Questions And Answers

Ok. So today we opened up our Facebook status for questions related to David. I hope this answers them. If not, just ask!

The fluid they found around David's heart was actually a large blood clot. Within this clot, they found bacteria which turned out to be MRSA (methicillin-resistant Staphylococcus Aureus - or a staph infection that is resistant to the basic antibiotics). I know that there are many horror stories about this infection - it's not called a superbug for nothing. However, we are not too worried b/c when they first thought an infection might be present, they pulled out the big guns. They gave him an antibiotic (vancomycin) that is so strong it's actually semi-toxic. It's hard on your kidneys, which was our worry since we've had trouble with them this go around. There are different strains of MRSA that are sensitive to different treatments. It takes a few days for the cultures to come back and tell us which strain he has. Luckily, it's a strain that can be treated with a drug called clindamycin. This is much less toxic to his little body. It also comes in a form that he can take by mouth. Meaning we don't need to stay in the hospital until treatment is done (approx 4-8 weeks). Once this treatment is done, David shouldn't have to be on a lifetime regieme of meds for MRSA.

Because of the infectious nature of MRSA, we are asking that no visitors come to the hospital at this time. We're in a quarantine of sorts with gowns and gloves and such. We don't want to put anyone else at risk of contracting MRSA.

As of right now, we're not sure how long we'll be here. He's improving, but apparently he's not quite ready to leave. I guess he wanted to see his weekend nurses again! We have to wean him off the oxygen and keep his heart rate and blood pressure under control. It's a dance we're doing with meds and David's stats.

People have asked what we need. Honestly, we have been so blessed already! We don't really need anything. We've received gift baskets of food and things that we're sharing with the staff and still have 3 giant bags full! What we really need are your prayers. I know we ask for them a lot, but they are a huge reason we are still able to function! So, keep 'em coming! For those who like to pray for specifics, we could use healing in his incisions, healing from MRSA, continued improvement in his lungs, excess fluid to leave his body, and his physical abilities to return (sitting up, walking, etc) after being in a bed for 16 days.

As far as Drew and I are concerned, we're doing okay. We're tired and ready to be home. We're blessed to have the best, sweetest, strongest, most courageous little boy ever. We rest when we can and lean on each other when we need to. We're lucky that Drew's mom has the space and compassion to keep our dogs at her house and take care of them while we're up here. Our families have been bringing us meals so we don't have to eat at McDonalds 3x/day! And our awesome friend, Jamie, is watching our house, getting our mail, paying our bills, and eating our cookies! :-)

David has started to get back to his normal self. We watched most of Sesame Street this morning. He's watched Elmo and P&F on Netflix & YouTube. We even read part of a book (Grover is the monster at the end of the book, btw).

Well, I think that covers it. If there's something I missed, I'll have to answer tomorrow. Right now, D's asleep. So we will be too!

A Brand New Week

Today starts a brand new week. One that will hopefully be more positive than last week. Since the last post, so much has happened.

On Thursday, David was extubated. He was doing okay and he downed pedialyte, so on Friday we decided it was time to try Pediasure. He ate about 4 ounces and got a little agitated. We thought he was still hungry, so we gave him more. All of a sudden, his numbers dropped out. It turns out one of his lungs had collapsed and he aspirated some Pediasure. They had to reintubate him to be sure he was getting the oxygen he needed. It was scary just sitting back watching the docs and nurses work on him. But knowing how great everyone at Kosair is made me feel a little better. After a small moment of worry - okay a major breakdown - we gathered ourselves and waited to hear what the docs would say.

The new plan was to "not rock the boat" and to let him rest and heal up a bit. The last 3 days have been good. He's slept a lot, his lungs have much less fluid in them, and he's breathing more on his own. He's gained 3 pounds since we got here. So much fluid! But, we asked for prayers for pee, and they have been answered. He's been negative (more fluid coming out than going in) for the past couple days! That's what we want to see! However, they are a little worried about his kidneys - they aren't working as well as they'd like. Now that his heart is working like it should, they should also improve. The nephrologist (kidney doctor) says that right now the receptors in his kidneys are sad. For some reason, I love that description. So now we want happy kidneys that produce good pee! :-)

The surgeon said he likes how his heart looks. It's working like it should and his numbers are looking great!

The plan for today is to let him continue to rest. They've started him back on Pediasure via a feeding tube. They're reducing some meds and want to extubate (for good) tomorrow at the latest!

We would like for everyone to know how much we appreciate your good thoughts, prayers, and support for us. We wouldn't have made it through without you!

Thursday Afternoon Update

One of the joys of open heart surgery in babies, and I guess for anyone but just knowing our context, is that no one follows an exact script.  They have an expected road but every baby tends to walk their own unique way.  As always David is doing things on his terms in his way and he has decided that it is going to be a little bit slower than people would like including mom and dad and his family!

The doctors really want to get him extubated (I'm sure I spelled this wrong but off the breathing machine is what I mean) as quickly as possible, in fact many times they do that before they leave the operating room.  David threw them a curveball with some wacky numbers and wanted to wait until this morning.  Well this morning he decided to throw them another fun number or two so they are now waiting until this afternoon as they try to balance his heart rate, body temperature, blood pressure, air flow, pulse ox, and cvp numbers.  The fun part is the medicines usually have a good effect on one and a negative on another so they have been playing the balancing game really well. It is absolutely amazing to see doctors and nurses at work, the people at Kosair's and I'm sure many other places do such a good job communicating to each other as well as to us what's going on.

David is also slowly starting to wake up so they are having to manage pain as much as they can as well as his anger at the breathing tube.  In fact as I type this Nicole had to jump up to keep him from trying to pull it our himself. We had to remind him that's what we are paying the nice doctor so much money to do (or at least our insurance is)

So we are kind of in a holding pattern right now, David has 3 chest tubes, a g tube that is draining stuff off his stomach. He's on a water pad that heats up or cools down according to what his body is doing. He has 13 different pumps to give him medicine and a whole lot of lines in case they have to push anything else. Hopefully by the end of the day we will have him awake a little bit more to breathe on his own and to cough and start getting that going as well as starting to get some of the fluid that they have pumped into him off of him.

Thank you all for your prayers and concerns.  We have felt all the love and we believe David has as well.  The next couple of days will be a little bit slower then yesterday was but that is a good thing. Just keep praying that he slowly gets better and we rest up some.  Thanks and God Bless

-Drew

Tomorrow Is The Day...

So tomorrow is David's surgery. They take him back at noon and should start a little after 1. We would very much appreciate your thoughts and prayers for the doctors, nurses, and all those taking care of David tomorrow. Also for peace of mind for us as we sit and wait for them to come out and tell us everything is fine. The docs expect him to be in the hospital from 4-7 days. We're hoping for the shorter end of that range. :-)

The last few days have been wonderful just spending as much time with him as we can while he's happy. It'll be a little while before he gets totally back to his normal, sweet, happy self.

We want to thank everyone for their love, thoughts, and prayers as we've prepared for this (hopefully) last surgery. We could not have made it without your support!

I know this is short, but I'm going to try to relax and get some sleep before we hit the ground running tomorrow. Stay tuned for an update after surgery. If you'd like the play-by-play, be sure to check our facebook and twitter accounts.

Night all!