We Need YOUR Help!!!

Friends and family, please help us reach our goal of nationally recognizing February 7-14 as Congenital Heart Defect Awareness Week! This will be a HUGE step forward in raising awareness, and awareness leads to funding, and funding leads to new and innovative TREATMENTS for Congenital Heart Defects -- like Chase's half a heart.

It literally takes less than a minute to electronically sign this petition and confirm your signature in the email you will receive. PLEASE share this with your friends!!! 

Please click here to sign the petition!

Thank you for doing your part to help raise awareness and fund the treatment of Congenital Heart Defects!!!

A Time to Reflect

Hello?

Is anyone out there??

It's been over 2 months since my last post. Obviously homeschooling is a crazy full-time endeavor because I haven had a spare second to myself these past few months -- much less any free time to blog!! I'll give a major update soon (spoiler alert: things are great!), but for now, as I'm deep in the throes of preparing for Chase's FIFTH birthday, I'm letting myself be consumed with the nostalgia of his birth.

Can you believe that??

FIVE YEARS.

It seems like so long ago, yet feels like yesterday. I looked back on the blog to see what I was thinking and feeling 3 days before Chase's arrival, and wanted to share those thoughts again today as I reflect on all we've been through and how very blessed we are.

More to come soon, I promise.

October 24, 2009

OhMyGoodness.

I'm truly having a hard time believing the time is almost here!

Today is SATURDAY.

I'm going to be admitted to the hospital TOMORROW.

Chase will be here on MONDAY.

It's all so surreal! I am happy to report that I finally got around to packing my hospital bag today. I guess that's part of what makes an induction so convenient -- I can plan accordingly. And it's no surprise to me that Chase hasn't shown any signs of making an early debut. But now that the bag is packed and I'll be heading to the hospital in less than 24 hours, I think it's time for it to finally settle in that I'm getting ready to have a baby!

Although the future is VERY scary to me and I fear for my son's health and survival in the coming days, I know that ultimately we are all in God's hands and that He has a perfect plan for my family. I'm not at all loving that I will have ZERO control over our circumstances. I'm not loving the fact that I most likely will not be able to hold my son for the first time until the night before his surgery, which very well might not be scheduled for 7 or more days after he's born. I'm not loving being 3-1/2 hours from home -- from our friends, our family, the house we call home. It's really weird to prepare to go to the hospital to give birth to a baby that you know you won't be bringing home with you anytime soon. I almost feel like I'm just going in for a "procedure" of some kind, and then a few months later, I'll get to go back and pick up a baby to bring home with me. It's so strange! I've never felt anything like this before. But I'm truly anticipating that God will do wonderful things over the next several weeks and I'm so grateful I get to witness His work first-hand!

Five Years Later

FIVE YEARS AGO TODAY.

It seems like a lifetime ago, yet I can recall each and every detail so vividly and clearly.

We weren't expecting it. We certainly didn't ask for it. We never dreamed it would become our reality.

And yet, there we were. We found ourselves in a Perinatologist's office and were awaiting the official results of the high-risk ultrasound we just completed on our unborn baby boy -- our first son -- our sweet Chase.

There are no words to express how it feels to hear the child you are carrying inside you has a heart defect that is fatal without a series of invasive treatments beginning immediately following his birth.

There are no words to express how it feels to have the joy and expectation of your child's healthy future so suddenly ripped from your heart.

There are no words to express how it feels to fear leaving the hospital with empty arms and a broken heart rather than with your new bundle of joy.

There are no words to express how it feels to become a "Heart Mom." But that's exactly what I became that day. And now, exactly five years later, I wouldn't trade a moment of it for the world! Of course I wish my son had been born healthy, but God---in His infinite wisdom---knew that we were the perfect parents for Chase, and we have been blessed beyond measure to see Him working right in front of our eyes! Chase is every bit a living, breathing miracle of the love and blessings of God and I could not be more thankful to be on this journey as his mommy.

But I often think of how our world was turned upside-down that fateful Tuesday morning. I can easily recall those unimaginable emotions I had never before felt in my lifetime. I remember what it felt like to be told my unborn son was not healthy and learn how his future was very much in jeopardy.

On Tuesday, June 16th, hubs and I left LO with Mona and met at the specialist's office for our ultrasound appointment. We were taken back and the technician started the ultrasound. She did some of the same measurements they had done the day before, and I patiently waited for her to give us an "all clear."

To my utter shock and horror, I vividly remember her muttering the phrase "I won't pretend that every is okay..." as she was trying to coerce the baby to move into the right positions so she could get a look at exactly what was going on. She left the room and brought the specialist, Dr. G, back in with her, and had him continue with the ultrasound. He was focusing on our son's heart, although all we could see was the black and white image surrounded with red and blue blotches that apparently indicated blood flow.

The doctor then dropped a completely unexpected bomb on us which we were not prepared to handle. He told us that it appeared our son had Hypoplastic Left Heart Syndrome (HLHS) and a Ventricular Septal Defect (VSD). We were in utter disbelief. We had never heard of either of these conditions and immediately wanted to know what the impact would be for our unborn son.

We left the ultrasound room and waited for the perinatologist in a tiny little room where he would come in and explain a bit more about these conditions. It felt like an eternity in that little room, our minds racing and buzzing with all of the "what ifs" and "how did this happen" etc.

The doctor finally came in and explained to us that HLHS is one of the most complex and rare congenital heart conditions in which the left side of the heart is critically underdeveloped. With HLHS, the left side of the heart can't effectively pump blood to the body, so the right side of the heart must pump blood both to the lungs and to the rest of the body. Without treatment, hypoplastic left heart syndrome is FATAL, usually within the first few days of life.

The doctor attempted to provide 4 options to us, the first of which was termination of the pregnancy. I wouldn't even let him get the words out of his mouth before interrupting to tell him that wasn't an option. The next option was called "comfort care" where the baby is born and you do basically nothing but hold and love him until he passes, within the first few days of his life. Again, NOT an option. The third option was a heart transplant, in which case it would be very unlikely to find a new heart for our son within the first few days of his life. The final option was the ONLY option for us. It involves a three-step surgical procedure designed to create normal blood flow in and out of the heart, allowing the body to receive the oxygen-rich blood it needs. It is by no means a permanent "fix" to the problem, but rather a way to surgically reconstruct the heart to make it more likely to perform the functions of a regular heart.

As you might imagine, we were completely devastated at the diagnosis, and for the next 24-48 hours, we were totally numb as we both attempted to digest the information and wrap our minds around what was in store for us. We felt totally deflated, and the joy and anticipation of the pregnancy and of expecting a new baby were completely lost.

We struggled through the first week, telling only immediate family and a few close friends about our situation. It was a very difficult and trying time, most of which I spent researching HLHS on the Internet, finding both uplifting, positive information as well as deflating, disappointing, heart wrenching information.

So finally today arrives, Monday, June 22nd. We had our appointment with a Pediatric Cardiologist, Dr. H. While we weren't expecting the diagnosis to change, we were hopeful that he wouldn't find any additional problems with the baby or his heart. Dr. H did confirm the diagnosis of HLHS and confirmed the baby would need the 3 surgeries in order to live.

While we are still reeling with the information and are devastated to learn that our baby has a serious and rare heart defect, we are trusting in God for His hand of healing and protection on our son. We know He is able to do more than we could ever ask or imagine, and will continue to trust in Him throughout this journey.

I have never allowed myself to imagine the future and have always taken things one day at a time -- living in the moment as best as I could. I was afraid to believe we would have our boy with us for even 5 days, much less 5 months or 5 years! Or that he would be living and thriving and truly enjoying his life, with just half a heart? It was beyond fathomable.

But as I look back and reflect on the past 5 years, I see that I've learned something incredibly valuable:

 God gives us exactly what we need, right when we need it. 

I never could have made it through the last half of my pregnancy with Chase without God giving me the peace I needed to make it through.

I never could have delivered my son and watch him be whisked away, waiting over two hours to hold him for the first time.

I never could have sat by his bedside for 6 days, patiently waiting for my second opportunity to hold my newborn baby---the night before his first open-heart surgery at 7 days old.

I never could have watched as my tiny baby rolled down the hallway to the OR -- not once, or twice, but a total of SEVEN times so far---three of which were to repair his tiny heart.

I never could have made it through the past five years without God providing me with exactly what I needed, right when I needed it.

His grace. His peace. His love. His mercy. His healing. His faithfulness.

We are so blessed! This boy is absolutely amazing and I praise the Lord for allowing me the privilege of being his mommy!

I LOVE YOU, MY SWEET CHASE!!!!!

Four Weeks

Four weeks ago today. Still so hard to believe what a miracle this child truly is. We are so blessed.

A Big Announcement...

I didn't want to say anything before it was official, but I received the letter yesterday, so it's official!

Chase has been granted a wish from

!!!!!!!!!!

I must say, this is a weird, bittersweet, strange feeling. Wishes are granted through MAW for children with life-threatening medical conditions. No one wants to be in that boat, but when you find yourself there, you want to do everything you can to give your child the very best life possible!

And I'll be honest -- we are very encouraged by Chase's amazing strength (and stubbornness) as he's battled his Congenital Heart Defect (CHD) through 3 successful heart surgeries to essentially reroute his body's normal circulation to create an entirely new physiology with only half a heart. Our expectation, hope and prayer is that with God's continued hand of protection on our boy, he will have a very bright, normal, LONG life ahead of him. And for that, we are truly grateful and blessed beyond measure.

But he was dealt a rough hand. He had a very rough start. Open-heart surgery at 7 days old. A second at 4 months. A third at 4 years of age. Not to mention 3 heart catheterizations, countless procedures, echos, EKGs and a daily medication regimen that he will continue for his entire life. Not to mention the very real possibility of a heart transplant at some point during his lifetime.

Those reasons, to me (as well as his cardiologist and the amazing staff at MAW), are more than enough to qualify him for this once-in-a-lifetime opportunity. And I couldn't be more thrilled for him.

Stay tuned for more as we move forward with #MAW4Chase!

But first, here are a few pics of my little goofball learning about his Make-A-Wish opportunity. Naturally, big sis was pretty excited about it, too!

Cardiology Appointment Results

Chase had a great appointment this morning! He cooperated wonderfully for the four BPs, O2, weight and height. He was not, however, in the mood for the EKG. I couldn't blame him though -- 12 stickers all over his chest less than 3 weeks after heart surgery? No fun for my poor guy!

He did quite well for his echo, and then it was time to wait on Dr. H to review everything and examine Chase. He was very pleased with everything!!! He decreased his Lasix from 3x/day to 2x/day, so Chase will be glad about that! Hopefully we'll wean off or down to 1x/day when we go back in 2 weeks.

Dr. H also decided to put Chase back on an ACE inhibitor. He had been on Enalapril since his Glenn in March 2010, but MUSC discharged him after his Fontan without putting him back on it. Dr. H says that he wants him on this med due to his tricuspid valve regurgitation, so he prescribed Lisinopril, which is only 1x/day (whereas Enalapril had been 2x/day). We expect he'll be on the Lisinopril along with his aspirin for life.

So it was a great appointment today and we're very pleased with how things look! It's wonderful to be post-Fontan and we're hopeful that soon we'll get down to cardiology checkups only once per year going forward!

Way to Rock the Fontan, Chase!!!

Cardiology Appointment

Chase has a cardiology appointment with his regular cardiologist this morning. It should be a full work up with echo, chest x-ray, EKG, etc. Please pray that be cooperates and that the results are great! I'll share an update after we're done!

Thanks, friends and prayer warriors!

Post-Fontan Home Update

We've been home for 3 days now and it sure is wonderful... well, mostly! We arrived Sunday evening and managed to unload both cars, unpack most of the suitcases, eat dinner, and get the kids bathed. That was a pretty big success for us!

Monday involved 12 loads of laundry and a bit more unpacking. But mostly it was just this weird feeling of not knowing what to do with myself! We had an expectation that we'd be in Charleston for a month, so to be back home after less than 2 weeks? It's been an adjustment, at least mentally for sure. Hubs hasn't returned to work, LO hasn't (and won't be) returning to school and it's just been a bit weird all being at home together. My guess is hubs will return to work after the holiday weekend on Tuesday, and hopefully I can start to work more diligently on LO's homeschooling (at least adding Bible to her existing math and reading work). I'm also hopeful to have a "Water Play Day" in the backyard as a way to celebrate the end of the school year and to celebrate Chase's rocking of the Fontan.

Tuesday was just like Monday, except we knocked out an early morning park run for the kids to play, followed by the dreaded Walmart and grocery store runs. At least now we're stocked up on the essentials and can actually eat meals at home again! Score! Oh, and I should mention that Tuesday morning started with Chase coming into our room and showing us his chest... he had peeled off all but 2 of the steri-strips that were covering his chest incision. I about fell out of bed! Those were supposed to stay on and fall off on their own, usually at around 14 days post-op. Apparently they had been itching him so he peeled them off. I'm really hopeful he didn't do any permanent damage! Haha!

This morning we had a post-surgery follow up with the cardiologist. I expected a chest x-ray to check for fluid and possibly an echo, but they didn't do either. He sounded fine and they didn't see any reason for the additional tests today. But really I think it was because Chase's usual cardiologist was traveling so we had to see a different one, and they didn't want do make any changes -- they'd rather let his cardiologist do it. Hopefully we can decrease his Lasix from 3x/day to 2x/day when we go back next Tuesday to see his regular cardiologist as he really doesn't like that med. In fact, he's been continuing to fight us on every liquid oral med. It's terrible giving him pain meds (Tylenol or Oxycodone) because be fights like a madman! The doctor did remove he stitch that closed Chase's mediastinal chest tube site today, so at least that was done!

So for now it's just a matter of figuring out our new post-Fontan normal and doing what we can to help Chase settle down with his new physiology. He's been showing what I'd almost classify as signs of PTSD, for good reason! Literally everything is a huge battle with him, from eating to bathing to walking 10 steps to the bathroom. Like, everything. Seriously. It's insane. Please pray for lots of patience and understanding for this tired, worn out mama -- and for daddy who has to take on the extra workload when mama runs away for a mental health break!!!

I also want to mention again how very grateful we are to the many, many, many of you who sent cards, letters, gifts and other well-wishes to Chase, LO and E during the past few weeks. We've had a tremendous amount of support and are so very grateful to each of you! Thank you so much!!!

Now for a few pics!

FINALLY leaving the hospital...

In the car and headed home with Ginormous Mario.

Dinner at home for the first time post-Fontan!

E gets so excited playing with balloons!

Some fun at the park on Tuesday!

Sweet boy getting some sun with mommy this afternoon.

Sleepy boy wasn't too excited about a Walmart run on Tuesday...

More fun at the park!

This boy amazes me every day. He's our living, breathing miracle!

DISCHARGED!!!

More details to come soon, but I just wanted to let everyone know we were discharged this morning and we are currently on our way HOME!!!

Thank you to everyone who lifted us up in prayer and supported us through this journey. We appreciate all of the calls, texts, Facebook messages, cards, video messages and gifts from each of you! ❤️



- Posted from my beloved iPhone

Big, Fat No-Go for Discharge Today :(

We broke the cardinal rule of heart patients following a heart surgery: We jinxed it. Like all over the place jinxed it. And now we won't be going home today.

Even after half a dozen qualified medical professionals reviewed Chase's x-ray from today and cleared us for discharge, the surgeon on call found the tiniest (very insignificant per our Resident and Fellow) pneumothorax and will not allow us to be discharged. We will need to stay inpatient and repeat the chest x-ray in the morning.

Disappointed doesn't begin to describe this feeling.

It's all our fault! The bags were packed. The car was loaded. The leads and lines were all off. Chase was dressed in "real" clothes. We told him we would be going home to see LO and E today. We literally had one hand on the door handle, awaiting the official discharge documents to get us on our way.

We were told a pneumothorax this insignificant, located near the top of his right lung, is not unusual following the removal of a chest tube. And in basically every other case, it hasn't prevented discharge.

Until today, apparently.

Guess I'd better have hubs unload the car and find some quality entertainment for our boy once we break his heart and tell him he's stuck here for another night.

Sorry for the terrible tone of my post. I'm frustrated, disappointed and sad. It's all good. Everything will be fine. This really isn't that big of a deal.

Except it kind of is. To me, at least.

Post-Fontan Day 8

Well, apparently they don't count the surgery day around here as an actual post-Fontan day, so looks like today (Friday) was technically Day 7. I won't be updating the past week of blog entries to reflect that, but suffice it to say we are heading into Day 8 tomorrow (Saturday) and as it looks right now, we will be DISCHARGED!!!

So they removed his left and right pleural chest tubes this afternoon as well as his central line. The order is already in for Dr. K to remove his medialstinal chest tube and pacing wires tomorrow morning, followed by an x-ray and echo before DISCHARGE!!!

Can you tell I'm a bit excited!?? I still can hardly believe how amazing he's done. Literally, he had just come out of heart surgery and was still intubated in the ICU at this time last week. And here we are talking about getting him out of here TOMORROW.

God has been so faithful and has heard our many prayers! We have been so blessed to have such a supportive family, amazing friends and a loving church family to help us on our journey with Chase. I cannot say enough to thank each of you who called, sent a card or gift and encouraged me with text messages throughout the last 2 weeks. Truly you were all used by God to help me through this difficult time and I will always be grateful!

Miracles happen here. Trust me.


A trip to the Atrium this morning!






Somebody was really quite happy with his Versed/Oxyxodone cocktail before his tubes were removed.





A post-removal chest x-ray. So cool!


My tired baby boy!

Post-Fontan Night 7 - Updated!!!

Quick Update (5/16/2014 10:05 AM): The doctors just finished rounds and we received some EXCELLENT news!!! As of right now, the plan is to remove his left and right pleural chest tubes and pacing wires this afternoon after Dr. K is out of surgery (Chase's surgeon, Dr. B, isn't here today). Hurray!!! It sounds like his central IV will also come out of his neck (a huge relief to Chase as the tegaderm is constantly pulling his skin and is very uncomfortable). This means the ONLY thing left will be his medialstinal chest tube, which is on track for coming out tomorrow!!!!!

Way to rock the Fontan, Chase!!!

Chase had a great evening and night last night. His o2 was turned OFF and has stayed off! Yay!! This makes him super happy because he was constantly irritated by that nasal cannula. His left and right pleural chest tubes have drained almost nothing and I feel pretty confident they will both come out today. Praise! His mediastinal chest tube drainage has slowed significantly but I would imagine it will stay until tomorrow.

We had a visit yesterday from a nurse who was preparing the prescriptions that we would go HOME on, which was a very encouraging thing! He'll continue to take a baby aspirin (for life), will have Lasix (a diuretic) to help continue to dry him up (he'll wean completely off of it over the course of 2-3 weeks following discharge) and a 5-day supply of Oxyxodone for pain (helpful with the long car ride home). He was on the blood pressure medicine Enalapril before surgery but they haven't started that one back up yet. It's possible they won't put him back on it since his BP has been so great, which means he'd literally be down to taking one aspirin a day -- THAT'S IT! Awesome!!!

Yesterday he was able to get out of bed and take the wagon down to the Atrium (play area) TWICE and even got up and walked around while we were there, which was HUGE! He had a great time playing with big sis, Gramma & PaPa.












After the play room fun, he fell asleep early, around 7pm, and basically slept through the night.


This is great because he certainly needs the rest -- especially after his big day of moving around and walking. But he didn't eat dinner, won't eat breakfast this morning and hasn't peed in over 12 hours, even with Lasix. We definitely need to get him eating and drinking more today.

I'll update this post after this morning's rounds to see if we'll be losing any chest tubes today. Please pray this is the case!

Post-Fontan Day 6/7

Quick Update (5/15/14 10:20 AM): They just finished rounds and looks like we're keeping all 3 chest tubes for another day. There's a chance he may lose the 2 pleural tubes tomorrow but the center one will be sticking around for a while. Exactly what we've been afraid of. They did say he can lose the oxygen and see how he does.

I didn't get around to posting a Day 6 recap yesterday following our morning rounds update, but it was a pretty great day overall!

This was Chase on Tuesday. Obviously very thrilled with his current situation.

And here he is on Wednesday morning, slowly starting to perk up after getting into the treasure box of toys and goodies mommy brought for him!

As I mentioned yesterday, the pain management regimen of Tylenol and Oxycodone was very successful in getting our boy back to feeling and acting like himself! We played in his room a good bit and even made it downstairs to the Atrium! It was definitely a ginormous effort to get him out of his bed along with his three chest tubes and two pleur-evacs and an oxygen tank. Luckily we were able to disconnect his Milrinone IV drip so we didn't have to bring the IV pole with us. But we managed to get him loaded up into a wagon and make our way to the elevator to go down one floor to the Atrium. He was quite thrilled, as you can clearly see here.

But he absolutely LOVED it! It was so great to see his eyes light up and even finally see a smile on that sweet face of his.

We were there for all of about 5 minutes before he announced he needed to go potty. This of course meant we needed to scurry ourselves back upstairs to his room, which we did! He went potty and was more than happy to go back downstairs again. Whew! That was so great! We went back downstairs and he played for a good 15 minutes or so. He didn't get out of his wagon, but just having him sitting up and out of his bed was a MAJOR accomplishment! Getting him moving helped get some of the fluid off his lungs, too, so we were very glad to see that!

The evening was pretty quiet and uneventful. He just relaxed in his bed and caught up on some movies and iPad games.

The night sounds like it went pretty well. I actually went to the rental house and slept there last night... my first night in a real bed since the night before surgery! It was heavenly! I was able to feed E before he went to bed, take a shower, cuddle and chat with LO and get a great night of sleep before returning to the hospital for day 7!

Currently we're waiting on rounds to find out what the game plan is for today. There's a tiny chance his left and right pleural chest tubes may come out today as the drainage from these tubes has been insignificant. The center tube is still draining a bit so I don't foresee that one coming out until tomorrow at the very earliest.

Our plan for today is to get Chase back downstairs to the Atrium this morning after rounds for a bit. Then I'm going to give him a "bath" and get him changed before a visit from LO this afternoon and another trip to the Atrium! Gramma and PaPa are planning to stop by as well, so it should be a fun day for Chase! Yay!

I'll update more after we hear from the doctors this morning following rounds. Maybe say a few prayers that we lose a couple of chest tubes today!!! :)

Morning Rounds Update

Rounds this morning were encouraging, but won't result in any immediate changes to Chase's comfort per se. His chest tube drainage is trending down (yay!), so there's a chance one may be pulled tomorrow or Friday. The drainage looks good but it's VERY hard to put a tube back in if needed, so they'd rather be conservative and give it a few more days to be super sure.

They've decided to discontinue his Milrinone (heart med) once the current bag is empty. It's on the lowest dose possible and really isn't providing significant value. He's still getting fluids through the central IV but they want to discontinue that as well and let him handle his fluid intake with drinking/eating. This means we're close to losing all of the IV lines, but the IV itself will stay in until all chest tubes are out. The tape holding this IV in place has been one of if not THE biggest source of discomfort for Chase. He'll be so excited when that thing is gone!

He's still on 1L of oxygen but they plan to wean him down to 1/2L soon. It's a delicate balance because we want to keep his o2 above the threshold, but with these chest tubes in, kids don't usually breathe very deeply (due to the pain) so we don't expect his o2 sats to jump up much until after the tubes are out.

We are still awaiting the results of the blood in his stool. It was a bit firm so they're thinking he may just need more stool softener to make it easier on him. Hoping it's that simple to address!

So a BIG praise report from this morning... Chase ate a small bowl of cocoa puffs and drank a pint of milk!! This is in addition to a few bites of a Krispy Kreme donut and a Pop-Tart! Yay, Chase!!!

We also have him on a solid Tylenol/Oxycodone regimen rotation every 2 hours and it seems to really be helping with the pain. He rested for a bit and then we played with bubbles, a new Toy Story RC toy and a Toy Story puzzle! He's acting much more like himself. Still VERY MUCH not wanting to be here, but much more like the stubborn Chase we know and love!

Our goal for this afternoon is to get him out of bed and moving around. This means a trip to the Atrium (play room) around 2PM today. Please pray he tolerates being out of bed and in a wagon as we head downstairs. I'm hopeful getting him out of his room will be a big encouragement to him!

Thanks so much for the continued prayers for our sweet boy!!!!

Post-Fontan Night 5

Wow. It's been over 4 years since our last stay in the cardiac step-down unit with Chase and apparently I must've blocked it all out of my memory. It's amazing how quickly it all comes flooding back though. There is absolutely no reasonable expectation of one getting any amount of sleep on the floor. Period. If I wasn't so sleep deprived I would probably find it comical. But I am, so I don't.

Luckily Chase had a few decent bouts of rest last night. He had his chest x-ray around 4 AM and was up to potty a few times. He had some blood in his stool so we've got to do some extra tests to see what's going on there. Please pray it's nothing serious.

We're having a hard time managing his pain since we no longer have access to morphine or versed up here. We're anxious to give him Oxycodone due to his previous experiences but it's really our only option besides Tylenol. We gave him a half dose at 7 AM to see how he handles it, and so far so good. We're hoping to get him eating a bit this morning so when he's due for another dose of Oxy at 11 AM, we can try a full dose. We need to stay on top of his pain, especially if we want to get him moving, which we definitely do!

We expect the doctors to round soon so we can hopefully get some answers on what our game plan looks like for today. It seems as though his drainage continues to decrease but I'm doubtful they'll want to remove any of the tubes. I've heard the center one is the most painful and kids usually start to feel better once it's out, but since he hasn't really started eating yet, I'm not sure it's even something they'll consider.

More to come after rounds...


- Posted from my beloved iPhone

Post-Fontan Day 5

Hello, Tuesday! Let's see what you had in store for us! For starters, we were moved to the cardiac step-down unit on 8D. We still have 3 chest tubes, pacing wires, a central IV and a nasal cannula of O2. So really, we haven't made any progress today compared to yesterday.

The good news is that his drainage is continuing to decrease somewhat significantly, which is AWESOME. The less good news is that he still hasn't increased his food and fluid intake. He did have tiny bites of a few things throughout the day, and I'm hopeful they will all eventually add up to enough to ease his stomach pain and start to indicate whether or not he's going to have issues with the fat in his diet with his new circulation.

Speaking of pain, he's still only on Tylenol, but the staff here on 8D prefer to also push Oxyxodone q4. We haven't given him Oxy since the barf incident Saturday morning, but we were still able to manage his pain in the PCICU through morphine and versed. Unfortunately, those meds aren't really "allowed" in 8D. So now we're looking at gambling with his delicate belly situation by dosing some Oxy tonight around midnight. I am praying we don't start back over at zero with this causing him to vomit again.

I'm expecting a long night ahead. The nurses will be in every 2 hours to measure his chest tube output. They'll be in at midnight to push lasix and zofran via IV, and possibly the Oxy (PO). They're back again at 2am for fluid check, then 4am for Tylenol and/or more Oxy, depending on how he does. There will most likely be a chest x-ray between 4-6am as well, not to mention frequent potty trips for Chase that require at least 4 hands to make happen. This will all be pretty standard with our nights on 8D. Color me thrilled!

We're hopeful to get Chase to the children's atrium (play room) tomorrow to get him moving around and to try to pull out that stubborn fluid. We'd love to get LO up here as well to play with Chase in the atrium, but we'll see how the night goes.

Moving Up

The team (minus Chase's surgeon) rounded this morning and basically told us there's no change. :( His chest x-ray was sill a bit hazy, even though his drainage has started to decrease. They can't remove any of his 3 chest tubes because he's still not eating and we won't know if he has problems processing the fat in his foods with his new circulation until after he starts eating. He's really dragging on this and I think most of it is due to his fear of another vomiting spell. It just breaks my heart! He complains often of his tummy hurting and I know it's because he's hungry! He hasn't eaten in 5 days!!! Please pray we can get some food in that belly!

The man himself, Dr. B (Chase's surgeon) stopped by about an hour after rounds and told us he thinks it'd be best for Chase to head upstairs to 8D so we can work on getting him out of bed and mobile as that is the best way to loosen and remove the excess fluid on his lungs.

Well, what would you know? We're all packed up, have a room assignment on 8D and are awaiting transport to take us upstairs.

This is definitely a step in the right direction and a step closer to home. But it's also where the hard work really begins, for all of us but especially Chase. We're gonna have to get him up and moving around all while he has 3 tubes sticking out of his chest and a central IV sticking out of his neck and an o2 probe on his toe and biotelemetry wires measuring his heart and breathing rates. In other words, it's gonna be crazy difficult and uncomfortable for him. But it's a step in the right direction, so we're all for it!

Well it's about that time! More to come from 8D!

Post-Fontan Night 4

I was a bit worried about how tonight was gonna go down. First we lost our PCICU nurse to a floater from another unit. In pediatric cardiac intensive care, that's not what you want when it's your child's care at stake. Then, we're asked to give him his daily aspirin along with a dose of Aldactone. Keep in mind we've been trying desperately since his Oxycodone-induced vomit fest Saturday night to convince him that we were finished giving him meds that would upset his tummy or make him throw up again.

Literally less than 5 minutes later the boy was puking his guts (and meds) into a bowl. I. Felt. Horrible! I want him to trust us but he had to have thought we were big fat liars! Luckily it was all contained this time and he seemed to feel better after. But it was so defeating in that we had spent hours trying to get him to take the tiniest sip of water or juice and eat a minuscule corner of a cracker, only to have what little was on its way to his tummy end up in a barf bowl. Fail!

He seemed extra sweaty/clammy all afternoon and I decided to give him a "bath" with the hope that it would help him settle down and sleep for a bit, as he hadn't slept much more than a few minutes here and there all day. He wasn't a big fan of it, but was SUCH a trooper! I was able to get him cleaned up, slathered in some baby lotion and even washed (most of) his hair with a no-rinse shampoo I picked up at Sally Beauty Supply last week. Then it was into his Toy Story hospital gown and socks, a fresh sheet and blanket on his bed, and a few minutes of Netflix on the iPad.

Not long after, he started to nod off into slumberland. Thank You, Lord, for hearing our prayer! He slept for a good hour -- maybe more -- before waking up around 1 AM for a potty break. We got him situated on the potty chair and he not only peed but also had his first poopy since his surgery last Friday!!! This is a huge milestone and means we won't need to give meds to help with this. Way to go, Chase!!!

Once he was situated back in his bed, he was able to fall back asleep relatively quickly and is now getting more much-needed rest!


He had his chest x-ray at 2:15 AM and then the nurse took his BP and stripped his chest tubes before I got him tucked back in with the hope that he'd get a few more hours of solid rest. And that's exactly what he did! It's now 5:30 AM and we just finished another BP and chest tube strip. A half-dose of morphine is on the way since he hasn't had any pain meds for several hours, so again I'm hopeful that he'll grab a few more hours of much-needed rest.

The docs will round in about an hour or so, and I'll be curios to hear their thoughts for today.

I should take a moment to mention what troopers LO and E have been through all of this past week. Let's face it, LO is getting lots of quality time with THREE grandparents. What's not to like about that!? And E... well, let's just say that as long as there is food involved -- and lots of it -- he's just gonna be a happy camper. Throw in a nap or two, and he's golden! I honestly am so thankful for my in-laws for taking such good care of my littles. It helps me to focus on Chase's care when I know the other two are so well loved and cared for.

But on the other hand, it's so hard to be away from them! I've been spending every night at the hospital, only to come home mid-morning, visit with the kids for a few short moments, take a solid nap, shower, then head back to the hospital by late afternoon and repeat! I just wish I could clone myself so I didn't feel like a horrible mommy for neglecting my kids. I know they're getting loved on, but I just miss then terribly! Praying for some progress in getting us home!

Post-Fontan Day 4

Well we didn't quite get the news we were hoping for this morning during rounds. His surgeon wanted his CVP (central venous pressure) set up again (it wasn't working over the night and the nurse had left it alone), and he also wanted to increase his Milrinone (heart med), so the central line most definitely would be staying in.

Dr. B also ordered an echo to check for fluid as his x-ray was hazy and indicated a strip of fluid in his lung that wasn't draining. This meant stripping the tubes, which is very painful. The nurse gave him some morphine and versed before stripping the tubes and she was able to get a good bit of fluid off.

His drainage seemed to slow throughout the day today, so I'm hopeful that his chest x-ray tonight will look clearer. His nurse thinks perhaps he'll be ready for the floor tomorrow, but I'm not holding my breath. Slow and steady is the name of the game around here.

The hardest part of today has been Chase's discomfort. He's off all sedation meds and the anesthesia from his surgery is all out of his system. He's only taking Tylenol for pain (and an occasional hit of morphine) and cannot have Oxycodone since he's still refusing to eat. Today he has been very sad and discouraged. He's more like himself, which means he really doesn't want to be here and has said so several times. He's fighting the food and fluids and today had also started fighting the sleep. He's so exhausted but is also miserable being stuck in the hospital, and it's just a tough situation all around. It really breaks my heart to see him like this -- so discouraged and not interested in anything. I brought LO up this afternoon and seeing her didn't even really lift his spirits. He received some mail that I brought up for him today as well, and he did smile a tiny bit but was still just mostly uninterested and sad. I've posted all of his cards on the wall by his bed so he can see them and be encouraged throughout the day. I just know he's gonna get there -- just maybe not as soon as I'd like.

We decided to give him some Ativan to help settle him down enough to rest. Hopefully it dies the job!

My prayer for him is that he'll get comfortable enough to get some solid sleep tonight, that his fluid will continue to decrease and his spirits will lift somehow. It hurts so much to see your child like this and be powerless to do anything to help. Please pray he turns a corner tonight!!!

We were told earlier that he'd have his awesome nurse from last night again tonight, but they just said she was pulled to the PICU and we'll have a "floater" who isn't an actual PCICU nurse, so that's a bit unsettling for us. Please pray she's on top of her game and helps us get Chase to have a restful night.