample gets properly cultured so we know what we're dealing with!
Frank is going back on the same oral antibiotic that we used three weeks ago. I insisted on only a six day course though because in five we should have results from the culture, at which point he'll likely change medicines.
I told the doctor my expectation was "that Frank would have a PICC Line in next week and ... surgery before Christmas." The Doctor said this was a realistic expectation and time-line.
Here's my question for you... do I go back to the original surgeons, and "my home" in Phoenix for this surgery or do I find and use a new doctor closer to home (in Salt Lake City)?
I'm having a very hard time separating emotion from this. What would you do?
This morning the site swelled back up. I took him to the local clinic. I cleaned the wound and opened it back up. The Lab Tech delicately took a small sample while saying "we don't do this, the doctor does"; then refused to give me any more cotton swabs for me to finish cleaning the site, saying and "we don't have any Q-Tips!" Let's just hope this sample gets properly cultured so we know what we're dealing with!
Frank is going back on the same oral antibiotic that we used three weeks ago. I insisted on only a six day course though because in five we should have results from the culture, at which point he'll likely change medicines.
I told the doctor my expectation was "that Frank would have a PICC Line in next week and ... surgery before Christmas." The Doctor said this was a realistic expectation and time-line.
Here's my question for you... do I go back to the original surgeons, and "my home" in Phoenix for this surgery or do I find and use a new doctor closer to home (in Salt Lake City)?
Either way the doctor in SLC would have to do the follow-up, post-operative care.
I have support (family & friends) in both cities.
I trust the Phoenix doctor's implicitly.Frank's Dad is closer to SLC.
Frank could return to his own home and bed and toys sooner here in SLC.
In Phoenix, Jack would be closer to me.In SLC, Jack would be in Wyoming. I have only been away from Jack twice at night (he's almost four). Jack has never been in day-care or pre-school.
Jack doesn't "need" me much, but I have a HARD time being seperated from him (or Frank).
The surgeon doing follow-up care understands the case better if he also performed the surgery.
I'm having a very hard time separating emotion from this. What would you do?
Bent Wires
Last week we discovered that the sample collected from Frank's wound had been lost. Since then, we cleaned out the wound through Saturday, but then it was looking better and better... just a wound with a scab healing. Today, it's a little red and swollen... I'll keep a close eye on it. If it is reinfected, I'll trot Frank over for a collection at our local Medical Center (where an order is waiting on file.)
After looking at the CaT Scan again last week (with a second doctor) we noted that one of the stainless steel wires (on the left) looks to be encased in bone... which was the original plan. The other wire, looks like it has untwisted and is still above the bone. It actually looks (to me) like a staple that has been pulled out of a piece of paper... you know, how one side of the staple is raised up a little. That's kind of what it looks like is going on with Frank's "hardware". Knowing this, that a piece of metal rubbing on tissue is (of course) going to irritate the area, I understand that the only solution will be to remove that piece of the wire.
It was also interesting to learn that "hardware" can infect DECADES after a surgery, and that after removing it, the area usually heals quickly and without incident.
All-in-all, healed or more procedures being needed, I am SO MUCH calmer about it all. I know there's little I could have done to prevent this and that whatever is going on is treatable.
After looking at the CaT Scan again last week (with a second doctor) we noted that one of the stainless steel wires (on the left) looks to be encased in bone... which was the original plan. The other wire, looks like it has untwisted and is still above the bone. It actually looks (to me) like a staple that has been pulled out of a piece of paper... you know, how one side of the staple is raised up a little. That's kind of what it looks like is going on with Frank's "hardware". Knowing this, that a piece of metal rubbing on tissue is (of course) going to irritate the area, I understand that the only solution will be to remove that piece of the wire.
It was also interesting to learn that "hardware" can infect DECADES after a surgery, and that after removing it, the area usually heals quickly and without incident.
All-in-all, healed or more procedures being needed, I am SO MUCH calmer about it all. I know there's little I could have done to prevent this and that whatever is going on is treatable.
Thursday, November 13, 2008
Emotional Words
So. An interesting thing about the written word is that you have to express emotion through it, without the use of volume and animation and tone. You could just say "I feel ____." but I think writing is so much more powerful if you can help the reader to FEEL what you FEEL. I don't know if I can do this today, but I'll give it a shot.
Monday I was suppose to hear back from the Doctor in Salt Lake City about Frank's cultures. I didn't. I called them. There were no results in the computer. Tuesday I never heard from them and forgot to call myself. Yesterday, there were still no results in the computer, so I had to ask if we could contact the lab to check on the status. I was given a phone number. I spoke to a very helpful Microbiology Lab Tech, Andrew. He could see Frank's name in the computer, and NO RECORD of an Lab Work. Andrew offered to call the ENT Clinic and called me back.
"I don't have very good news" Andrew said. The doctor remembers collecting the sample. The nurses remember taking it down. And then nothing. Nada. So, it's been lost (physically or by misspelling in the computer) or damaged. No matter what, we probably won't recover that information.
Frank's wound looked and felt better on Sunday and Monday, but Tuesday, it started looking and feeling worse again. Presently, there is no infection coming out... which is a good thing for healing, but a bad one for answering questions.
The nurse and doctor never thought to follow up or bothered to call me without my first contacting them and pushing the issue. The doctors (WY ENT and SLC ENT) were both very kind to speak with me on the phone (or in person) yesterday, but I had to make the calls and leave messages including the phrase "please have the doctor call without me having to BADGER them!"
Both doctors thought we could "empirically" put Frank back on antibiotics. Then they switched and said I had a good idea to wait for any more infection to turn up. So. That's what we'll do. Keep cleaning the wound regularly and IF more infection starts to come out, I'll take him right over to our local clinic's lab, where an order is waiting to collect a sample and test it.
We're six weeks into this and still don't have any conclusive answers on what's going on. We'll probably never know what exactly caused all this.
How would you react?
I spent seven hours yesterday with a passionately raised voice and or crying.
I feel so frustrated, worn out, worried, and just spent.
Today we're "logging out and powering off" (computer and phone). I'm going to spend the day with the boys, cuddling, reading, watching movies, and playing. No school or errands or "have-to's". We're going to play "hookie" and Ditch Life today.
Monday I was suppose to hear back from the Doctor in Salt Lake City about Frank's cultures. I didn't. I called them. There were no results in the computer. Tuesday I never heard from them and forgot to call myself. Yesterday, there were still no results in the computer, so I had to ask if we could contact the lab to check on the status. I was given a phone number. I spoke to a very helpful Microbiology Lab Tech, Andrew. He could see Frank's name in the computer, and NO RECORD of an Lab Work. Andrew offered to call the ENT Clinic and called me back.
"I don't have very good news" Andrew said. The doctor remembers collecting the sample. The nurses remember taking it down. And then nothing. Nada. So, it's been lost (physically or by misspelling in the computer) or damaged. No matter what, we probably won't recover that information.
Frank's wound looked and felt better on Sunday and Monday, but Tuesday, it started looking and feeling worse again. Presently, there is no infection coming out... which is a good thing for healing, but a bad one for answering questions.
The nurse and doctor never thought to follow up or bothered to call me without my first contacting them and pushing the issue. The doctors (WY ENT and SLC ENT) were both very kind to speak with me on the phone (or in person) yesterday, but I had to make the calls and leave messages including the phrase "please have the doctor call without me having to BADGER them!"
Both doctors thought we could "empirically" put Frank back on antibiotics. Then they switched and said I had a good idea to wait for any more infection to turn up. So. That's what we'll do. Keep cleaning the wound regularly and IF more infection starts to come out, I'll take him right over to our local clinic's lab, where an order is waiting to collect a sample and test it.
We're six weeks into this and still don't have any conclusive answers on what's going on. We'll probably never know what exactly caused all this.
How would you react?
I spent seven hours yesterday with a passionately raised voice and or crying.
I feel so frustrated, worn out, worried, and just spent.
Today we're "logging out and powering off" (computer and phone). I'm going to spend the day with the boys, cuddling, reading, watching movies, and playing. No school or errands or "have-to's". We're going to play "hookie" and Ditch Life today.
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