Joshua's Story

(I apologize for the redundancy. Earlier posts have presented very similar information, but this composition was put together recently for a publication. We are very pleased with how it turned out and would like to share with our friends and family to read once more.) 

In the fall of 2005, my husband and I were delighted to find out I was pregnant with our second child. Like everyone does, I had scheduled an appointment with the obstetrician at 20 weeks to discover whether we were having a boy or a girl. This is typically the most exciting prenatal doctor's visit of them all. Lying on the sonogram table, I could see on the technician's face that there was something wrong, terribly wrong. Her words, "You’re having a boy, but there's a problem." echoed over and over in my ears as she left the room to get the doctor. Excitement quickly faded into sheer terror. My husband and I were left alone in the room for what felt like an eternity. The doctor entered the room with an apologetic look on his face. "Your baby has gastroschisis, and I'm referring you to a specialist." Gastroschisis? I had never heard the word before. I thought my world had ended. Gastroschisis (gas-tro-skee-sis) is a rare birth defect in which some or all of the baby's intestines protrude through a hole in the abdominal wall. At that time, the experts reported that 1 in 5,000 babies born in the United States were diagnosed with this birth defect. We happened to be the lucky one. Leaving the doctor’s office, I remember calling my mom and hysterically trying to explain what was wrong. The rest of the day was a blur. The word "problem" kept circling in my head. Just what did all this mean? What was in store for me and my child? No one knows why it happens, there is no known cause or prevention for it. I knew I needed more information, after all, knowledge is power and at that point I was feeling extremely powerless. Unfortunately, as all newly diagnosed parents are told not to do, we jumped online and found statistics that only fueled my fears. The perinatologist I was referred to actually ended up referring me to get a second doctor because he did not feel comfortable caring for me and my unborn child. This ended up being a blessing in disguise because the doctors that began following me would be crucially instrumental in saving our son's life. Even though I knew I was not carrying a "normal" baby, my pregnancy progressed fairly smoothly. I was seeing a high-risk doctor twice a week and it became so routine that I was attending these appointments solo. Sonograms showed the small intestine that was left inside his body was becoming extremely dilated meaning the bowels were blocked off at some point. Blood flow was restricted and there was little to no peristalsis (muscle movement) in the bowel. The doctor wanted me to deliver early, so at week 33 two rounds of steroid shots were given to reduce the baby's chances of respiratory problems. We were planning for a 34 week delivery and an amniocentesis was scheduled for the following Monday. Friday afternoon, April 28, 2006 I was in for yet another "routine" appointment when once again during a sonogram the room got eerily quiet. The perinatologist explained to me that he was not happy with the baby's heart rate and wanted me to go to the hospital's maternal observation. He instructed a nurse to walk me over right away. When we arrive on the floor, a very stern old nurse scowled at me and asked why I was on my feet. A team of nurses quickly sat me in a wheelchair and whisked me off into a delivery room. My head was spinning. In no time nurses were bustling about asking me questions and preparing me for surgery. Before I knew it, I was lying in a bed with an IV started the whole time thinking, "Wait, you are all making a huge mistake. You've got the wrong person!" Finally, one of the nurses asked me if I was there by myself. When I replied yes, she handed me a phone to notify loved ones. It is a miracle I was able to dial anyone’s number. I was only able to reach my mother-in-law, my mom, and my preacher. I had never been so scared in my entire life. Only twenty minutes had passed from when I was getting my "routine" sonogram to that point. We were quickly leaving the delivery room, and I was wheeled into an operating room. I will never forget how cold and white it was. So sterile. Looking up at the ceiling while nurses counted utensils, I couldn't even cry. It was so unreal. I remember thinking, "I'm so alone, where is everyone?" No one came and panic was setting in. Almost as if I heard a voice, something told me, "Get it together, you're not alone." A peace settled over me that I cannot explain with words. I have never been closer to God than that very moment. The surgery itself was a blur. So much bustling about. At times I struggled to breathe. I remember the tugging and pulling and a heaviness on my chest. In no time at all, Joshua was born. It felt like an eternity before a nurse told me to turn my head to the right so that I could see him as they wheeled him out the door. Oh, our baby. He was wrapped in sterile gauze and was being rushed out of the room in an isolate. Just a glimpse, is all I caught. Joshua was born with nearly his entire small intestine on the outside of his body. That section of the bowel had died. His small bowel that remained in his abdomen (about 12 cm) was very dilated due to lack of adequate blood flow. As I was recovering from the emergency caesarean, the NICU team was preparing Joshua for surgery. His surgeon came to me just before they took him across the street to our local children's hospital. With the most solemn of looks on his face he told me, "This is bad, this is very bad." The herniated section of Joshua's intestine would need to be removed, and the part remaining (minus the oh so important ileocecal valve) was so grossly dilated that it was too large to connect to his large bowel. The surgeon was able to taper down the remaining small intestine in the first of three Serial Transverse Enteroplasty (STEP) procedures. On top of that, his bowel was extremely large and would have to shrink. It would have been like trying to connect tubing the size of a quarter to tubing the size of a pencil eraser. He was in for a long stay in the NICU and an even longer journey for survival. A portion of Joshua’s small bowel was brought out through a stoma (an opening) in his abdomen. His ostomy was in use until he was about one and a half months old. At that point it had shrunk in size and was ready for reanastomosis (reuniting of divided vessels.) Two months later he was suffering from violent episodes of vomiting and retching. An upper GI, small bowel follow-through with contrast was performed and showed a very dilated small intestine. Doctors decided to once again perform a STEP. The procedure successfully gained Joshua another 25 cm. His bowel was roughly 75 cm long and the bacterial overgrowth that is so common with these kind of gut issues, was now a little more manageable. After 168 days in the NICU, Joshua came home diagnosed with Short Bowel Syndrome, chronic diarrhea, malabsorption and failure to thrive. He was home on IV nutrition, g-tube feeds, and medications around the clock. Caring for my new baby meant becoming a nurse. It meant becoming an expert on my child, and so I did. He did wonderfully for a while. About three and a half months after leaving the NICU, vomiting was once again a very serious problem. So little was going in, but SO MUCH was coming out. Joshua was getting very dehydrated and had to be seen immediately. While in the hospital, tests were done to check for severe reflux. He had a ph probe inserted through his nose down his esophagus. Each time he vomited, retched, coughed, cried, pooped, moved...pretty much did anything, we were to enter the information into a device attached to the probe. The results were conclusive. Yes, Joshua did have severe reflux. So, at that time it was decided to do a fundoplication (a procedure where the upper part of the stomach is wrapped, or plicated, around the lower end of the esophagus.) At the same time, Joshua's surgeon repaired a minor hernia and did his third, and last, STEP. Joshua then had over 100 cm of small bowel. Unfortunately, the length did not necessarily cause the bowel to work better. Our underlying and persistent issue remained the same, malabsorption. The STEP procedures have helped, but time and constant encouragement of the bowel's activity seem to have made the most difference. There has not been any other major surgeries to date, and we pray it remains that way. I have asked about the possibility of a fourth STEP. Many of the experts we have seen feel like it would only be a temporary fix. I have to agree with them. God has created the body in such a way that it will adapt to high stress situations and injuries. His bowel seems to "know" it does not have adequate surface area to absorb enough nutrients to survive so it stretches creating a wide, dilated bowel. Unfortunately this bowel is sluggish and a breeding ground for bacteria which in turn causes lots of gas/bloating. This bacteria often finds its way into the bloodstream and can strike up a nice case of sepsis quite easily. The STEP is a major surgery and anytime the bowel is touched, it undergoes a state of paralysis. The thought of that possibly becoming a long term reality is not worth trying once more to gain more length just to most likely end up dilated. Through the years, we have attempted to treat Joshua's malabsorption of nutrients with medications. Some of those medications have tragically caused pancreatitis. Pancreatitis is a very painful condition of an irritated and inflamed pancreas. Two episodes of this condition proved to be major setbacks in Joshua's advancement. At the age of 5, we were concerned that he would not ever be able to grow and thrive without the supplements of medicinal nutrients. His electrolyte imbalance due to his chronic diarrhea was the hardest to control, especially in the warmer months. On top of that, he just was not growing. Doctors agreed with me that it was time to pursue growth hormone therapy. I remember having read somewhere that studies had shown growth hormones actually aided in electrolyte absorption, and I was anxious to see if this was a possibility for Joshua. We started hormones in May 2012, and to this date Joshua has not darkened the ER doors for dehydration. This is a miracle for him. As a bonus, he quadrupled his growth from the previous year. Today, my husband and I celebrate every moment; we take nothing for granted. The road we've traveled was so long and strenuous, but we've all pushed on. Joshua no longer depends on IV or tube fed nutrition. His biggest concern in life is to be just like other boys his age. He and his two brothers are competitive in every way. The strategic balance of proper nutrition, medications and parental instincts along with the aid of growth hormones has given him a chance. A chance to be more "normal,” a chance to survive, a chance to thrive. Joshua's journey continues as he lives every day to its fullest.

Gastroschisis Awareness Day 2013

July 30th is our state recognized Gastroschisis Awareness Day

   One year has passed since my last post. This past weekend we joined many other families in raising awareness for the the birth defect that has changed our lives forever. The kids had a blast and it's always wonderful meeting others that are in your shoes or just stepping into them. 

   There hasn't been much to report, which in our world is a wonderful thing! Joshua's doing well. He's been on growth hormone therapy for over a year now and is steadily growing. The doctors would like to see a little more growth, but any is an improvement from the year before! Between his 5th and 6th birthdays he grew 1/2 inch. He quadrupled that amount this past year. 

   On top of the growth, he seems to be balancing his electrolytes on his own much better. We've had a few bumps in the road, but if recognized early enough and corrected with oral rehydration, we can stay ahead of the game. No ER visits for dehydration so far!!! This is SO BIG! Of course, Joshua still is not a fan of the nightly injections. (Neither am I to be honest!) Who wants to poke their child with a needle every night?

   But, even through the discomfort of these shots, Joshua remains good spirited and strong willed. He's determined and I am so very proud to be his Mama. As difficult as the job is at times, I am so blessed by him and the things he's taught me. The one thing in the world this little boy wants is to be like everyone else, to be like his brothers. That's not always possible, but we try very hard for it's achievement. He's had a summer full of family reunions, trips to the beach and warm days in the pool. Joshua wakes every morning ready to eat and take on the world, living his days to the fullest.

Gastroschisis Awareness Day

Just Around the Corner... With Gastroschisis Awareness Day a little over a month away, please take the time to watch our video. You may come away with it with a better understanding of this birth defect and hopefully a blessing of encouragement. If these kids have taught us anything, it's to keep a strong faith in God and an unstoppable determination. May we all have the GUTS that these kids have!

Battling Summer with One Tube Behind His Back!

So far this summer Joshua has done remarkably well. I'm amazed at how his little body is copy through heat and humidity. In years past I've dreaded June. It never failed to bring with it dehydration and all expense paid stays at the local children's hospital! But, we've been to the beach, swam in the pool and played outside without any repercussions. THIS IS HUGE! I keep saying that, but I'm not sure just how many people "get it." THIS IS HUGE. August will make one whole year that Joshua has been off of tpn. If you'll remember he had a booger of a line infection that wouldn't clear and the docs had to pull the line. We experimented with him being off that support and sure enough, he did great! We've continued to supplement his electrolytes four times a day (which certainly does help tremendously) however, I'm wondering if the steroid shots we started Joshua on in May are playing any part in this? Whatever it is, I'm seeing a whole new boy and he won't be stopped! Watch out world! Praying that we will ride this wave through August!

Five Steps Forward.... and Only One Back!

That's the silver lining our GI doc gave us today.

Hey...I'll take it! For so long we've done the one step forward and two steps back dance and quite frankly, I just don't dance! Progress is slow, but progress none the least. To date Joshua has gone FIVE months without a central line! No TPN. No supplemental IV fluids. No line infections.
Progress!

A few weeks ago he did test positive for C diff. The dreaded bug of all Short Gut kiddos.
He may fight off this bacteria for months or years. We're praying it clears quickly cause it's a booger for anyone, much less one with chronic diarrhea as it is.

On top of this, he's still showing evidence of very poor motility, bacterial overgrowth and malabsorption. What's new? BUT.....

GI is happy with his labs and overall health. Absolutely NO signs of dehydration! Woo Hoo! What a wonderful thing this is! Hydration has been the center of our world for almost 6 years. His body, even though technically it's not doing what it should be doing in the GI tract, has figured out a way to maintain it's electrolyte levels!!! Praise God!

We do supplement electrolytes through the g-button, but not nearly as much as it appears he loses. He's always been this tricky chemistry set. But little by little, things are balancing out.

Now, on to weight gain...
We'll be meeting with endocrinology first of March and I'm praying we'll start growth hormone therapy soon. It means a long series of daily shots, but this is our window of opportunity to do something about his size while we still can. Joshua has to undergo a few tests to show that the hormones will in fact benefit him. We'll know in a month or so.

All in all, a great report from clinic!

Where to begin?

It's been a while and there's lots to catch up on. I've been a better facebooker than blogger lately. It's a shame. I just always have more to say than time allows, so I think, "I'll get it caught up later..."

Well, since last entry we celebrated Gastroschisis Awareness Day. An amazing group called Avery's Angels spearheaded this observance day. We kicked it off by Justin and I giving blood. What a great feeling! I think we'll become regulars.

Then later picnic and balloon release. Justin took Joshua for some McD's afterward. What a great day we had. I can't wait for next year, I'm going to get my GUTS group more involved and get something hosted at the hospital.

Just a mere 2 days later, BAM. We were hit with a line infection, 2 bacteria and a yeast all at the same time. We had one sick little boy on our hands. High fever for days. The infection wouldn't clear and his central line was finally pulled. After 3 days of losing IVs we got a PICC line placed and were able to complete the 2 week antibiotic course in hospital. We had an upper GI small bowel follow-through performed and the doctors were very pleased. Joshua seemed to be doing well enough that we thought it'd be a good time to try to go without the line.

So now we're home, no central line. No backup safety net. Kinda scary, but very exciting! If Joshua can prove himself this is the beginning of a new life for us.

Stepping out on faith.

That's what we're doing.

Praying, please God keep Joshua hydrated! Please let this be his time. We've waited so patiently for the past 5 years. I so badly want him to step forward without stepping back.

Please God.

A Successful Day in the Heat

Recently our family set out for our first family outing in a long time. Thomas was in town and we couldn't pass up the chance for the boys to see him life-size in person. Armed with plenty of electrolytes we were off.

In the past, a whole afternoon out in the heat would be a recipe for disaster for Joshua. In no time at all his eyes would loose their brightness, sink in and develop dark circles below them. His cheeks would look hollow and his lips would dry out. He'd barely be able to talk, not ever taking a full breath while hardly opening or closing his mouth completely. You could see it a mile away.

Dehydration.

For the longest time I had standing orders (and honestly, probably still do) to be able to give Joshua bolus IV fluids if I felt they were necessary. I had to on many occasions.

But this outing rewrote history for Joshua. He handled it like a champ. Never complained of being too hot, (the high was close to 90) never was extremely thirsty and ate a hot dog fast enough to put a grown man to shame. In fact he finished his brother's too.

Justin and I couldn't have been happier. It was so great for us all to be out together and not stop dead in our tracks for some sort of emergency. Don't get me wrong, I don't plan on pushing Joshua to the limits any more than that. But it's good to know on occasion his body can handle a little more on it's own now.

Thank you Thomas. What a day!

Don't Scream at the Sheep

Week before last when Joshua's pancreatitis symptoms were presenting themselves, I was unsure of why his behavior was so uncontrollable. He was having bouts of screaming coupled with moaning and groaning. Most of the fits were antagonized by the nurse or I trying to do the most harmless acts. Many times not even touching him.

Not sure about where this behavior was stemming from, I sat down and had the "Never cry wolf..." speech with him. I wanted to make sure he wasn't just acting out. Thinking he understood this, I was confident the only screams I'd be hearing were pain derived. So we acted on them, took him in to the ER and thankfully caught his pancreatitis before it go too adanced.

Which brings me to today.

Before I go into the bathroom here in our hospital room to shower, I ask Joshua, "Do you need to go potty?"

"No."

"Are you sure?"

"No, I don't need to."

"OK, I'm getting in the shower, don't scream at me telling me you need in."

"OK."

So, 5 minutes later, guess what I hear? Yep,

"Momma!" Like it's the end of the world.

Same siuation happened the day before only for me to hurry out to find that, "I don't have to go anymore, it went away."

This afternoon, I'm in the bathroom again and can once again hear his screams, which this time are loud enough to bring in his nurse. I'm out, sweeping him in the bathroom as quickly as possible. So, the nurse and I are talking about the series of events listed above and I hear this soft voice coming from behind the bathroom door.

"Mom. Are you talking about, Don't scream at the sheep?"

-----Yep, I can tell he got the gist of my story.

Good to know our children are listening, huh?

I am So Blessed

It stinks how sometimes it takes a series of tragic events for us to realize just how great we have it. Often times we get upset about the hand we've been dealt. Then tragedy strikes around us and we say to ourselves, "Whew, at least that didn't happen to me."

I've had so many trials to conquer in my life, but in the grand scheme of things they've been minimal. Tiny specks of sand in the endless coastline of sorrow. The crashing waves just barely touching. When there are those whose troubles are like the jagged boulders getting relentlessly beat by the tireless waves.

Ok, enough with the metaphorical mumbo jumbo.

My somber state comes from the bereavement of families around me. In the last few weeks, I personally know two families that have lost children to chronic illnesses and one that has lost their father. Some of this is hitting way too close to home. A little two year old boy very similar to Joshua lost his battle with short bowel syndrome. The longevity of this disorder paid a toll on his little body and it just couldn't hold out anymore. My heart aches for his mom.
I can't imagine.

Maybe it's being naive, maybe it's the ostrich syndrome, but I just don't ever go "there" in my mind. I can't think about how I would feel if the Lord called home our sweet boy.

Any of them for that matter.

But, when you're dealing with a child with a chronic condition, that particular child's state of health is understandibly foremost on your list of parental concerns.

Just think about it.

After days, weeks, months staying in the hospital, how do you pack up your things, including your child's dirty laundry, favorite toys and blanket still holding his scent.

How do you leave your child's lifeless body? The hospital bed? The hospital room?

How do you leave the Children's Hospital without your child?

How do you leave?

How do you go home as a family of 4 when you left as a family of 5?

His bed still unmade and toys left from play.

How?

See, this is why I don't go "there."

Oh, Lord. I know you have your reasons, please help us to understand. Please be with those families having to do just what I've described. Please God, spare us from having to live through such pain.

I wish I had the right words for my friend. I'm sure everything most of us can think to say sounds so cliche. So empty.

"He's in a better place."
"He's not hurting anymore."
"You did everything you could've done for him."

Those are exactly the only kinds of things I could think to say to her.

In a time such as this, all we have is our faith. I did tell her that I believed whole-heartedly that when he was to pass on, no doubt, he would be in Heaven, no longer suffering. She must trust in God.

My faith in the Lord encourages, stabilizes and strengthens. But, that having been said, I know that the only way I could make it through something like what these two moms are dealing with would be to conquer one battle at a time. And fall apart in tears between them.

So much of our complaints in life are about inconveniences, truly. Even with my son's illnesses.

It's inconvenient to have to stop my day and contact the doctor.

It's inconvenient to have to pack our bags and head to the ER.

It's inconvenient to have to wait 5-6 hours in the ER before the doctor finally decides what we're doing.

It's inconvenient that the room we're being admitted into, isn't ready.

It's inconvenient that we can't stay on our favorite floor.

It's inconvenient that we will be in house for over a week.

It's inconvenient that we have to drag a pole around the hospital so my son can ride his tricycle.

It's inconvenient that we were in isolation for two days.

It's inconvenient...

Shame on me. I'm so blessed.
I know two families right now that would LOVE to have these INCONVENIENCES.

I am so blessed.

John 14:14-16
If ye shall ask any thing in my name, I will do it. If ye love me, keep my commandments. And I will pray the Father, and he shall give you another Comforter that he may abide with you for ever.

I have a Comforter.

I am so blessed.

Pancreatitis, party of one.

This winter has played havoc on the health of my boys, all of them. We've battled RSV, stomach viruses, strep and even allergies. So, last week when Joshua started running a fever and was lethargic with no appetite, I wasn't too surprised. His brothers both suffered from bouts of tummy trouble recently, so I really believed Joshua was coming down with one of the many bugs running amuck. Thursday morning, however brought a whole different twist to things.

Joshua has the tendency to be a little stubborn, it's the character trait that has helped him do so well in his illness. Stubborn didn't quite describe what his nurse and I were dealing with. He was being so difficult. Then the screaming began. Not long after the decision to pack up and head to the hospital came with heaviness. It's always a tough one to make. Every time now I pack a bag knowing very well we could not be returning home for days. So with bags packed, we headed in.

As VIP frequently fliers, we head straight back to the ER exam area. I guess there are some perks to being chronic. Still, the waiting game is exhausting. A blood draw here, abdominal x-ray there. Wait. Wait. Wait. Joshua's feeling much better by 7:00pm when the doctor comes in with that look on his face. "Well, it's Pancreatitis."

Oh, man. Didn't see that coming. My heart sank. I felt so bad for discounting his screams as anything but pain. Holding tears back as best as I could, I begin the formation of our game plan. Now what? He was doing so well. Eating whatever he wanted. No tube feeds. TPN only 3 nights a week.

Now, I have to make this little guy understand why he can't even have water by mouth.

I'm crushed. Devastated. Helpless.

"Mom, I'm hungry."

Ugh! What is a mom's natural response? It's our job to meet those kind of needs of our children and I can't do anything about. Frustration doesn't even begin to describe it. I get so tired of coming so far and gettting so close, just to be thrown back to step one all over again. Why?

I know God has a plan. I don't begin to doubt His order of things. There are big things planned for our little trooper. I ask that He also use me, if only to be a comforter to someone else living this roller coaster lifestyle.

The Lord absolutely has his hands on Joshua though. That's what I have to stop and remind myself. So, pitty party over, be strong and lead on. He's following my lead and I know if he sees me down, it's not going to help him at all. Joshua will get through this, no doubt. He's already handling it much better than last time.

Joshua's lypase levels have dropped from well over 4000 to 660 already. Another 160 or so and we will try some Pedialyte. It's a slow process and obviously some dietary changes are going to be taking place. Trial and Error. Seems to be a reoccurring theme around here.

But, were pressing onward. With the Great Physician on our team, there's no doubt we'll be victorious. We continue to pray and ask that everyone remember us in their own prayers. We need God's healing hands just as much now as ever.

Here We Go Again...

So a month has past since we discontinued Joshua's tube feedings. All is well. He's still eating quite a bit by mouth and tolerating solid food, for the most part. His tummy looks so much better. Not nearly the bloating that he'd been experiencing. That in itself is a miracle! I NEVER dreamed that he could make it on solid oral feeds alone. I was prepared for him to depend on tube feedings, at least nightly, for the rest of his life. This is still hard to wrap my head around.

Yesterday I received a phone call from the GI's office. Joshua's labs look great and they want to cut back his TPN to Monday, Wednesday, Friday. Really? This is amazing. But, this means Joshua goes under a microscope. He'll need weekly labs, we're monitoring his caloric intake and we closely watch for any signs of dehydration. That's the real booger in all this. We've been down this road unsuccessfully before. Joshua can get so dehydrated so quickly. It's been almost a year since we tried to wean him off TPN and we landed in hospital for about a month.

Please pray specifically that Joshua can handle such a change this time around. It's so difficult for his body to maintain it's fluid levels.

Let Me Catch You Up to Speed

I know it's been so long since I've updated this blog. I hadn't had much internet access until just recently, but I should be more consistent now.

Joshua's doing really well. A month ago during a routine visit, his GI suggested we hold his tube feeds to see just how much he'll eat my mouth. For five days we kept track of everything and logged his caloric intake. He was averaging about 1000 cal/day. For his age that is great! Not to mention he still receives his TPN for 10 hours at night.

So now it's been a month and he's still doing OK. A little upper respiratory virus has slowed him down a bit, but for the most part his still maintaining his weight. His tummy is not nearly as bloated as it has been in the past. Not having to lug his backpack around has been quite the incentive, too. Any steps toward "normal" is so wonderful. I pray this cycle can continue. I continue to keep a watchful eye, not out of pessimism, but rather experience. Our roller coaster ride is far from over and we can't take anything for granted.

So little by little, inch by inch.

Marching on.

Home Again, Home Again...

Looks like tomorrow's the day! Joshua's been infection free for 72 hours and the doctors think it's time to head home. Hooray! We are so ready. It's always so hard having the family split up like we are. Joshua keeps telling me, "I miss Stephen." Wow, that speaks volumes. The two are constantly at each other's throats!

I guess I shouldn't complain though. I met a girl from Lubbock here with her son. She's got other children at home and no one she knows here with her. She's a trooper though. I'll keep her name annonymous out of respect, but please say a little prayer for her.

I met another family that's moving several states away to persue treatment for their child. I can't image what it would be like to be so far without my family, church and friends around me. Just goes to show, there's always someone who's having a harder time than you. We can sometimes get so wrapped up in our own situations.

Tomorrow, WE get to go HOME. *Sigh* Thank God. For how long? Doesn't matter.

"Boast not thyself of to morrow: for thou knowest not what a day may bring forth." Proverbs 27:1

Quality Time

We had such a great day today. It may have started out a little rough, but recovered beautifully. My mom came to visit this morning. Joshua always enjoys Kackie and the "purprises" she brings. Then a little later Daddy, Caleb and Stephen came to visit. They had come from church and were dressed so nicely. What a treat! The boys played well and napped too. Justin's cousin Sondra, aka Goober, dropped by as well. Never have I known someone so loyal and faithful. She always makes it a point to see us when we're in hospital, never empty handed either! Such a sweetheart she is! We also had a visit from Mr. Roy and Ms. Debbie. Thank you all so much for the special treats and the time you took out of your day to visit us. What a difference it makes.

When it came time for Justin and the boys to leave, Stephen began to cry. He realized Joshua and I weren't going. I was buckling him up in the carseat out front of the hospital and Joshua reached up and padded his hand.
"Here I am, Stephen." he said sweetly. He stepped up into the car and kissed Stephen's forehead. "I love you Stephen."
"I wuv you too." Stephen replied through sniffles.

I teared up instantly.

Why not?

Once again our favorite hospital floor is home. I guess if we have to be here it couldn't be any more pleasant. I believe this is the 7th admittance this year. I could be off. What a year so far. Joshua has a new central line infection, the third type in 6 months. Each has sprung from bacteria in Joshua's gut, each a different strain. Ugh! After 72 hours of no growth on his cultures, we will be allowed to go home.

On a lighter side, the Pancreatitis is finally subsiding! We'll have labs drawn in the morning to see where we are, but as of thurs. his Lipase was 140. Woo Hoo! He's been able to eat by mouth for a week now and we are re-starting his tube feeding now.

Speaking of tubes, I neglected to post anything about his last stay. Three weeks ago, Joshua began running fever. Line infection. We had just gotten over his 10-day stay in hospital and here we were again. But on the last day, Joshua's GI placed a GJ button. It's really cool, as far as gastric adaptations go! It's a little bigger than his old button, but has a gastric port (goes right into the stomach) and a J port (it is a tube that runs down through the stomach and into the small bowel to the jejunum). We could feed him while bypassing the stomach still allowing the pacreas to rest. It's worked ok so far.

However, the used a camera to assure everything was placed correctly and his GI was floored by the amount of standing fluid and the size of his small bowel. Even having been NPO for 6 weeks, it was still huge. So of course I ask him, "What's the solution?" He tells me there is no solution outside of transplant.

It's kinda funny, everytime I hear a doctor say the word "transplant" I go somewhere else. My mind just shuts down instantly. Honestly, I just can't go there right now. That is not an answer. It's a set of all new problems.

A little girl I've been following was not even one year from her transplant and passed away last month. I shutter to think...
My prayer is that there IS an answer out there. Something we just haven't tried yet. Actually my screaming, wailing cry out to God prayer is that for absolutely no reason the Lord will heal Joshua's intestines. The simple problem of not being about to absorb nutrients from food is such a stumbling block. We take eating for granted. Shame on us! We just assume what we put in our mouths, chew and swallow will make it's way through pulling all necassary nutrients out along the way.

I don't think it's unrealistic to ask God for a miracle. All things are possible! Oh, God. Please lay your healing hands upon him and for no reason, fix his tummy. My amazing friends and family, join me in this petition.

Roller Coaster

And we're off... Click, click, click. Up, up, up. Uh-oh. No one told me it was THIS high! OK. I'm okay. This is great! Everything will be just fine right here. No, no, no, we're going down. But I'm not ready!!! Ah-h-h-h!

And so it goes.

We should all be used to this by now. But, we're not.

You may have guessed by now that Joshua's labs aren't looking great. His enzymes are up yet again. Tomorrow we're have an MRCP done to find out more what is going on. If that is not conclusive, we'll be having an ERCP done and at that time they can actually open up the pancreas ducts and hopefully release some of those built up enzymes.

The GI says that it's normal for kids to have a hard time getting over pancreatitis and the rise and fall of his lipase enzyme is normal.

In the meantime, hold on tight!

And the culprit is...

Pancreatitis in children is normally caused by a virus. But, with children like Joshua there can be many other reasons. It's very likely that one of the newest medicines he was receiving was the cause of this extrememly painful condition. So much for that one. It wasn't the cure-all anyway. But you think you're doing something that's going to make a huge difference. That the next med is going to do the trick, the one you've been waiting for. The key to unlock this mixed up puzzle. Only to find out, it's not the one and in fact has only created more problems. Ugh!

So, back to the drawing board.

The one cure that never backfires is our prayer that the Lord will heal Joshua's body with no medical explination. I know it's possible and it's been my own prayer since day one. Please join me in this plea.

I long for the day when I can look back and all the tubes, lines, nightly TPN mixing and infusions, feeding pumps, backpacks, dressing changes, ER visits, hospital stays, supply deliveries, midnight trips to the bathroom, midnight bedding changes and the sinking feeling in the stomach with every thermometer reading over 99 are all a memory - a thing of the past. I read postings from moms who live this reality. Their children are functioning somewhat "normally" now. It's all a memory to them. That will be a great day.

But today our reality is different. And that's okay. One day at a time. One challenge at a time. As my dad always says, "Inch by inch is a cinch, yard by yard is hard." So, today's inch is a hospital stay and working through these tummy pains. Tomorrow's is yet to come.

"Boast not thyself of to morrow; for thou knowest not what a day may bring forth." Proverbs 27:1

Pancreatitis

I apologize for being such a poor blogger lately. Time and internet access has been liminted lately. As many of you now know, Joshua's recently suffered from a painful case of pancreatitis. His pancreas is hugely enlarged and inflamed. Enzyme levels which should normally be anywhere from 25-120 were 5,800. Today they're down to 1,800. The treatment is resting the pancreas by holding any food or drink and pain management. By now even Joshua who rarely feels it, is hungry. No one can eat in front of him, it would just be too cruel. We are still awaiting word from the GI as to what happens next, or how it began in the first place. I don't ever want to see him in so much pain again. It kills me.

We are asking for prayers for a speedy recovery and as with every set-back, that something productive come from all this.

Grace

Nothing is harder as a parent than to force your screaming child to do something you know is medically necessary. Yesterday a rectal monometry was preformed on Joshua. Yes, it was just as tramatic as it sounds. As a four year old, Joshua has had to endure so much more than many adults. He's always been so strong and wise, sometimes to a fault. He's got such a unexpected understanding of all that goes on - to him, for him, and in him.

We won't know how the test went until at least next week, but right off the bat it looks promising. Even I could see the movements that we were looking for in his colon. Just need the formal report stating that we can rule out Hirshprung's.

Sometimes the best treatment is to rule out possible conditions, especially the worst possible scenarios. In the event that our fears come true, it is so amazing how God can give you the grace to process it, accept it and prepare for the next move. But, until then I like to push them way far away from my thoughts. I think that is just as healthy too.

For now we remain in hospital, waiting. Waiting for the assurance that he's tolerating the new formula he's been put on. Waiting to see if surgery is in our future. Waiting...waiting takes a lot of grace. Lord give me grace.

My Head is Spinning

Most of you know that we've spent the last four days in Pittsburgh for a small bowel transplant re-evaluation at Children's Hospital in Pitt. This is the second time we've been up there and it is quite an experience. They've got such a wonderful hospital and team, it's just an extremely intense stay. In less than four days we had a sonogram, upper GI - small bowel follow through, saw 5 physicians, 1 social worker, 1 educator and 1 dietitian and 1 wound care specialist.

SO, needless to say, my head is spinning!

There's so much to take in and process. They're making a few changes and suggesting some things that hopefully will make a difference. This week we should have another monometry test done, this time on his lower bowel. There's a possibility that a biopsy needs to be taken from the colon as well. The surgeon up there also mentioned that a STEP procedure could be beneficial as well.

Changes that are being set in motion already are: a new formula, discontinuing of probiotics, using ethanol to "lock" his central line a few times throughout the week to hopefully cut down infection and I got a great list of do's and dont's on his diet.

All in all a very successful trip.

So many people have made this entire experience possible. In efforts of not missing anyone, Justin and I want to just publicly thank our amazing family, friends and hospital staff here at Cook Children's. You've all gone above and beyond to help out Joshua and the rest of our family, whether it be monetarily, emotionally, taking care of arrangements or by keeping Caleb and Stephen in this tormoltuous time.

Thank you, thank you, thank you!

And a big thanks to 5 South for always making us feel special and at home!