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!!!
Friday, December 26, 2008
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.
How to insert HTML Code into your Blogger Layout.
After several attempts, I finally figured out how to insert some tracking codes into my Blog. I've really been enjoying seeing how many visitor stop by, and where they are located. In response to requests on how to do this, here's a step-by-step on how to add an HTML Gadget to your Blogger Page.
1. Create an account with the service you wish to use (my global tracker is www.feedjit.com and my counter is www.amazingcounter.com). You could also use a search engine for "free online counters" or some such search. There are MANY options out there!Let me know if you add something to your page!
2. Set up the service options you want (format, colors, etc.)
3. Copy the HTML code from the service.
4. Log into your Blogger Dashboard (type www.blogger.com, then enter your user name and password).
5. Click “Layout” under the Blog you wish to modify.
6. Click “Add a Gadget” on the area of the page you want to have the item located (side bar / bottom / etc.)
7. Scroll down the list to “HTML/JavaScript” and click the PLUS SIGN (+) beside it.
8. If you want, give your gadget a TITLE.
9. Paste the HTML code from the service in the CONTENT field.
10. If you would like, you may drag and drop the new gadget to a different place in the layout of your page.
11. Click “PREVIEW” near the top of the page.
12. If you like what you see, then click “SAVE”.
13. Go check out the new functionality on your page! :D
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
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