Home Sweet Home

Hello Everyone!


Just wanted to let you know that we made it HOME!!!  I can hardly believe that we made it in and out of the hospital in exactly one week!  Atticus soared through his Fontan!  I am so thankful to Dr Bradley and all the awesome nurses at MUSC for the awesome care they gave to Atticus.  I'm thankful to all of you who prayed for Atticus during his open heart surgery and recovery.  I'm thankful for my wonderful sister and brother-in-law for opening their home to me.  And I'm thankful to God for all the ways He watched over us during this time.  Atticus is home continuing to heal and rest.  He was so happy to come home and see his brother and sisters.


I wanted to share one of my favorite moments with you all.  Shortly after my last post I knew we were being discharged, so I packed everything up while Atticus was taking a nap.  Once he woke up, he was ready to go back to the Atrium.  Robbie was almost there, so I told him that we were going to wait for Daddy.  He gave me the funniest look like, "Daddy isn't here."  But he was content to sit in the wagon for a few more minutes watching Signing Time.  We did this back and forth a few more times as I waited for Robbie to come walking into the unit.  Finally, Atticus was losing patience with me so I signed, "We're waiting for Daddy to go home."  He perked up a little, looking at me like, "Did you just say home?!"  As if right on cue, Robbie came walking into the unit.  Atticus ducked his head, threw up his arms, and had a sheepish grin on his face.  Robbie scooped him up, Atticus buried his face his Daddy's neck and started crying for joy.  His Daddy was there to take him home.  We made it home safely and soundly, but pretty late at night.  Atticus crawled straight into his bed, grinned, and went to sleep. 


Thanks for continuing to check in on us, and as always, keep on prayin'!

Atticus sees Daddy with the car! 

Post-Fontan Day 7

*yawn*. Hello everyone. We had a rather long night last night. Thankfully, Atticus was asleep by about 9:30PM.  I however, didn't get to sleep until much later because we have a new neighbor, which I have dubbed "Screaming Mimi".  It was one of those nights where I actually envied and was thankful for Atticus' deafness.  Then, Atticus woke up at 2:30AM because they had come in to check his vitals, and wouldn't go back to sleep until 4:15AM.  Then the nurse came back in to wake him up at 5:45AM to give more meds and to weigh him. Thankfully he was so tired he went pretty much straight back to sleep.  Just a very tiring night. 

But on the good news front, Atticus had his last chest tube removed today!!  (Strike up the Hallelujah Chorus!).  We had another set of chest x-rays afterwards so the doctors can make sure there's no build up of fluids in or around his heart and lungs. Which means one step closer to disch@rge!!

After his x-ray, we went downstairs to the Atrium to play for about 30 mins before they closed for lunch. He painted a picture, and actually got out of the wagon today to run around. I could tell he's feeling much better today sans chest tubes.  We then headed back upstairs where we played in our room blowing bubbles, played with Play-Doh, and our cars.  

Next, we had our "disch@rge echocardiogram" to again, make sure everything looked good, that our function was good, and to check for fluid build up.   Atticus is definitely over being in the hospital. He was pretty good during the echo, but he was ticked off by the end of it. So much so that he took a nap and is still sleeping. 

In the meantime, the words "h*me" and "disch@rge" are being thrown around pretty frequently!!  We even had the ladies from the pharmacy bring our meds to take with us!  I'm trying not to get overly excited, but its an understatement to say I'm ready to sleep in my own bed again. Please continue to pray for Atticus' healing and that a trip h*me is in the near future!  I'll update once we know for sure!!  Keep on prayin'!

Silly Atticus!  That's not your bed!

Up, walking and playing!

Post-Fontan Day 5 & 6

Greetings from Chucktown everyone!  We've had a pretty good few days here.  There were some ups and downs, but thankfully more ups than downs. 

Atticus woke up kinda cranky yesterday, but it was also time for his next dose of pain meds, so once those were in his system, he was a little more pleasant. He got a little nauseated with the beginning of breakfast after about 1/2 of an egg, but then managed to keep down a whole pancake, a few bites of yogurt, and some more apple juice.

After breakfast, we headed down to the Atrium to play for a little while. He played with the cars, some instruments, and then spotted a pretend phone, which was a hit for quite a while. We stayed until they closed for lunch, then we headed upstairs.  While we waited for them to bring his lunch tray, Atticus refused to get back into his bed, so I let him join me on my couch bed until his food came. Once it got there, Atticus managed to walk for the first time since Wednesday. He walked the 10 or 15 feet from the couch to his bed with just holding my hand loosely for stability.  His nurse also decided to wean of his oxygen since he had been on just .25L. Hooray for progress!!

Lunch was another round of nausea after he had eaten only a few bites, but he managed to then polish off a full bag of potato chips, 1/2 a bowl of mac n cheese, 1/2 a bag of mini chocolate chip cookies, and a few bites of chocolate pudding. (I know. Awesome diet for a heart patient, but at least he ate and kept it down!)  We had apparently had so much fun downstairs that he was completely exhausted and actually took a long nap (partially because I talked his nurses into leaving him alone instead of waking him up for vitals).

Once Atticus woke up, we played in his room for a bit.  I had gone to the gift shop downstairs and got him a "paint with water" book while he was sleeping to help keep him occupied during the times the Atrium is closed. Then we got a visit from a very special visitor.  Bristol, a spaniel mix and one of MUSC's "Hairy Heroes", came to visit Atticus!  He was super thrilled because he absolutely LOVES dogs.  The nurses put an extra blanket across the bottom of his bed so that she could lay in the bed with him. She stayed for about 20 minutes, and Atticus just hugged her and pet her.

After Bristol left, Atticus wanted to get out of the room. The Atrium hadn't quite reopened yet, so we ended up loading him in his wagon and just wondering the 7th and 8th floors of the hospital until it opened at 5PM.  We played there until 6PM when it was time to go upstairs for some meds...and a dressing change on his chest tubes.

Atticus was NOT happy with the dressing change. The chest tubes are really painful, and pulling medical tape off of them is the last thing he wanted to do. Atticus has a tendency to not breathe properly when he's crying really hard. So much so that another nurse (the one who monitors all his numbers at the nurses' station) ran into check on him because his oxygen saturation had dropped into the 50s!!  He was a deep shade of purple by the we finished and had to be put back on oxygen for a little while.

We went back downstairs to the playroom for a little while, but Atticus was still pretty cranky, so we didn't end up staying for long.  We went back to his room for dinner (which he just nibbled, but didn't get nauseated with at least!).  He ended up being put back on .25L of oxygen because his sats were running a little low. He was pretty fast asleep by 9PM, so I snuck off to wash some clothes. 

Today has been a busy day for Atticus.  After morning rounds, Atticus had one of his chest tubes AND the line in his neck removed!!  Hooray!   That means we're down to just one chest tube and some oxygen!  Way to go, Atticus!  This also meant that we had to go back downstairs for another chest x-ray. The doc came down a short while ago and said that there was just a little bit of fluid in his left lung where the tube had come out. They'll do another x-ray in the AM just to check on it. Please pray that this will resolve itself!

Atticus hasn't had much of an appetite today. He's been drinking plenty of fluids, but I've only managed to get 3/4 of a butter biscuit and a few bites of egg in him. He flat out refused to eat any lunch, even refusing the ice cream I bought him. I've ordered some dinner for him, so hopefully I can get more food in him. Please also pray that his appetite returns to stay, as that will play a factor in how soon we can get out of here.

We made a trip to the Atrium earlier today, had a visit from Aunt Di, and took another good nap this afternoon. The docs have also switched his pain meds from every 2 hours to "as needed".  He seems to be doing ok with the change, but its more important to try to stay ahead of his pain.  All in all, its been a good few days with plenty of steps in the right direction. We still have lots of healing to do, so please everyone, keep on prayin'!

 

Playing in the Atrium

The sweet dog that came to visit. 

A little Versed before our chest tube and neck line was removed. He was so loopy!

He was passed out while we waited for Radiology to come get us. Lol!

Post-Fontan Day 4

Hi all!  I realize it'll actually be Post-Fontan Day 5 by the time any of you get to read this (because its already almost midnight on Day 4), but we've had a very busy Sunday!  First, we made it 8D late yesterday!!!  Hooray!  Now I can actually stay in the hospital overnight with Atticus.  He was like a completely different kid the minute we got up here. He started smiling and giggling, and was actually happy!  A complete 180 from being in the PCICU.  Second, our heart buddy from www.mom2lo.com got to go home today!!  We are so thrilled for them!  He had his Fontan on the Friday before ours, and he has done amazingly well.  What a rockstar!

We've had a pretty good day here on 8D. It all started with breakfast...Atticus actually wanted some today!  Hooray!  He ate a whole egg, an almost whole bowl of cereal with whole milk, 3 bites of vanilla yogurt, and 1 bite of a blueberry muffin!  Can you tell its been since Tuesday night since he really ate anything?!  We managed to keep it down along with some apple juice. 

Before lunch, we had another awesome thing happen...Atticus got his center chest tube taken out!!  Oh Lord, you are too good to us!  That means he only has two chest tubes left to go. Yay!  Those are still draining though. The docs noticed a small pocket of fluid around Atticus' right lung, so I'm not expecting those out any time too soon. 

We next attempted some chicken strips and french fries for lunch. That didn't go as well as breakfast. Atticus managed to eat most of 1 chicken strip and a few fries before his lunch decided to make a grand reappearance. :(  I think it was too heavy on his little tummy. He did manage to keep down a few bites of vanilla pudding and half an ice cream bar, so that's progress, right? Lol.

Next, we finally got Atticus comfy in a pair of his own pajamas and headed down to the Atrium (aka the really awesome playroom).  Getting him down there is still a bit of an ordeal since he has chest tubes, the collection boxes attached to each tube, an oxygen tank, and the wireless monitor/leads that allow the nurses to track his O2 and heart rate, even when we're downstairs.  His little wagon was all loaded up!  But it was all worth it to see the smile on his face once we got there and he started playing with toys. He was so happy!  We stayed down there for the better part of an hour and a half; until he turned pale and was about to fall asleep sitting up. I told him we needed to head upstairs and he kept telling me "no" and that he wanted to play, but I wheeled him back upstairs and he didn't really try to fight me.

We also had Paw-paw and Grandma C come visit us today. They surprised Atticus in the playroom and brought him a sweet little plush Snoopy. Then they followed us upstairs for what was the only "bad" part of today.

Once we got back upstairs, Atticus had to have the dressing changed on the IV line in his neck. The dressing had started to peel off, which was bothering him and causing him to mess with it, and we definitely don't want that line to come out because it would mean having to get stuck with a needle over and over again everytime the nurses had to draw blood for his labs.  Not ideal.  Changing that dressing is a "sterile procedure", so Atticus had to wear a mask (which he hated) and ended up with 3 people holding him still so that his nurse could clean the site and change the bandages. And unfortunately, its not quick like putting on a new band-aid, so by the time it was all said and done, he was beet red and sweaty from struggling and crying the whole time. :(  But the good news was that he got a little Oxy with it, so he didn't stay mad for long!  Plus I crawled into his bed to cuddle him for a little bit, so that made him happy. 

After Paw-paw and Grandma C left later in the evening, Atticus and I just sat around watching some "Signing Time" and playing on the tablet. He never would take more than a 15 minute power nap, even though I could tell he was absolutely exhausted. (Just goes to show what a fighter he is!). So I ordered him some dinner, which he managed to keep down. (Meatloaf, mashed potatoes, and a brownie for dessert!). We watched some more TV, and he continued to refuse to fall asleep, so I turned off the TV and sat in a chair out of his direct line of sight so that he would go to sleep.  He finally passed out a little after 10PM. Whew!  They weren't kidding when they told me he would have more energy after the Fontan!  Lol!

All in all, it was a busy and productive day here on 8D. We still have a long way to go with healing before we can make it out of here though. Thank you all for continuing to check in on us. It means a lot. But mostly, just keep on prayin'!  (Its doing wonders!)  ;)

Our big room on 8D!

Our failed attempt at lunch. At least he felt like feeding himself!

 

He was so happy to get dressed because he knew that meant he was headed out!

All loaded up in the Atrium!

A wider view of the awesome playroom!

Hi there, Handsome!  I've missed that smile!

One exhausted little boy!

Post-Fontan Day 3

Hi all!  Sorry this update is running a little late. I thought I saved the draft I was working on earlier, but apparently not. So lets try this again...as a quick addition to yesterday, Atticus ended up having the IV in his right hand removed, his LV heart line removed, and the arterial line in his left leg removed. This is awesome because it means Atticus can start getting out of bed and moving around. It also means some cuddle time is in the very near future (as soon as he feels up to it!). 

The main goals for Atticus today are to get him moving around more (to help with the fluid in his chest and around his lungs to drain) and to get him to eat. Robbie managed to get him to eat a few goldfish crackers and a piece of chocolate today, along with some more apple juice.  Its extra important to get him to eat because we can't get his chest tubes out until he does.  We have to see if he'll be able to handle fat in his diet. Many post-Fontan kiddos have trouble with a milky discharge that drains from their chest tubes as result of their bodies not being able to process the fat found in foods. Pray that this not the case for Atticus.  Thankfully, it hasn't been an issue in any of his previous open heart surgeries, so I'm hoping it won't be a problem now. 

Another bit of good news is that there is talk of moving us to 8D!!  Hooooraaay!!  That's the step down unit for heart kiddos, and the next step in our journey to go h*me. (We don't spell out or say the "H" word until we're there...heart patient superstition. We don't want to jinx ourselves, lol!). This is awesome news!  Its also another reason why its so important to get Atticus to eat. They treat his pain with just Tylenol and Oxy on 8D, so he'll need food in his stomach to prevent him from getting nauseated.

Atticus seems to be in slightly better spirits today. I finally remembered to bring in his brother's stuffed "Froggy" from the car. His big brother sent it with us (because Atticus loves it and often steals it to sleep with) to "help Atticus feel better".  He's such a good brother!  :)  We played around with them earlier, and now Atticus is peacefully sleeping cuddled between Froggy and Cookie Monster.

On another note, Robbie and Baby H had to go back home today. :(  She turns 3 months old today. Pray that they have a safe and uneventful trip, and that we'll all be able to be together again soon.  This just means I'll be able to focus on Atticus more, since I won't be trading out with Robbie to nurse her.  But it stinks being seperated from my newborn. 

All in all we still have a lot of healing to do. I'm so thankful that we are continuing to move in the right direction. Please continue to keep us in your thoughts and prayers. I'll try to update again if we end up making it to 8D today. But in the meantime, just keep on prayin'!

Post-Fontan Day 2

Hi all!  Atticus is definitely NOT happy about being in the hospital. He keeps signing that he wants to get dressed, wants his shoes, and wants to go. He also wants me to be able to pick him up and cuddle him on my lap, which also isn't possible at the moment. But on a brighter note, Atticus should hopefully get some of his heart lines/wires out today (including his arterial line), which would let those cuddles be possible because he'd finally be allowed to get out of the bed.

Atticus has been kind of weepy and sad today. He's uncomfortable, and just doesn't want to be here. I managed to get a small smile out of him when I had his stuffed Cookie Monster pretend to eat all of his breakfast tray.  That also prompted him to get one tiny bite of egg and vanilla yogurt down with some more apple juice.

We've blown bubbles, read a kid's book on sign language, and watched some of the "Air Buddies" movies.  He mostly just wants to suck on his finger and hold his Cookie Monster as he watches the tablet. He'll turn to me, plead for me to pick him up, and then start crying when I tell him I can't yet.  Its days like today that break my heart and make me feel utterly powerless as his Mom. :(

The docs started him back on his Enalipril yesterday afternoon to hopefully keep his blood pressure under control. Its still been a little on the high side. His oxygen sats have been hanging out in the high 80s to low 90s. 

Atticus is currently resting peacefully, so I'm going to sneak off and eat some lunch with the hubs and nurse Baby H. Please continue to pray for Atticus to heal quickly, and that we can keep his spirits up. Please also pray that those lines can come out today so that Atti and Mommy can enjoy some cuddles soon!  Mostly, just keep on prayin'!

Not a happy heart patient!

But we finally got a little smile!

Post-Fontan Day 1

Hi all!  Sorry I didn't post anything on here yesterday after we had gotten to see Atticus for the first time since surgery. I'm sure you could imagine that we were pretty exhausted.  Dr B was really happy with the way everything went during surgery. In fact, the only hiccup that they had was trying to insert a foley (for urine) in Atticus. It just didn't want to go in, and it caused him to bleed a little. So they opted to go with a collection bag instead.  Dr B added, "But everything in his chest went fine!"  Lol. If there had to be a problem during surgery, I'm just thankful it was something that simple. 

But I have good news to update you with today!  Atticus was extubated at around 4am this morning!!  Yay!!  He's currently on about 1liter of oxygen, and his oxygen saturation is hanging out in the low 90s.  He looks so pink!!

He's also already started to wake up occasionally, and even taken a little water and apple juice so far. He's also had a little nausea, so I'm hoping the next time he wakes up, we can try to get him to eat a little bit of food.  His blood pressure has been a little high, so please pray they can get it better under control. 

He seems to handling his pain pretty well so far. He's mostly sleeping still at this point, but he hasn't needed lots of pain meds so far during the time he's been awake. He keeps telling me he wants his shoes, so he can go home. Silly boy.  He's even managed a few high fives and fist bumps for his nurse Evan today.  My little warrior!

His chest tubes are putting out fluid a little bit better than yesterday, but still not a large volume.  But thankfully enough to keep the doctors from being too concerned. He's also peeing well, and its cleared up, so good news on that front as well.

Well, Atticus is starting to wake up a little more, so I'm going to get a movie going for him on the tablet.  Please continue to keep us in your thoughts and prayers as we have a long road of healing ahead of us. 

6th Fontan update

6th update--finished up and should be at the unit in 10-15 mins. We'll be able to talk w Dr Bradley then. 

Thank you all for keeping us in your thoughts and prayers today. I'll update again after we speak with Dr Bradley and see Atticus. Keep on prayin'!

5th Fontan update

5th update--"hey there!  They are off heart lung bypass and moving along!  So far so good. Hopefully over to PCICU in an hour or so."  Yaaaaaay!!

Keep on prayin'!

4th Fontan update

4th update--"hey there!  All is going as planned, about 75% of the way there...all is well!"  Whoo hoo!!  Keep up the good work everyone, and keep on prayin'!!

3rd Fontan update!

3rd update--they are on heart lung bypass now and all is going well.  We'll have another update in an hour!

Fontan update #1 & 2

Cathy dropped by with the first update around 9:30am to say they were working on cutting through all Atticus' scar tissue. 

We just got the page for the second update which says: "Hey there. They are still working on scar tissue. Hope to be on heart-lung bypass with the next update. Sweet boy is very stable. Will send another update in an hour."

Keep on prayin' everyone!!

Fontan Day!!!

Well, its really happening. Atticus is having his Fontan today. I kept waiting to get a phone call telling us that we had to be bumped from surgery and would have to reschedule, just like it has ever other time we've had surgery. But the call never came. Its still happening today. 

We've checked in, made sure Atticus was comfortable-with Cookie Monster within reach, given him his pre-med to help him relax, given him countless kisses, and watched the surgeon wheel away towards the OR.  We've come to the PCICU waiting room (aka our second home), received our pager, and are waiting for the surgery updates to begin. 

Yet somehow it all still seems slightly surreal. It seems strange to be in this all too familiar setting once again. Its also like slipping back into old pair of shoes. Comfortable in its familiarity, but cracked, worn, and not ideal.

There are too many thoughts running through my head to be able to sufficiently put them into words. So I'll focus on the fact that God has planned out this day since before Atticus was even born, and THAT brings me comfort. I know that He is in control, and my fearful heart is made to beat more slowly. God has once again brought me to this place where He shows me that He is still in control. So join me, my friends out there in the land of the internet, and Keep on prayin'!  I'll update soon!

Pre-op Tuesday

So today was our pre-op before Atticus' Fontan.  Our morning started by checking in at 9AM.  We had the usual round of EKG, echocardiogram, blood labs, chest x-ray, and meetings with all the various doctors, surgeons, anthestiologist, and cardiologists.  Roughly 6 hours later, we were leaving the hospital for the last time before our big day.

Atticus handled everything pretty well. He's still not a fan of the EKG. Not at all. But thankfully he didn't fight them too much, so it was over quickly.  Atticus was a champ for his x-ray and echocardiogram though.  Baby H was with us too, and she did really well too. ;)

We have to check in at 5:30AM tomorrow morning. By the time Dr B gets started and we get out first text, it should be around 9-9:30AM. If all goes well, he should hopefully done with surgery and back in the PCICU between 3-5pm.  Please keep Atticus, Dr B, Robbie and I, and those involved in his care in your prayers. Not only for a smooth surgery, but for a smooth recovery as well.

I wish I could adequately describe the rollercoaster of emotions right now. Tomorrow is a day we knew would come for almost the 5 years. It like the end of a long chapter, yet somehow strangely unfamiliar at the same time. Its terrifying and comforting in a odd way too. But its also heart breaking. To save my son, I have to willingly let the surgeons break his sternum and stop his heart.  I have to trust a group of people to fight for my son as much as I would.  Its nauseating.

I know that God has a plan for Atticus. Please pray that God's plan allows for the surgery to be successful, and for Atticus to heal quickly.  Please also pray for strength for Robbie and I. These surgeries never seem to get easier.  I'll try to post quick updates as we get them tomorrow. Thanks in advance, and as always (and especially now!), Keep on prayin'!