Hi Everyone!
Yesterday Nick and I were in Birmingham for his checkup, chemo, and
IVIG.
Overall, it was a really good day. Nick’s blood work looks pretty good. His
blood counts seem to be holding steady. The physical checkup did not reveal any
issues. The oncologist seemed pleased with how “well” Nick seems. Nick is
feeling pretty good today. Mainly he is tired. He did go to school this morning. :-)
The only problem that we had was with the port...again. It needed the
special medicine put in it to clean out the line. That delayed things some. The
medicine worked and the line cleared up. The IVIG and chemo were able to be
given without any more problems.
The problem with this port/central IV line is it keeps developing something
called a fibrin sheath on the tip of the central IV line located in Nick’s
chest. A fibrin sheath is a collection of cells (similar to a blood clot) around
some type of catheter (tube) in the body preventing full use of the catheter.
This fibrin sheath has to be dissolved. If it isn’t dissolved, the fibrin sheath
can harbor infection and make the patient very sick. (We’ve had this happen
before.)
In order to dissolve the fibrin sheath, the central IV line has to be
injected with some kind of blood clot dissolving medication. TPA is what is used
at Children’s Hospital. TPA has been used in stroke patients to dissolve the
blood clots that caused the stroke. It doesn’t usually take a lot of this
medication in order for Nick’s line to work, but it isn’t something that you
really want to keep putting in the line. What goes in the line, goes into the
body. TPA is not something that anyone really wants to use on a regular basis.
Nick’s body has a history of developing these fibrin sheaths. It’s been a
problem we have battled with every single port he has ever had. The line Nick
has in right now has only been in a year. Usually we can use a line for 3-5
years before we have problems with it. I’m not sure with this one.
So, we are going to try something different during the time between chemo
treatments. I am going to access Nick’s port at home in 2 weeks, flush the line
really well, and put in fresh heparin (The medicine that is used to “lock” the
line so no clots will form). We will find out if trying this additional flush
and “lock” works when Nick returns to the clinic on November 21 for his next
treatment.
Please pray that this works. I really don’t want to have to put Nick
through another port removal/placement surgery right now.
Pray for me as I access the port. I’m not worried about accessing the port.
I’ve done it before. I just want it to work. I’m praying for no issues when I
access it. The procedure for accessing the port involves having a sterile field,
being masked and gloved, sticking a special needle/catheter into the port,
checking for blood flow, rinsing the line with sterile saline, then filling the
line with heparin, and finally removing the catheter from Nick’s port.
Pray for Kacie. I will likely have to do this when she is home. It has been
YEARS since she has seen any kind of medical procedures done at home. I’m not
sure that she even remembers when the other procedures were having to be done
with any regularity. Don’t get me wrong, this is a very minor procedure. So
minor, I feel weird calling it a procedure. I’m just not sure how she will react
to me having to actually “do” anything involving Nick’s chemo stuff here at
home. I’ve tried very hard to keep anything chemo related away from our home
since Keith died.
I haven’t told her yet what I’m going to have to do. I will as the time
gets closer, but not until then. She stresses way too much over stuff like
this.
Moving on...The oncologist spoke briefly with the surgeon (I can’t remember
her name). She will not make a decision on removing the mass in Nick’s abdomen
until a new set of PET scans has been done with the new higher tech machine
there at Children’s. The surgeon is not satisfied with the pictures taken by the
PET scanner here in Huntsville. I don’t have a problem with her wanting more
pictures. It actually tells me a lot about how cautious and conservative she is.
I like that! The problem is going to be getting the insurance to agree to pay
for the additional scans.
Please cover this in prayer. Until these scans get approved and the surgeon
is able to make a determination, we are in a holding pattern.
The target date for the PET scan is December 19. The oncologist wanted the
scans done in November, but I don’t. I want to have the holidays without any
major surgical decisions hanging over our heads.
The next chemo visit is November 21. The PET scans, if they are approved,
on December 19. Then another chemo and IVIG visit on December 26 or 27.
Assuming everything runs as planned, we should have a decision from the
surgeon when we return for the chemo visit on December 26 or 27.
So...even though yesterday was relatively calm, there are lots of prayer
requests that have come out of that day.
Please pray as the Lord leads.
As always, we remain...
In HIS Grip,
Kristy Baxley
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