Last night we spent 6 hours in the ER due to little man's stooling issues. I won't get into it, but the pediatrician's office was not comfortable with waiting until the morning, so off to the ER we went. They were worried about something called intessuseption or a blockage or impaction. There can be some very serious side effects to is kind of constipation, so we knew we needed to get him checked out.
So it turns out he is impacted- his colon is full...or as the doctor put it, "major constipated...huge belly full of stool." It is so amazing to me that a child who takes six squares of ex-lax a day and 3/4 a capful of Miralax could still be full of stool. How? And so quickly. This is why it is so very important for him to have a BM everyday. It spirals out of control fast with kids like him. It definitely is not necessary for everyone to be daily, but for these kiddos, it is!
No one was quite sure what to do with him. What do you do with a kid who is stopped up and already on a giant dose of ex-lax?
Well, they did what you would expect, and they called the children's hospital on call GI fellow. We spent hours waiting for this call back to discuss NG tube clean-out, enemas, etc. The fellow told the ER doctor to try Miralax. Really? I think both the ER doctor and I were a bit insulted...as if we couldn't think of that.
So, now that it is midnight...and almost morning, the plan becomes to call Cincinnati Children's first thing in the morning and let them tell us what to do. Cincinnati is putting him on several high volume enemas for several days to get his colon good and cleaned out. Then, after he is clean, they want to increase his laxative dose in order to keep him cleaned out. If he does not tolerate a larger dose (as you can imagine that amount of ex-lax can cause horrible cramping, etc), then we will start a new plan.
When we were leaving the hospital last night as a very tired 2 year old and a worn out mama, the nurse came into discharge us and go over his papers. She said that she sees he was diagnosed with..."um...let's see here, oh just constipation." I am not sure that I would call this "just constipation." To me, the term constipation does not do it justice. Lucky for her, I was too tired to go very deeply into it. And I know she was just a kind nurse doing her job...one doesn't usually think of such an extreme situation when they see the word constipation by a baby's name. After all, what baby isn't constipated at some point?
On Monday morning, we will take Beckett to see a new GI a bit closer to where we live now. Please, please pray that this new doctor will have some insight on how to best handle his digestive problems. I want him to have some relief from this. I want him to be able to digest food. We would really appreciate your prayers. I know a doctor's appointment may not seem like a very big deal, but we are looking for someone to help keep up with the way nutrition goes through our son...his quality of life. It is a big job, and we want to find just the right person to help us with it. And it would be good to have a doctor that is a lot closer in the event he gets sick like last night, and we need help!
Thank you for praying.
Thursday, October 18, 2012
Tuesday, October 16, 2012
Pumpkin Patch
Love it!
Still next to impossible to get a good picture of them together!
Brotherly Love!
Running through the Hay Maze at the speed of lightning!
"Punkies"
"I think I'll take this one!"
."..or maybe this one is more my speed."
And now-- look how much they have grown up! I think it is fun to see how much they have changed since last year's pumpkin patch adventure. In a way it feels like yesterday, and in a way, it feels like years away. Crazy how life works that way.
HAPPY FALL EVERYONE!
Saturday, October 13, 2012
The Reality
I try not to discuss this topic too much, but let's face it- it is a huge part of our problem. The goal is to relay the information of bowel problems while keeping Beckett's dignity in tact. But please consider yourself forwarned...
S.I.X. Yes, SIX, squares of ex-lax. Every evening. That is a regular box of ex-lax every 4 days. Our little guy loves his "choca!" It is probably one of his favorite parts of his day. He takes one square in his little hand and holds it up to show daddy. He turns his head slightly to the side and says, "twooooo" in his sweet little sing song-y voice. Then I give him the next square, he runs to daddy, and says, "twoooo." And so on. Every single night. This is the medical regimen prescribed by his doctors to keep him regular and to keep things moving through. Six has been set as our sort-of max. His doctor does not want to see him go up any higher than that.
And then days like today, the reality sets in. Days when he has nothing happen. We give our 2 year old son 6 squares of regular old ex-lax--the same kind adults take--along with a capful of Miralax and over 24 hours later, still nothing. Not even sure how that is possible. You would imagine 6 squares of this would effect anyone, especially a little child, but not true. That is what we are dealing with here. A colon that does not move. Can you imagine? That is his every day.
S.I.X. Yes, SIX, squares of ex-lax. Every evening. That is a regular box of ex-lax every 4 days. Our little guy loves his "choca!" It is probably one of his favorite parts of his day. He takes one square in his little hand and holds it up to show daddy. He turns his head slightly to the side and says, "twooooo" in his sweet little sing song-y voice. Then I give him the next square, he runs to daddy, and says, "twoooo." And so on. Every single night. This is the medical regimen prescribed by his doctors to keep him regular and to keep things moving through. Six has been set as our sort-of max. His doctor does not want to see him go up any higher than that.
And then days like today, the reality sets in. Days when he has nothing happen. We give our 2 year old son 6 squares of regular old ex-lax--the same kind adults take--along with a capful of Miralax and over 24 hours later, still nothing. Not even sure how that is possible. You would imagine 6 squares of this would effect anyone, especially a little child, but not true. That is what we are dealing with here. A colon that does not move. Can you imagine? That is his every day.
Tuesday, October 9, 2012
A Letter to Beckett
I started working on this letter a long time ago, but it has
taken me awhile to actually get it here.
Dear Beckett,
Wow. It is hard to know where to start. Over the last 18 months (this occurred when you
were 1.5 years old), you have been through so much. Test after test. Searching for an answer. You have been tested for GERD, pyloric
stenosis, hirschsprung’s disease (several times), Cystic Fibrosis (several
times in several ways), Biliari Atresia, William’s Syndrome, Noonan Syndrome,
Hypochondroplasia, SHOX related short stature, Mitochondrial disease (on the
beginning levels), tethered spinal cord, and several things that I am
forgetting or unaware of. You have
endured countless x-rays, blood tests, enemas, surgical procedures, MRIs, hospitalizations,
EKGs, Echos and other pokes. You are so strong. But sometimes I wish you didn’t have to be.
Today we got one step closer…closer to our answer. You may wonder why we were so desperately
looking for an answer- a name. I think
it is because we as humans have a God-given need to name things. The first thing you usually tell a person is
your name. The first question one asks
an expecting mama is “what are you going to name him/her?” Something to call it. It began in the garden. And our human desire to have a name for
something continues. Without a name, we
do not know what we are up against, we do not know what we are fighting, and we
do not know how to prepare for battle.
We have no map because we do not know where we are going. It is hard to plan for something that you
cannot name. It is hard to understand something without a name. So, my
son, we looked desperately for a name, an answer...in order to bring you relief. And now we are closer—or we
may even have as much of an answer as we ever will have.
Throughout this year, you have made many friends. Other friends who are looking for an
answer. Friends who wholeheartedly search
for a name…different stories, but all searching. A name would bring support and understanding
and awareness. We have learned each
others’ names and we pray for each other—from different parts of the country. It is really quite amazing. Because of precious you, we have met people
that otherwise we never would have met.
We have prayed for families that you brought us to. And they have prayed for you.
Because of these friends, most whom we have never met, we
learned about research being done in Cincinnati, Ohio…far away from here. And we knew that we needed to get you
there. So after much prayer, things went
very smoothly, and we made our trip to Cincy.
So back to our answer—You have been diagnosed with a Cystic
Fibrosis related disease. Apparently,
there is a CF spectrum, and you are on it.
It is hard to know what this means for you. You are a bit of an
exceptional case. Your diagnosis is based on your colon biopsy. The doctors looked at pieces of your colon for something called CFTR. Your colon is what the doctor calls, "Cystic Fibrosis tissue."
Here is how it works:
Cystic Fibrosis is a disease that affects the lungs in the
digestive system. For you, it seems to
drastically affect you digestion with less lung involvement. Usually in CF, the mutated gene tells the
body to make a defective form of a protein called CFTR. The CFTR is in your lungs, digestive system,
sweat glands, and genitourinary system. So
this defective CFTR function keeps your body from regulating the way chloride
and water move through the systems.
Instead of having a normal, thin layer of fluid and mucus, people with CF build up a sticky, thick layer
of mucus.
The sticky and thick mucus traps germs in your body. So your body doesn’t fight off germs the way
most people’s do. This causes mommy to
be extra-cautious in where we go and what we do. We want you to stay healthy. Some research shows that lung problems can develop later in people with residual CFTR (like you). We pray for strong and healthy lungs!
The sticky mucus in your digestive system is where most of
your problems lie. The sticky mucus
keeps your body from using your food the right way. This makes it very difficult for you to gain
weight and grow. You have a pretty good
appetite, but you have to eat twice as much as everyone else to gain
weight. Even with a normal appetite and
a good diet, growing can be hard for you.
They are not sure how your constipation comes into play here. Kids with CF tend to go too much or too little. But I don't think many have constipation like yours. The CF doctor said he wasn't sure if the enzymes would help your constipation, but that they should help your growth. And that they have. Digestive Motility is still a pretty big issue for you. We are still trying to figure out how to best treat this.
Here is the catch:
Remember when I said a genetic mutation on the CF gene is what tells one's body to have no to low CFTR function. Well, you have no genetic mutations that has told your body to have defective
CFTR. So this leaves your doctors
feeling very puzzled. Cystic Fibrosis is
caused when there are two known disease causing mutations. This is where they are stumped. Your body does have the deformed CFTR
function. That we know. What we do not
know is—what told that to happen? There
are nearly 1400 genetic mutations of the CF gene that cause Cystic Fibrosis. There are a couple of theories: a) you have an unknown mutation—one that has
not yet been discovered. Or b) something
else—not genetic—has caused your body to have the low CFTR function.
The doctors are
working on figuring this out. There is one other little girl that has been
diagnosed this way that we know of. Some
day ya’ll will meet. Perhaps you will
make history.
In some countries, this biopsy alone is enough to make the
full diagnosis of Cystic Fibrosis. Here,
they look at the genetics.
The CF research doctor in Cincinnati has changed your life
in many ways. He is researching and
tells us he will keep us updated as he learns more about this spontaneous low
CFTR function. He got you started on the
enzymes that have greatly improved your life.
He contacted a doctor here to help you and watch you. He told him your story so that he would
understand you. He answers my emails within
hours and enjoys seeing the updated photos of you. We are very thankful to him and how his
research has affected your life.
The reason I say that this is a step closer is because one
thing all specialists are in agreement to continue testing for “more.” We are waiting on one last big genetic test
that will help us understand if there is anything more going on. I guess after that, they will decide if
Cystic Fibrosis is the full answer or not.
For now, they seem to think the Cystic Fibrosis disease is a piece of
the puzzle.
One thing we do know is that while the doctors don’t exactly
know what is going on, our strong and mighty God does. He planned you-
perfect you. He holds you in his big,
strong hands, and he loves you. And you are truly amazing. Your smile has the ability to light up the room…seriously.
And oh, how you are stubborn! But I think the stubbornness works for
you. This is what makes you such a
fighter. God knew you needed a stubborn
streak.
I am not yet prepared to answer the tough questions I know the future will bring. I know the day will come when you will ask me, "why?" or "when will I be better?" or "what if" or "how." I pray that when the questions come, daddy and I are prepared to answer.
I am amazed at your
strength. You are one tough cookie! Mommy and Daddy are so proud of you, and we
are so thankful you are our little boy to treasure and raise. We are so blessed by you and Brant. God is good.
Love,
Mommy
Psalm 139- New Living Translation
You made all the delicate, inner parts of my body
And knit me together in my mother’s womb.
Thank you for making me so wonderfully complex!
Your workmanship is marvelous- how well I know it.
You watched me as I was being formed in utter seclusion,
And I was woven together in the dark of the womb.
You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out before a single day passed.
How precious are your thoughts about me, O God.
They cannot be numbered.
I can’t even count them;
They outnumber the grains of sand!
And when I wake up, you are still with me!
Friday, October 5, 2012
A Fun Birthday Idea
Simply ask your guests to sign the book that you pick out. Last year, I used a sign a cute theme-y sign to tell people to sign the book. This year I just announced it. Some may prefer to have the inside cover signed, but I think it is sweet to find any page in the book - perhaps something that feels meaningful to the signer..
Brant chose to sign the plums because they are his favorite color - or close to his favorite color (purple!) anyways.
I think it makes the perfect treasure to remember each birthday! Now, we will always remember all the people that helped us celebrate our birthday boy!
I think I see a Curious George party in our future... :)
Happy Friday Everyone!
Thursday, October 4, 2012
A Very Caterpillar Party
Last weekend, we celebrated our sweet Beckett turning the big TWO! And what better way to celebrate than A Very Hungry Caterpillar party full of bounce houses? Yes, I can sense the irony in having A Very Hungry Caterpillar party for a child who has been on and off a feeding tube, but it does fit him so perfectly. He is our ever-so-cute caterpillar inching along strong and steady and ready to fulfill God's big plans for his life. He may not be able to eat the wonderful, colorful variety of food that the little caterpillar eats, but he does love his Chex and puffs! And he eats until he is completely stuffed full of them. He is a bright and cheery little boy, and I love the bright colors of this infamous Eric Carl book. So in keeping with our book themes, (last year was A Very Seussy Birthday) we decided on The Very Hungry Caterpillar birthday party.
This year, in attempts to keep things "simple," I made my own cupcakes from some pictures I found online. And it was exciting that this year we were able to offer Beckett some birthday cake! He still eats primarily pureed baby foods and crunchy cereals, but it was fun to get to let him eat some cake. Of course, he did not actually want the cake, and instead insisted on his Chex, puffs, and "golly golly" (baby food). He really enjoyed it when everyone sang "Happy Birthday" to him, and --are you ready for this?--he even blew out his own candle! He was so proud. We practice with a pretend cake every week in therepy where he blows out the light up candle and it actually goes out. So he was ready for this! He even clapped for himself!
This year, in attempts to keep things "simple," I made my own cupcakes from some pictures I found online. And it was exciting that this year we were able to offer Beckett some birthday cake! He still eats primarily pureed baby foods and crunchy cereals, but it was fun to get to let him eat some cake. Of course, he did not actually want the cake, and instead insisted on his Chex, puffs, and "golly golly" (baby food). He really enjoyed it when everyone sang "Happy Birthday" to him, and --are you ready for this?--he even blew out his own candle! He was so proud. We practice with a pretend cake every week in therepy where he blows out the light up candle and it actually goes out. So he was ready for this! He even clapped for himself!
Not too sure what to think...
Oh, Okay, my candle is lit...this could be fun!
Yay! Everyone is singing for me!
I think I will stick with my crunchies...
Big brother really enjoyed being his helper and opening presents!
At one point, we had a little "too much" birthday! :)
A good time was had by all!
Beckett had a wonderful time at his party, and we are so proud of him. He is absolutely an amazing blessing to our family! Happy Birthday to Beckett!
You've Come A Long Way Baby!
Wednesday, October 3, 2012
Welcome to Where?
When sweet Beckett was turning one, I wrote a post titled Welcome to Holland (click there to understand what the reference to Holland is and where we were then) based on the well-known short essay/poem "Welcome to Holland" by Emily Perl Kingsley. At the time I wasn't sure if we were in Holland, but I was certain we weren't exactly where we thought we would be. I knew we were somewhere special, somewhere unexpected but amazing still the same. The main thing I knew (and still know) is that regardless of where we feel like we are while we are on this earth, this earth is not our ultimate home.
Well, here we are, a year later, and the most appropriate thing I can come up with is "Welcome to Where?" You see, we are basically in uncharted territories. Somewhere very few people find themselves. Our little boy is rare, and our doctors are still searching for a complete answer.
So at 2, this is where we stand. Beckett continues to be diagnosed with failure to thrive, gastroparesis, severe chronic idiopathic constipation, GERD, mild to moderate developmental delays, relative macrocephaly, malabsorption and some other stuff...He continues to fight frequent infections that the rest of us do not catch from him-- c.difficile and salmonella to name a couple. But we have made big strides in the right direction, and we are getting closer to a diagnosis- or we may already have as close to a diagnosis as he is going to get. His newest diagnosis is Cystic Fibrosis related disease.
Beckett has come a long way this year since his first birthday. Looking at him, you would never know the struggles he has been through or that he isn't "perfectly healthy." Although of course, we know he is perfect and wonderfully made. One sees him and probably sees a petite little boy with no idea of the health struggles he faces daily. He no longer has constant dark circles under his eyes and he isn't teeny tiny anymore. It is an invisable disease. The treatment for his Cystic Fibrosis RD is working. He has gained a whopping SIX pounds and grown FOUR inches. He has made huge progress in growth. At 2, he is a pound smaller and the same height as big brother Brant was at one year old. Last year, he wasn't waving bye bye or clapping or saying mama. And now, he is walking and talking...even some 2 word utterances like, "Hi Beat (Brant)" and "Up Pea (please)." Speech is probably the biggest struggle for him, but he is very playful and is moving in the right direction. His development is making progress and we are so thankful.
His GI system still doesn't seem to want to move. He is currently on a huge dose of ex-lax each day to have a bowel movement. He has days where he doesn't seem to feel well and is very cranky. Days like this he does not want to be touched and does not want to go anywhere. I can't say that I blame him. It can't feel good.
He catches infections frequently, we are not really sure why. His immunoglobins and other immunology blood tests are within normal limits. But he gets sick often. His most recent infection was salmonella a couple of weeks ago. For someone who does eat meat in a house where nothing was cooked for a month (don't judge- we were in the moving process :) ), we are not sure where this came from. The grocery store is the leading thought.
We have so much to be thankful for over the last year. Our trip to Cincinnati Children's was the biggest game changer for Beckett. It was hard to get there and emotional to be away from our older son right before Christmas, but it was worth it all. Since our trip there, he is able to eat pureed food and crunchy food, he has fought off c.diff a couple of times (which is better than just never getting rid of it), and he has grown.
And our trip there is what has brought us here...to "where?"
Let me explain. No one quite knows where we are. An amazing research Cystic Fibrosis specialist found that Beckett has very little CFTR function in his colon--basically, he has a "Cystic Fibrosis colon." However, his other test for Cystic Fibrosis (CF) was negative. We know his digestive system is very sick and does not function well. It is heavily affected by this CF involvement. The CF specialist is very honest that we don't know what this means, but he is continuing to research it and will keep us updated as he learns more. As the pediatrician explained at his 2 year "well" check up, "we know he is somewhere on the Cystic Fibrosis spectrum, but we (the medical world and us) don't fully understand it right now." I will try to give more details on CF and how it works soon.
And each specialist thinks there is something more going on. For example, the CF specialist says that yes, CF can affect his digestive system in this way, but there must also be a GI issue going on. In other words, the pulmonologist does not think CF is our only issue. GI says that yes, he has some GI issues going on, but there must also be an allergy going on....etc, etc.
So there it is...we don't actually know where we are. The doctors don't know where we are. We are in a rare position. A child on the outskirts of a diagnosis...only a couple like him that the CF specialist has found. A child who has one test that says yes and another that says no. So where do you fall when you end up half in-half out?
Welcome to Where?
And while a year later, we are not sure where we are--and wherever we are may be very uncharted and new territory, I still believe what I wrote a year ago. The "where" where we are today is temporary. It is where God has put us to best use us for his glory. But ultimately, Heaven is our home. That doesn't mean I do not enjoy my days here and love the work God has me in, but it means that I have peace knowing that I will someday be with my Father. And someday my son will be fully healthy.
From last year:
I also know the hurt will go away because this world-- not Italy, not Holland, not Texas-- is NOT our home. It is not our final destination. Revelation 21:3-4 says And I heard a loud voice from the throne saying, "Look! God's dwelling place is now among the people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." As a Christian, the hurt will go away. Because this place is not meant to be our home.
So at 2, this is where we stand. Beckett continues to be diagnosed with failure to thrive, gastroparesis, severe chronic idiopathic constipation, GERD, mild to moderate developmental delays, relative macrocephaly, malabsorption and some other stuff...He continues to fight frequent infections that the rest of us do not catch from him-- c.difficile and salmonella to name a couple. But we have made big strides in the right direction, and we are getting closer to a diagnosis- or we may already have as close to a diagnosis as he is going to get. His newest diagnosis is Cystic Fibrosis related disease.
Beckett has come a long way this year since his first birthday. Looking at him, you would never know the struggles he has been through or that he isn't "perfectly healthy." Although of course, we know he is perfect and wonderfully made. One sees him and probably sees a petite little boy with no idea of the health struggles he faces daily. He no longer has constant dark circles under his eyes and he isn't teeny tiny anymore. It is an invisable disease. The treatment for his Cystic Fibrosis RD is working. He has gained a whopping SIX pounds and grown FOUR inches. He has made huge progress in growth. At 2, he is a pound smaller and the same height as big brother Brant was at one year old. Last year, he wasn't waving bye bye or clapping or saying mama. And now, he is walking and talking...even some 2 word utterances like, "Hi Beat (Brant)" and "Up Pea (please)." Speech is probably the biggest struggle for him, but he is very playful and is moving in the right direction. His development is making progress and we are so thankful.
His GI system still doesn't seem to want to move. He is currently on a huge dose of ex-lax each day to have a bowel movement. He has days where he doesn't seem to feel well and is very cranky. Days like this he does not want to be touched and does not want to go anywhere. I can't say that I blame him. It can't feel good.
He catches infections frequently, we are not really sure why. His immunoglobins and other immunology blood tests are within normal limits. But he gets sick often. His most recent infection was salmonella a couple of weeks ago. For someone who does eat meat in a house where nothing was cooked for a month (don't judge- we were in the moving process :) ), we are not sure where this came from. The grocery store is the leading thought.
We have so much to be thankful for over the last year. Our trip to Cincinnati Children's was the biggest game changer for Beckett. It was hard to get there and emotional to be away from our older son right before Christmas, but it was worth it all. Since our trip there, he is able to eat pureed food and crunchy food, he has fought off c.diff a couple of times (which is better than just never getting rid of it), and he has grown.
And our trip there is what has brought us here...to "where?"
Let me explain. No one quite knows where we are. An amazing research Cystic Fibrosis specialist found that Beckett has very little CFTR function in his colon--basically, he has a "Cystic Fibrosis colon." However, his other test for Cystic Fibrosis (CF) was negative. We know his digestive system is very sick and does not function well. It is heavily affected by this CF involvement. The CF specialist is very honest that we don't know what this means, but he is continuing to research it and will keep us updated as he learns more. As the pediatrician explained at his 2 year "well" check up, "we know he is somewhere on the Cystic Fibrosis spectrum, but we (the medical world and us) don't fully understand it right now." I will try to give more details on CF and how it works soon.
And each specialist thinks there is something more going on. For example, the CF specialist says that yes, CF can affect his digestive system in this way, but there must also be a GI issue going on. In other words, the pulmonologist does not think CF is our only issue. GI says that yes, he has some GI issues going on, but there must also be an allergy going on....etc, etc.
So there it is...we don't actually know where we are. The doctors don't know where we are. We are in a rare position. A child on the outskirts of a diagnosis...only a couple like him that the CF specialist has found. A child who has one test that says yes and another that says no. So where do you fall when you end up half in-half out?
Welcome to Where?
And while a year later, we are not sure where we are--and wherever we are may be very uncharted and new territory, I still believe what I wrote a year ago. The "where" where we are today is temporary. It is where God has put us to best use us for his glory. But ultimately, Heaven is our home. That doesn't mean I do not enjoy my days here and love the work God has me in, but it means that I have peace knowing that I will someday be with my Father. And someday my son will be fully healthy.
From last year:
I also know the hurt will go away because this world-- not Italy, not Holland, not Texas-- is NOT our home. It is not our final destination. Revelation 21:3-4 says And I heard a loud voice from the throne saying, "Look! God's dwelling place is now among the people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away." As a Christian, the hurt will go away. Because this place is not meant to be our home.
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