Wednesday, June 30, 2010
Monday, June 28, 2010
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:
Me getting in on the snuggling action:
CONGRATULATIONS Matt and Val! We could not be more excited for you!!!
Sunday, June 27, 2010
Friday, June 25, 2010
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.
Thursday, June 24, 2010
Wednesday, June 23, 2010
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'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!
Monday, June 21, 2010
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
Thursday, June 17, 2010
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
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.
Friday, June 11, 2010
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!
Thursday, June 10, 2010
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.
Sent from my Verizon Wireless BlackBerry
Tuesday, June 8, 2010
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!
Sent from my Verizon Wireless BlackBerry
Monday, June 7, 2010
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!):
Friday, June 4, 2010
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