It's been a long time since I've shared anything! I have never done a blog before and didn't think anyone would care what I had to share, but I decided today after listening to a fellow Scentsy consultant (thanks, Allison) that sometimes we just need to share whether anyone is listening or not!
Emery was doing SO good! Her protein ratio was down to 1. It needs to be down below 1, and she was so close! Then, one of our worst nightmares happened! She went in for a biopsy to check to see if the FSGS was attacking the new kidney. When she was released from the hospital (it was just an overnight stay), she just didn't seem to be herself the following day. She was super tired, didn't want to do anything, just didn't feel right and then she had a fever. My daughter gave her Tylenol, but after a day or two, she was getting worse. They took her in to the hospital, and she was admitted. She had contracted a severe infection through her port when someone accessed it while she was in the hospital. That was her kidney doctor's conclusion, not ours! My poor baby was in the hospital for a week fighting this awful infection, caused by someone else's negligence! You want to get mad, but you find yourself feeling thankful she's still with us! The infection was in her port access, which spread throughout her body, into her blood stream and very, very close to her heart! She was on IV antibiotics in the hospital and then a PIC line was put in her arm, so that her parents could give her the antibiotics from home each day. She was on this high dose for 3 weeks and during the hospital stay, there were no plasma exchange treatments done, so we knew once she started doing those again, the numbers weren't going to be good, and we were right! She was back to a protein ration of 6, and it's like we were starting all over again! Before the infection, she only went 1 time a week and now she's back to twice a week, and she has to have Iron infusions once a week for 8 weeks!
Why is this happening??? I just don't understand, and I fight a daily battle with myself that this is all part of God's plans! I don't understand how a plan can include an innocent little girl fighting on a daily basis, taking the medications she does and having to live the kind of life she's living! There's so many things she can't do, but I'm thankful there are so many things she CAN do!
Stay strong, my sweet Emery Grace! You aren't fighting this battle alone, and you never will!
Grammy
Wednesday, August 29, 2018
Wednesday, October 4, 2017
Hope & Faith For Emery Grace
A little over six years ago, our world became a world of uncertainty! My youngest granddaughter, Emery Grace, was 3 years old at the time and was diagnosed with Nephrotic Syndrome!
Nephrotic syndrome is usually caused by damage to the clusters of tiny blood vessels (glomeruli) of your kidneys. The glomeruli filter your blood as it passes through your kidneys, separating things your body needs from those it doesn't. Healthy glomeruli keep blood protein (mainly albumin) — which is needed to maintain the right amount of fluid in your body — from seeping into your urine. When damaged, glomeruli allow too much blood protein to leave your body, leading to nephrotic syndrome.
There are many different causes of Nephrotic Syndrome, but the cause of Emery's was FSGS (Focal Segmental Glomerulosclerosis). It is characterized by scattered scarring of some of the glomeruli, which may be caused from another disease, genetic defect or occur for no known reason. It was determined that hers was caused from an unknown reason.
The symptoms of NS are severe swelling, mainly around your eyes, feet and ankles, which she definitely had! We thought it was just allergies, so treated it as such! In time, we started to notice that she was getting rather chunky! It was cute...until my daughter called me and said she had gained 7 pounds in a week! I knew, then, something wasn't right! She called the doctor, who said to bring her in! By the end of the night, she was admitted into Children's Mercy Hospital in KC and the diagnosis was Nephrotic Syndrome! THAT was the beginning of this dark journey! No grandparent wants to see their 3 year old grandchild, laying in a hospital with tubes and IV's everywhere!
I have to admit; I thought she would just need some medication, and before I knew it, she would be fixed and ready to go! Typically, Steroids are prescribed, and that's the case, but not for my sweet Emery! Unfortunately, she had the steroid-resistant kind! In time, a kidney biopsy was performed, and that's when we found out it was caused from FSGS!
For years, she was on several medications, hospitalized periodically, received iron infusions, 2 different shots at home....things that no child should have to endure! Her kidney function dropped during the entire time until we were finally told it was time to start thinking about a transplant! I never in a million years thought it would go this far...wow! Talk about reality slapping you right in the face!
The testing for a match started! Her mom (my daughter) and her daddy were tested. They were both a match, but daddy was as close to a perfect match as you can get, without being an identical twin! We were hopeful! Even though the darkness had begun, the light was already shining at the end of the tunnel! Yay!!! Then, my daughter and son-in-law got the most heart-breaking news....they found an issue with my son-in-law's kidneys...one was larger than the other, and they were functioning at 42% and 59%! That was scary in itself because we didn't know why that was happening with him. They said he has probably always been that way, and it was something they would have never known without going through the testing for donor approval. THAT was a blessing, even it was devastating that he couldn't be her donor!
Next, the testing started for my daughter! She wasn't as good of a match as dad, but she was a match! They concluded that they wanted her BMI to be lower, so she could have a safe, healthy, complete recovery with only 1 kidney! She began exercising, eating healthy and working hard to save her little girl's life! I was so proud of her, as was everyone else!
Then, we were given a date....September 25, 2017! Emery was admitted into Children's Mercy Hospital at 12:00 p.m. on Sunday, September 24, and my daughter was admitted to KU Medical Center at 6:00 a.m. on Monday, September 25....yes, different hospitals! That was probably the hardest thing for our family! It was easily decided that daddy would be with Emery, along with his parents and my husband and myself would be with our daughter, along with our amazing friends, Karen, Nina and Michelle! My daughter's surgery was successful, and they were able to harvest a nice size, healthy kidney for my granddaughter. She is doing great, and I know her recovery is going to be complete!
Emery's body has accepted the kidney and doing great, but then the lab numbers started coming in! All the numbers were good, except her protein! The blood protein in the urine is what they watch for! That number started rising, which was alarming! Then, one day, it went down! There was hope! The next day, it went up again! From here, let me just share my Facebook post....
Nephrotic syndrome is usually caused by damage to the clusters of tiny blood vessels (glomeruli) of your kidneys. The glomeruli filter your blood as it passes through your kidneys, separating things your body needs from those it doesn't. Healthy glomeruli keep blood protein (mainly albumin) — which is needed to maintain the right amount of fluid in your body — from seeping into your urine. When damaged, glomeruli allow too much blood protein to leave your body, leading to nephrotic syndrome.
There are many different causes of Nephrotic Syndrome, but the cause of Emery's was FSGS (Focal Segmental Glomerulosclerosis). It is characterized by scattered scarring of some of the glomeruli, which may be caused from another disease, genetic defect or occur for no known reason. It was determined that hers was caused from an unknown reason.
The symptoms of NS are severe swelling, mainly around your eyes, feet and ankles, which she definitely had! We thought it was just allergies, so treated it as such! In time, we started to notice that she was getting rather chunky! It was cute...until my daughter called me and said she had gained 7 pounds in a week! I knew, then, something wasn't right! She called the doctor, who said to bring her in! By the end of the night, she was admitted into Children's Mercy Hospital in KC and the diagnosis was Nephrotic Syndrome! THAT was the beginning of this dark journey! No grandparent wants to see their 3 year old grandchild, laying in a hospital with tubes and IV's everywhere!
I have to admit; I thought she would just need some medication, and before I knew it, she would be fixed and ready to go! Typically, Steroids are prescribed, and that's the case, but not for my sweet Emery! Unfortunately, she had the steroid-resistant kind! In time, a kidney biopsy was performed, and that's when we found out it was caused from FSGS!
For years, she was on several medications, hospitalized periodically, received iron infusions, 2 different shots at home....things that no child should have to endure! Her kidney function dropped during the entire time until we were finally told it was time to start thinking about a transplant! I never in a million years thought it would go this far...wow! Talk about reality slapping you right in the face!
The testing for a match started! Her mom (my daughter) and her daddy were tested. They were both a match, but daddy was as close to a perfect match as you can get, without being an identical twin! We were hopeful! Even though the darkness had begun, the light was already shining at the end of the tunnel! Yay!!! Then, my daughter and son-in-law got the most heart-breaking news....they found an issue with my son-in-law's kidneys...one was larger than the other, and they were functioning at 42% and 59%! That was scary in itself because we didn't know why that was happening with him. They said he has probably always been that way, and it was something they would have never known without going through the testing for donor approval. THAT was a blessing, even it was devastating that he couldn't be her donor!
Next, the testing started for my daughter! She wasn't as good of a match as dad, but she was a match! They concluded that they wanted her BMI to be lower, so she could have a safe, healthy, complete recovery with only 1 kidney! She began exercising, eating healthy and working hard to save her little girl's life! I was so proud of her, as was everyone else!
Then, we were given a date....September 25, 2017! Emery was admitted into Children's Mercy Hospital at 12:00 p.m. on Sunday, September 24, and my daughter was admitted to KU Medical Center at 6:00 a.m. on Monday, September 25....yes, different hospitals! That was probably the hardest thing for our family! It was easily decided that daddy would be with Emery, along with his parents and my husband and myself would be with our daughter, along with our amazing friends, Karen, Nina and Michelle! My daughter's surgery was successful, and they were able to harvest a nice size, healthy kidney for my granddaughter. She is doing great, and I know her recovery is going to be complete!
Emery's body has accepted the kidney and doing great, but then the lab numbers started coming in! All the numbers were good, except her protein! The blood protein in the urine is what they watch for! That number started rising, which was alarming! Then, one day, it went down! There was hope! The next day, it went up again! From here, let me just share my Facebook post....
It's been a few days since I've posted about Emery or Shelley! To be honest, it's been a little overwhelming, to say the least!
💚Shelley's
surgery went great, and she is doing really good! She needs a reminder
every now and then to take it easy, but that could just be the "momma"
in me!💚
💚Emery
went through surgery like a champ! Everything was going great, it
seemed! Then, the lab results started coming in, and they weren't
looking good! FSGS has a tendency to attack the new kidney! It was
showing signs of that one day, and then the next day, the numbers would
look promising, only to move on to the following day to see them going
the wrong direction again! Needless to say, it was a rollercoaster
ride, and I do NOT like rollercoasters! We were told that if it was
indeed starting to attack her new kidney, there would be a new treatment
she would have to start called Plasmapheresis, which is a Plasma
Exchange!💚
💚I
guess I never really thought past the transplant and it not getting rid
of the FSGS! I never saw it as an option! I knew in my heart that God
was in control, and it would all go away, but that didn't happen! All
of her labs were great, except the protein in her urine, which is a
major factor! I kept the faith, knowing that God was going to take care
of that number....it had to work out that way since all the other
numbers were SO good! I prayed; I cried; I prayed some more; and I
cried some more! The entire weekend is a foggy memory because I felt so
numb! I couldn't imagine my sweet princess having to go through even
more than she already has!💚
💚Yesterday,
the unthinkable happened....it was DEFINITE that the FSGS was attacking
her new kidney, and treatment needed to start as soon as possible to
keep it from damaging it! What this showed the doctors is the
antibodies are in her blood and not in her kidneys (it just attacks the
kidneys), but there was no way of knowing that for certain without a
transplant! A Plasma Exchange is where they spin the blood and separate
the plasma, removing hers and replacing it with new! It's done similar
to dialysis, but it only takes 30 minutes (even though Emery says it
takes the lady an hour to get the machine ready...lol)! She will do
this 3 times a week to start out and over time, it will be less often,
but this is a treatment plan that goes for 6 months! There aren't a lot
of studies done on it, but Children's Mercy Hospital has done this 6
times, and it has been successful every single time, which is good news!
They want her in the hospital for the first few treatments to make
sure everything goes smoothly and she's tolerating it well!💚
💚I'd
be lying if I said this wasn't breaking my heart! To hear her cry and
scream over simple things she used to be okay with is painful!
Band-Aids?? All kids love to put on one, whether they need it or
not...she was one of those, but not now! She has an excruciating fear
of them because of the adhesive! She has a fear of her medicines (ones
she's been taking for years) because she's afraid they're going to make
her go to "sleep"! It's taking a mental and emotional toll on my baby
girl, and I hate it! I wish I could take it all away, but all I can do
is leave it in God's hands and pray to him like never before!💚
💚I've
been through my own life experiences that were pretty eye-opening, but
this is, by far, the worst thing I've ever had to live through! It has
made me see that I need God more than I ever thought I did; I've steered
away from what's important in life; I've put my priorities in the wrong
order; I've not given God the glory he deserves; I've not walked with
him the way I should be; I've not opened my eyes, my ears or my heart
when I should have! Talk about turning over a new leaf....I've always
been a Christian and am proud of it, but we all sin and fall short! I
don't know what's in store at the end of this struggle, and I don't know
the "why", but I do know it has made me take a look at myself in the
mirror and see where I need to go from here! Remember.....it's never
too late to let Jesus in, whether it's for the 2nd or 3rd time or the
first time!💚
💚Emery
Grace, you have taught me so much about life and love for the last 6
years, and I love you to the moon and back for the beautiful, sweet,
innocent little girl you are! You may be small, but you are
MIGHTY....in my eyes and in God's! I look forward to watching you grow
up as you show FSGS what it's like to FIGHT LIKE A GIRL!!💚
💚Please
continue to pray for Emery and this new treatment! Our family feels
your love, support and prayers and can't thank you enough for each and
every one of you!!! 💚
#findacureforfsgs #fightkidneydisease #hopeandfaithforemerygrace #donatelife #mommakidney
She's had 2 Plasma Exchange treatments so far....an update will be coming!
💚Shelley's
surgery went great, and she is doing really good! She needs a reminder
every now and then to take it easy, but that could just be the "momma"
in me!💚💚Emery
went through surgery like a champ! Everything was going great, it
seemed! Then, the lab results started coming in, and they weren't
looking good! FSGS has a tendency to attack the new kidney! It was
showing signs of that one day, and then the next day, the numbers would
look promising, only to move on to the following day to see them going
the wrong direction again! Needless to say, it was a rollercoaster
ride, and I do NOT like rollercoasters! We were told that if it was
indeed starting to attack her new kidney, there would be a new treatment
she would have to start called Plasmapheresis, which is a Plasma
Exchange!💚💚I
guess I never really thought past the transplant and it not getting rid
of the FSGS! I never saw it as an option! I knew in my heart that God
was in control, and it would all go away, but that didn't happen! All
of her labs were great, except the protein in her urine, which is a
major factor! I kept the faith, knowing that God was going to take care
of that number....it had to work out that way since all the other
numbers were SO good! I prayed; I cried; I prayed some more; and I
cried some more! The entire weekend is a foggy memory because I felt so
numb! I couldn't imagine my sweet princess having to go through even
more than she already has!💚💚Yesterday,
the unthinkable happened....it was DEFINITE that the FSGS was attacking
her new kidney, and treatment needed to start as soon as possible to
keep it from damaging it! What this showed the doctors is the
antibodies are in her blood and not in her kidneys (it just attacks the
kidneys), but there was no way of knowing that for certain without a
transplant! A Plasma Exchange is where they spin the blood and separate
the plasma, removing hers and replacing it with new! It's done similar
to dialysis, but it only takes 30 minutes (even though Emery says it
takes the lady an hour to get the machine ready...lol)! She will do
this 3 times a week to start out and over time, it will be less often,
but this is a treatment plan that goes for 6 months! There aren't a lot
of studies done on it, but Children's Mercy Hospital has done this 6
times, and it has been successful every single time, which is good news!
They want her in the hospital for the first few treatments to make
sure everything goes smoothly and she's tolerating it well!💚💚I'd
be lying if I said this wasn't breaking my heart! To hear her cry and
scream over simple things she used to be okay with is painful!
Band-Aids?? All kids love to put on one, whether they need it or
not...she was one of those, but not now! She has an excruciating fear
of them because of the adhesive! She has a fear of her medicines (ones
she's been taking for years) because she's afraid they're going to make
her go to "sleep"! It's taking a mental and emotional toll on my baby
girl, and I hate it! I wish I could take it all away, but all I can do
is leave it in God's hands and pray to him like never before!💚💚I've
been through my own life experiences that were pretty eye-opening, but
this is, by far, the worst thing I've ever had to live through! It has
made me see that I need God more than I ever thought I did; I've steered
away from what's important in life; I've put my priorities in the wrong
order; I've not given God the glory he deserves; I've not walked with
him the way I should be; I've not opened my eyes, my ears or my heart
when I should have! Talk about turning over a new leaf....I've always
been a Christian and am proud of it, but we all sin and fall short! I
don't know what's in store at the end of this struggle, and I don't know
the "why", but I do know it has made me take a look at myself in the
mirror and see where I need to go from here! Remember.....it's never
too late to let Jesus in, whether it's for the 2nd or 3rd time or the
first time!💚💚Emery
Grace, you have taught me so much about life and love for the last 6
years, and I love you to the moon and back for the beautiful, sweet,
innocent little girl you are! You may be small, but you are
MIGHTY....in my eyes and in God's! I look forward to watching you grow
up as you show FSGS what it's like to FIGHT LIKE A GIRL!!💚💚Please
continue to pray for Emery and this new treatment! Our family feels
your love, support and prayers and can't thank you enough for each and
every one of you!!! 💚#findacureforfsgs #fightkidneydisease #hopeandfaithforemerygrace #donatelife #mommakidney
She's had 2 Plasma Exchange treatments so far....an update will be coming!
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