A Close Call

Whew!  We made it home.  For a few heart-stopping moments in clinic today, it looked like we might have to spend the night at the hospital.  But it all worked out. . .

We left this morning, early, to head to Salt Lake.  I had my list -- had checked it twice -- and hoped we could accomplish all we had to do today and still make it home -- preferably before dark.  Brendan slept most of the way down.  I slowly -- oh, so slowly -- tried to push his sodium into him without waking him up.  Too much too fast and it all comes back up  -- especially on an empty stomach.  (Yes, I remembered to turn off his feeds at midnight in preparation for the PET scan today.)

 First on the list -- deliver the 15 quilts from the stake humanitarian center and more money donated by you to Primary's.  Check!

 Two -- drop off the soda pop tops that were donated to the Ronald McDonald Family Room for their fundraiser.  Check!

 Next, it was time to access Brendan's port and get blood draws in time to get to Imaging on time for the PET scan.  (Yep, it seemed like a race against TIME!)  By the end of the day, Brendan had multiple bands on his arm from the different departments.  Here the nurse is making labels from his band for his blood work.

 Several people have asked recently what it means when I say "Brendan's port was accessed -- or de-acessed."  Here is what that means:
When we access Brendan's port, we first put EMLA (numbing) cream on his chest over his port so the needle doesn't hurt when they push it through the skin.  We can see when the skin is good and numb because it turns white.

 Then the skin around the port is cleaned and dried.

 Then the nurse feels where the opening of the port is under the skin and pushes the needle into the port.

 Sometimes they count:  1, 2, 3, push.  But Brendan doesn't like the anticipation.  He just tells them to push it in and don't tell him when.

 Here is what the port looks like under the skin.  It has a tube that goes up into a vein in his neck and down into the heart.

Once the needle is in the port, saline is pushed into the line to clear it, then blood is pulled out to see if the needle is in the right spot.  If the "return" is good (blood come back through the line), then they proceed.  If no blood returns, then they move the needle around, or lift Brendan's arm, or try other tricks to get blood to flow out of the port.

 The line is clamped. . .

 . . . and the needle is secured with steri-strips to hold it in place.

 Then the entire area is covered with tegaderm or mepore cover.

 All this time, everyone in the room has to wear a mask to keep everything sterile.  (Since the line goes right into the heart. . .)

 Then blood is drawn from the port and sent to the lab.

 From here, we left the Oncology Clinic and headed to Imaging to get checked in for the PET scan.

 Good thing Brendan had a good book!

 And a lap to curl up on.  (I'm always amazed that he can scrunch up onto any size seat!)

 The prep for the PET scan was longer and more difficult than I thought it would be.  First, he was given the radioactive material into his port.  Since the half-life of the radioactive material is short, the test has to be performed within a certain amount of time.

 The scan is actually a PET/CT scan so for the CT part of it Brendan was supposed to drink nearly a liter of fluid with contrast in it within 45 minutes.

Pushing that much fluid into his feeding tube was difficult.  He was already nauseous, had nothing in his stomach, and was trying to keep it all down while I kept pushing in more.

 As time got close, I started pushing faster, and somewhere I crossed the line of "too much too fast" and he threw a bunch of it up.

 But, no worries, they take what they can get and the test went on as scheduled.  But first, they took Brendan down the wheelchair lift and back into the hospital to go to the bathroom.  They don't want all the radioactive material building up in his bladder and showing up on the scans.

 The PET scan machine is brought to Primary's each Wednesday in a trailer and set up in the parking lot.  This machine moves back and forth from Logan to Primary's and wherever else it is needed.

 The actual PET/CT scan only took about 25 minutes.  Then it was time to head over to the Moran Eye Center for Brendan's eye checkup with Dr. Patel.  Brendan's right eye looks great and vision is normal.  We took the sky bridge back to Primary's.

At 2 p.m. it was time to meet with the Oncology doctors.  Brendan was pretty beat by this time and just wanted lie down and sleep.  We let him while we talked.

We found out from the MIBG scan that the cancer cells did not uptake the dye.  So that part of the study/ possible treatment is finished.  

 The PET-CT scan showed a few areas of what the doctors believe are bone cancer activity, primarily in his scapula, arm, ribs and sternum.  He has also been complaining of pain in his knee, and bumps on his head, but the scan didn't cover these areas.  The doctors are concerned that the rapid progression of bumps on his head may indicate that the cancer is moving quickly.  It appears that it has already begun to affect the marrow in the bones.  Brendan's blood work showed only a 6% hematocrit (should be up around 37%).  They usually give transfusions when the number gets around 20%.  So Brendan needed to stay today for a red blood cell transfusion.  Since it was already mid-afternoon, it looked like Brendan may have to be admitted for a "short-stay" in order to get the transfusion.

 But the nurse had Brendan's blood typed and matched and before we knew it, ARUP had delivered the blood.  So the 2 1/2 hour transfusion began just after 4 p.m.  Brendan slept through most of it, even though he had to have his temperature taken, his blood pressure monitored, and his skin checked often for hives or some other reaction to the blood products.

 By 7 p.m., Brendan was peeling the tape off of his port so he could be de-accessed and we could go home!

 Even with as tired as Brendan was, he wanted to go to ICS and get his beads for the day.  Port access, clinic visit, blood transfusion, CT scan -- to name a few.

 Brendan didn't mind waiting in the sunshine while I went for the car.

 Then it was a beautiful drive home!  Boy, was Brendan glad to be home.  He was glad to get something to eat (even though it was just through his feeding tube).  And he was so glad to crawl into his own bed.

 Tomorrow we have some tough questions to answer.  Brendan will have a big part in deciding whether to proceed with another biopsy and study medications, whether to try to manage the progression of the cancer with "well-tolerated", low dose chemo and steroids, or whether to be done with treatment altogether.  Tough choices for a young kid.  We'll all sleep on it tonight.