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!

A Whole Lot of Shakin' Goin' On

Today, the first day of June, finds us still in hospital. We are attempting to get Joshua back up to full strength feeds (right now he's taking half pedialyte, half elemental formula.) He was doing great over the past few days on just Pedialyte, but today the tides seem to be turning. His GI is focused on the amount of fluid that seems to be hanging around in Joshua's gut. It's pretty funny to see that great, extremely intelligent doctor do his slosh test. With his hands around Joshua's mid section he shakes him gently back and forth to listen for an overabundance of residual fluid.
He called this afternoon to see how Joshua was doing on the more concentrated formula and literally asked me to shake his belly and let him know if I could hear anything! Unfortunately, Joshua didn't pass the "slosh test!" But, the good doctor has had some ideas and I'm anxious to see them in action.

Once again, trial and error, trial and error!

We're thinking now that for some reason his digestive tract when fed with nutrition is actually pulling water away from the intestinal walls. It's depleting Joshua's body of even more fluid than normal, leaving him more dehydrated while taking in feeds than when not. We'll know more after some further testing.

But in the meantime, I expect there to be a whole lot of shakin' goin' on!

You know your kid's chronic when...

As many of you know we are once again patients of Cook Children's. Cant' say how much we love this place! Joshua was admitted Wednesday night after suffering another bad day of dehydration. He required two bolus saline infusions at home this week and still just couldn't maintain hydration.

Still don't know what's going on.

Our doctor comes on this weekend so hopefully we see some action. I'm hoping he'll have some spectacular idea to try. But, if not Pittsburgh is just a flight away. We're waiting for insurance's approval and we'll be able to get up there in June. It's been two years since we lasted visited them, I'm anxious to see what they think and if they have any new ideas.

So, back to the subject. We were admitted Wednesday and our favorite floor was full. So we ended up somewhere new. Don't like somewhere new. There's nothing to complain about, it's just new.

Today a very nice volunteer came into our room and asked if there was anything she could get us. In hopes to rejuvenate Joshua's spirits, I asked for the red tricycle he's come to love. She came back with it about fifteen minutes later. She said they must really like him up there, the child life specialist knew exactly who this was for and said to tell Joshua Hi!

So, out and about we decided to visit our favorite floor. It was once again like coming home. We were greeted with smiles and hugs. They wanted to know where we were staying and were sorry we weren't with them. Back in the room, a little while later, the charge nurse from the other floor comes into the room and asks if we want to move to her floor! Without a doubt!

So we pack up all our things and move out. The care partner and nurse that helped us move understood why we were changing rooms the minute we stepped onto the floor. In our room we were greeted with the sweetest Welcome sign, signed by many of the staff members. Ahhh, Home!

So, you know your kid's chronic when...

What goes up...

The doctors in Pittsburgh asked that Joshua have a barium enema before we headed up there these upcoming months. We were able to get that scheduled today. Thankfully Justin was available to go with me. To say the least it was quite a traumatic experience, it was pretty hard on Joshua too!

Cook Children's has such a wonderful group of angels called Child Life Specialists. What would we do without them? The Child Life employee that was assigned to Radiology today was a God send. She really made Joshua prepared for what was going to happen. He knew exactly what was coming next. Unfortunately, he was still very, very upset. Screamed and cried throughout the whole process. Needless to say, he got himself a $15.00 Gift Shop Matchbox car out of this deal!

The official report is still in work, but unofficially his large bowel seems to be functioning normally as well as the section of bowel between the small and large intestine. That's the area of concern. One answered prayer down...

Keep sending them up!

Pittsburgh or Bust

We had Joshua's follow up visit with GI yesterday. He's at a loss at this point. We have pretty much run out of options, other than just continue on as we are. There's a chance Joshua could have another STEP procedure, where the dilated portion of bowel is tapered down. This process makes the width of the bowel smaller and actually lengthens what's there. He's had 3 STEP procedures so far.

BUT will it help?

That's the million dollar question. We've got all the Texas pediatric surgical gurus collaborating. Our GI also has a call into Children's Hospital of Pittsburgh. It's very likely that we'll be heading that way soon. They've got such a well experienced team that is just exceptional at intestinal rehabilitation.

Maybe there's something else that we can be trying? We're willing to go to the ends of to find out. Just praying we don't have to go up there during the winter months! Hate the cold!

I'm a little uncertain about how I feel. Having some mixed emotions about the whole thing. The thought of them telling me there are no more tricks up the sleeve, is nagging me. But, we'll cross that road when we get there. With the Lord's guidance all the right decisions will be made. Until then, we'll continue to do what we've always done. Keep Joshua as healthy and strong as we can.

That means we watch him as close as we can, ready to catch a bout of dehydration or onset of a line infection at the first sign. Please keep him in prayer. His life is such a sensitive balance. I've seen him go from a bouncing, laughing, full of life, to a dehydrated, nauseated, lethargic little boy in the matter of 12 hours.

I get asked all the time, "How's Joshua?" I've often found myself saying "He's doing great today." or "He's having a hard time, today." Many times it's a different answer daily. One day at a time.

"Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself."
-Matthew 6:34

"All bets are off"

The last few days have ended most unpleasantly. Monday and Tuesday nights were really rough on Joshua. Retching and gagging relentlessly. We've had to decompress his tummy and hold all feeds for hours. The only change we had made in his schedule or diet is to start up an antibiotic that he's been on several times before. He needs to take antibiotics on a regular schedule to help control the bacterial overgrowth he experiences in his gut. So I asked if we should hold that med, and the GI agreed. So far so good. Trial and Error. Trial and Error! You never know what going to happen. Joshua doesn't follow any rules, in fact when I asked if this med could be causing his uncomfortable episodes, his GI said, "No, it shouldn't make a difference, but with Joshua, all bets are off!"

How true is that?

All bets are off.

Happy Birthday Joshua

Joshua,

If only I could take your pain,
and finally give you rest.
I cry to Jesus once again,
Through heartache I'm so blessed.

You are the angel I didn't know
I was so desperately needing.
With every milestone that you cross,
My faith in God is strengthened.

You've changed my life as you fight,
Every day a struggle.
The war is a long and continues on
As you bravely win each battle.

I'm so thankful to be the one
That God has chosen to mother
Such a wise, sweet-spirited little boy,
So unlike any other.

Happy Fourth Birthday my Little Trooper
Remember everywhere you go
"Fight the good fight of faith"
And may the Good Lord make you whole.

I love you.

Mama

NICU Reunion 2010

Today was Joshua's NICU's class reunion. Four years almost to the day, Joshua made the Harris Methodist NICU his home. He stayed an exhausting five and a half months, but we all came away with such a special place in our hearts for those unique doctors and nurses. That incredible staff nurtured, protected and loved our sweet baby to a healthy state, well enough to be entrusted in our arms.

Raising a child is such an important responsibility. But raising a child with special needs, what ever they may be, is an honor. All we did was step up to the plate. Grabbing the reigns and taking off without questioning why. I, myself, found handling our situation was much easier if I just looked at Joshua's special cares as just something I had to do. Just as a new mom learns how to care her newborn, I learned how to do sterile dressing changes, hang TPN/Lipids, start tube feedings and give meds through a g-button. All was taught by that incredible NICU staff. I'm so thankful for all the patience and guidance they showed me those 180 some odd days.



So, today was a treat, as always. We got to see many of those incredible angels that literally nursed our Joshua to life. It was just as wonderful seeing some of the inspirational families we've met along the way. I'm so proud to be a part of a special family and am thankful we were allowed to walk next door to make this year's reunion. I was afraid we weren't going to get to go, but as it turned out, Joshua's TPN had just finished and his doctor rounded in time.

On another note, we got the first results back on the extensive test GI ran on Joshua's small bowel motility. It wasn't good. It showed his intestine doesn't have much, if any movement. This is most likely causing the very first section of the bowel to dilate. It's what we were afraid we'd see. But his stomach should great movement.

We are anxiously awaiting word on what the GI wants to do now.

Please pray...

Mega-Duodenum

No, it's not the latest super hero, it's what the GI found today during Joshua's scope. For reasons they have not been able to identify at this time, his duodenum is extremely enlarged. Most likely this is due to the fact that his bowel does not move properly. In addition, the doctor found lots of irritated surface area. Once again, thanks to the bacterial overgrowth, possibly an allergy? We should know more next week. He also sent off a sample of fluid from the pancreas to see just how well it's functioning. He also placed a catheter through his g-button that starting tomorrow will monitor the movements in his bowel. For this to be accurate, Joshua must remain NPO (no food whatsoever) until 10:00 am. That'll make it 32 hours of with no feeds or oral intake.

"So now what do we do?" I asked the GI?

There are some medications that have been pulled off the market that work for some, but it takes a long time for approval, and there's some side effects.

We can adjust his diet.

And last but not least.....

Transplantation is back on the table. Justin and I weren't prepared for that one. He says it is probably our only "fix." That far away abstract concept of such a scary procedure suddenly came rushing at us way too fast. Woa. Take a deep breath and pray.

I know I've been really vague to those of you that I've sent a message or talked to. I just don't know how to comprehend all of this just yet. All Justin and I can do is keep Joshua entertained and distracted. Distracted from the fact that he's hungry and from the strange tubes coming out of his stomach attached to 20 electrodes.

Someone distract me....

Not Home Yet

Monday came and went. Tuesday's gone. Wednesday's bringing a trip down to surgery for a scope. Maybe we'll find out just what is causing (specifically) the dehydration. I'll try to get this blog updated as soon as I know something. It's been pretty chaotic trying to manage everything. Joshua's had a lot of ups and downs lately. The doctors are so great at trying to find a healthy balance for him. Praying tomorrow gives us answers...

Just a Short Visit

Our home away from home, again.

Walking onto the fifth floor up from ER feels so natural. We were given our room number downstairs and my heart sighed, "Oh, good. Our old room!"

We were received with lots of familiar, warm smiles . Waves and hugs even. If we have to be in the hospital, at least we feel at home.

This stay should be one of the shortest. No infection, just dehydration. That has pretty much been corrected at this point. It only took an hour of IV fluids before Joshua sprang back to life. The dry, frail, tired little boy was once again perky, laughing and energetic.

What a relief!

Once the GI is certain his body is back in balance, we are safe to go home. Probably Monday. Not bad.

Justin and Caleb have been able to stay up here and I know that helps to keep Joshua's spirits up.

So, we're going home back on TPN. Oh, well.

I've finally come to terms with that. It's just not time yet. That's okay. His time will come. No doubt about it. In the Good Lord's care, anything's possible! He's taken care of Joshua his whole life. And it's not up to me to question His timing. Just gotta have faith.

Faith, what a strong trait. Faith and wisdom, we could all use a little more...

Seen better days...

Today started out with a bang! Let's see, it started at about 4:00 a.m. Joshua moaned and groaned all night. He was miserable. Tummy hurt, had to go potty, thirsty, leg hurt. You name it. At one point Justin had taken him to the bathroom and he came back to bed nearly in tears. Our little boy is withering in front of our eyes. Uneasy about the whole thing, I slept with Joshua the rest of the night. When our nurse got there he woke up. And when she brought him into the living room it was obvious he was going to the Emergency Room.

So I called the on-call GI and told him what was going on. He agreed, Joshua was going in for assessment. Upon arrival it wasn't long before we were back in an exam room. (Doesn't usually take us long thanks to Joshua's VIP status!) Labs were drawn as well as a blood culture. IV fluids started and an IV antibiotic just in case. We were able to wiggle into a radiology room for an upper GI, small bowel follow through. Which I think doesn't look much different from the last one we did in Sept., although I've yet to hear the final result.

So far what I know is Joshua's loosing Sodium and Bicarbonate. His body is way out of whack. Our goal is to get him stabilized. When metabolically he's off kilter, he's in pain, he's lethargic, he's confused and very irritable. Not my little boy at all.

He's definitely in need of some fine tuning. My prayer is for his doctors' wisdom in his care. Small changes can make huge differences.

Take the Good, Take the Bad...

Today we had a follow up visit with our favorite GI doc; we got good news and bad news.

The Bad News: Joshua possibly has some dysmotility happening and more than likely we'll be back in radiology this week for an upper GI small bowel follow through. Dr. O was examining his abdomen and we heard an odd swishing sound coming from his bowels. "That's not right." says the doctor. Hate those words!

BUT....

The Good News: Starting some new meds, one that should help increase his appetite and another that will decrease bacterial overgrowth.
AND there's a VERY good chance his central comes out THIS WEEK! Yes, you heard it here first folks, THIS WEEK! Yeah! I can't even wrap my mind around how great that is.

He is still having some issues with his blood sugar and if it continues, it looks like we'll be seeing and endocrinologist. (Joshua's blood sugar was 54 this morning.) But that may be circumvented with an idea the doctor had about Joshua's feeding schedule. We'll see...

Sugar, can't live with it, can't live without it.

Good News:
Our weekly labs show that Joshua's Electrolytes are completely normal! The thing I was most concerned about! Woo Hoo!


Bad News:
His blood sugar is low. It's not too surprising though, because over the last few days Joshua's been tiring very easily and has been extremely irritable. We'll be checking it three times a week to keep a close eye on it.

A Little Afternoon Bloating

It's been nearly THREE weeks without TPN. I don't even know how to process that fact. What an amazing feat! This accomplishment hasn't come without it's challenges though. Each afternoon this week, Joshua feels just terrible. His tummy is so bloated, he's nauseous and we're continually having to decompress his tummy to achieve just a hint of relief. The biggest blessing has been that he doesn't seem to be losing too much fluid, I think he's staying pretty well balanced. Hopefully some of this is his response to the warmer weather we've had recently or the change in med schedule, which I'm changing back to what we were doing before our last hospital stay.

At any rate, to date Joshua is still TPN FREE! We have prayed for this since Joshua was born. Caleb makes sure to keep Joshua on his school's prayer list, too! What an amazing older brother Joshua has. I feel that I don't write nearly enough about our two other sons. We've got such a smart, creative and active trio. The Lord has truly blessed us. Each is so special in his individual way. I'm so thankful for my boys. As chaotic and confusing as my life is, these little boys are the glue that holds me together! Thank you boys!

We Are Home!

Woo Hoo! We made it. The craziness of trying to get out of the hospital with all we've acquired over the last 11 days, trying to get things washed and put away, along with all the other normal insanity around here has left me exhausted. But, I just wanted anyone who checks up on us to know we are out of the hospital. We're home with 4 days left of IV antibiotics and on a two week trial to see if Joshua can handle the lack of TPN. Labs and weight should tell us soon enough. Keep the prayers coming for our little man!

Homeward Bound?

Well we just may be, if labs look good in the morning that is. So far Joshua's just done great without any IV fluids. It's amazing. God is good, thanks to all who continue to pray for our little guy.

To think, a couple of weeks ago I was so bummed about a hole in his line. What a disguised beginning that was to our step in the right direction. Just goes to show, what may look like a mess to us, is perfect and beautiful to the Lord!

Sometimes we need a swift kick in the pants! So, instead of complaining, let's all just see where that kick sends us!

Love you all!

Electrolytes are Normal

Got good news this morning, definitely no more infection present and so far Day 4 of no TPN brings excellent lab results. Joshua shows no signs of dehydration. YEAH! Prayers are being answered around these parts!

Joshua's been in good spirits, riding around the hospital again on that little red trike. There's no stopping this kid. I have noticed that he's tiring a little quicker than normal, but he's been sick and it always takes a while to recover.

Looks like Cook's is our home through at least Wednesday.

Home Sweet Home?

No Time Like the Present

A gnarly line infection has landed Joshua in the hospital. His surgeon wants to try to clear the line of the infection before we pull it and replace with a new one. But, in speaking with the Infectious Disease doctor today, there may be an alternative.

He doesn't want to run TPN through the infected line. So tomorrow night we're running regular IV fluids through a peripheral line. His thinking is why don't we try pulling the line all together and seeing just how well Joshua can do without TPN?

Why not?

Worst case scenario, we put the line back in, which we'll have to do anyway if this stubborn bug doesn't clear.

Our GI will have to call the shots, but I'm thinking it's worth a try?

And the Results Are In!

Well, Joshua's first labs are in since the reduction in TPN. His GI believes everything is Excellent! All is normal, electrolytes, liver enzymes, metabolic panel - you name it!

Woo Hoo!

Here we go, onward full steam ahead!

In the last week Joshua has gained a pound and a half, drank over 12 oz of formula by mouth, ate bowls (yes bowls) of chili (no beans of course!) He's tolerating 70 ml/hr of his regular formula for 16 hours of the day. He's had beef jerky, cheese slices, pizza and some of Justin's birthday cake (not so much on the approved list, but what are ya gonna do?) My head is spinning.

Who is this kid? I hope he stays!

Keep up the prayers, God is amazing and it shows in this precious little boy!

One Whole Week and All's Well

So far so good.

Joshua's first week on reduced TPN has gone as smoothly as can be expected. He managed okay last weekend, but by Monday night, he was looking a little weak. Ready for TPN for sure. Today finds him much livelier and I'm anxious to see how the day goes tomorrow. We have an appointment with his GI, he's gonna be so proud of our little guy! I know we are!

Joshua's feeds are at 68 ml/hr and tomorrow I'll raise him to 69! Wow! That number would have been out of the question a year ago.

This all reminds me of an e-mail I once received. I don't remember all the details, but it was something about how unimportant most of us think a tenth of a second is. But how huge it could be to an Olympic runner. It went on to talk about other assorted seemingly small measures, that are extremely important to some.

So that is what I feel about ONE MILLILITER. I think it's HUGE!

We've lived our lives one ml at a time since Joshua was born and to see them passing by so quickly is mind-blowing. I'm a little dazed by the whole thing. A couple of years ago, for at least 12 months, Joshua's digestive system just couldn't handle more than 18 ml/hr. We'd make it to 19 okay, push him to 20, then loose ground and find ourselves back at 18 or even 16. Over and over and over. Joshua's little body was always very good about letting us know when he wasn't ready.

So, in a way I feel like this is a trap and well be sliding back down again in a moment's notice. That sounds negative I know. Not so much negative as routine. It was our routine for so long. Something I heard at a the Oley Foundation Convention last year has stuck with me. Never get too complacent with your care, but be careful taking risks.

That's the key. Is there such a thing as careful risk-taking? If so, I'm pretty sure that's what we do around here!

Monday, Wednesday, Friday

Our first step toward weaning of TPN starts NOW! Joshua's now tolerating 67 mls/hr of his formula over 16 hours through his g-button. His GI has written orders to hang TPN only 3 nights a week. We've tried something similar in the past, but Joshua wasn't ready and suffered from severe dehydration. He's tolerating his enteral feeds much better at this time, so hopefully we won't see the same negative responses.

So, what does this really mean?

Well, for once, Joshua can sleep through the night without being tethered to a pump/pole. His late night emergency trips to the bathroom will be much less complicated. I am freed up of the nightly ritual of aseptically mixing and hanging the TPN. It's less access to his line with less chance of introducing an unwanted bacteria into Joshua's system. And most importantly, it's Joshua's opportunity to show us what he's got. If this goes well, we are one step closer to being central line free!

After three years of our lives revolving around that little rubber tube, the idea that it would no longer have a presence in our lives is mind-blowing!


The D-word does loom over us. DEHYDRATION. But, God is amazing and we have living breathing proof that prayers can be answered.

Thank you to all who continue to pray for our little Joshua. It's working.

Sixty One MLS/HR

WooHoo!
Only 9 mls/hr to go before Joshua's GI says we can pull out his Central Line.
Be on the lookout, we're planning a big celebration!

The Honeymoon's Over

The past few weeks have been incredible for Joshua's therapy. We had one little set back with the flu, but Joshua recovered beautifully. Way better than ever before. Joshua's meeting his goals every time we turn around. He's tolerating oral stimulations, he tolerating undesirable textures, and trying new foods. We are still working on taking in more quantities of approved foods. 

One drawback to all this progress, Joshua's getting bored. He's easily distracted in therapy, not wanting to stay in his seat, asking me and his nurse questions. Now comes the underlying behavior issues. 

...The honeymoon's over. He loves his therapist, he still enjoys pleasing her and they make each other laugh, but the pressure on him now. Here comes the real work. We've had three and a half years of molding his eating behaviors into some very bad habits. Much of it is attributed to his health, but all the same the habits have been formed.