This may not be the
best organized story. It may not flow well. But our
journey hasn't flowed perfectly. It’s been a bumpy road, and
continues to be. I will keep this page updated and try over time to
smooth out some of the writing. But for now this gives our bumpy
journey in some sort of order.
We found out that I was
pregnant on April 20, 2009, 1 day before my 30th birthday. It was a
complete surprise. At a routine ultrasound on July 28, 2009 we
found out that Eli's kidney wasn't quite right. It was enlarged and the
doctor told us at this point that it was probably a small blockage that would
most likely correct itself. He did decide to do another ultrasound in a
few weeks just to check. At the next ultrasound his kidney had become
even more enlarged, and Eli wasn't growing as they would normally expect.
At this point the doc decided to do routine ultrasounds every 3 weeks. At
each ultrasound his kidney got worse and worse, and Eli's growth continued to
slow. Right before thanksgiving we had our last ultrasound and found out
that yet again Eli's kidney had grown larger, and since the last ultrasound 3
weeks before, he hadn't grown; not 1 inch or gained not even 1 oz. The
doctor scheduled an amnio for Dec 1st, and said most likely we would induce.
The amnio showed Eli's lungs to be ready, and I was already in labor. Eli
was born after 4 hrs of easy labor on Dec 1, 2009 at 4:02pm,
weighing 5lbs 11oz and 16 1/4in. Within an hour of his birth we knew
there was more to the story than just the kidney.
Eli began having
twitches and spasms to the point that you could hardly move him or touch
him. They did ultrasounds of his brain to check for bleeds, all were
negative. They thought maybe it was just a bit of neurological
prematurity and said it would be closely followed. They also found the
undescended testicles at this point as well.
We went home from the
hospital 2 days later on a Friday. By Sunday Eli had begun spitting
up. By Monday he was gagging and choking and he would stop
breathing. By Wednesday it was green and yellow bile that he was choking
on. He was admitted to St Joe for testing. It took forever.
He had so many tests, tests I had never heard of. If he was fed, if he
was moved, if nothing at all, he would choke and turn blue. It was so
scary during this time. He came home late Wednesday night with tons of
information but no real answers. His kidney was huge and squashing his
bladder, and he had level 3 reflux. They started him on meds. Thursday we
met with the urologist and they decided to do further testing on his
kidney. Friday we found out that his kidney was not working at all and
was a lot of dead tissue and fluid. He would be referred to a children's
hospital in KC for a surgeon.
We woke up on Monday Dec
14th to hell. This was the 1st time we were unsure if Eli would make it
thru the day. Eli woke up with a high fever and choking and gagging more
than he had been. He couldn't get his breath at all and was choking on
such thick mucus. Bob had to rush him to the bathroom and turn the shower
on hot and use the steam to try and break it up and be able to suction it
out. Eli was blue. He was rushed to the hospital, suctioned the
whole way. He was immediately admitted as his oxygen was dropping into
the 70's and lower. He had a severe kidney infection, aspiration
pneumonia, and a whole list of other things going on. They dropped an NG
tube, which is a feeding tube that goes from his nose to his tummy. At
this point he did still nurse some and also took some feeds thru the NG.
He was so tiny, having lost so much weight at this point. Every feed was
followed by throwing up, normally 10 plus times each feed. Every throwing
up session, involved him choking and turning blue. Overnight Friday the
19th we had our 1st glimpse into Eli's heart problems, although it wouldn't be
officially diagnosed for almost 2 more months. Eli failed his 1st swallow
study on Monday, Dec 21st. We begged and pleaded with the doctors to go
home for Christmas. Eli was discharged on Wednesday Dec 23rd, late in the
evening. He was sent home with an NG and tons of other equipment that we
didn't really understand.
We made it thru
Christmas, mostly. We were exhausted and lost and had no clue what we
were doing. Our oldest 4 kids came home on December 30th, and we hoped to
settle into the routine of a family, just the 7 of us.
January 2010 was spent
at doctor’s offices and labs. Eli couldn't seem to gain weight. He
kept choking and gagging and throwing up. The NG tube was in and
out. Nothing stabilized. He struggled continually and we just tried
to keep up. There were lots of tests, but no answers. There were
specialist appts, there were phone calls. It was a blurry mess.
February 2010 was spent
at the hospital. Eli wasn't gaining enough weight, he was so sick.
We met with the surgeon. She couldn't believe it. She said Eli was
one of the sickest little guys she had seen. He was so tiny and
malnourished. We met on Thursday Feb 4th. Surgery was on Monday Feb
8th. This was day 2 of thinking our son wouldn't make it thru the
day. I remember it like it was yesterday. The surgeon was not
optimistic about how Eli would do in surgery and coming out after surgery since
he was so sick; but he had to have this surgery to have a chance of making
it. The surgeon came out into the waiting room hours later and we
could tell it wasn’t good news. They couldn’t get Eli to wake up and
breathe on his own. She told us they were going to rush him to
PICU. We headed down to the waiting room. We waited. We
heard a noise in the hall and ran out; they were rushing his bed down the hall
with nurses all around. They were bagging him. They told
us they couldn’t stop and rushed past us. It was the scariest thing
I have ever seen. An hour later we were allowed back to see
him. He was hooked up to the vent and not doing well.
This is when we began to
realize that there were more heart problems. His heart rate was
incredibly high and then it would drop really low, his breathing was horrible,
and he struggled. He was “awake” and off the vent, on special
machines to help him breath. He was in a lot of
pain. They did an EKG and an ECHO. He had a hole in his
heart, an extra artery, and a heart murmur.
Eli finally came home on
Feb 13th. Nursing began on Feb 17th. I
was nursing during the day as much as he could tolerate, and pumping, and then
he was having continuous overnight feeds with his pump. Eli’s Mickey
was placed on Feb 23rd. It was so much easier and we
loved it. The rest of Feb was spent at home, figuring out how to
live.
Then came March
2010. March was again spent at home, slowly growing. He
did grow, but not enough, not fast enough. He wouldn’t throw up any
more, but he choked constantly. It was a daily event to see our
child turn blue. We never left his side. We were at
doctors all the time. Labs, x-rays, tests. It was a
constant.
April
2010. The beginning of the month took us to KC to meet the kidney
surgeon. He did lots of testing. Eli began getting sick
in KC. We came home and Eli was admitted to St Francis on Feb 11th. He
was discharged on the 12th. Eli spent most of the month
sick with pneumonia. He also had his EEG. The results
showed no seizures, although the neurologist is sure there is something going
on.
May 2010. Began
slowly. Then Eli started getting sick. By May 12th Eli
had pneumonia. This was a bad round. He had to go off
feeds. Breathing treatments constantly. His heart rate
went sky high. He wasn’t peeing. He got antibiotic shots
daily and we were able to keep him out of the hospital with this
one. He lost a lot of weight and we really struggled getting his
feeds back up. Next was his MRI with sedation. All showed
ok on this test.
June
2010. Eli’s lungs are just getting worse and worse. He’s
choking all the time. His oxygen drops frequently. He has
pneumonia almost constantly. His chest x-rays always show
fluid. Tuesday the 15th brought Eli’s next swallow
study. The radiologist running the test was a mess. She
goofed up the test and I knew it. I called and pushed for another
test. I knew it was wrong, I knew she was missing something. The
director of radiology agreed. The test was redone on Thursday the 17th. I
was right, but not in the way I expected. Eli failed. We
saw something on the test we had never seen before. They followed
the liquid farther down this time and there it was. His swallow
wasn’t so much the issue, but his esophagus was. It wasn’t
moving. After a few swallows the food had completely stacked up and
was then spilling over into his lungs. Everyone went frantic and ran
around calling everyone. Eli was put NPO. I have never
nursed my son since. He hasn’t had a bottle, a bite of food,
not 1 single drink since this day. The next week was spent on the
phone and a lot of crying. Phone calls were made to a motility
specialist in KC. Appointments and tests were
scheduled. Eli cried because he wanted to nurse, I cried because I
wanted to nurse him. It was a rough time. Saturday, June
26th Eli was hospitalized with a fever. He came home
the next day with another fever of unknown origin.
July 2010 brought a
failed sleep study. Eli was put on oxygen at nights and for
naps. His oxygen levels were dropping substantially at night
time. Tuesday the 4th we headed to KC to meet with
the motility specialist. The surgeon said that we needed to schedule
some tests and they would call me with all of that information. The
end of July took us back to KC to meet with his kidney surgeon for his next
round of testing. His kidney tests came back showing his kidney was still very
enlarged, but he didn’t want to schedule surgery until Eli was
stronger. They also did a swallow study while we were there and Eli
failed, and the test was stopped. Eli was immediately sick upon
coming home and we were able to talk to his pediatrician by phone to try and
figure out what next instead of heading to the ER.
August 2010 was
rough. Eli continued to stay sick. He coughed
constantly. He choked and gagged. His oxygen would drop
and he would get tired so quickly. We were at the cardiologist, the
pulmonologist, the pediatrician. It was a rush to figure out why he
was getting sicker and sicker. Wed the 11th we found out he had
pneumonia. He’s NPO and has a working fundo. Nobody knows
why he has pneumonia again. He’s put on O2 constantly at this
point. Eli just keeps getting sicker. Friday the 13th he
ends up in the ER. They run tons of tests but can’t figure out what
is going on. He gets sicker. Eli goes to his
pulmonologist on Tuesday the 17th. By Wednesday the 18th we
know what is going on. Eli has pertussis, whooping
cough. He is on tons of antibiotics, as well as the rest of
us. Eli just keeps getting sicker and sicker. He can’t
keep his O2 up, his heart rate is so high, and he is choking and
gagging. Monday Aug 30th Eli was admitted to the
hospital. He was on ½ liter O2 and by the middle of the night we had
to kick it up to 4 liters O2. His O2 kept falling. He was
again rushed to the hospital. Tons of things happened. It was such a
blur. This rushes us right into…
September
2010. They began Eli on the peds floor. I went home to
get some clothes and sleep, bob stayed at the
hospital. At 4:30am on September 1st my
phone rang at home. Eli had a choking spell, his sats dropped; it
took them almost 10 minutes to revive him. He was rushed to
PICU. Next the doctor called. He wasn’t sure if Eli would
make it thru the night and said to get up there now. Everything at
this point becomes a blur. My parents come. I drive
faster than ever before and get to the hospital. I run all the way
to the PICU. They can’t get a line. They can’t get him
stable. The PICC team comes but they can’t get a
line. The head of PICU tries for a central line and Eli crashes and
they have to bag him. He struggles. We are told they
don’t know if he will make it and it’s a day by day. Doctors
everywhere. We find out he has pulmonary
hypertension. His numbers are really high. The doctors
are worried. Finally, we went home with around the clock nursing and
more equipment than ever on Sept 9th. We were sent home
with ambu bags. We were trained on how to do advanced life saving,
how to bag our son. He choked constantly; he stopped breathing all
the time. He slowly began to recover at home. His heart
rate stayed very high and we had to use O2 a lot to try and keep it
down. By the 25th Eli was gagging and retching and
actually throwing up some. The 28th brought another
cardiologist appt and more tests. His pulmonary number has dropped
some more, but still very high. We found out as well that the nurse
at the motility specialist dropped the ball and lost Eli’s
paperwork. She forgot to schedule all of his tests. Now
he can’t swallow and can’t have the tests until he can safely swallow
some. On the 30th I went to the bedroom to get Eli’s
food, when I came out he was silently choking and turning blue. A
lot of phone calls to follow. They think it’s a loosened fundo from
all of the coughing. Back on O2 and the sat monitor continuous. Eli
is placed on continuous feeds instead of his bolus feeds. The goal
is to keep his stomach as empty as possible but still give him
calories. They are hoping this will get us by.
October 2010 rolls
around. Eli has surgery on Mon Oct 4th. They
cram tons of stuff into 1 surgery. He has scopes, and they try to
pull a testicle down, he has a flexible and rigid bronchoscopy, and a PH
probe. They tried for a line. She couldn’t get
one. She spent over an hour. She ended up having to slice
open his neck and put a line straight into his external jugular. He
woke up well but didn’t breathe well. He didn’t pee. They
ended up having to cath him. We were right back in
PICU. Eli came home on Wed the 6th with tons of
nursing and a catheter. His cath came out on Friday the 8th and
he was peeing on his own. He was still on continuous feeds at this
point. He went to KC for feeding clinic, and to try and work thru
his severe oral aversion. Oct 27th brought a sick
tiny man. His feeds are stopped and his back on continuous
pedialtye. On Friday the 29th Eli had a major choking
episode. He couldn’t get any air at all. The surgeon
immediately scheduled him to have a GJ placed.
November 1,
2010 brought a hospital trip to have the GJ placed. This
brought MORE information. Eli’s stomach isn’t moving
properly. He has gastric motility as well now. It was a
rough start to get the GJ in place. He began vomiting and having
bile spill out everywhere. The surgeons didn’t know what to
do. Nobody knew what to do. He was getting so
sick. His heart rate was thru the roof, and his lungs sounded
horrible. Some tubie moms were able to help and we ended up draining
his stomach and trying to slowly feed the J. This seemed to help
some. Breathing treatments were increased. Steroids were
started. O2 was put on to help with his heart rate as
well. Eli started getting sick again. He was coughing a
lot, he was choking, and he had a fever. He was hospitalized Saturday
the 13th. He again has aspiration pneumonia. Tons
of labs, fluids, O2. His heart rate is again super high, his
respirations are super fast. He has acidosis. His
pertussis again comes back positive. Tons of meds.
The rest of the month is
a blur of bad news. We see doctor after doctor. Meds after meds. Coughing,
choking, and refluxing.
Eli has his sleep study
on Monday night the 22nd. He fails
horrible. His O2 drops, he stops breathing. He has
central sleep apnea. This means his airway is collapsing and his
brain isn’t telling his body to breath.
December
2010. Eli struggles medically. He still isn’t making any
sounds. They do his hearing test. He fails. He goes to
the ENT. No fluid. The ENT says it’s
permanent. He is going to do a special test at the hospital to find
out if there is any hearing left. Eli will be in speech and OT to
begin learning sign language. He has PT weekly as
well. He meets with doctors and surgeons. He has
geneticists to try and figure out what is happening. We have a long
road ahead. Trying to get strong enough for kidney
surgery. We need another surgery to fix his fundo. The
testicle that was lowered has gone back up, so both need pulled down in a 2
stage surgery. We need testing for motility. Currently
there is no cure for esophageal motility problems or gastric motility
issues. His heart is doing a bit better. The hole is
smaller, the extra artery gone. His pulmonary hypertension number is
at the top end of normal. His lungs are a mess. Permanently
damaged, constantly struggling. Neurologically we are
unsure. He meets with a new neurologist next month to start all over
there. The geneticist is certain there is a problem but can’t find
it. The surgeon is at a loss. The GI doc says she has no
clue what to do next. The motility specialist is stuck because of
Eli’s severe aspiration. He can roll now. He can’t crawl,
he can’t walk. His feet are starting to drop from lack of
use. He will be fit with hearing aids if there is any hearing left,
if none left then it’s simply signing. We have doctors everywhere
and are going to be expanding soon
to Denver or Dallas. Eli is watched
constantly. He is grounded to the house. His cardiologist
is concerned for him. If he gets sick or if he needs another central
line. His heart keeps making it thru each process put concerned that
if he’s sick again we may begin having permanent damage. We all know
that we are missing something but we don’t know what. We keep losing
more systems. Things that were working are no longer working.
It’s a rush to find out
what is going on. It’s a rush to stop it before we lose the next
thing. Our order of progression is as follows:
1st kidney,
testicles
2nd neuro
3rd stomach valve
4th lungs
5th heart
6th esophagus motility
7th gastric motility
8th ears/hearing
Christmas afternoon eli
took his 1st crawl forward. We were beyond
excited. By Christmas evening we could tell that Eli was getting
sick. We made it t home for the rest of the year.
January 2nd 2011
brought sickness full on. Eli was admitted with gastric and urinary
shut down. They got a IV going (barely) and began
fluids. He wasn’t able to tolerate ANY feeds. It was
decided that a port was necessary to give TPN. Eli went into surgery
on January 5th. They were able to get the port placed and
get TPN started the next day. Over the next week plus his feeds were
very slowly increased. Eli thrived on feeds, TPN, and IV
fluids. The TPN and fluids were weaned down. He struggled
with energy. Nobody was sure why, but it appeared as though he
needed more fluids and protein. He was finally discharged on January
20th. January 21st brought a very tired
little man. He hardly wanted to wake up. January 22nd brought
a very high fever and high heartrate. Called the oncall doctor and
they said take him into the ER. We got to the ER and they said it’s
a bug from being hospitalized, go home. They didn’t run a lab test,
not 1 single thing. We left to head to KC on January 23rd for
a doctors appt. Eli was struggling with his O2 levels. By
the time we got there his heartrate was still high and he still required
O2. 30 minutes after checking into the Ronald McDonald House Eli
crashed. He couldn’t get enough air moving, his entire body was
shaking uncontrollably. He turned blue, then gray. We
called 911, and he was rushed by ambulance to the Children’s
Hospital. He was taken into a trauma room and swarmed by tons of
people. He had an infection in his port that went into his blood
stream and into his heart, and he was septic. Gram negative seratia
sepsis. He was admitted to the PICU. They discovered the
next day that he had a blood clot attached to the end of the port in his
heart. Surgery was on January 25th to remove the
port and the blood clot. The next day they ran another ECHO and his
port had been hiding a moderately large sized blood clot right next to the Vena
Cava. They also discovered that Eli was anemic and that it appeared
to be a long term issue that had been going on for some time. This
was by far one of the scariest times we have gone thru in the last 15
months.
This brings us into
February 2011. It was a long road getting Eli
stable. They put in a PICC line and he was on IV antibiotics as well
as blood thinner. 2 weeks in the hospital. He was
discharged on February 5th. Eli did another 2 weeks of
antibiotics at home. 3 days before ending that his PICC line got a
hole in it and had to be removed at our local hospital. We got a
call from KC on Monday concerned since an ECHO hadn’t been done before
removing. Back to KC we went for another ECHO. The blood
clot had gone from 6x6 to 4x7. They decided to extend the blood
thinners to 4 months.
On February 26th Eli
had a scope run to look at his larynx and voice box and the anatomy of his
throat. All looked good with this. He also had an ABR and
he again failed. They immediately fitted him for hearing aids.
March 2011 brought an
old “situation” back. Eli has begun gagging and retching
again. He is mostly just turning red, but once or twice he’s turned
blue. We’ve had some issues with elevated heart rates and lower than
normal O2 sats. They have checked GJ tube placement and it is
fine. He doesn’t have any extra secretions.
We have been in KC each
and every week. Eli requires a lot of lab work and follow-up
procedures. He has frequent ECHOs to keep track of what is happening
with the clot.
He is working with
feeding therapy to try and be to the point of safely taking 10 bites of baby
food by mouth in under 3 minutes. He needs to be able to pass a
swallow study so that he can safely finish up the motility
testing. His hearing aids will be in at the end of the
month. He has switched over to Children’s Mercy for all of his care,
including his primary pediatrician. We have been incredibly
impressed with them. They are scheduling a lot of appts and testing
coming up over the next few months. He will be meeting with ortho to
discuss foot braces, and meeting with seating clinic to look at
wheelchairs. He will be meeting with a developmental and behavioral
psychologist as well for a full “where are we now” kind of thing.
April 2011.We headed to
Atlanta. Eli, Bob, and I flew to Atlanta to meet with the worlds leading
Mito specialist. Eli had a muscle biopsy and tons of lab work. They
ran over 27 tests. Eli did well on the flight there and even after his
surgery. The flight home was a disaster. He couldn't keep his O2 up
and ended up needing the airline oxygen on top of his own wide open on the
highest flow. The rest of April brought alot of doctors appointments and
a lot of testing. Eli started struggling with his secretions more and
more. We met with tons of doctors and he endured alot of tests to try and
find out what was happening. The choking and gagging was out of control
and was exhausting him to the point he slept for 20 hours a day. His
heartrate was thru the roof.
May 2011 .Brought 8 new
specialists. It was an exhausting time. The neurologist is unsure
if Eli will gain the skills that everyone is hoping and pushing for. He
is concerned that Eli is functionally deaf. He thinks the mitochondria in
the brain are breaking down and making road blocks along the pathways, which is
causing sound to not be processed. This would also explain Eli's lack of
understanding and sound and so many other things. He says there is sadly
nothing we can do but wait and see. The longer it takes Eli to gain a
skill the less likely we will ever get that skill. Pulmonology was
greatly concerned with how Eli is handling his secretions as well as how he
handles his O2 in his carseat. New meds started to lower secretions and
now also using catheter suctions to help get some of the secretions farther
down. Eli's last ECHO showed that the blood clot has changed into a
calcified leason and is now growing. Being that it is inside of his heart
that is of concern. The hemoc team has turned it over to his cardio
team. His heartrate spent most of the month very high and has now dumped
down strangely low. As the weather is warming up Eli is struggling more
to keep his body cool, and dehydration has been an issue again. Trying to
find the balance so his kidneys don't have to work to hard. Still alot of
unanswered questions.
June 2011. We
packed up and moved to KC. Eli spent the beginning of the month getting
completely situated with his docs and therapy. They discussed adding O2
to his CPAP. They also spent some time discussing his heat sensitivity
and hydration needs. June also officially brought Eli's Mito results.
It came back showing Complex I and III, problems with OXPHOS, multiple
deficiencies and immune system issues. Some more hydration issues as well as
some weight loss.
July 2011 Eli
ended up admitted on the 4th of July. His blood sugars kept dropping and
he displayed symptoms of sugars to low. He was discharged with orders for
sugar checks and increased fluids. Eli had testing with Hemoc and it came
back showing that he was at increased risk for another blood clot. Eli
had alot of sugar, bowel, and hydration/weight issues. Meeting with Eli's
GI doc and it was found that he was shedding pieces of his bowel in his stool.
Eli ended up admitted mid month to try and find out what was going on
with his GI system. He ended up having alot of blood sugar issues
overnight. While inpatient hemoc came by and informed us that Eli's blood
testing came back showing that he has Factor V Leiden. This is a blood
clotting disorder that causes him to clot. During this hospital stay and
all of the testing it was determined that Eli also has a Growth Hormone
Deficiency and will need to go on growth hormone injections every evening.
Eli needed to have an MRI run to make sure that there was no tumor on his
pituitary gland that could be causing the issues.
August 2011 Eli
struggles alot with heat and fluid retention. Eli struggled this month
with only using his left leg and he would simply drag his right leg along
behind him. They ended up scheduling Eli for an emergency neuro appt. A
few days after Eli had his first 2 noticeable obvious seizures. They
scheduled an EEG. He also had an appt with the new Renal Doc. Eli
had some big breathing issues while sleeping and the docs believe it was
seizures while he slept. They ordered more O2 with his CPAP and ordered
an emergency sleep study as well. We met with the new neuro and he said
that Eli's EEG showed seizure activity and over all reduced background waves.
He decided to place Eli on seizure meds.
September 2011 Eli
met with the muscle and nerve clinic and he diagnosed Eli with mitochondrial
myopathy. Eli used a gate trainer at PT and took his first steps
ever!!! Eli also had his sleep study. Eli continues to have
sleeping issues and they decided to switch to BiPAP. We met with eli's
pulmonologist and discussed all the results. Eli had central mixed sleep
apnea as well as restless leg syndrome. He was also concerned about Eli's
secretions and the amount of choking that was again occurring. We ended
the month by meeting with Eli's geneticist.
It is now June of 2013.
My baby is GONE. Our tiny hero passed away on April 28th 2013 at
4:08am.
I was going to go back
and update everything I never got to do.
In a nutshell so many
things of Eli declined. He ended up needing a central line for all of his
fluids and sugars. He needed more and more meds. He needed more and more
supports and help and supplements to keep some semblance of balance. He
got sick frequently and we were in and out of doctors and hospitals. This
was our life. More medical equipment entered our house constantly.
Also some things
improved. He learned to walk and climb on and off the couch. He was
trying to learn to run. We finally had communication. Eli could
sign. He had just learned to say, Hi and Ma and Da. He loved to
play with his siblings. He learned to walk outside. He was smart
and beautiful and perfect.
But that all came
crashing down on us. We lost our baby. None of the month by month
updating seems of any importance when our arms are empty and our world is
shattered.
I can't retype about
that day. It's to much. Here is the link to read the blog post
explain what happened.
Some day I may be able
to update and fill in the blanks, but that day isn't now.
