Wednesday, June 30, 2010

Deja vu (let's hope not)

Well, Bodie's weight gain has stalled in the last few days (despite downing around 25oz of milk a day, well above his "minimum requirements" per his weight) and they can't wean him off Milrinone (despite maxing him out on Enalapril and adding Diogixin, which should help with his heart squeeze). The general consensus is that his little heart is just working too hard and they need to figure out a way to help him out. So...they've decided to start him down the track for his Glenn, the 2nd of his "scheduled" surgeries (it will actually be his 3rd open heart surgery, since he had the pacemaker/BT shunt surgery in April). The first step in doing that is his cardiac catheterization, to look at his pulmonary pressures and make sure everything is ok for the Glenn. It hasn't been officially scheduled yet, but word is that it will be tomorrow or Friday.

It's hard not to be in a total panic thinking about him going back to the cath lab, thinking back on his last experience there. For those of you who have only recently been following our blog, Bodie did not respond well to the one and only cath he has had thus far. He went into cardiac arrest on the table before the procedure even began, and went into arrest again upon returning to his room. He needed chest compressions both times (although for less than a minute each time, thankfully). Then we ended up almost losing him later that night. BUT, he was much sicker then - that was prior to him getting the pacemaker and since his resting heartrate was in the 50's at the time, I guess he was technically coding before he ever even got to the cath lab. So, we have every reason to think this cath will go much better and that he won't have the problems he had last time. But of course, the worry always sits in the back of your mind.

It's in a weird position to be in, now knowing the cath and his Glenn (assuming the cath goes well) are so close in our future. I mean, of course we knew they would be. The Glenn window is 4-6 months and he's already 4 1/2 months old. And we KNOW he won't get any better until after his Glenn. The hope is that the Glenn, because it allows for passive bloodflow from the head to the lungs, rather than forcing the heart to pump it over a shunt, will cut down on the work the heart has to do and help Bodie out considerably. The general thought is that it should help him a lot, particularly considering that a lot of his problems seem to stem from having to pump blood over his large shunt.

But it's still weird to look at him, so smiley and silly, and to know that his next open heart surgery could literally be within weeks. Infectious Diseases has cleared him for both the cath and the surgery at this point (meaning he does not have to complete his entire course of antibiotics before doing either). This is technically exactly what we were praying for (mine as well kill 2 birds with 1 stone and do his next surgery while he's stuck in the hospital completing his antibiotics anyway), but all of the sudden it's so much more real and that's scary.

So, tonight, please pray that:
1. Bodie keeps eating and starts putting on weight (they'd prefer him to be at 11 pounds for his surgery, but will take him lower if necessary - he's not too far off).
2. Bodie's cath goes well and shows no surprises and that his pulmonary pressures look good enough for his Glenn.
3. Bodie doesn't catch anything else.
4. Dusk and I can have peace with the thought of another open-heart surgery hanging over our heads. Pray that we can rest in God and His will for our son and our family.

Thanks prayer warriors!


Amy


Monday, June 28, 2010

Welcome to the world, sweet Michael

Remember my last post about how the world keeps going on even though our life has come to a halt? Well, prime example of one of the beautiful ways life keeps on keeping on - through the miracle of birth!

My older brother Matthew and his amazing wife Valerie welcomed their first child today, a beautiful baby boy named Michael William Gerrish. The peanut was 5lb13oz and 20in long and cute as a button! I got to see him this evening and celebrate this miracle of life. I know you are all Bodie followers, but this news was too big not to share with you! Here are some pics of the sweetness:
Beautiful boy:
Proud papa:
Me getting in on the snuggling action:
CONGRATULATIONS Matt and Val! We could not be more excited for you!!!

Sunday, June 27, 2010

A family divided

Today, we had a really sweet moment - our very FIRST picture of the 4 of us, taken in a hospital room, with 3 of the 4 of us in hospital gowns since person #4 has a nasty infection persons #1-3 have no interest in acquiring, but a family picture nonetheless :-):


It occurred to me how symbolic it is to only just now be getting this picture when Bodie is over 4 months old. We just haven't been together that much and during the 3 weeks we did have at home together, we just never got around to it, always figuring we'd have more time to do it later. Nowadays, we make it a point to try to have a few hours a week where the 4 of us are under the same roof. I know, I know - a few hours a week? It makes me sad, too. I know a lot of you who read my blog are mothers of young ones, and I hope tonight you'll hug your babies a little tighter, thanking the Lord that your whole family is in one place. I wish we could say the same for ours. I knew we will be eventually, but it's still a ways away. I can promise we'll take lots of pictures when that does happen!

I try to remain as positive on my blog as possible, but I also want to let you in on some of the struggles we really face as parents of a critically ill child. I don't want to sugarcoat it - it is hard. And we make it through because we rely on God. But some days are harder than others. And I want to share this with you, so that those of you who pray can pray for us as we work through all of this.

Today, I went to church for the first time in a while, and I have to say that it was actually a little difficult, but not for the reasons you might think. We love our church community and in one sense, it was wonderful to be back among our community.

But the church is also where Sierra's preschool was, and it really broke my heart to drop her off in her Sunday school class, which happens to be the same room where her preschool class was...there are just so many memories of her having fun there and it breaks my heart that she's not there with her friends anymore.

The other reason it made me sad is that I've been in survival mode for so long, going back and forth between hospital family and home family that I haven't really had to live out in the real world. You know, when you have a really sick child, your entire world just stops - and, if, like us, you know your child will not be better until after another surgery, you just sort of hold your breath and wait for your lives to start again after that surgery. And when you don't have to be out in the real world too much, you can kind of live in a little bubble and you assume the rest of the world has stopped like yours has. But when, when you're forced back out into the real world, you notice that nothing has stopped - that the world has gone on, that children have grown, that people have gone on vacations, that people have gotten new jobs, that things have just, well, kept on going. And it's a rude awakening. I think that's what happened to me today. And I guess I just wasn't really prepared for it. I guess I sort of half-expected everyone to be in the exact same place they were 4 and 1/2 months ago, when our world came to a screeching halt. And when I found that they were in completely different places, I was sort of flummoxed, wondering how that was even possible.

So, there you have it. The good news (and there always is, even admist the chaos) is that Bodie is doing well. He has been continuing to gain weight, albeit slowly. And he's smiling most of the time. I think he's working on stealing the hearts of every nurse on staff in the CTICU (as is Sierra - they come looking for her to say hi!). Can you blame them? I mean, look at this smile:



Prayer requests for tonight:
1. Pray that Bodie continues to eat and gain weight.
2. Bodie continues to have blood in his stool, so they're assuming he's having another run-in with c-diff. They started him on antibiotics for it. Please pray that the antibiotics treat it quickly and effectively so that he doesn't get as sick as he got before.
3. Pray for everything going on in our family right now. It's a delicate balance and it honestly doesn't take a lot to tip it one way or the other.

Thanks!
Amy

Friday, June 25, 2010

Picture Overload

Today, Bodie was so unbelievably smiley. We had a visit from my close friend Gina and she took lots of great pics. Here are just a few:

Flirting with everyone in sight:
Big blue eyes:
I love tummy time...
but man does it make me tired!
I love mommy:

As far as prayer requests go, Bodie responded really well to being put back on the Milrinone and his sweating has almost stopped entirely - praise God!!! His BNP went way down and his weight went back up a bit, so the doctors were really happy. This afternoon he was a little fussy and not quite as interested in eating. He's also drooling like nobody's business, so there's a good chance it's teething. But with these heart kiddos, little things like fussiness and a slightly decreased appetite can be indicators that something is seriously wrong. Please pray that it's just teething and his appetite picks back up! He also had blood in his stool earlier today, so there is some concern that his c-diff may be back (seriously, can this kid puhlease stop catching infections???). Please pray that the blood was a one-time thing and not c-diff.

Thanks!!!
Amy

Thursday, June 24, 2010

Our little sweatball

Bodie, "helping" the tech today during his echo (he has started reaching for things in the past few days - it's super cute):

So, since I last posted, Bodie has been sweating...and sweating...and sweating. This morning, it was so bad during this feed that he was literally dripping sweat. The poor kid looked like he had just run a marathon. And his BNP went back up to almost 4,000 (it had been down to the 600's just a few days ago). So, they put him back on the Milrinone drip and will reassess tomorrow. The general consensus is that this is all due to overcirculation due to his really huge shunt. The good news is that kids with this problem generally grow into their shunts and it stops being a problem. The bad news is that Bodie will have already had his second surgery before that has a chance to happen.

So, we're kind of in a catch-22. Bodie needs his second surgery to correct his overcirculation issue. But he's not big enough for that surgery yet. But he can't gain weight because he's burning all of his energy overcirculating. Did you follow that? I know, it's complicated (especially when you throw in the fact that he still has at least 4 weeks of antibiotics before he can have surgery).

So we wait and see what Bodie does. He may just need to stay on Milrinone until his surgery, if that's what he needs to give his heart enough help for him to gain weight. Or, they may be able to manage it with other meds. Bodie will tell us. In any case, he needs prayer - that they can figure out the right drug cocktail for his little body to calm down and start beefing up.

Thanks!

Amy

Wednesday, June 23, 2010

The ties that bind



Tonight, we are so grateful for our family and praying for our family members hurting and facing physical challenges.

In our immediate little family, Bodie is doing well, but has hit a little road bump. Since they turned off his Milrinone yesterday (the only heart med he was on - it helps with squeeze and dilation to get the blood to the entire body), Bodie has been sweating on and off pretty profusely. They were planning on sending us to the step down floor today, but decided to wait and watch him. They're not sure whether all of the eating he's been doing is having an effect or whether he's just dependent on Milrinone right now. They're slowing down his feeds a bit and will watch him overnight. If he's still sweating (and his BNP has gone up), they'll probably put him back on the Milrinone and keep him in the cticu. (He can't go to the step-down floor on any drips, including Milrinone.) So, he definitely needs prayer for the sweating issue. Pray that his little body just needs to adjust and that we'll start to see a huge improvement.

Sierra is doing much better. She has been having so much fun getting to know Bodie and he is finally over his fear of her and is totally enthralled by her. It's so cute to watch. I caught a few pics today of them "playing."

Sierra (in the blue gown the nurses gave her so that she wouldn't have to wear the annoying yellow gown anymore) giving Bodie his toys:


Bodie just STARING at Sierra:


Bodie smiling at Sierra:


Bodie's first picture with Sierra's lovey, Tigger (those of you who know Sierra personally understand what a HUGE deal this is that she was willing to share Tigger with him!):


And, with a heavy heart, I need to ask for prayer for a few other family members.

First up, Dusk's brother Paul:
Paul was just diagnosed with kidney stones. YUCK. From what I hear, passing them is more painful than childbirth. They've put him on oxycontin to help, but I think we all know he could use a little prayer to get him through.

And secondly, my mom Nancy:
You all know my mom from my previous posts (if you didn't already know her personally), because she has been our saving grace the last 4 months, coming down and staying with us for weeks on end to try to help us maintain some sense of normalcy. My mom had breast cancer in her right breast in 1999 and had a lumpectomy, chemo and radiation. She then had kidney cancer in 2007 and had her kidney removed 2 days after Sierra was born. Well, they discovered 3 suspicious lesions in her left breast last week and confirmed via biopsy Monday that they are cancerous. :-( My mom is an amazing woman and such a fighter and we have no doubt she will make it through this bout with flying colors as well. The only question is how grueling the treatment will be to get to the other side. The good news is that the lesions are small (less than 1cm each) and are encapsulated (i.e. the cancer does not appear to be invasive). She has not met with the surgeon yet, but was told by her doctor that most surgeons will not do a lumpectomy for more than one lesion, but will instead do a masectomy. Please pray this is not the case and that they can do the least invasive surgery possible to remove the lesions. Pray also for my mom's spirit right now. She has such an amazing, positive spirit, but it's a lot to take in.

Thank you all, prayer warriors!
Amy

Monday, June 21, 2010

Eat, eat, eat...oh and eat some more please

You want me to do WHAT???
Oh, eat? Well, why didn't you say so? That's my favorite activity!


Bodie has been an eating machine the last 2 days and it's totally starting to pay off! He's finally putting weight on. He's probably close to his daily caloric need from his daytime bottle feeds alone at this point, but they're going to leave the ng tube in for now to give him extra calories overnight while he sleeps. I couldn't be happier about that. He needs to gain some fat, that's for sure. :-) Today, they put a PICC line in, which will be a more stable iv for giving him his antibiotics, drawing blood (no more heel sticks, YAY!), etc.

Rumor has it he'll be moved to the step-down floor later this week and then he'll stay there until he completes his entire course of antibiotics (he's on Day 12, so that will be somewhere between 4 and 6 weeks from now). When he's done, I think he'll go back to the cticu for his next surgery, but I'm waiting to hear the specifics from the cardiologists about that one.

Prayer requests for today:
1. Pray that Bodie keeps eating and keeps gaining weight! We need him to fatten up for his next surgery.
2. Sierra is SO much happier. Thank you so much for all of your prayers for her. It is pretty clear that she REALLY needed mommy and Bodie time. I now bring her into the hospital with me and she's having so much fun bonding with Bodie. We will probably keep doing that for the next 2 weeks or so before we start sending her to a friend's house a couple days a week (let me tell you, even a really well-behaved 3 year old won't last too long stuck in a hospital room all day). But when Bodie moves to the step-down unit, I'll be sleeping at the hospital, so Dusk and I will have to work out the logistics of how we'll get her up to the hospital in the morning and how we'll get her back home in the evening. It will change things up a bit, so please just pray for patience for all of us as we work that out. Please also pray that things work out for a long term solution as well. It is constantly at the back of my mind, nagging at me. So pray for peace - and a good solution!
3. Bodie's BNP continues to drop - praise God! Please pray that it continues to do so and remain in the healthy range for him.
4. Pray for no more infections!!!

Saturday, June 19, 2010

A day for Sierra

I know this blog is all about Bodie, but I keep telling him he's not the only game in town. So, today's post is all about Sierra. :-) Today, I decided to stay home from the hospital and just focus on Sierra. Since this will likely be the last weekend Bodie is in the CTICU for awhile, I wanted to take advantage of the fact that he has his own nurse 24/7, so I can come home and feel comfortable about it. So today was all about Sierra and doing the stuff most families take for granted. It was a wonderful day.

This morning, we did a playdate with one of her best friends from school, Sofia. God has blessed us with such a great little friend who lives so close to us who also happens to have a super cool mom that I dig as well. The girls played in Fia's backyard and then we all walked to pizza and Bristol Farms for cookies (turns out they give out free cookies to kids - who knew?). (and yes, she insisted on wearing her princess dress the entire time - thanks again for the dress Sara!)
After Sierra's nap, Dusk and I took her to the beach (which we really need to do more often since we live 5 minutes away!), then the park and then out for dinner afterwards. It was a nice reminder of what our family used to be like before we were split between home and hospital. It was refreshing for me and a great thing to do before Bodie goes up to the 6th floor and I can only come home for a couple of hours during the day (and that's only if I can find someone to sit with Bodie so that I can come home).
Even when I'm not at the hospital my mind is never far from it - I call in every 2-3 hours to check in with Bodie's nurse to see how he's doing. Today, he was apparently eating her out of house and home, which is a great thing. But since he hasn't been keeping that pace up at night and has been steadily losing weight, they put the ng tube in to give him his feeds overnight without him having to work for it. Ideally, he'll sleep right through the feeds, giving him the double bonus of calories and extra sleep! I've been worrying about him not gaining weight, so even though he's not the hugest fan of the ng tube, I'm totally ok (thrilled, actually) that they put the it back in, just to help him out for a bit.

Prayer requests for tonight:

1. Bodie's BNP has been kind of all over the place. All of his other stats are great, so please pray that this one comes back down to normal as well.

2. Pray that doing his nightime feeds through the ng tube will be exactly what he needs to turn the corner and start gaining weight.

Thanks!

Amy

Thursday, June 17, 2010

Times, they are a'changing

Let me preface this blog entry by saying that (i) Bodie is doing great (eating like a champ and recovering well from the MRSA) and (ii) I don't do well with change. Bearing that in mind, here's a little window into the last 2 weeks in our world...

Change #1: I was let go from work last week. To be fair, I don't blame them. I mean, come on, how long can you let a CFO position be vacant with NO idea when the person is going to return? They had already graciously given me one extension on my maternity leave, and I absolutely understand that being all they could accomodate. But, clearly, I wasn't in a position to return to work June 15 as planned, so there wasn't really anything else we could do. But it really saddened me - I had worked there for over 5 years and absolutely loved it. It was a wonderful job - I learned so much and truly loved coming into work. Not very often in life you can honestly say that you love your job? So, to have to leave it for circumstances outside of your control really sucks, to be frank.

Change #2: Then, this week, on Monday, we found out that Bodie had MRSA and has to be in the hospital for at least 6-8 weeks on I.V. antibiotics, after which he can have his next scheduled surgery.

Change #3: Then, on Tuesday, Sierra's acting out at school really climaxed. We knew of a few incidents of her acting out recently, but truly had no idea the gravity of the situation until she was sent home from school, for the foreseeable future, on Tuesday. Absolutely heartbreaking for us on so many levels, not the least of which was that we had no idea how unhappy she has been recently at school. She has been at the same daycare since she was 3 months old and her entire world is wrapped up in the school. She has always loved her friends, her teachers, and her entire experience there. But clearly it's not the right place for her to be right now. We had to know that somehow the last 4 months were going to take their toll on her, and they have. She is desperately in need of "mommy time." So, now, instead of her going to school, she is going with me to the hospital and spending the day with me and Bodie in the CTICU. Not an ideal situation, to be sure, but we're doing what we can.

Have I mentioned that I'm so not good with change? Do you see why this week in particular has been rough on our little family? Ok, deep breath (I promise this post does get better - I'm getting to the better part).

So, Dusk and I have now come to the realization that there is NO WAY for our family to get through all of this (I mean seriously, have you heard of such bad luck?) without divine intervention. We have been praying all along as you all know, but now we're really going out there and admitting to all of you that the ONLY WAY our family is getting through this is God. It's all God. HE is the reason (the only reason) we can sleep at night and still have joy in our hearts amidst all of this craziness and uncertainty. HE is the reason we have hope for our future - for the future of our marriage, our children and our entire family. HE will get us through this - HE has already gotten us so far. HE has a plan for our family and we're going to wait patiently on HIS plan for our family. (See, I told you it got better, right?)

So, for now, even though (and I may have mentioned this already) I'm not good with change, we're celebrating in this opportunity to rely fully on God - and rejoicing in the small moments: realizing this is time I get to be there for my daughter in a way she truly needs it, understanding this is an opportunity for Sierra and Bodie to bond in a way they haven't been able to yet, and cherishing this opportunity to witness for the power and love of our Lord and Jesus Christ.

Oh, and here's a few pictures of our "family day" at the hospital today, when Daddy stopped by for lunch (the first time the 4 of us have been under the same roof in close to a month - clearly when I was praying last week for my entire family to be under the same roof, I needed to specify MY roof, not just any roof) (oh, and don't mind Bodie's red, gunky eyes - he has an MRSA infection in his eyes - of course he does, that's how we roll right now):



Monday, June 14, 2010

The good, the bad and the ugly


First off, the GOOD:
Bodie came off oxygen entirely Sunday morning and has been on room air since! No nasal canula or anything - YAY! And he is an eating machine - he hasn't eaten this well since before he had c-diff and paraflu! So, he's finally gaining weight again - go Bodie! Also, the immunologist stopped by today and said that although he's waiting for all the tests to come back, as far as he's concerned, the fact that Bodie's still alive and not on the vent after having had Paraflu tells him that his immune system is probably working just fine (scary way to put it, right?) And, Bodie's friend Addie that so many of you have been praying for WENT HOME TODAY! So, definitely lots of good to report today! Praise God!!!

Ok, Now to the BAD and the UGLY all in one:
Well, Bodie's blood infection turned out to be MRSA (medically resistant staff). The hospital's standard protocol for first-time MRSA break-outs is 6-8 weeks of I.V. antibiotics. Yes, you read that right. SUCKY. If Bodie were otherwise stable, they'd probably let him go home on the iv antibiotics and just teach us how to administer it. But Bodie has shown, if nothing else, that when he gets sick, he GETS SICK quickly. So, they're questioning whether he'd even be stable enough to go home before the next surgery. This wouldn't be such a big deal if they could do the surgery as we had tentatively planned, sometime in June/July. The problem is that Infectious Diseases may say he has to be completely done with the antibiotics before his next surgery (you don't want to go on bypass with an active infection since the body does all kinds of crazy stuff on bypass; so the question is whether his would be considered an active infection). In that case, we could be looking at being in the hospital another 9 weeks +. Yes, I may lose my mind if that ends up being the case...at the moment, they don't really know - Infectious Diseases will be working with cardiology over the next few days to figure out their recommended course of treatment.

As for Bodie being stable, he is clinically doing much better, but his BMP is still much higher than it should be (it started to fall but then jumped up again this morning) which means that his heart is just working harder than it should be. Likely due to his infection, but they also did a wean on one of his heart meds yesterday, Milrinone, and it could be in response to that. Either way, Bodie is still not quite where he should be and will be in the CTICU for a while as they figure all of this out.

So, you guessed it, we have LOTS of prayer requests tonight:
1. Pray that Bodie's BMP drops and we know his heart isn't working quite so hard.
2. Pray that the antibiotics are effective so that his blood cultures start coming back negative.
3. Pray that Bodie continues to eat like a madman and gain weight.
4. Pray that the Infectious Disease doctors and cardiologists determine that Bodie does NOT have to do a full course of 6-8 weeks of i.v. antibiotics; or, if they do, that they'll decide he's stable enough to do it at home.
5. Pray that Bodie doesn't catch anything else.
6. Pray for our family, especially Sierra. It breaks my heart that her whole world has changed so much and she doesn't get nearly the attention from mommy that she needs. She's having a rough time with the fact that this has now been going on for 4 months and there's really no end in sight. Pray that we would find more people who could sit with Bodie so I could spend more time at home with Sierra and distribute myself a little bit more evenly between the two kids.

Thanks!
Amy

Friday, June 11, 2010

An inspirational day

Today was truly an inspirational day - for two reasons:

1. Bodie got extubated!!! Despite battling a serious blood infection, he had his shortest intubation yet - 36 hours! Our little guy is such a fighter and we continue to be so amazed by his strength (well, ok, stubbornness) and determination. Here's a pic of the little guy, sleeping peacefully, post extubation:


2. We got to meet this woman and her husband:


She's beautiful, right? (You can see Bodie staring up at her adoringly - not that we can blame him!) Well, she's even more beautiful to us because of what she represents. Her name is Jeni Busta and she is a 24 year old HLHS survivor!!! She is one of the oldest HLHS survivors and has not yet needed a transplant! Like Bodie, she has a pacemaker. She and her amazingly supportive husband happened to be in the CTICU visiting another family and, of course, once word got out, every family with a hypoplast in the unit was lining up to talk to them! She is so positive and gave us such hope that Bodie can live a normal life. Her life has by no means been easy, but she is so happy and just seems so content with her life. With as unpredictable as Bodie's future is, it just meant more to us that I can say to see someone doing so well!

For prayer requests tonight, we have a few:
1. Pray that Bodie continues to tolerate the extubation so that they can wean him back off of oxygen at some point over the weekend (I'm sure he'd like to be on room air again and have that annoying nasal canula out of his nose).
2. They plan to restart feeds again tomorrow. This is always a big step for Bodie. Pray that he tolerates his feeds and is able to get back up to full feeds soon. Along the same lines, pray that his stamina increases so that he can eat more. (And pray that he can wait until tomorrow to start eating again - the poor guy was trying to eat just about anything he could today - his pacifier, his hands, the tubes, etc. - and getting more and more frustrated that he wasn't getting any milk out of them. The poor guy is starving!)

Thanks awesome prayer warriors!
Amy

Thursday, June 10, 2010

Bad Luck Bodie

Mommy, I don't feel so good...

Man, this poor kid just can't catch a break. Miracles? Sure, no problem. But the little stuff? Any infection within a 10 mile radius? He HAS to have it. It's like Sierra with a new pair of shoes -Bodie is just magnetically drawn to infections, I swear. So, it turns out he has a bacterial infection in his blood. Poor baby. :-( The good news is this explains the state he's in.

In short, Bodie started out yesterday great, eating really well. But throughout the day, he started eating less and generally acting fussier. By about 9:30 last night, he threw up a few times, didn't want to eat, got lethargic and started having a lot of trouble breathing. The nurse called the RRT (the same Rapid Response Team I called when Bodie was in such bad shape last time). They came, checked Bodie out and immediately prepped a room in the CTICU for him to go to. He, in typical Bodie fashion, was in really bad shape in a relatively short period of time. So, they intubated him to give his lungs a break (yes, poor baby is now back on the ventilator), started him on some Milrinone to give his heart a break, and put in a central line to start him prophylactically on antibiotics. His first blood gas was BAD. He was by no means in as bad of shape as he was when he came down to the CTICU with the c-diff, but he was not in good shape. Luckily, within an hour of starting the vent, Milrinone and giving him fluids, he was in MUCH better shape - and he's continued to improve since then. His blood gasses are now almost back to normal - praise God! They've also started weaning the vent, and so far he has been tolerating it like a champ (and I do have to say, he HATES being back on the vent - every chance he gets, he's trying to "self-extubate"; even when we strap his arms down, he just slowly wriggles down to the point where he has enough give in the restraints to get his little hands up to his face - and then he starts pulling on the tube again!)

They weren't sure why he decompensated so badly, but one theory was an infection of some sort. Luckily, that looks like that's exactly what it was (I say "luckily" since our other options were even worse - a viral infection, narrowing of the shunt or other heart issue, or just some serious heart failure). His blood cultured positive for a bacteria of some sort and the antibiotics they had already started treat it, which is a relief.

What they're still not sure of is why he keeps catching infections. I mean, besides the fact that he's in the hospital and that's what happens in hospitals. They ran tests on his cortisol levels today (to ensure that his body can mount a good defense against stress inducers when it has to) and have ordered an immune workup (to check his immune system to make sure something besides bad luck isn't happening). I'll be curious to see what they find. My thinking is that he had such a bad reaction to this latest infection because he was still weak and recovering from the c-diff and paraflu, but who knows...

So, yes, as always, he needs lots of prayer. Tonight, please pray that:
1. He continues to respond well to the vent weaning and can be extubated tomorrow or over the weekend.
2. Pray that his body heals quickly so that they can restart feeds soon!
3. Pray that they figure out why he has to catch everything possible.
4. Pray for peace and good sleep for Dusk and Amy, since the last few nights have been a bit rough.

I would also like to take a moment to give a huge shout out to my dear friend Joy, who had the misfortune last night of being on the "Bodie Snuggle Schedule" we've started to allow me to go home for a few hours in the evenings. Although Bodie did initially give her some sweet smiles, she was there alone as Bodie started decompensating and stayed by my side until he was stable in the CTICU. What she witnessed is hard for a heart mom who's used to this kind of stuff to go through, let alone another mom without a heart child. Bless her heart. Thank you Joy.

Back in the CTICU

Bodie started decompensating earlier this evening, another RRT was called and now he is back in the CTICU, once again intubated. They're putting in a central line right now. Please pray that they figure out, quickly, what is wrong - and that this stay is a short one!
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Tuesday, June 8, 2010

On the floor!

We are officially on the step-down floor now - one step closer to home! Yay!!! Bodie pulled out his ng tube this morning, and, since he had taken in way more calories than needed the last 2 days, they left it out!!! And they let us drop the 12am feed and said we can just do one feed (orally) during the night now. What a total answer to prayer!

So, as far as I understand it, this is what stands in our way of going home at the moment:
1. Feeding: Bodie needs to maintain an intake of at least 20oz by mouth a day. He's done closer to 30 in the past, but he's still a bit weak, so even 20 is a lot for him right now. Please pray that his stamina increases so that he can take more in at each feeding.

2. Sedation weaning: Bodie is on 2 small doses a day of Morphine and Adavan right now. Please pray that the pain team comes up with a realistic wean schedule and, more importantly, that Bodie tolerates the wean well.

3. Heart rate issues: Bodie has been having episodes of tachycardia (I think I spelled that wrong, but it's late - sorry), where his heart rate will jump to 190 or 200. He's always had very short (2-5 minute) episodes of this (they think it's related to the genetic issue), but the last few days they've lasted 25-30 minutes each time. If they decide to treat it, they'll probably put him on a beta blocker. Please pray that they determine how best to treat this.

Thanks as always!
Amy
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Monday, June 7, 2010

(Almost) getting a change in altitude

They keep trying to move us upstairs (from the CTICU on the 2nd floor to the step-down unit on the 6th floor), but they still don't have a bed available. Word is that we might get moved upstairs tomorrow, but we'll believe it when it happens! In the meantime, we're enjoying the hospitality of the CTICU and the fact that I can come home each night to give Sierra a sense of normalcy.

Bodie continues to improve, thankfully! His latest echo shows that his heart function is pretty much back to where it was prior to the infections (praise God!)!!! After the last time I posted, he had a few days of losing weight, but gained again yesterday, so we're hopeful that as he keeps increasing his feeds, he will be back on the path of continuing to gain weight. He's getting a little stronger each day and is taking more and more by mouth. He still gets 3 feeds overnight via his ng tube, so we're working toward him taking in more by mouth during the day so we can eliminate one of those feeds, and then change the other 2 to oral feeds. Once we can do that, as long as he can gain weight, we should be able to go home!!! Not sure when that will be - like everything else in this crazy journey of patience, it's all up to Bodie. But I'm sure it will be at least a few days before we have him doing full oral feeds, and then he'll have to gain for a few days before they'll release him, I'm sure. So, while we're definitely on the way home, it will likely be a little while still.

Tonight, please pray that Bodie increases his oral feeds SOON so that we can GO HOME!

Here's a few new pics of the little guy (who, by the way, has hit the cutest smiliest stage EVER!):

Checking himself out in the mirror (can you say narcissist, anyone?):
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And, a quick pic of the rest of us at my brother and sister-in-law's baby shower this weekend (they're expecting a baby boy in a month!), since we figure you should see us as well. I keep telling Bodie he's not the only game in town, but I'm not so sure he gets that yet... :-)

Friday, June 4, 2010

Slow and steady

Bodie is doing MUCH better! His cough is so much better that he's not even really desatting anymore with it. He's still weak, but he's steadily getting stronger and able to eat a bit more by mouth each day! YAY! He's gained weight the last 2 nights, so he's definitely getting back on track. He's now doing most of his feeds during the day by mouth and his nighttime feeds by ng tube. The plan is to slowly increase his feeds as his strength comes back and he's able to tolerate it. Once he's able to take everything by mouth (and gain weight doing so), we'll be able to go come and beef him up for just a bit before his next surgery! Praise God!!!

And he is so stinking happy! It looks like he's outgrown a lot of his newborn fussiness - now, he'll generally smile at anyone who looks in his direction:


Feeding with Gigi


Goofing off for mommy



Catching his smiles

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