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Updates- 2010
Kelli's Page
December 23, 2010
Kelli was taken to St. Joe's for placement of the PICC line. Sorry honey, not a great Christmas
present. Since it needed to be done in radiology we had to register. While we were sitting at
registration, Kelli said she wasn't feeling great. She was laying kind of slumped over which really
wasn't like her. When we finally got into register, Kelli said that she wasn't feeling well, that she
felt kind of weird. So I told her just to lay her head back and that everything would be okay. About
that time it dawned on me that we had given her a Marinol tablet and that was probably why she
wasn't feeling well. The day prior, Kevin and I decided together that since she was getting the PICC
and in an effort to help her feel hungry we would give her a Marinol tablet that had been previously
tank behind us. As we got off the elevator and started walking toward radiology she started walking
kind of strange and I asked her if she was okay and she answered yes. A lady then walked by and
said hi and smiled and Kelli answered with some kind of gobbly-gook. I asked her what that was
about and she looked at me like I was crazy. As we were signing her in at radiology, Kelli freaked
out. She threw herself to the floor and I barely caught her before she hit it. As I was trying to get
her oxygen back on her she took her eyeglasses off and twisted them in half with one hand. She
started yelling and cussing and it took every ounce of energy I had to control her. The nurse finally
got the idea that this was not normal, after asking me, and assisted me into the waiting area with
Kelli. She wanted to call a crash cart but I told that she wasn't crashing and that I knew what was
wrong with her because once I sat down with her I could clearly see it. Kelligar was having a "bad
trip" from the Merinol. Between losing 4 lbs and also being on oxygen the affects of the Merinol
were taking it's toll on her.
As we were sitting there, with my heart racing and feeling like it was going to fall out of my chest,
she started to come out of it. About that time her nurse coordinator walked into the waiting room.
Concerned she asked what was going on and I told her. She confirmed that Kelli was basically
tripping and while it was funny because we knew what was happening it really wasn't funny at all.
Then to add insult to injury, her doctor also came into see what had happened. He confirmed my
diagnosis, of course gave me a light tongue lashing for giving her the med, even though it was hers,
(and like I didn't feel like total crap already) and said that if she didn't come out of it quickly that he
would admit her. The joke around the transplant community is that HLI will hospitalize if you have
a hang nail. So, I simply told him, that she was already come out of it and that I would just sit there
as long as it took for the effects of the Merinol to wear off. But I also suggested that they perhaps
place the PICC line anyway, because they would have to give her something to relax her to the state
she was already in. Luckily, later on, the radiologist came to see us and agreed that she looked okay
and that they would go ahead and place the PICC line. That went smooth and easy - relatively
speaking. The entire event made me then and still feel like vomiting.
We came home and TPNs were sent via home health. TPN administration was wrought with
disaster.
December 6-9, 2010
We had spent the second week of December 2010 at St. Louis Children's Hospital for four days of
testing for evaluation for re-transplant. There was some confusion as to why we were there. We
had spoken via conference call and we thought it was made very clear that Kelli was there to be
re-evaluated for transplant. However, once there, it was evident that some of the staff thought we
were there for a check up. When we first received her schedule for testing we were surprised at how
light a schedule it was (for evaluation for re-transplant) and seeing that not everyone was on the
same page with us once we got there confirmed our suspicions. Additional tests were quickly
scheduled. Since some of her tests ran over into Thursday, we were told that there would be no
confirmation on whether or not they would do the re-transplant until at least the following
Thursday, which is when they have their meeting to discuss their patients. We were told before left,
that the bone density scan revealed severe osteoporosis and Kelli was in danger of breaking bones.
In just one year's time she had developed osteoporosis. Think starvation takes a toll on your body?
Since we had figured that we (Kelli and Ursula) would remain in St. Louis from that point forward
to "fatten" Kelli up and possibly undergo another transplant we had made preparations to spend
Christmas there and have the boys come out. Unfortunately, since the snafu occurred with the
scheduling of tests we figured there was no reason to hang around another week just waiting for
them to make a decision which may or may not have been made the following Thursday, so we
decided to fly home.
The entire trip was a nightmare, and Kelli felt like crap the entire time. She was on a portable
oxygen machine which didn't work half the time as we found once we got there that the charger was
broken and had not been charging the batteries. We did have a car charger and were lucky enough
to charge them for four hours at a time in our rental car in 11 degree weather.
While we were disappointed to be home again we felt we were blessed to be home and be able to
share the holidays together. Although Kelli was on oxygen and tired most of the time, we were able
to bake together, do some shopping, and just spend time loving each other up. To say she felt great
would be a lie. She felt like crap all the time and we knew it.
We got the call from St. Louis the following Friday and we were told that Kelligar was turned
down for re-transplant because ironically she was too underweight, and therefore they felt, too
fragile, to undergo a surgery of this magnitude. While it was disheartening, Kevin and I would have
been equally alarmed had they elected to do the surgery because we felt the same way.
However, they did want us to come back out and they had developed a plan to help Kelligar gain
weight with the idea that she would be re-evaluated and more than likely accepted for re-transplant
once she gained weight. It was agreed that a PICC line would be placed and she would start
receiving IV feeds called TPNs. I had also asked about the possibility of placing Kelli on a bipap or
c-pap machine at night, which was hoped to assist her in breathing, allowing her to breathe better
and expend less energy doing so and ultimately increase her chances at gaining weight, and it was
agreed that this would also take place.
Due to timing of our appointment and the holidays and after conversations with the St. Louis
Hospital staff we agreed that if a PICC line was placed here at HLI as soon as possible then we
would remain here in Phoenix until the first of the year and then we would head out to St. Louis.
However, if we could not get Kelli's doctor here to place a PICC line and get TPNs started then we
would have left the day after Christmas for St. Louis. Because her doctor hated TPNs (because
there is a potential risk of infection, especially for those with suppressed immune systems) there
was a delay in getting the PICC line placed. Finally, after a call between transplant doctors/centers,
Kelli finally had the PICC line placed at St. Joes.
November 2010
It is more than just a little irritating and aggravating that we cannot seem to get all her doctors on
the same page and in agreeance with the severity of the issue Kelligar is facing.
Our fear with pain management is that the doctors will stop looking for the source of her stomach
problems. Our fears are not unfounded. Her lung doctor has implied that she over-exaggerates the
severity of the pain and he does not feel that it is negatively impacting her (at least not that much).
Her GI doctors understand there is pain and seem to want to fix it, but we have not seen a ton of
extra effort go into finding out what is wrong and how to fix it. We might be wrong about this, but if
this course follows the way it has gone historically, we are not wrong. Simply stated, if they cannot
or will not figure out what is wrong in a really timely manner then why can't they refer us to
specialists that can? The second opinion at PCH was just an exercise in futility, in our opinion. It
does not matter how great the doctor is if they are too busy to treat the patient. And if they are that
busy then they cannot give complete care to the individual - which is sad.
October 2010
Monday the 4th seemed like any other day, though Kelli told me she felt worse than usual at
school. That night was a rough one. She was vomiting and was not oxygenating well and kept
de-sating into the low 80's which required us to pull out and use the oxygen we have never used
before. She woke up feeling too sick so we did not even make it to her follow up appointment
scheduled for Tuesday, October 5. Instead, she was readmitted to St. Joe's.
At our request, the "j" portion of the tube was pulled from her intestine and at the same time the
doctor scoped her stomach area and took samples to biopsy. While she was still under the influence
of the local anesthetics she woke up saying she was starved and proceeded to eat 3/4 of a hamburger,
some pickles, tomato, candy corn and some pomegranate. While everyone was excited, we have
found that was short lived. We asked if there was some kind of pain killer that could be
administered prior to eating that could take away some of the pain. She was given viscous lidocaine
20 minutes before her nighttime feeds started and she handled the feeds well and slept throughout
the night without being in excruciating pain!
Her lung doctor hated the fact that she had a PICC line in and was convinced that it was infected
despite the fact that all cultures came back negative and he had the PICC line pulled prior to us
leaving the hospital. So, she is no longer receiving IV feeds.
We came home on Friday, October 8, 2010. Kelli has to have the lidocaine prior to every meal in
order to eat, as well as prior to the nighttime feeds she receives. Her breathing is a little better,
though she still requires oxygen from time to time. We have started walking, 3 times daily, in order
to strengthen her leg and back muscles which hurt from lack of exercise. We also take the oxygen
with us - just in case.
August and September 2010
The start of the new school year came with many challenges. Truth told, Kelli has probably only
attended maybe two weeks of school during these two months. Her teachers are gracious and have
continued to supply us with work to keep her caught up, but we fear she may have to take summer
school or repeat the 6th grade if we do not find any resolution to her stomach issues soon. She was
in and out of St. Joseph's and Phoenix Children's (PCH) Hospitals for most of these months.
We went to PCH for a second opinion for her stomach ailments. Ultimately, Dr. Ursea had Kelli
admitted and gave us her word that she would find out what was wrong with her tummy.
Unfortunately, Dr. Ursea never actually saw Kelli when she was at the hospital (almost two weeks).
Kelli had a scope done (on both ends) neither of which showed anything too alarming, with the
exception that the "j" portion of the button was too short and creating ulcerations in the duodenum
area. The "j" button was replaced with one that was about 8 inches longer. Kelli was released but
in worse shape than when she went to the hospital. When we went in she was able to take about 110
mls of liquid nutrition per hour through her button but when we left she could only tolerate 40-50
mls per hour and was in acute pain. They also placed a PICC line so she could receive TPN
(nutrition via IV). Our initial concerns were validated. Dr. Ursea hospitalized and then treated
Kelli with IV feeds as part of her standard protocol. While the TPN feeds may not have been
unwarranted it did little to solve Kelli's underlying stomach issues. In my opinion, Ursea is an idiot.
She was hospitalized again in September by St. Joe's for breathing-related issues. We had gone
in for a stomach CT with contrast but she was in such pain from taking in 500 ML of fluid in 3 hours
that she could not even do her standard breathing tests. The stomach issues have been so bad and
have changed the way she breathes (protective breathing) that we simply missed it. The visit was
warranted. She received a few days of IV steroids and antibiotics. The CT with contrast showed
about an 8 inch area in her intestine that was "thickened". They were unable to determine what
the thickening was, i.e., thickening, inflammation, telescoping intestine, etc., and she was taken off
enteral feeds. Once the IV steroids and antibiotics were finished we went home.
July 30 through August 4, 2010
We flew into Madison, Wisconsin, to attend the 2010 Transplant Olympics. In spite of being sick
with the stomach issues that still plague Kelli's day-to-day life, she was able to muddle through the
Badminton and Bowling events. She received the 2nd Place medal in Badminton, and while she did
not take a medal in bowling, she only came in fourth place, which was huge for her since she really
was not feeling well that day. We spent the week in the Wisconsin Dells playing at all the water
parks and visiting with brothers, sisters, cousins, aunts and uncles who live in Wisconsin. Kelli's
aunt and uncle had a birthday bash at their house for Kelli. We were lucky to have so many people
who we love show up and help celebrate. A fun time was had by all. Thanks Aunt Tracy and Uncle
Dan!
February 2010
We are experiencing some technical difficulties. Please bear with me. It became apparent that my
updates were not being saved AND quite a bit of the website text is jumbled. I have the fun task of
checking out everything. So bear with me!
January 2010
January proved to be a very challenging month. Kelli unfortunately had to repeat many of the
stomach tests she had done last year. The tests really found nothing wrong. So it was decided to
have her stomach button changed from a button that goes directly into her stomach to one that goes
straight into her intestines, thus bypassing her stomach altogether. For whatever reason, this has
appeared to work. Her stomach is no longer irritated and she has stopped vomiting. She has
regained some of her appetite and although she is not eating giant meals, we are happy that she is
just eating!!!
Kelli was taken to St. Joe's for placement of the PICC line. Sorry honey, not a great Christmas
present. Since it needed to be done in radiology we had to register. While we were sitting at
registration, Kelli said she wasn't feeling great. She was laying kind of slumped over which really
wasn't like her. When we finally got into register, Kelli said that she wasn't feeling well, that she
felt kind of weird. So I told her just to lay her head back and that everything would be okay. About
that time it dawned on me that we had given her a Marinol tablet and that was probably why she
wasn't feeling well. The day prior, Kevin and I decided together that since she was getting the PICC
and in an effort to help her feel hungry we would give her a Marinol tablet that had been previously
tank behind us. As we got off the elevator and started walking toward radiology she started walking
kind of strange and I asked her if she was okay and she answered yes. A lady then walked by and
said hi and smiled and Kelli answered with some kind of gobbly-gook. I asked her what that was
about and she looked at me like I was crazy. As we were signing her in at radiology, Kelli freaked
out. She threw herself to the floor and I barely caught her before she hit it. As I was trying to get
her oxygen back on her she took her eyeglasses off and twisted them in half with one hand. She
started yelling and cussing and it took every ounce of energy I had to control her. The nurse finally
got the idea that this was not normal, after asking me, and assisted me into the waiting area with
Kelli. She wanted to call a crash cart but I told that she wasn't crashing and that I knew what was
wrong with her because once I sat down with her I could clearly see it. Kelligar was having a "bad
trip" from the Merinol. Between losing 4 lbs and also being on oxygen the affects of the Merinol
were taking it's toll on her.
As we were sitting there, with my heart racing and feeling like it was going to fall out of my chest,
she started to come out of it. About that time her nurse coordinator walked into the waiting room.
Concerned she asked what was going on and I told her. She confirmed that Kelli was basically
tripping and while it was funny because we knew what was happening it really wasn't funny at all.
Then to add insult to injury, her doctor also came into see what had happened. He confirmed my
diagnosis, of course gave me a light tongue lashing for giving her the med, even though it was hers,
(and like I didn't feel like total crap already) and said that if she didn't come out of it quickly that he
would admit her. The joke around the transplant community is that HLI will hospitalize if you have
a hang nail. So, I simply told him, that she was already come out of it and that I would just sit there
as long as it took for the effects of the Merinol to wear off. But I also suggested that they perhaps
place the PICC line anyway, because they would have to give her something to relax her to the state
she was already in. Luckily, later on, the radiologist came to see us and agreed that she looked okay
and that they would go ahead and place the PICC line. That went smooth and easy - relatively
speaking. The entire event made me then and still feel like vomiting.
We came home and TPNs were sent via home health. TPN administration was wrought with
disaster.
December 6-9, 2010
We had spent the second week of December 2010 at St. Louis Children's Hospital for four days of
testing for evaluation for re-transplant. There was some confusion as to why we were there. We
had spoken via conference call and we thought it was made very clear that Kelli was there to be
re-evaluated for transplant. However, once there, it was evident that some of the staff thought we
were there for a check up. When we first received her schedule for testing we were surprised at how
light a schedule it was (for evaluation for re-transplant) and seeing that not everyone was on the
same page with us once we got there confirmed our suspicions. Additional tests were quickly
scheduled. Since some of her tests ran over into Thursday, we were told that there would be no
confirmation on whether or not they would do the re-transplant until at least the following
Thursday, which is when they have their meeting to discuss their patients. We were told before left,
that the bone density scan revealed severe osteoporosis and Kelli was in danger of breaking bones.
In just one year's time she had developed osteoporosis. Think starvation takes a toll on your body?
Since we had figured that we (Kelli and Ursula) would remain in St. Louis from that point forward
to "fatten" Kelli up and possibly undergo another transplant we had made preparations to spend
Christmas there and have the boys come out. Unfortunately, since the snafu occurred with the
scheduling of tests we figured there was no reason to hang around another week just waiting for
them to make a decision which may or may not have been made the following Thursday, so we
decided to fly home.
The entire trip was a nightmare, and Kelli felt like crap the entire time. She was on a portable
oxygen machine which didn't work half the time as we found once we got there that the charger was
broken and had not been charging the batteries. We did have a car charger and were lucky enough
to charge them for four hours at a time in our rental car in 11 degree weather.
While we were disappointed to be home again we felt we were blessed to be home and be able to
share the holidays together. Although Kelli was on oxygen and tired most of the time, we were able
to bake together, do some shopping, and just spend time loving each other up. To say she felt great
would be a lie. She felt like crap all the time and we knew it.
We got the call from St. Louis the following Friday and we were told that Kelligar was turned
down for re-transplant because ironically she was too underweight, and therefore they felt, too
fragile, to undergo a surgery of this magnitude. While it was disheartening, Kevin and I would have
been equally alarmed had they elected to do the surgery because we felt the same way.
However, they did want us to come back out and they had developed a plan to help Kelligar gain
weight with the idea that she would be re-evaluated and more than likely accepted for re-transplant
once she gained weight. It was agreed that a PICC line would be placed and she would start
receiving IV feeds called TPNs. I had also asked about the possibility of placing Kelli on a bipap or
c-pap machine at night, which was hoped to assist her in breathing, allowing her to breathe better
and expend less energy doing so and ultimately increase her chances at gaining weight, and it was
agreed that this would also take place.
Due to timing of our appointment and the holidays and after conversations with the St. Louis
Hospital staff we agreed that if a PICC line was placed here at HLI as soon as possible then we
would remain here in Phoenix until the first of the year and then we would head out to St. Louis.
However, if we could not get Kelli's doctor here to place a PICC line and get TPNs started then we
would have left the day after Christmas for St. Louis. Because her doctor hated TPNs (because
there is a potential risk of infection, especially for those with suppressed immune systems) there
was a delay in getting the PICC line placed. Finally, after a call between transplant doctors/centers,
Kelli finally had the PICC line placed at St. Joes.
November 2010
It is more than just a little irritating and aggravating that we cannot seem to get all her doctors on
the same page and in agreeance with the severity of the issue Kelligar is facing.
Our fear with pain management is that the doctors will stop looking for the source of her stomach
problems. Our fears are not unfounded. Her lung doctor has implied that she over-exaggerates the
severity of the pain and he does not feel that it is negatively impacting her (at least not that much).
Her GI doctors understand there is pain and seem to want to fix it, but we have not seen a ton of
extra effort go into finding out what is wrong and how to fix it. We might be wrong about this, but if
this course follows the way it has gone historically, we are not wrong. Simply stated, if they cannot
or will not figure out what is wrong in a really timely manner then why can't they refer us to
specialists that can? The second opinion at PCH was just an exercise in futility, in our opinion. It
does not matter how great the doctor is if they are too busy to treat the patient. And if they are that
busy then they cannot give complete care to the individual - which is sad.
October 2010
Monday the 4th seemed like any other day, though Kelli told me she felt worse than usual at
school. That night was a rough one. She was vomiting and was not oxygenating well and kept
de-sating into the low 80's which required us to pull out and use the oxygen we have never used
before. She woke up feeling too sick so we did not even make it to her follow up appointment
scheduled for Tuesday, October 5. Instead, she was readmitted to St. Joe's.
At our request, the "j" portion of the tube was pulled from her intestine and at the same time the
doctor scoped her stomach area and took samples to biopsy. While she was still under the influence
of the local anesthetics she woke up saying she was starved and proceeded to eat 3/4 of a hamburger,
some pickles, tomato, candy corn and some pomegranate. While everyone was excited, we have
found that was short lived. We asked if there was some kind of pain killer that could be
administered prior to eating that could take away some of the pain. She was given viscous lidocaine
20 minutes before her nighttime feeds started and she handled the feeds well and slept throughout
the night without being in excruciating pain!
Her lung doctor hated the fact that she had a PICC line in and was convinced that it was infected
despite the fact that all cultures came back negative and he had the PICC line pulled prior to us
leaving the hospital. So, she is no longer receiving IV feeds.
We came home on Friday, October 8, 2010. Kelli has to have the lidocaine prior to every meal in
order to eat, as well as prior to the nighttime feeds she receives. Her breathing is a little better,
though she still requires oxygen from time to time. We have started walking, 3 times daily, in order
to strengthen her leg and back muscles which hurt from lack of exercise. We also take the oxygen
with us - just in case.
August and September 2010
The start of the new school year came with many challenges. Truth told, Kelli has probably only
attended maybe two weeks of school during these two months. Her teachers are gracious and have
continued to supply us with work to keep her caught up, but we fear she may have to take summer
school or repeat the 6th grade if we do not find any resolution to her stomach issues soon. She was
in and out of St. Joseph's and Phoenix Children's (PCH) Hospitals for most of these months.
We went to PCH for a second opinion for her stomach ailments. Ultimately, Dr. Ursea had Kelli
admitted and gave us her word that she would find out what was wrong with her tummy.
Unfortunately, Dr. Ursea never actually saw Kelli when she was at the hospital (almost two weeks).
Kelli had a scope done (on both ends) neither of which showed anything too alarming, with the
exception that the "j" portion of the button was too short and creating ulcerations in the duodenum
area. The "j" button was replaced with one that was about 8 inches longer. Kelli was released but
in worse shape than when she went to the hospital. When we went in she was able to take about 110
mls of liquid nutrition per hour through her button but when we left she could only tolerate 40-50
mls per hour and was in acute pain. They also placed a PICC line so she could receive TPN
(nutrition via IV). Our initial concerns were validated. Dr. Ursea hospitalized and then treated
Kelli with IV feeds as part of her standard protocol. While the TPN feeds may not have been
unwarranted it did little to solve Kelli's underlying stomach issues. In my opinion, Ursea is an idiot.
She was hospitalized again in September by St. Joe's for breathing-related issues. We had gone
in for a stomach CT with contrast but she was in such pain from taking in 500 ML of fluid in 3 hours
that she could not even do her standard breathing tests. The stomach issues have been so bad and
have changed the way she breathes (protective breathing) that we simply missed it. The visit was
warranted. She received a few days of IV steroids and antibiotics. The CT with contrast showed
about an 8 inch area in her intestine that was "thickened". They were unable to determine what
the thickening was, i.e., thickening, inflammation, telescoping intestine, etc., and she was taken off
enteral feeds. Once the IV steroids and antibiotics were finished we went home.
July 30 through August 4, 2010
We flew into Madison, Wisconsin, to attend the 2010 Transplant Olympics. In spite of being sick
with the stomach issues that still plague Kelli's day-to-day life, she was able to muddle through the
Badminton and Bowling events. She received the 2nd Place medal in Badminton, and while she did
not take a medal in bowling, she only came in fourth place, which was huge for her since she really
was not feeling well that day. We spent the week in the Wisconsin Dells playing at all the water
parks and visiting with brothers, sisters, cousins, aunts and uncles who live in Wisconsin. Kelli's
aunt and uncle had a birthday bash at their house for Kelli. We were lucky to have so many people
who we love show up and help celebrate. A fun time was had by all. Thanks Aunt Tracy and Uncle
Dan!
February 2010
We are experiencing some technical difficulties. Please bear with me. It became apparent that my
updates were not being saved AND quite a bit of the website text is jumbled. I have the fun task of
checking out everything. So bear with me!
January 2010
January proved to be a very challenging month. Kelli unfortunately had to repeat many of the
stomach tests she had done last year. The tests really found nothing wrong. So it was decided to
have her stomach button changed from a button that goes directly into her stomach to one that goes
straight into her intestines, thus bypassing her stomach altogether. For whatever reason, this has
appeared to work. Her stomach is no longer irritated and she has stopped vomiting. She has
regained some of her appetite and although she is not eating giant meals, we are happy that she is
just eating!!!