Here is the link: http://andysavage.net/default.aspx?p=84018&beid=116524

Becky and I have never met the Savage family, but I feel like I have because of Andy's regular tweets about his life, job and activities at Highpoint Church.

Cooper has Down syndrome, and a recent surgery has developed complications.

I've had Cooper and the Savages on my mind quite a bit this week. Here's an understatement: It's not easy when your child is in the hospital. Time crawls to a stop. So much of our society has turned into "you can get it as soon as you want it," which is the exact opposite of what happens in the hospital.

There, you can't get it when you want it, and sometimes doctors don't have the answer you want - or an answer at all.

Hopefully, Cooper will bounce back quickly.  In the meantime, keep him and his family in your thoughts.

Permalink | Leave a comment  »

It's been a long time since I've updated about Jarrett. I'll try to do better. (Be warned, graphic discussion is ahead...)

We've had a great couple of months. Sure, we've had hiccups along the way, but late Summer/Early Fall 2011 is full of positive memories.

A couple of weeks ago, we attended Step Up for Down Syndrome. Our friends and family came through for us on this - big time. We set a fund-raising goal for "Team Jarrett" of $1,000. Though the team page doesn't reflect the few, final donations we received, we ended up raising $1,500 for the Down Syndrome Association of Memphis & the Mid-South. Amazing! The actual walk was a lot of fun, too.

Jarrett is developing quite a personality. To the dismay of his mother, he prefers to be with me much of the time. We're not sure why - but he has definitely fixated. He loves his sister, and is very curious about Kitty. He's not quite sitting up yet, but he is getting very good at playing with things like balls, rings a squeaky toys. And, to quote a daycare teacher, "he rolls like a tumbleweed."

Medically, we are working hard on moving food through his body. Essentially, Jarrett has two problems with his digestive system.

1. Gurgles. I know it sounds weird, but I don't know how else to put it.  The boy's belly makes the weirdest noises I've ever heard. Like a pressure valve opening and closing. You've really got to be there to experience it.  Our gastro doctor put it best when he said, "It's not right." So we are working on figuring out what is happening. An barium swallow test last week ruled out any blockages. Could it be an allergy to formula? Still checking. Related to this may be the occasional bacterial infection that causes him to lose his appetite. Usually, an antibiotic helps with that.

2. Lack of Pooping.  Jarrett rarely poops. It's up to us to clean him out with a catheter and saline, usually a couple of times per day. In between these washouts, unless he spends ample time lying on his belly, his stomach fills up with air like a balloon to the point where he is miserable and won't eat. Our gastro doctor says occasional botox injections are going to be the likely aid with helping him "relax and open up" down below.

Because of all this, we keep careful track of his daily food intake:

Overall, the boy is doing pretty well, all things considered. It's hard to believe we're coming up on 11 months since he was born. We are really looking forward to the upcoming Christmas season, and praying that everyone remains in good health. We didn't have a very enjoyable Christmas last year, so we are very ready to enjoy the holidays.

-Jason

Permalink | Leave a comment  »

Permalink | Leave a comment  »

Permalink | Leave a comment  »

Here, he's eating sweet potatoes.  This was just after a bottle, so he wasn't too hungry.  So far, his favorite food seems to be apples.

Becky is making all the (solid) baby food herself - we aren't buying anything pre-packaged.

-Jason

Permalink | Leave a comment  »

We've been having our own struggles with Jarrett eating.  He's supposed to be eating at least 30 ounces a day of formula, but he's hovering in the 20 to 24 ounce range.  Since his surgery, he hasn't gained all that much weight, which is a source of increasing obsession for Becky and I.

So when I stumbled across Louis talking about trying to get his kids to eat, I had to share.

-Jason

Permalink | Leave a comment  »

I call this post "On Closure" because that's what I'm trying to focus on right now - closure.

For Jarrett, closure comes in the form of his pull-through surgery, which was performed one week ago today. Gone is the colostomy, the sometimes annoying bag we've had to keep stuck to our child's side for the past six months. In its place are scars, and our boy's much maligned digestive system adjusts once again to medical intervention.

It was a tough week. I can't speak for Becky, but I was definitely not prepared for the physical toll the surgery took on our child, especially in the first days after it was done. Last Wednesday, I found myself having full flashbacks to the awful first days of his life, time spent in LeBonheur's NICU when such things were still new to us. Often, I don't feel responsible enough to have a mortgage, let alone make decisions about whether or not to give my baby another dose of morphine.

By Friday, Jarrett was coming around to being his old self again - the smiling, happy baby we love was back.  Now, eight days later, he's still getting back into the swing of things.  We're struggling to get him to eat enough, and his poor bottom has the worst diaper rash I've ever seen.  But he's home, surrounded by family.  That's important.

For me, this feels like closure because it's (hopefully) the end of the physical, medical odyssey we've been on with this child. Yes, he is very susceptible to lung ailments, and we could find ourselves at Le Bonheur when Cold and Flu season picks back up this fall. But for the first time, we don't have "another surgery" on our calendar. We just have the unknown future.  My mindset has been to worry about the physical ailments now, and Down syndrome later. Perhaps I have been in denial about that.

I could write forever about how much I appreciate my friends and family, who have been so great to us through all of this. Luckily, everyone knows who they are, what they've done, and how much we love them. At least, I hope!

AS AN ASIDE: I'm weighing whether or not it would be appropriate to post "before and after" pictures of Jarrett's colostomy. More than one person I've talked to has been interested in this. I'm a little fearful, however, of the pictures being shocking to people that aren't ready for them.  Any thoughts?

As always, thanks for stopping by...

-Jason

Permalink | Leave a comment  »

Jarrett is six months old today, and Ally eight and some change.

See the full gallery on Posterous

Permalink | Leave a comment  »

IMG_1397.MOV Watch on Posterous

...but he was really adamant about whatever it was!

Permalink | Leave a comment  »

Here are some pictures we took of our children this morning...

See the full gallery on Posterous

Permalink | Leave a comment  »

For anyone who is not already aware...Jarrett came home Thursday night!

He is doing really well. He is still very congested, but he seems to be able to breathe well despite this. I think he was really really happy to be home. We saw lots of smiles and he played in his bouncy seat for a really long time!

On Monday, we received a call from Jarrett's surgeon's office and they have scheduled his pull-through surgery for June 13th.

We are really hoping, as much as we love LeBonheur (amazing facility with a spectacular staff), that this surgery will be the last time we are there during 2011. Only Jarrett knows for sure!

We are also hoping to feel comfortable enough to take Jarrett on some outings this summer. We feel as though we have been cooped up for months! Now that it is getting warmer it's even more difficult to stick around our house. We are just so fearful about Jarrett catching a virus...it's hard to let go of that fear and I'm not entirely confident that we should!

Thank you so much for all of the prayers and positive thoughts! We are not deserving of such kind and compassionate friends and family!!!

Permalink | Leave a comment  »

Jarrett is feeling much better today!

He was moved from the PICU to the eleventh floor late yesterday afternoon. The eleventh floor is home to the respiratory unit...when we heard he was being moved there both Jason and I were concerned that a serious breathing issue had developed. This is not the case - there just wasn't any room in the Infant Care Unit, where we usually stay.

This morning, Jarrett's nurse was explaining to me that prior to the big move to the new hospital, their unit was the respiratory and gastro unit...I think this works out well for Jarrett!

Jarrett is doing very well. I don't think he is in nearly as much pain. He was a little more playful and much more talkative this morning.

I should also note that he was taken back to the "Baby Torture Chamber" yet again this morning. He was not happy.

The surgeon who stopped by Jarrett's room this morning seemed pleased with his progress...another doctor seemed to think there is a good chance, if this positive motion continues, that Jarrett will be coming home in a few days. That would be wonderful!

Today, the plan is to continue to monitor him - he was taken off oxygen this morning, hopefully his breathing will continue to improve! He will also try drinking his milk again...he hasn't had much appetite since the surgery and when he does eat it's Pedialyte.

I took some pictures this morning...it's a beautiful day outside - the sunshine really brightened Jarrett's room!

See the full gallery on Posterous

Permalink | Leave a comment  »

Becky writes...

Yesterday's surgery went very well.

Jarrett was called to surgery around 2pm. We received a call that he was under anesthesia and the procedure began at 2:45. He was in recovery and off the ventilator at 4:15.

Jarrett's surgeon told us yesterday evening, while Jarrett was in recovery, that the procedure was uncomplicated:

• His intestine was bunched up against his lung and was easy to pull back through.
• The hole in his diaphragm was small and easy to stitch closed.
• While they were in there, the surgeons looked around Jarrett's belly and nothing else seems to be amiss.

He also said that Jarrett may be ready for his pull-through surgery (to close the ostomy) in 5-6 weeks. (!!!!!)

Right now, Jarrett is in the PICU and seems to be in some significant pain...he is receiving pain medication and mostly he sleeps. When he does wake up (it's more like snapping to attention than waking) he spends a lot of time crying/moaning. He also gives me a look that just says "How could you have let this happen?"

He doesn't have too much of an appetite yet either.

Fortunately, he seems to be breathing well and his nurse just told Jason that he is to be moved back to a regular room (and out of the ICU) later today as soon as there is a bed available.

I snapped the attached picture this morning as Jarrett rested. I love the way he is grabbing his wires as though hanging on for dear life!

Jarrett's hair...and his general adorableness...garners him a lot of attention wherever he goes!

Permalink | Leave a comment  »

Jarrett is on the schedule for surgery today. We don't know what time the surgery will be-it all depends on how difficult the surgeries before him are as well as if any more emergent surgeries pop up beforehand. We will keep you posted!

In the meantime, I (Becky) am completely on edge. I totally told Jarrett's sweet nurse, Mary Elizabeth, that we would "raise hell" if his surgery was bumped because we gave him medicine by mouth this morning! (I felt so bad!)

Pictured here is Jarrett catching up on some reading before his surgery today.

Thank you all for your thoughts and prayers...we are forever grateful!

Permalink | Leave a comment  »

Posted by: Becky

As it stands right now, surgery is scheduled for tomorrow (Monday) morning.

Jason and I are both pretty anxious about this surgery.

Although this will not be Jarrett’s first surgery, Jarrett’s already undergone 3 surgical procedures, this surgery will be a bit different for a couple of reasons.  

First, this surgery will be, in our non-medical professional opinion, more invasive than his previous three procedures.

Based on our discussion with one of the surgeons this morning, we know they plan to go in through Jarrett’s abdomen and basically pull his intestine back through his diaphragm into the correct location. They will then stitch the hole in his diaphragm closed...the hole is located just below his sternum.

Jarrett’s age also puts us on edge. Jarrett is much older now. When Jarrett had his colostomy he was two weeks old. At that time he just wasn’t entirely aware of what was going on around him. Today, at five months old, he is very aware.

The surgeons have assured us that he should not have a complicated recovery. Any pain he may have should be easily managed.

He will be put on a ventilator for the duration of the surgery. After the surgery is complete, he will have to be weaned. It is possible this could take a few days. When he was on the ventilator for his colostomy, he was weaned within 24 hours...hopefully this surgery experience will follow suit.

Because his intestine is currently pressing on his chest cavity, depending on how much his lung has been compressed, there  may be some complications as his lung re-expands. For example, he may get some fluid in his lungs. This situation should not be unmanageable.

Despite all of our anxieties, we are eager for the surgery to be complete. We are truly hoping this situation has been at the root of his chronic lung infections...it would be nice if after this surgery our next stay at LeBonheur was for his pull-through surgery.

The picture shows Jarrett receiving his IV this morning in preparation for surgery tomorrow.

Permalink | Leave a comment  »

Becky writes...

It's been an interesting week in Plankdom...

Early Wednesday morning, Jarrett and I found ourselves in a familiar location - the LeBonheur Emergency Room.  Tuesday night, Jarrett developed a horrible, wheezing cough.  It was somewhat mild early in the evening, Jason and I simply thought it was time to consider making yet another appointment with our pediatrician. Jarrett was happy, there was no fever, he drank a big bottle around 11pm, it was just a cough, or so we thought.

In the middle of the night we awoke to the sound of an old man in our bedroom. Turns out the old man was Jarrett and he was coughing so much that he couldn't catch his breath. At that point, we decided we couldn't wait, I would drive him to LeBonheur. Jason gave Jarrett an albuterol treatment before we left.

By the time we arrived at the emergency room, Jarrett's coughing had subsided...he was breathing well...things looked good. The ER doctor felt it would be a good idea to take a chest x-ray, just to make sure there was no fluid in his lungs.

The x-ray revealed that some of Jarrett's intestine is not in the correct location.

Jarrett has been diagnosed as having a diaphragmatic hernia.  The surgeon believes he specifically has Morgagni's Hernia. 

In other words, Jarrett was born with a malformed diaphragm. Because of this malformation, some of his abdominal organs (specifically his intestines) have pushed through his diaphragm and into his chest cavity.

The surgeon believes this may be why Jarrett has been having so much trouble breathing and could be contributing to his chronic lung infections.

To correct this malformation surgery is needed.

The surgeons were hoping to perform the surgery Friday, but because he is currently fighting a lung infection they decided to postpone the surgery in order to allow time for Jarrett to recover and get a little stronger.

Incidentally, have you ever seen a baby getting a chest x-ray?

Jason calls this contraption a "baby torture chamber".  Based on information I have found online, it is really called a pigg-o-stat. Jarrett is NOT a fan.  At all. I could not find any pictures online depicting what really happens when you stuff a baby into that chamber.

The attached pictures show both a random baby receiving a chest x-ray and Jarrett on Monday. He is officially five months old!

See the full gallery on Posterous

Permalink | Leave a comment  »

I took this sweet picture of my wife's jalopy in rainy traffic yesterday.

Permalink | Leave a comment  »

IMG_1266.MOV Watch on Posterous

Taken today while waiting to see Dr. Stokes, who is Jarrett's pulmonologist.

Permalink | Leave a comment  »

I haven't posted any updates about Jarrett for awhile, so I guess it's way past time to update you on what has been going on with the little guy.

Jarrett's first week at home was largely uneventful, except for a nagging, somewhat frightening breathing problem that kept cropping up.  After two doctors appointments early in the week after he came home, we thought he was getting better over the weekend.

Then, last Monday, he got a fever, and his breathing was quite labored.  Because the doctor's office was closed, on advice of the on-call nurse, we took him to the Emergency Room at Le Bonheur.  As it turned out, that was a good decision.

Jarrett has been diagnosed with bronchiolitis, which was causing the labored breathing.  Unfortunately, that's a virus, which means antibiotics don't work.  All the doctors can do is keep him comfortable and let his body work the virus out.  Jarrett had to be admitted to the hospital, and as I type this, he's been in for a week.  His days consist of sleeping and getting gunk sucked out of his nose and throat.

Tour his hospital room: http://www.twitvid.com/MGA78

This stay hasn't been easy for Jarrett. Through last week, things got progressively worse. They had to take him off bottle feedings because eating was wearing him out, and they started feeding him through a tube that went through his nose. That was still too much, so now he is on an IV. Unfortunately, our biggest battle at the end of his stay in the NICU was teaching him how to eat...now we're being told that, once he gets better, we'll likely have to start that all over again.

This stay also hasn't been easy for Becky or I.  Without getting all "woe is me," it was quite a letdown to return to this hospital life after spending a short 10 days with Jarrett at home.  From a practical standpoint, it's extremely draining to spend all day at work, and all night, overnight, at the hospital.  But we don't want him to be alone at night.  Becky and I, with the help of our wonderful family and friends, are doing the best we can juggling our lives and maintaining a presence at the hospital. Luckily, usually when I am filled with despair, she is there to build me up, and likewise I can build her up when she is feeling down. It's tough, but we'll make it.

Also, I'm really worried about him developmentally.  He's going to have enough challenges without starting out behind because he was cooped up in a hospital bed for the first two months of his life.

I've rambled on enough for one night.  Updates likely won't come daily, but I'll be posting more often to talk about what is happening with our dear boy.  And hopefully, someday, my posts will be about happier things than sick children!

Permalink | Leave a comment  »

He's home! Jarrett came home last Friday, and it has been an interesting few days since.

First, for Becky and I, it's almost like we are doing this for the first time.  It's been so long since we've had a baby in the house that we've got 'baby fear.' In other words, we don't want to break him.

Things have gone pretty well, except for some very annoying, sometimes scary congestion that Jarrett has.  Monday, the doctor insisted that is purely nasal congestion - nothing in his lungs - and combination of nasal irrigation, sitting in steamy bathrooms, and sucking crap out of his nose with a ball syringe should do the trick.

But it's downright scary at times to listen to him breathe, and it's left us tired and tense.  In the overnight hours early Monday morning - before the doctor's visit - we almost took him to the ER.  But we decided to wait because of the snowstorm outside, and it seemed like that was an OK decision. The doctor said we did the right thing.

Otherwise, the doctor said he is doing well.  Ally, who had two snow days this week, seems to be enjoying life as a big sister, even if she is a little jealous of the attention he gets.  I guess that is to be expected.  She's looking forward to finally celebrating Christmas this weekend with my parents and my sister's family.

Pictured in today's post are myself, Jarrett, and the real head of our household.

Permalink | Leave a comment  »