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DAY 5

Friday September 15th, 2006

Johnson and his girls!

We get the call to come in for the dye procedure late in the day 3:45PM to go to the Riverside Hospital immediately.  This procedure we find out has been deemed an "Emergency Procedure".  So we grab both girls and head down to the hospital.  The technician is very funny and friendly.  The girls are very hungry and so we take off on a journey to find money and food.  By the time we get back 10 minutes later, dad is done.  So they didn't do the procedure after all. 

Again...once the technician finds out that Johnson has had his catheter in for 8 years, and that he is not already doing dialysis, she refuses to do the procedure.  She says that once this dye is injected into the abdomen that dialysis must happen immediately afterwards to remove it, and since we have not started dialysis, she cannot do it.  Johnson's doctor is paged, and once the miscommunication has been cleared up, we are told that Johnson must now go back to the General Hospital on Monday where we think the surgery will happen to remove his old catheter and a new catheter will be inserted.  This week has been very frustrating and emotional.  We were hoping to be back to work on Monday, now we must wait to see what Monday has in store for us. 

Thank you to the TSS group at Innovapost for the kind gift basket, and thanks very kindly to my EST team for the thoughtful flower arrangement and well wishes.  Johnson and I sincerely appreciate what you have done.  Hope to see all of you soon!  I will update all of you again when I can.

 

Day 8 - Monday September 18, 2006

So we get the call to come into the hospital early in the day. We are to do some Emergency Blood Work. 

 

Our nurse is very nice and we are taken in immediately even though many are still waiting.

Our nurse uses the butterfly, as many vials of blood will be taken.

Now we are taken to have Johnson's dressing changed.  Imagine not being able to take a shower or bathe for this whole time.  I must help Johnson wash, and help to prevent any contamination or infection.

I read an old newspaper as we pass the time awaiting the results of Johnson's blood work.  Johnson has already read this paper several times.  Guess we should bring a new one in next time! Duh!

We just get more bad news.  Johnson's blood work is not good.  His creatinine has jumped up from 918 to 958.  What does this mean?  Well...we need to have his catheter replaced lickety split!  This week if we can...to give us time to heal before Johnson gets real sick.  So our doctor has her calls into the only two surgeons who do this in Ottawa, and we wait to hear.  She has some pull, and is working it for us!  We should hear back tomorrow from her with the news from the surgeons.  If we cannot get Johnson in immediately for this procedure, then what we feared will happen will happen.  Johnson will then have another tube put into his chest, and we will have to start Hemodialysis. 

Sometimes it is necessary to gain access to the bloodstream quickly.  A central venous catheter is used and a soft tube is surgically inserted into a large vein in the neck or near the collarbone.  This method is usually temporary until we can get our permanent access site (in his abdomen) ready.

It also means that Johnson will have to dialyze at the hospital and not at home every second day.  Each treatment takes approximately 6 hours each time.  Four of them being actually hooked up to the machine to clean his blood.  This means he will be away from his family allot, and that he may not feel very well afterwards due to the quick changes in fluids in his body.

I e-mail the many people back who have sent us well wishes.  It is very emotional.  Johnson is watching wrestling beside me!  What else would he be doing?!  HA HA!!  We have a good cry and tell each other we love each other and that we will get past this.  This too will pass.  We imagine ourselves 1 year from today, where all this will be another amazing memory which we have gone through together, and has only made us stronger!

We will go back to work tomorrow, and expect to get the call to have surgery this week.  Who knows which it will be?   Work will help to take our minds off of things for a short while.  It will be nice to see our friends again and will be a welcomed break from all of this.  I will update you all again when I can.

 

Day 9 - Tuesday Sept. 19, 2006

We both went to work today.  It was great to not think about dialysis.  We get a call early today from our new doctor.  She has called in a favor and we are now scheduled to go for our pre-op/pre-admin appointment tomorrow.  This is good news.  It means that Johnson is scheduled for emergency surgery this Thursday morning.  He will have his old catheter removed and a new one put in.  I will update all of you after I know more tomorrow.

Have you seen the newest member of our family?  Tasha came into the John household 5 weeks ago now.  She is settling in nicely. Johnson and I swear this dog doesn't have legs.  The girls never want to let her down!

 

Day 10 - September 20, 2006

Our neighbors Julie and Vance offer to help with the girls this morning, and we drop the girls off at their house at 7:15AM. This truly is an offer of love, as Julie and Vance have 3 daughters of their own ages 7, 4 and 2.  Imagine getting all 5 girls ready and off to school by 8:15AM.  We head to Pre-Admission to get ready for tomorrows surgery.

We have a very nice nurse who asks Johnson a million questions about his medications, health etc.  This all takes about 1 hour and then we are told to go upstairs to have an EKG to make sure Johnson's heart is ok prior to the operation.

Johnson get's all hooked up! Don't we have amazing technology?!

Then we are told to go back to Pre-Admission with the EKG results.  They look good!

This is where we will go tomorrow.

Now we are off to do more blood work.  The technicians there are surprised to see us yet again this week.  I mean...how much of Johnson's blood do they need?! HA HA

After the blood work is done we head back down to the dialysis unit where Johnson is told he will now need Iron injections to be administered every two weeks for his anemia.  This special iron is called EPO and apparently each needle costs approximately $300.00 per shot.  Johnson needs two a month to begin with.  This drug is covered by OHIP thankfully.  Makes you glad you live in Canada huh! 

So tomorrow morning we are to be at the Hospital at 6:45AM to get prepped for surgery.  Johnson's parents will arrive at our house at 6:00AM to help get the girls ready and off to school and then they will join us at the hospital.  Thank goodness for family and friends and them being able to help us out with the kids.  Otherwise we wouldn't know what to do.  Special thanks to our neighbors Julie and Vance for making themselves available to help with the girls in the mornings we need help. 

Please remember Johnson in your prayers tomorrow at 8:00AM. This is when he will be in surgery.  I will update all of you again when I can!

 

Day 11

I am delayed in updating our website.  We have been through the worst 2 days of our lives so far.  Johnson's parents arrive at 5:45AM so that they can wake the girls and get them ready and off to school.  Johnson and I arrive at the hospital early at 6:30 AM. 

We arrive at Day Surgery and Johnson get's checked in.  I am not able to see him now until after his surgery.  He speaks with the surgeon prior to his operation to sign his consent form.  You see...we thought they were going to remove the old catheter, turns out now they are only going to free it up and re-position it.  This means that if they are successful, that Johnson will be able to start dialysis in 1 weeks time.  If they were to remove the old and put in a new, it would mean a much longer healing period. 

Johnson's parents arrive to keep me company and to wait.

No one tells me anything, I am waiting for over 2 hours, Johnson get's back to recovery and  hears the nurses saying that Mrs. John would like to come back and see her husband.  You see...no one is allowed back there, but I somehow manage with my nice disposition to weasel my way back.  I hold Johnson's hand and touch his face gingerly.  He open's his eyes and the tears flow.  He smiles and tells me how very happy he is to see me.  I tell him I love him very much!  He is in alot of pain he tells me.  The nurses have already given him 2 medications for pain.  I walk over to their station and insist he get's more medication.  You see...Johnson has a very HIGH tolerance for pain, so if he says he hurts he really hurts!  Well...next thing I know there is an IV hooked up and more pain medication is administered.  Apparently the last two pain medications were administered orally and of course would take a much longer time to start working. 

We wait for another hour and then Johnson is ready to leave.  He is shaking uncontrollably... shivering...he looks way bad. 

We wheel him only 50 feet from discharge and Johnson is going to be sick.  We panic as we are just outside the men's washroom and it is out of order.  Johnson and his mom hit the ladies room and he throws up into the sink.   I run back to tell the nurses he is sick, and can they give me a pan or something to help him.  They give me a few barf bags and I return.  Mom and dad take him home, so mom can help take care of Johnson in the back seat. I follow along after. 

Johnson is now back home and once is comfortable on the couch must throw up again.  Mom and Dad rush to find a bowl...that's a funny story all on it's own.  I must go get his pain prescription filled, then head out to get the girls from school at 2:45PM.  I am soooo tired, but if I sleep I won't wake up so I wait.  Then real life starts again, get the girls, I take them out to eat while Johnson is sleeping.  We get back home around 5:00PM and the girls are very concerned about their daddy.  They kiss him gently.  Then it's homework, bath time and then bedtime.  I am overtired an cannot sleep.

Day 12

It's up bright and early again so I can get the girls off to school.  I savour the thought that I must stay with Johnson for 24 hours after his surgery to make sure he is ok.  I can't wait to drop them off, so I can get back home to bed and SLEEP until I must go and get them at 2:45PM.  This is NOT going to happen, because we receive a call from the hospital at 10:00AM asking us to both come in so they can change Johnson's dressings.  I almost cry because I'm so tired and don't want to go.  So we wake, get ready, pick the girls up from school and head on off to the hospital.  This is where our nightmare begins.

The girls are having fun playing with the wheelchairs and writing on the white boards.  They are the joy of our lives! 

The nurse has orders from our doctor to aspirate the catheter.  She removes Johnson's dressing and adds the titanium adapter again.  Now she must try to pull with a syringe inserted into Johnson's catheter some fluids out.  She goes very slowly and Johnson grabs the edges of the bed and screams out in pain for her to stop!  I see tears.  I'm scared...I've never seen Johnson hurt so badly...I ask what's happened?  Remember...Johnson has just had surgery yesterday and is very tender to begin with...plus he is already on pain management with some morphine, yet he feels this much pain.  Johnson describes it to his nurse and I quote...please excuse the vulgarity of his words, but I think everyone will understand this completely... Johnson says "It feels like I've just been kicked right in the sack!"  The wind is knocked out of him...he tries to catch his breath...  Now that is over with, now the nurse says she must try to put a little dialysis fluid into his abdomen to test to see if the catheter is working.  The nurse squeezes the tubing like you would pinch a garden hose while your friend goes to grab a drink from the end.  You know your going to let that garden hose rip as soon as they go to drink...ha ha, but not so funny when she's doing it to your husband.  She slowly lets the fluid go into Johnson's catheter, he shouts out in pain again and begs her to stop.  I beg her to stop.  She squeezes the tubing again to stop it.  Johnson cries and tries to catch his breath again.  This is repeated several times.  This is the first time I really see Johnson scared.  He asks the nurse will it always feel like this?  She says the pain is not normal and is because the catheter is positioned down so low towards his bowels, which explains why it feels like it does.  Once his abdomen holds the dialysis fluid the catheter will actually just float around and not lay right on his bowels.  Ewe! I am trying to be strong for Johnson... the girls and I hold his hands and kiss him.  Taylor our 6 year old is very concerned and plays nurse to Johnson.  He looks at her lovingly as she holds his hands and for her ... he is strong.  He knows what he must do.  I know too.  We are strong.  We wheel him back to the car, the girls get inside, Johnson stops me and asks if I'm ok.  Amazing?!  What he's just been through, and he's concerned about me.  Well.... I really break down... I mean I do the UGLY cry on his shoulders.  I tell him it is hard to see the one you love in so much pain.  He says "Babe... they really hurt me today."  I loose it.  Then as quickly as I've lost it, I'm strong again.  We all take dad home to recover.  It's going to be a long weekend, and back to the hospital on Monday to try again.

Click here to see our slide show of photos from this day's event.  Too many to show them all here, but I think it's important for all of you to see them.