So much to update!!

Wow. I just realized my last post was a while ago, and I have so many things to update everyone on. First, to pick up where my last post ended, we found out that Atticus had indeed gotten a Staph infection in the wound, but thankfully, it was one of the most mild forms. (Thank you, Lord, for no MRSA!!). We were able to switch to an oral antibiotic, and they sent us home with that, wound gel, lots of gauze, and medical tape. We were able to email Dr Bradley's office with a photo progression of his healing so that we didn't have to take the long trip to MUSC each week. You have to love technology sometimes!  Atticus is a slow healer, so its taken the better part of 3 months for it to be completely healed.  He just has a red spot where the wound was that will fade over time. I'm just thankful to be done "spackling" his wound with wound gel twice a day!! Lol!

Next, we were scheduled for Atticus' pre-Fontan Cath in mid-July. Due to some emergency cases, we ended up being bumped back to July 22nd. Everything went smoothly, and Atticus was even discharged later that night. Dr Bandisoe did end up having to "coil off" some extra blood vessels during the procedure, but apparently, that's pretty normal for single ventricle kids.  According to her explanation (and I am paraphrasing), post-Glenn kids tend to regrow these blood vessels from the aorta towards the pulmonary arteries (kind of like the BT Shunt in the Norwood Procedure), which they obviously don't need. So they "coil off" the extra blood vessels. MUSC is actually conducting a study right now to try to understand 1) why the kids grow these extra vessels, and 2) what effect (if any) coiling off these vessels (because some are large, some are small) has in the long term versus not coiling them.  It was pretty interesting. I'd love to know what they conclude when the study is finished.  But back to Atticus, Dr Bandisoe was really pleased with all of his numbers and recommended him as a good candidate for the Fontan. (Thanks again, Lord!). She hadn't seen Atticus in the Cath Lab since before his Tricuspid Valve repair surgery, so she was also really impressed with how great the valve looked now.

We finally got a call yesterday from Dr Bradley himself. (I honestly think that was a first. Usually someone from his office calls, and we speak with him in person mostly.)  He called personally though, because he had some concerns and really wanted to delay Atticus' Fontan a little while longer. His main concern was that he felt that Atticus was still too small for the surgery. (Atticus is only up to 30lbs and about 37 inches tall.)  The magic number for them is about 33lbs. Dr Bradley said he'd also like for him to be at least a year out from his last surgery.  I said that waiting was ok with me. I'd actually just read an article which suggested that when these kids wait longer for their Fontan, it seems to have less of an impact on their livers.  So we agreed to wait until after April of next year. Which brings us to today. Today we got the call from his office and tentatively set a date for May 14, 2014, for Atticus' Fontan.  In a way, its kind of a relief to finally have a date set, and for it to be so far in the future.  Because I also have another update....

Atticus is going to be a big brother!  That's right. Baby #4 is due to make an appearance around February 21, 2014. While we're super excited about the new baby, there's also a whole other range of emotions that come along with this news. The most obvious concern right now is to make sure Baby #4 is healthy. I'll have an in depth sonogram (much like the one I had with Atticus to confirm his condition) around the 22-24 week mark. I'm at 14 weeks right now. So please keep us in your prayers that this new addition will be 100% healthy.  The other major concern is that I'm going to have a very newborn when it comes time for Atticus' surgery. Part of me was hoping that his surgery would happen while I was still pregnant so that I wouldn't have to deal with that situation, but God's timing is perfect in all things. Who knows what that level of stress would do to this new baby?  I'll just trust that He has it all under control.

So back to Atticus...I can't believe my little boy is almost 4 years old!!  He's making such huge strides in his signing vocabulary, in stringing signs together, learning the alphabet, and even finally starting to sign numbers!  Its amazing to watch him blossom. Especially in these little "growth spurts" of understanding. Its so awesome to see him be able to better and more easily express himself.

Atticus has had a pretty unexciting summer, aside from the Cath. We celebrated Sandy's birthday at a nearby water park, and it was a lot of fun. It was unseasonably cold that day, so we'd have to force Atticus out of the water after 45 mins because his lips would be a deep purple.  We'd take turns taking him over to warm up, then back in he'd go for another 45 mins.

I think that pretty much catches everyone up with the latest Atticus news. He continues to be a blessing in our lives.  Its pretty late here, but I find that when everyone is in bed, its easier to make a post uninterrupted!  Thank you all for continuing to keep up with his progress, especially since I'm so awful at making regular updates, lol!  And as always, keep on prayin'!  

A little set back

Hello everyone!

I know, I know...you're in shock.  Another update already?  Yes, unfortunately, Atticus has had a little set back in the healing process.  A few days ago, I noticed that Atticus' wound had gotten a little "weepy".  Not one to be an alarmist, I covered it with some gauze and taped it up in order to keep it dry so that it could continue to heal.  On Monday, I went to change his gauze, and saw something pretty awful. Between the two stitches,  where Dr Bradley had mentioned the skin was thin due to the previous chest wire/lump, the skin had literally torn leaving a small hole in Atticus' chest roughly the size of a pencil eraser.  I'm not 100% sure how it happened.  I think it was a combination of the 2 stitches pulling in opposite directions as they healed, the surgical glue pulling on the site of thin skin as it flaked off, and/or the skin "collapsed" as it healed because there was a literal cavity under it where the granulated tissue had been before they removed it.  I called down to Dr B's office, explained what was going on, and sent them some pictures of the site.  They quickly called back after seeing the photos and asked how fast I could get Atticus to Charleston. *sigh*

Atticus and I were on the road after a few hours, after I had packed us up and Dad had a chance to run to the grocery store to stock up for him and the older two kiddos, since we didn't know how long we'd be gone.  We arrived at MUSC a little after 7PM, and began the check-in process.

Thankfully, Atticus was admitted to the "step-down" unit so I can stay in the room with him (versus the PCICU, where I can't).  The doctors came and took a culture sample from the hole in his chest to test for infection.  Then we had blood drawn, an IV placed, an EKG, and antibiotics started.  They covered his wound with some dry gauze, which made me feel a little better since that's exactly what I had done.  It was roughly 2AM by the time everything was done, so Atticus and I were beyond exhausted.

Tuesday morning, Dr Bradley finally had a chance to come assess the wound.  The good news was that it didn't look like Atticus would need another surgery, which meant he could finally eat again.  Yay!  The bad news was that we would have to stay here for a while, so they could watch it heal, and wait on the results from the culture.  I asked how long he thought we would be here, and Dr B replied, "At least 5 days to a week."  Yikes!  That was not what I expected, but I also understand why we need to stay.  For once, my over packing will prove useful!  Later that day, we received a little more good news that the initial blood work didn't show signs of infection.

That leads to today.  Atticus has thankfully remained pleasant and energetic throughout everything.  The doctors rounded this morning, and that's when we got a little more bad news...the initial culture results showed signs of a Staph infection.  (Noooooo!)  They still weren't exactly sure which kind; the culture needs to continue to grow some more, but I heard "possible Cellulitus" being used.  We're still waiting on Dr Bradley's assessment today because he's been in a surgery all morning.  I'm hoping that since we had already started antibiotics, we hopefully got a jump start on fighting off this infection.

On a slightly brighter note, the other doctors are all really happy with the way the wound is healing, that Atticus hasn't come down with a fever, and that he remains so energetic.  We've still got a lot of healing to do.  I'll continue to update as we find out more about what's going on.  In the meantime, I'm asking everyone to continue to keep us in your prayers!  All prayers, well wishes, happy thoughts, etc are welcomed at this point.  Thankfully God continues to provide for everything we need through way of awesome friends, family, and a dedicated team of doctors and nurses.  I'll leave off for now with a picture of Atticus playing with an awesome light up sword given to him by the folks in the Children's Atrium, since he can't go down there to play right now because of the infection.  As always, keep on prayin'!!

A "bump" in the road, and good news

I'll go ahead and apologize for the length of this post. We've had a lot of things happen in the past few days, so there's a lot to cover.

About a week ago, I noticed that Atticus had a strange, soft lump near the bottom of his chest scar. His sternum tends to stick out a little anyway (which can be normal for these little guys), but this was something different. It felt like a cyst, and was slightly smaller/flatter than a golf ball. I tend not to be an alarmist, so I put the word out to my fellow Heart Mamas to see if anyone had a little one with something similar. A few other moms mentioned that their kids had benign cysts like I was describing, and they just needed to be drained. It made me feel better, but I still made plans mentally to call his pediatrician on the following Monday (it was late Friday evening).

Then on Saturday morning, I noticed the lump began to look red/purplish and irritated. And that's also when I noticed the small hard lump in the center of the squishy lump. And that's when I decided to call the emergency room to see if they thought we should come in, or wait until Monday. They said as long as he wasn't running a fever, the site wasn't hot to the touch, and he wasn't nauseated, that we should be ok until Monday.

Monday seemed to take forever! We went first thing that morning to our pediatrician's office. You could see the surprise in their eyes when they saw the lump. It was looking pretty ugly. Atticus' pediatrician said what I had feared. He thought it was a loose chest wire. He told me to make an immediate follow-up with Dr Bradley (Atticus' heart surgeon), because no matter what was causing the lump, Dr B was going to have to be the one to correct it.

So after a phone call to Dr Bradley's office, we had an appointment the next day, Tuesday. Yay. Another trip across the state. But it was a good thing we went. After an x-ray, echocardiogram, and EKG, they determined that Atticus did indeed have a "popped" chest wire that was sticking straight out. The lump was granulated tissue surrounding the wire (the body's way of defending itself from the irritant). We were then scheduled for surgery on Wednesday to remove the bottom 2 chest wires and the excess tissue.

On a really great note (pre-tissue warning!), I also decided to talk with the Peds Surgery about Atticus' G-tube while we were down there. Its been about 6 months since we've had to use it. He's been eating and drinking and taking his medicine orally with no problems. After meeting them, they agreed, and Atticus is now G-TUBE FREE!!!! That's right! I said NO G-TUBE!! Hooray!!! It is such an awesome feeling to be rid of it! After he had it removed, and I was carrying him out to the car, I realized that it was the first time in his entire life (3 years, 6 months, and 11 days) that I had held him with absolutely no medical equipment attached to him. No IVs, no sensors, no ventilators...no G-tube. *choke*. God continues to bless us greatly, even amongst our trials!!

I decided then, that we deserved a walk on the beach after such a long day. Thankfully, my older sister lives in Charleston, about 5 mins away from the hospital. So while we waited on her to get off work, Atticus and I spent about an hour playing on the Isle of Palms. He had a blast and thoroughly tired himself out. Then we went to my sister's house to spend the night and await surgery the next day.

Atticus' surgery was scheduled for 1pm. We had to check in by 9:30am, just in case they could squeeze us in earlier. By 10:30AM, Atticus was having a full on tantrum in the floor of the waiting room because I told him he couldn't have anything to eat or drink. He was ripping through the diaper bag (which normally has some sort of snack) and frantically signing "more food, cup, hungry, and please". I was not looking forward to the next few hours. Then they called us back to the Pediatric Holding Area where there were plenty of toys to distract him. And by 11:00AM, it was like a completely different child! He didn't ask for anything once as he happily played for the next few hours. (God bless you, whoever you are, for donating those toys...they were a life saver!!). At around 1:30PM, they wheeled him back for surgery.

Thankfully, the procedure only lasted about an hour, so by 2:30PM, Atticus was in the PACU recovering. Dr Bradley said that everything had gone smoothly. They had removed the bottom 2 chest wires and the granulated tissue surrounding them. The skin over the lump was stretched pretty thin, but he'd taken care of that too. While I waited for him to wake up from the anesthesia, I went to pick up his prescription for pain...which took forever. He had started to wake up by the time I got back. After a little nausea from the anesthesia, we were discharged and on the way home by 6:45PM! That's our shortest stay yet!!

He was starting to feel better yesterday, although he did some extra cuddling and took an extra long nap. Today, he's been his usual Wild Man self. We had a follow-up with his cardiologist, Dr Williams, today. He said that everything looked great, and that he would go ahead and file the paperwork to get Atticus's Pre-Fontan work-up scheduled. *sigh*. From one surgery onto the next. At least that won't be until July.

So, as you can see, its been a busy week here for us. An unexpected surgery, but also saying "Good-bye" to the G-tube. God continues to bless us with great doctors, nurses, friends and family. Atticus has a lot of healing to do before July, so please "Keep on prayin'!"

Its been too long...

It's been too long since my last update, but thankfully, its because life has been pretty routine around here. Eating, therapies, check-ups, and lots of playing. We've had a few pieces of excitement though, so I thought it was time.

First, as of just a few days ago....we are officially free from all oxygen equipment in the house!!! No more air tanks and no more oxygen concentrator (aka "Darth Vader")!! Atticus has been off oxygen for a while now, but to have the home healthcare company finally come pick up all their equipment, kinda makes me feel like someone took the safety net away. Its exciting, but just a little scary, in a good way. It makes me pause and reflect on how far this little guy has come in the last 3 years. :)

Another positive note is that we're working towards being totally G-tube free! Atticus is eating and taking medicine 100% orally now! Yay! We have to go at least 6 months without using it to be able to remove it though. This is a really big step. The idea of NOT having it makes me scared and excited. With a G-tube, I never really had to worry about him getting dehydrated if he was sick, or about him refusing to take medicine. I haven't had to worry if he's getting enough calories/nutrition. But not having the G-tube makes me so excited because its such a big step towards being able to do normal kid stuff like spending the night at Grandma's, or me not having to cringe when he slides on his tummy off of the bed. It'll also be the first time I'll get to hold my son and have him be 100% completely, totally free from all medical equipment. No ventilators, no oxygen, no IVs, no feeding tube....nothing. And that makes me so excited, the mere thought almost brings me to tears. It is such a simple thing, but it will mean so much to me. I'm just not sure if the docs will want us to have it removed before his next surgery though. Guess we'll just have to wait and see what God has planned.

Atticus is continuing to makes strides across the board. He's learning more and more signs, and getting better about using them to communicate. He's getting pretty good at walking, and can almost run! He's also gotten pretty good at climbing things too now, at cost to my sanity. ;). He loves to play with cars, blocks, puzzles, etc. His docs are all happy with his progress so far, and we're just continuing to wait until he's big enough for his Fontan. Thanks for continuing to keep us in your thoughts and prayers. As always, keep on prayin'!

My big boy is 3!!

Today is Atticus' birthday!! I've really been slack on here lately, and for that I apologize. I'll give a quick summary, and then return to the focus of this post, which is today!

Atticus was discharged from the hospital 5 days after surgery! That's right...5 DAYS!! He had a great recovery and was back to his normal self within a few weeks. Immediately after surgery, he was pretty weak and frail. It reminded of just how far we've come in the last few years. I also understand why the surgeons want him to be a little heavier before his Fontan. Atticus lost about 2.5 lbs during his stay. That doesn't seem like a lot, but when he started at about 28 lbs...that equals about 10% of his total body weight. He was so skinny. But we've managed to fatten him back up nicely. ;) Still working towards 30 lbs though.

He's continuing to make strides physically. He can run with his walker, and had gotten pretty good at walking without it. He's up to a sign language vocabulary of about 50 signs. He's even starting to string 2 signs together!

Atticus had a great day today. Its hard to believe he's already 3 years old!! We played all morning, went to the park after a nice long nap, and then came home for cake and presents. He started getting the hang of opening his presents, and then kept signing "more" for the next one. Lol!

Thank you all for continuing to keep up with us over these past three years. Your comments, prayers, calls, etc have meant so much. As always, keep on prayin'!

Post surgery update

Thank you to everyone who kept us in your thoughts and prayers yesterday. Atticus did great during his surgery. Dr Bradley managed to perform the Tricuspid Valve repair. The gradient in his aorta turned out to not be as bad as they thought, so he didn't have to do anything about it.

Atticus has been recovering like a champion! They were able to extubate him at 3AM this morning, and have begun to wean down some of his medicines. The function of the valve has looked great on his echocardiograms so far. Please continue to pray that the repair stays repaired, and that we won't have to worry about a mechanical valve.

They're keeping him pretty sedated for now. He'll wake up for a few mins, give us a weak smile, feel around for his Cookie Monster, and go back to sleep. The only problem he's having so far is that he is "eating through" platelets again. So please also continue to pray that he can keep these numbers up.

The game plan for today is to keep him comfortable, mostly sedated, and to try to wean him down to just Milrinone. We're so thankful for the team of doctors and nurses here that are working around the clock to take care of our little fighter! As always, keep on prayin'!!

A change of plans

Well, its been a busy few weeks, and a lot has happened, so I'll do my best to update.

Atticus' original surgery date was bumped back from July 11th to today, July 20th. They had a few emergency cases come in that week, so we got rescheduled. We came down yesterday to MUSC for Atticus' pre-op work up, only to receive more news that floored us.

There has been another change in plans for surgery for Atticus. He won't be having his Fontan procedure today as we originally planned. Instead, Dr Bradley has decided to attempt to repair Atticus' Tricuspid Valve as well as a narrowing in his aorta. He decided that these procedures needed to take precedent over the Fontan, which has now been delayed for at least a year.

We were stunned by the news yesterday. I thought this was going to be attempted at the same time as the Fontan (because that was the plan in January), and I'm not quite sure what exactly Dr Bradley saw in the pre-op work up that changed his mind, but I have to trust his judgement that trying to do both procedures at once would be too much on Atticus' heart. Its frustrating to get yourself prepared for something like this, only to thrown a major curveball. But Atticus has never been good at doing anything "normal" when it comes to open heart surgery, lol.

Although I'm disappointed that this means that we will still have another open heart surgery in the future, I have to trust that this too is all part of God's plan for Atticus. I know that He is always in control, even when I feel helpless. Please continue to keep us in your prayers today as Atticus is already in the OR, waiting for surgery to begin. Pray for Atticus, those involved in his care, for strength for Robbie and I as we deal with these changes, and wisdom to make the right decisions. I'll update later today as surgery progresses. Just Keep on Praying!!!!