|Monday Memories: Did I ever tell you about CaringBridge
We bloggers all start out for
different reasons. When I began keeping
a web log, I had never heard of blogging. If I had, I probably would have thought it to be a weird bunch of narcissistic
crap. And maybe in some cases it
is. I know that I’ve posted about such
mundane topics as “My houseplant looks like a Star Trek alien” or “if I was ethnic
food, what kind would I be?”
I’ve also talked about death &
dying, abortion, politics and many other topics which are not so light and
airy. It’s my blog and I enjoy the fact
that I have the ability to ramble about my every thought. Sometimes I receive comments that make my
head swell. At other times I can
practically feel you all out there rolling your eyes. Oh, well.
But today for Monday Memories I wanted
to continue in the thread I began last week. In that post I covered Kajsa’s diagnosis with Kidney Failure. While this was a difficult piece for me to
write, I’m glad that it did. Doing so
forced me to sit down and really examine just how far we’ve come.
When I started out, my online journal
was simply a way to keep friends and family abreast of Kajsa’s current
condition. I had no idea how beneficial
the simple act of writing would prove to be
What follows are those original entries.
Sunday, July 27, 2003
this page to keep people informed of Kajsa’s condition. Currently she is doing
quite well, although the past couple of weeks have been a real adjustment.
We had been having concerns since she was 2 weeks old. She wouldn’t gain weight
& had barely reached her birth weight at 5 weeks. The 6th week consisted of
dietary adjustments/experiments to see if my milk wasn’t rich enough. We tried
measuring how much milk she was taking in, then how much formula. Finally we
were trying her on a hypoallergenic formula when her pediatrician decided that
we should do some lab tests.
July 6th (at 39 days old) Kajsa was admitted to MaryBridge in Tacoma–due to the tests
performed earlier that day. We spent the next 8 days hanging on our various
specialists’ every word. While there we ascertained that she has Kidney
Her disease is called by a couple of names:
Chronic Kidney Disease (CKD) or
Chronic Renal Insufficiency (CRI).
While this condition is considered progressive, we currently have few
adjustments to make. She’s taking Sodium Bicarbonate, Iron (Ferrous Sulfate),
antibiotic – due to a bladder infection, and lactobacillus. There are a lot of
scary sounding drugs/procedures that are probabilities in her future, but
fortunately they appear to be a little ways away.
I’ll add other entries later to describe these.
Since Kajsa’s diagnosis, so many people have poured love and support our way.
Friends and family have pulled together to help us through these changing
times. Thank you all. I want to let you know that I am always here for updates
As for those of you I don’t yet know; I would be so happy to hear from people
with this condition and/or parents of children with CRI. Kajsa’s dad, Chris,
and I (Rowan) would be so grateful for any experiential wisdom, as neither had
ever heard of CRI before 2 weeks ago.
I’ll be writing more soon.
Wednesday, July 30, 2003
We had another
appointment on Monday. There were no labs done as we’re currently waiting for
all the insurance issues to get resolved. We did; however, check all the other
vitals. All good! Monday at Nephrology she weighed 7-12 and yesterday at the
pediatricians 7-14. This is probably due
to a minor difference in scale calibration, but either weight is fantastic. She
gained 28 grams per day over 10 days. This is fine with the Neph. Team, but I’m
striving for more. We go tomorrow to have her labs done. So I’ll enter those
here later. On another note, she had her first set of boosters yesterday. She
spiked a fever (which made her throw up her meds) & was cranky, but
otherwise; came through relatively unscathed —
and is sleeping peacefully in my arm right now. As many of you know, I am
absolutely not in favor of immunizations for a variety of reasons. Maya only
ever had Tetanus vaccination & is beautifully healthy. Kajsa is; however, a
different person. There may be a time in her life when she needs to be on immunosuppressants
(sp?) — for the rest of her life. Therefore, against all of my instincts, Chris
& I decided to give her every advantage against diseases now. Our poor pediatrician, Dr. Oriel, had to sit
through about 3 separate consultations with me before I was convinced. He’s a very patient man…and an excellent
pediatrician. If he hadn’t been so on the ball we still might not know about
her kidney challenges. Well, I’ll let
you all know if there are any changes in labs. It may be next week, though. The whole family’s off to Bellingham this weekend for the
wedding of Erick Bupp & Katie Scully. Life is full of so many beautiful things!!!
Wednesday, August 13, 2003
It’s not been
the best week around here. On Monday I was informed by Theresa (case worker
& head nephrology nurse) that Kajsa’s weight gain was insufficient. Our
goal is for her to gain between 20 & 30 grams per day. Last week she
averaged 15.7. If Kajsa doesn’t gain at least 25 grams/day by next Monday, she
is scheduled to have a G-tube placed later in the week.
A G-tube is a tube that goes from the outside of her abdomen through her belly
to her stomach. Through this she would receive medicine & nightly feedings.
There would be a tap on outside similar to one that you might find on a life
raft or beach ball.
I have strangely mixed feelings about this probability. On one hand I want
whatever is going to help my baby girl thrive. Therefore, I will, of course, do
whatever it takes to make this happen. On the other I have all sorts of pride
& ego wrapped up in this change. I want so badly to be enough for my baby –
to be able to provide for all of her needs. I also want to write down in her
baby book the date that she finds her belly button – not the day she finds her
tap. I know that these are much smaller issues than Kajsa’s health, but they
still disturb me. I’ll get over it. It’s just going to take me a while.
If she does need to go in next week for the placement; we’ll be checking into
Marybridge on Thursday for placement & spend the night, leaving on Friday.
It’s a simple procedure, performed by a radiologist. We stay overnight;
however, so that they can monitor the tube & her body’s response to it.
I’ll be doing a follow up entry to let you all know how things progress along
this line (hopefully on Monday evening).
I continue to be so grateful for your thoughts, prayers & energy. I cannot
express how much it means to us to know that we are not alone.
Tuesday, August 19, 2003
It’s been a much better week around here. We went in for Kajsa’s weight
check & labs yesterday. As you may recall, she had to gain at least 25
grams per day to be able to avoid the G-tube. Chris & I had kind of
resigned ourselves to having it placed on Thursday. But, between my marvelous
mammary glands & her fantastic drive to thrive; she gained on average 30
grams per day! (For those of you out there who may be non-metric, that’s an
ounce a day.) Pretty good work for such a little person. We’ve managed to stave
off further medical procedures for at least a little longer! I never thought
that I’d count my life by the week, but here I am. So, with that out of the
way, we’re all breathing a bit easier right now.
On another note, we are going to a special function for Kajsa on Friday.
MaryBridge has what they call Kidney Kids events. We’ll be viewing the Glass Museum and then heading over
to the hospital for a dinner & program. I’m pretty excited because I’ll get
to interact & make contacts with other parents who’ve been through this. I
hear they’re also planning a little something special for Kajsa. Pretty neat, huh?
Monday, August 25, 2003
So, this week
we went in to clinic expecting to see a nice gain like we did last Monday.
Unfortunately, that was not to be. Last week Kajsa weighed 410 kilograms (8
& 3/4 pounds), today 401 kilograms. She actually lost weight this week
despite steady healthy nursing. So, we’ve scheduled a G-tube for next week.
We are not giving ourselves any ultimatums this time. They (the high weight
gain weeks) seem only to be negating the low weeks. We want Kajsa to have an
advantage; and after much soul searching, believe this is one way. I was really
determined to try everything I could before conceding to the procedure. I
wanted to know that I wasn’t taking the "lazy" way out. Sometimes
it’s hard to find the line between being selfish in one direction & being
selfish in the other. It seems to me that we’ve reached a point where the only
reason not to get the tube now would be for egotistic reasons.
This is especially true after going to the Kids & Kidneys function last
Friday. There were so many 35 pound 5 year olds who wouldn’t be so far behind
if they’d been diagnosed earlier. It really got me to thinking that with the
advantage of time that we’ve been given, we really should be thankful &
accepting of the advantages we have in this day & age.
We are hoping to get in on Monday for the procedure before Maya comes home on
Tuesday. I don’t want to take Maya’s first day of school experience away from
her. I can’t wait to see her & I know that she’s really excited to be back
with her sister. I’ll let you all know how things go. There’s a computer at the
hospital, so I’m going to try to get away Monday night while she (Kajsa)
sleeps. Until then…
September 2, 2003
O.K., so we’re
going in for the g-tube on Wednesday September 10th. The procedure will be done
at 11:00 am in the pediatric radiology department.
After that we’ll be staying overnight for observation. I’ll go on line to give
people the security code so that you can call our room. Without it you can’t
even be told if we’re in the hospital. I never mind phone calls. Hospitals are
very boring & lonely places.
I don’t know what the rules are relating to sibling visitation, so one of us
may need to be at home that night with Maya or have her elsewhere. Perhaps
we’ll find someone to stay over with her that night. I haven’t worked out those
details yet. She comes home today & I’m so excited!!! I can’t wait to hold
both my girls!
Another Kajsa update…we’re going to begin Epo injections soon. I’m not sure
exactly when, but it’ll be within this next month. This is a pretty amazing
drug & we’re very fortunate that it is now available. FYI: Epo is made by
the biotech company our friend Jenn Youngs works for. (Hi, Jenn) Now, how this
drug works is that it (to simplify) talks to the parent cells in the bone
marrow that are trying to figure out whether to be red blood cells or white
ones & tells them to be red (erythrocytes). As I said; this is a grossly
simplified explanation, but you get the idea. Once she has more red blood cells
she’ll have more iron, oxygen, etc. What we’ll notice is that her cheeks are
rosier, her lips pinker & most importantly that she has more energy. Many
of you know of my intense fear of needles. Well, I’ll be getting over that.
They always say that children teach you, I just never knew it’d be such a crash
Thursday, September 18, 2003
So, here’s the
latest. Kajsa is going in on Monday, September 29th for her surgery. I met with
the surgeon this past Monday to discuss the details. We will be checking in at
12:00 pm with the surgery scheduled for 2:00 pm.
Last time we were there she was sedated, and then the radiologist took some
x-rays to see whether or not there was a clear path between the outside of her
abdomen & her stomach. He warned us prior to the procedure that there was a
one in twenty (5 percent) chance that something might be obstructing the
pathway. Well our little girl needs to start playing lottery, because she was
again the lucky rare one. Her colon (large intestine) was “floating”. In other
words it was high enough up in her belly to block the path the radiologist
would have taken to her stomach. So, now we are where we so often are…waiting
O.K…so here are the differences: This time there will be a surgeon working on
her. This is the man I met Monday (extremely knowledgeable man with the bedside
manner of a brick). When she is sedated he will not only utilize the diagnostic
machinery that the radiologist did, but will also be examining her
endoscopically. What this means is that he will stick a long tube down her
throat with light & a camera on the end of it. With the light he can
actually see through her abdominal wall to help guide his way. (Think shadow
puppetry.) The light/camera also assists with placement once he’s inflated the
stomach – also done through the endoscopic tube.
Now, if it turns out that his path is too blocked for this method he will have
to open her up to move her other organs out of the way. This would leave her
with a scar on her belly, but that is much better than a nicked bowel. There
are more potential risks this time than last and it all sounds pretty scary to
me; however, I know how important her having the tube is.
Oh, that reminds me. She’ll be starting out with a little bit different tube
than she would have before. This one is called a BARD. Instead of a balloon
holding it in place it has a firm plastic anchor with valves. This gives her
body a definite structure to follow as it heals. Also, instead of the key
attachment that the other had, it will simply have a flap, much like a beach
ball. No blowing up the baby!! Although it would be kind of fun to have her
float along on the end of a string. No, no, no…my humor has gotten much too
dark lately. Well, at least I still have some left, even if it is a tad more
twisted than usual.
Back to what I was saying:
Eventually this tap will wear out (as they all do). And when it does, it will
be replaced with the MIC-KEY (m.o.u.s.e.). This is a great & simple button
to use and I’ll be glad when that’s the one we have. Unfortunately, when it
comes to the changeover it’ll once again have to be done surgically. Pfftthhtt.
Hmmm, I think that may be about all the new stuff as far as medical procedures
go. On lighter notes; Kajsa’s starting to roll, developing a true giggle and
falling in love with her big sister, Maya. Don’t we all! When life’s not being
challenging, it sure is good around here. I continue to count my blessings
every day & to be deeply grateful for all of your continued love and
Thursday, September 30, 2003
Here I am at
MaryBridge once again. First of all, I want to say that Kajsa is doing very
well. The surgery went off about how I anticipated. We arrived at noon yesterday with a very hungry girl who was understandably irate. After
waiting about 2.5 hours, the surgeon, Dr. Holland, came in to let us know that
we were next in the line. We took that opportunity to discuss some of the
possibilities & confirm our consent. Dr. Holland is a rather cautious surgeon;
& let us know that if he had any doubt of a clear pathway, he would open
her up & move organs manually. Chris & I agreed with him wholeheartedly
that safety ALWAYS outweighs vanity. Therefore, when we got a call about 15
minutes after settling into the waiting room; we weren’t at all surprised to
hear that it was to be an open surgery. I have the picture. Her colon lies
directly superficial to her little stomach. She has a scar now that’s about the
length of my thumb.
We had a somewhat rough night. When her Tylenol wore off at 11:00 pm she proceeded to scratch her poor head and face to pieces. But,
otherwise it was fairly uneventful. I’m learning how to use all the
attachments. They aren’t as difficult as I had previously feared. Kajsa’s
asleep right now, so I took this opportunity to appraise you all of her
situation. Chris had to go home last night to be with Maya, but I’m sure he’s
racing here as I write. He’s so in love with his baby girl. I could tell that
it was really hard for him to leave last night. Fortunately, he left us in
extremely competent & compassionate hands. I feel the need to get back
right now. I’ll write more as I have time. I just want to say; thank you
Heather & Lynne for your phone calls last evening. They meant so much to me.
I love you all. Be well.
Wednesday, October 8, 2003
Well, as you
probably know, Kajsa got her G-tube put in last week. We let it rest and heal
for a bit & Monday night we began night time feedings. Two days down &
no real problems. It’s truly a bizarre sight & I’ll have to get used to the
noise of the pump, but it’s not bad.
It seems that we got the tube put in just in time, too. Monday at her weight
check she had only gained an average of 4 grams per day. She should be putting
on 20-30 daily. The nurse, Theresa, spoke with me briefly about Human Growth
Hormone. It looks like after we get her nutrition up we’ll probably begin HGH
treatment. I don’t know much about this yet. I’ll post as I learn.
When Theresa brought up the HGH; I got a little worried. It seems that as soon
as we complete one adjustment another comes up. The only one I could think of
that was left was dialysis. I told her of my concern & she quickly allayed
my fears. Kajsa’s kidney function is monitored closely by the labs we get done
every week or two. They measure her blood’s creatinine levels and hers are
quite stable at 2.3 – 2.5. This is high for most of us, but good for someone
whose kidney function is as compromised as hers. The point of all that is…she
shouldn’t need any more drastically new gadget, gizmos or medicines anytime
On a personal note: She is happy, bubbly & adorable. She has recently
become ticklish if I gnaw on her belly or nibble her neck. She rolls very well
from back to front, but then gets really angry at the couch, bed or whatever
surface she happens to be playing on when she is unable to roll back over.
Lastly, heaven help anyone who gets a finger too close. She’s beginning to
teethe & will chew voraciously upon your finger until such time as you pull
it away or she gags herself.
Aside from all the weird activities like doctor visits, daily meds &
plugging the baby in at night, we’re all having a great time around here. I
hope you all are, too! Thanks again for your continued support & love.
Tuesday, October 21, 2003
been a while since I last updated this site. I’ve been quite busy! As you know,
Kajsa had her mic KEY put in on September 29th. We let that rest for a week
before beginning her night time feedings.
The good news is that she is gaining very well now…between 30 & 40 grams
per day. (30 grams = 1 ounce.) This has been one of our primary goals all
along, so we’re rather joyful about that. It truly takes a lot of the stress
I’ve felt surrounding nursing her away.
Unfortunately; however, her formula is not as perfectly suited to needs as my
milk. Therefore we have been getting her labs taken every other day for the
past week. This has me fairly jumpy & irritable. Poor Maya & Chris have
been paying the price for it. Bless them! As for the lab results…Her creatinine
has skyrocketed to 3.4 as of yesterday. Her potassium is also elevated, but
water supplementation washes out her sodium. So, you see it’s a continuous
readjustment & monitoring merry-go-round.
As of today, I’m putting an extra ounce of water into her feed per night. (She
takes 5oz of formula @ 17 cc’s / hour each night.) Then we don’t actually have
to go back to the lab until Thursday. Hopefully this will help. If we are
unable to adjust the water to formula ratio properly, there’s a drug that we’d
be adding to the formula each evening to negate the excess potassium. That
would bring her up to a grand total of 7 meds (2 topical).
Speaking of medicines, Theresa has begun speaking with me about Human Growth
Hormone. I believe the plan is to begin this as soon as her nutrition stores
are up. We are so lucky to live at this time. We don’t have to worry about
Kajsa’s height being compromised by her disease. I’ll post as soon as I know
I’m sorry that this post has sounded so down & bluesy. It really isn’t that
bad. The things to remember are these:
• Most kids go through a period of dietary adjustment when they initially
acquire their g-tubes.
• She is gaining fantastically! Plenty, but not too quickly.
I’ll let you all know how things progress.
Thanks again for your continued love & support!!
Monday, November 3, 2003
As many of you may have heard, Kajsa is
probably going to be receiving a dialysis catheter by the end of the year. For
the last month or so her levels have been fluctuating wildly. Well maybe not
that wildly since there is a definite trend. Unfortunately, it is an upward one
for most of the numbers that need to remain stable.
The Nephrologists & our case worker held a meeting last week before
informing me that if her BUN rises once more, she’ll be going in for the
surgery. It is highly unlikely that this will not happen. So we are mentally
preparing ourselves for the inevitable. The type of dialysis that she would receive
will be peritoneal not hemo. This is the much preferred method & for that I
I found a really neat animated website illustrating how peritoneal dialysis
works. I’ll put a link at the bottom of the page. Please, be sure to check out
the page if you are curious about how this works. It’s actually pretty amazing.
While I am not happy about getting to this step already; I still feel so
fortunate to have been born in this time & place.
I’ll let you all know how this continues to progress.
Monday, December 15, 2003
It’s been a while since I checked in. We were recently in the hospital for a
week to get all of Kajsa’s systems balanced. We got out one week ago & were
really looking forward to our trip to North Carolina to see my folks. My
mom was here when she was 2 weeks old, but no one else has seen her yet.
It looks like we are going to have to wait a while longer to visit the Roe side
of the family, as I am currently writing from the PICU (Pediatric Intensive
Care Unit) at MaryBridge Hospital. Saturday night Kajsa
was doing great!! We went to our friends’ Christmas exchange & she giggled
& played with everyone there. Yesterday morning when we woke up she was
irritable, feverish & slept most of the day. I thought she was probably
teething, as these were all typical symptoms when Maya went through it.
Worst-case scenario, I thought perhaps she’d contracted my ear infection.
I awoke this morning; however, to her grunting with intermittent high-pitched
screams. Her fever was more severe. She also rocked back & forth &
seemed out of touch with her surroundings. Also, her lips were blue & her
skin was gray. I immediately called our pediatrician, Dr. Oriel, & was at
his office by 9:20 am. They placed her on O2
and called an ambulance to drive us to MBER.
She is currently under with an amnesiac for the times when she briefly has
moments of consciousness. We don’t want her to remember being intubated or the
subclavian I.V. they had to place. She’s had 4 X-rays and an echocardiogram.
These ruled out cardio genesis (caused by heart problems), & showed us that
it is probably viral in nature. This led to swabbing her for a viral screen. So
far, we know that she is negative for influenza, but we are waiting for the rest
of the results to be processed. Also, she received her first transfusion due to
anemic status. We now know that Kajsa is O positive like her mommy.
Right now, that’s what we know. I’ll write more tomorrow or maybe later
tonight. Just thought I’d catch you all up. Oh, our number is 253-403-1434 Room
794. The special code is 4730. Love you all.
Saturday, February 21, 2004
Life’s been outrageous. We moved, Kajsa was in and out of the hospital almost
constantly, and I still have the usual duties of a mom & wife. It’s kept me
from updating this site well & I apologize if this has been frustrating for
Enough of this…onto the current news:
Kajsa had surgery Wednesday for placement of her peritoneal dialysis catheter.
It went fantastically (the surgeon even said boring) and she appears to be
healing very well. She’s still quite sore & a little bit crankier than
usual. But with her great disposition, someone unfamiliar would never know.
We should be seen on an outpatient basis only for the next 6 weeks. During that
time, Chris, Lynne and I will be learning the ins and outs of the dialysis
machine. Fun, fun.
If anyone still has questions about how her dialysis works; remember, there’s a
really helpful link at the bottom of this page.
Once Kajsa’s all healed up around her catheter site, well begin PD (peritoneal
dialysis) at night. This is apparently a very gentle, soothing experience that
tends to soothe people to sleep. Big thanks for small miracles!
Since life is beginning to settle down a bit, I should be better update with
regularity. Again, my apologies with regards to this winter. It really was an
unpredictable roller coaster. Write to you soon.
Thanks again for the continued love and support.
Wednesday, March 24, 2004
been too long. Mostly that’s because things are going well.
Kajsa’s been on nightly dialysis for a couple of weeks now & is SO active
that I sometimes wonder if someone switched kids on me!! She’s gone from
sleeping 17-20 hours per day to keeping us up at night with her ACTIVE
It’s hard to accurately describe the difference. Kajsa had a visit with her
primary nephrologists today. She just giggled her way through the appointment,
shocking all present! I hope that this is a sign of things to come.
If she stays healthy (relatively speaking) and happy, we should be able to
begin the work up for a transplant as soon as she meets the age & weight
requirements. I realize that with transplant candidacy comes the hurry up &
wait type of stress, so I’m determined to coast along on this gentle limbo that
is dialysis. My hope is that PD (peritoneal dialysis) continues to be this easy
& helpful; enabling all of us to rest & recuperate from last winter’s
emotional roller coaster.
I have no new photos at this time, because we haven’t yet unpacked all of the
computer equipment. Fortunately, Lynne & Paul live next door & are
generous with this one. Perhaps I’ll try to take a new picture with their
digital camera. Oh, that reminds me…Kajsa is to be an example cited by our
nephrology nurse as she travels next month to Washington D.C. to lobby for
nephrology/dialysis patients. I get to take some photos of her dialyzing. We
will be used as an example to show that the financial upheaval that can accompany
the arrival of a child with a chronic illness. I’m excited to help in any way.
Perhaps we can set precedence for further assisting future patients!
Well, I’ve been over here for a while. Chris & Maya are watching Kajsa, but
my time’s probably up right about now.
Love to you all!!
Wednesday, May 19, 2004
Kajsa just had her monthly scheduled doctor’s appointment.
She’s doing so well!!
Let’s see, what are the newest changes.
She starts Human Growth Hormone today.
It’s in a little epi-pen & supposedly doesn’t hurt very much
according to the teen-agers that Teresa works with.
This will not only help her to grow at a more normal rate,
but will also increase her metabolism and muscle mass.
Apparently we’ll be harboring our very own human version of a bulldog,
as she will have even more muscle tone than typical children.
Dialysis is going extremely well.
We’re increasing the volume fill tonight,
so it should be even more effective.
Physical therapy is quite helpful
& she’s adapting to the homework well.
Hopefully she’ll be rolling on her own within a month.
Then we get to start working on crawling.
After that she’ll probably begin to take
the initiative more than she has, historically.
Feeding Therapy is slower & a bit more like pulling teeth.
Fortunately, we have one of the top feeding therapists in the country.
Her mental state lately is fantastic with lots of clapping,
laughing & yelling "Bupp" at the top of her lungs.
We’re really looking forward to her birthday party on the 29th.
Come on by.
We’ll be barbequing all day.
Friday, January 28, 2005
so I know that it’s been a really looong time since I last updated Kajsa’s web
page. So here are the latest (and some of the not so latest) updates.
First I’ll address our familial news. We’re moving! As of February 28th we’ll
be residing in Arizona. And I’m telling you,
if you thought that moving with a healthy family was a hassle, try organizing a
state to state transfer of a kiddo with a chronic illness. We have fun
exercises in futility such as the following way I spent my day.
Several telephone conversations uncovered the following information:
1. We can’t make an initial appointment at Phoenix Children’s unless we get a
release form from Children’s Seattle.
2. This cannot happen unless we have a nephrologist to send it to.
3. But we won’t have a nephrologists assigned to us until we make our initial
appointment which, of course we cannot do without a release form.
You see what I mean. And this is only one teensy part of Kajsa’s galaxy of
Alright, enough ranting…
to what you probably checked in for. Kajsa’s doing great! Her labs have been
fantastic lately. In fact, they’re good enough that she’s down to only 4 daily
oral meds (!) and a couple of shots. Her dialysis therapy has been modified to
a very mild treatment.
She’s also coming along very well with her physical therapy. In fact, she even
took a few steps on her own today. It’s so adorable! She had to control the situation
& decide to let go, but then our sweet little Frankenstein came galumphing
(quite quickly) with both arms outstretched directly at me. So inspired, she
turned around & walked to Daddy, then me, then Daddy, etc. Such fun!
Now, I don’t know what the transplant policy is in AZ. Here, she would be
eligible to begin her workup in 4 months. I do know that each hospital &/or
State has its own policies. I’ll be curious to learn what differences there may
be at PCH. I’ll let you know when I find out.
Again, thank you all for your continued love & support. Hopefully, we’ll be
able to establish an internet connection in Yarnell. If not I’ll be working
from the library. That way I can keep things as up to date as possible!
Friday, February 25, 2005
Please be forewarned: This is a goodbye letter, and gets rather sappy…
So here we are, just 3 days away from our flight to Arizona and I think we are about
as ready as we could be. Kajsa’s doing very well, physically. In fact, the
other day, she stood up on her own and walked across the room. She has since
been practicing a lot.
I am going to really miss all the folks in WA who’ve been so helpful. We
had our last visits with both Kajsa’s Nephrologist and Physical Therapy team
There will be a few changes with physical therapy. Here, we have gone to
Children’s Therapy Center of Kent. They cover all her therapies, have
playgroups for children of varying physical abilities and even made her
orthotic shoes. In Arizona (at least the rural areas), the therapists come to our home. I don’t
know whether or not there are any play groups. I hope so. If not, I’ve talked
with Cheryl, who was Kajsa’s teacher at CTC. She told me that she would be
happy to help me format a group if needed. How kind! We’ll miss Stella, Jenn
and Gayloyd who have helped Kajsa to come so far.
With regards to Nephrology, we cannot fully express the gratitude felt.
I’m placing a photo of our last visit with Dr. Becker onto our photo page. She
has seen us through so much. Today, when I spoke with her on the phone, she
said that I had taught her a lot…especially about the perseverance of the human
spirit. This was very special to me. I do have to say that I could never have
stuck through much of the past year and a half without the emotional and
informational support provided by Dr.’s Becker and Holleman and (of course) the
unbelievable font of knowledge and empathy that is Teresa Simek, our nurse/case
manager. I wish you all well. I remember the first time I met each of you. If
I’d known then how much you’d mean to me, I would have given you a big hug
right then and there. As it was, I cried a lot and resisted everything you
suggested. Thank you for your patience while I learned. You have made me a
better person than I knew I could be.
In Phoenix our Nephrologist will be Dr. Morgenstern. I hear he’s incredibly
qualified. Hopefully he can handle headstrong mommies with as much humor and
kindness as we’ve been privy to thus far. The department social worker, Sandra,
has been quite helpful already. She explained some tricks for navigating the AZ
insurance system. I look forward to meeting her in person.
Our dialysis clinic will be through the Nephrology Department at PCH.
This should prove convenient. As you may know, we’ve been coordinating dialysis
and nephrology at 2 different hospitals in 2 different cities. This was by our
own choosing. We had developed such a feeling of trust with the MaryBridge team
that we didn’t want to fully transfer. Dialysis; however, allowed us to meet
and work with still more great people. Nancy, our dialysis nurse, has been a
truly terrific resource and friend, always adding comic relief just when I
needed it. Thank you! And Lorrie (nutrition) and Kristin (social work)…both of
you, in your own ways, have increased the light in our lives.
Now for the hardest part: I am going to miss my Bupp family so much.
There are so darn many of you. It’s next to impossible to ever feel alone or
unsupported. I have been quite fortunate to be surrounded by a web of love and
caring. Erick who completely lights up my baby’s face, and always takes the
time to say “hi” back. Katie, I’ll miss sharing stories and yummy treats. I
know that Maya will truly miss her special times with the 2 of you. Elisabeth,
we’ll have to come back just so Kajsa can climb your apple tree. Steve who
tells me my kids are great – and is always ready to lend a hand. And Lynne…I’ll
miss knowing that you’re right there, to hold each others hand when times are
tough, to tell Kajsa stories about her dad, or just to pop in on & shoot
the breeze. I love you.
And this only begins to scratch the
surface. There is the whole extended Bupp clan and all of our wonderful
friends. I know it won’t be the same, but we’ll visit as often as we can…
April 29, 2005
Well we just had our monthly nephrology meeting on Wednesday and it went fairly
well. We met with nutrition (Ami), social work (Sandra), our P.D. nurse
(Joanne) and of course the Nephrologist (Dr. Morgenstern). We discussed Kajsa’s
health and all the changes to meds required this month. But, the fascinating
part was talking with social work. Sandra is our first step to transplant
coordination. She helped to dispel some of the misinformation I’d received in
the past, and to inform me of what all goes into donation by a friend or family
We expect to transplant sometime in the next year, depending upon when and if
we get a live donor. If we are unable to do so, Kajsa will go onto a transplant
list to wait for a fatality which matches her tissue type.
The main advantages of a live donor are that:
1. This type of transplant tends to be more successful, meaning that the organ
rejection is less likely.
2. The surgery can be scheduled for a time when people can take time off of work,
rather that carrying a pager to wait for a call to come to Phoenix, just in
case of a match.
Now, down to the nuts and bolts of it…If anyone is interested in becoming a
donor, there are a few criteria that you need to meet:
1. You must be healthy with no prior kidney ailments. This includes such things
as kidney stones, bladder reflux, etc.
2. You must be between 18 and 45 years of age.
3. You must go to a lab to check for a match in blood type. I found out that
this is generally done one time to make a match, and once a couple of days
before the scheduled surgery. This is far less often that I had previously
4. You need to have a chest X-ray, an EKG, and if you are a woman, a
5. Lastly, and I feel most importantly, you must have the ability to take off 2
weeks to 1 month of time from work. This is because after the surgery you need
to check back in 10 days post operation, at Good Samaritan Hospital in Phoenix, to make certain that
you are recovering well. Then of course you have healing time before returning
to work. Each person has their own rate of healing and perception of pain.
Sandra said that getting up to speed could take anywhere form 2 weeks to 1
month. This is an important step, and definitely not to be underestimated.
Now I know that this is a huge deal, and I will absolutely hold nothing against
anybody for not coming forth. In fact, I thank you for not wasting your time
and ours, if you are not absolutely certain that this is a commitment that you
can truly make. If; however, you are 100% sure that this is something that you,
your family, and your employer can manage, please let me know. My email is
I want to let you know also that you are in no way financially responsible for
this surgery. Kajsa’s insurance is set up for this purpose. Thank you for
taking the time to read this update. I needed to put this out there so that I
could direct interested parties.
To everybody, I continue to be amazed by the outpouring of love and concern we
get from all of you. It gives us strength during the hard times and increased
joy during the easy ones. We all send our love to you, and wish you well.
Please, drop us a line sometime and let us know how your lives are going.
Well that’s it. A few short weeks after I wrote that last entry, I began my first
blog. And the rest is (my/our personal)
If your or someone you know is
experiencing a time of great health changes and wishes to reach out to others
or simply (as I did) keep in touch, CaringBridge is a