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!!!!

One week....

So its down to just one week until Atticus' Fontan. Less than 7 days to go. We've had all our final visits from our therapists. We stopped Atticus' aspirin regiment a week ago. Only 3 days of work left for me. And Atticus has managed to catch a cough.

It seems like mostly sinuses/allergies. Plus with the recent heat wave, its made everything super dry. I took him to the doctor before the weekend, and she says his lungs sound good (for him). I also followed up with MUSC on Monday to get their opinion. They want me to follow up with the pediatrician again this Friday, just to be sure it still sounds the same, and that we still think its just sinus/allergy related, and then we'll decide if we're still on for July 11th.

I have so much to do, and its like watching sand run out if an hourglass. I feel like part of me wants to prep for a 2 week stay; part of me wants to prepare for another 6 month nightmare. Part of me wants to think I've gotten most things prepared, aside from some laundry and odds and ends; part of me is doing figures like an old accountant screaming, "Did you save enough for this?", "What about this expense?", while another part is an old, nagging mother going over a "to-do" list that looks like something out of a cartoon with NOTHING crossed off. Not to mention the part of me that wants to remain cool, calm and collected while the other part is an emotional madwoman.

To say this is all overwhelming is the understatement of the decade. I have known this day would come for over 3 years, but I'm still not ready. There are things I know I could have done to make myself feel better prepared. Then I try to remember I'm only human. But then, along comes this cough, and now I'm not even sure if we'll be able to have the Fontan on time. Its so frustrating.

And then I try to remember that God is continuing to work on my patience. That He has a plan for ALL things, and that its His timing, not mine. Please continue to keep us in your prayers, thoughts, and well wishes. Pray that Atticus will feel better soon, and that we'll be able to have his Fontan as scheduled. And feel free to throw one in for mine and Robbie's patience and peace of mind during this time. I'll try to update on Friday, one way or the other. Just remember, Keep on prayin'!

A long overdue update!

Hey everyone! I figured I was pretty overdue for an update on Atticus. He continues to get stronger every day, and is growing like a weed! He's about 3 feet tall, and hovering around 29-30 lbs. He's gotten really good at using his reverse walker. He can almost RUN when he uses it! He's able to maneuver it pretty well, and we've started letting him use it in public (versus using the stroller) since he can control it better and doesn't tire as easily. He's also even started to walk....totally unassisted!!! He's managed to take as many as 10 steps across the living room! Hooray!! He's also learned how to go up and down the stairs using the hand rail. He's doing so well, in fact, that his PT and I agree that she only needs to come once a month! (Yeah, there was a time when I NEVER thought that would happen!). He continues to amaze me!

Atticus is also getting better with his sign language. He's up to about 40 or so signs that he can do himself, and recognizes many more. He's even starting to string 2 signs together like "down please" or "Cookie Monster", etc. He's really bad about making up his own signs when he doesn't know the actual sign for a word. Lol! Learning sign language has also had the added bonus of helping with his OT because he's having to use his hands more.

Other than that, from a health standpoint, we're basically on a countdown until his Fontan in July. We had a check up with his cardiologist, Dr Williams, who said everything continues to look/sound good. We don't have to go back until after the Fontan. We also visited with Dr Brown, his pulmonologist, who said his lungs are sounding great. We've managed to wean him completely off Sildenafil! (Hooray for one less medicine!). We've also managed to completely wean Atticus off of his oxygen at night! He only really needs it occasionally, when he really over does it.

Thank you all for your continued prayers, support, and well wishes. God continues to make Atticus stronger all the time. He's making strides that I was never sure he would reach. As July draws nearer, I'll continue to ask everyone to keep us all in your prayers. I find my mind finding its way back to his impending surgery more and more often. There's just so much that makes my head spin, so much information to process, so many preparations to make, etc. I know that we're rapidly approaching the point where I'll no longer be able to keep this on the mental back burner, and I'll have to think about it in order to get ready to go down to Charleston. But the minute I start to think about his Fontan, the pain I'll be deciding to inflict upon him, the fact that he doesn't really understand what will be happening, what all this surgery mean for Atticus' chances of survival, etc it becomes so overwhelming that I just want to be sick to my stomach. I know that God has a plan for all things, and that He'll take care of all those things I worry about, but it doesn't mean I'm not afraid. I'm afraid that God may decide that these are my last days with Atticus. And the grief at the mere idea brings me to my knees. I don't like to think that way, but it also reminds me to treasure each moment I have right now with him. Even after almost 3 years of knowing that this day would eventually come, I just don't feel ready. Like I said, I'm in need of some extra prayers as well.

Anyone who knows me knows that I always try to find something positive in every situation, so I'll end this post with a little happier note. My mom took Atticus to the local park the other day to have some one-on-one time. They had a great time playing there (The park is brand new and made especially for disabled children.). While they were there, my mom said Atticus noticed a little blond haired girl around his age and signed "I love you" to her! Lol! What a little flirt! Thanks again for checking in on us, and as always, please...

Keep on prayin'!