Shabby Blogs

Friday, August 29, 2014


We made it home! Jack had his post-op appointment in Charleston Wednesday! It was a very long appointment and at times it was very nerve racking. I knew from they way he was so happy and playing so hard he was ok but there is always that little part of you that thinks "what if. "  First he went for his vitals check. He's only lost 2 pounds. I thought that was good considering this fat free diet but also because of how little he has eaten over this month. Next we went for the X-ray. Jack hates the X-ray. I know it doesn't hurt but I guess he thinks the machines are scary? That was quick. Echo took forever and was the part where my stomach started to turn. The echo tech stayed in one area on his left side for the longest time and seemed to be taking video and pictures in the same area over and over. I didn't ask him why because they cannot tell you much about what they see.  Jack was so good and laid so still while the tech got all the pictures he needed. 

Then it was time for the doctors. First was the fellow who allowed me to breathe a huge sigh of relief because he told me the X-ray and the echo looked great. He said Jack's turn around with his drainage was baffling and they rarely see anyone with as much drainage as he had dry up so quickly, go home and stay drainage free. This comment was something all the doctors said. I know this was just another one of His miracles!
Finally Jen and Cathy from Dr. Bradley's team came in. I love both of them dearly. They checked Jack out and then it was play time. They took selfies. Played with pagers and cell phones. Blew kisses and tormented me with Jack holding Clemson paraphernalia. 

It was a bittersweet experience. My original plan was to start cardiology follow up at MUSC. I just don't love the Richland clinic. MUSCs feeling was that we needed a doctor in Columbia and presented me with an option I liked. We should be getting a call with our follow up appointment this week. 
Jack still has to be on the fat free diet until September 28. I'm pretty sick of ground chicken at this point so if anyone has any other fat free or low fat options let me know. He can have up to 5g of fat at lunch and dinner. We've all been doing the diet because Jack always wants to eat what we eat. Hence my disgust toward ground chicken at this point!
Tuesday I packed up and loaded the car. I was really hoping the appointment yesterday would go well and thankfully it did!!! As soon as Jack was done it was off to Columbia! Jack came in the house, pointed and talked about everything. I have never wanted to know what he was saying more than I did then! He had to get re-acquainted with all his toys. 

When it was bedtime both boys went right to sleep and I didn't hear a peep until morning! It's so good to be home!!!

Thanks for all your thoughts and prayers for Jack!

Tuesday, August 26, 2014

Bags packed, ready to go?

Well, not too much has happened since Jack was discharged. Except that I have a little boy who is 200% better than before. Yeah, 200%. His skin is brighter, his eyes whiter, voice is clearer, full energy to the point of no more naps, and more. If you could think of anything that would be better about someone after they've gotten well, he's got it!! GOD IS GOOD!!!
One of the biggest things I've noticed is that he stands flat footed now. One of my theories of why he hasn't walked yet is circulation.  I feel sure that is true. He used to stand on his heels and avoid his toes at all costs!!! If he didn't want to stand he wouldn't! Now those feet are planted so I can't wait to get him back into physical therapy!
Our other big news is that we are packed and ready to go. He has his last post surgical follow up tomorrow morning.  Assuming everything goes well we are headed home! I love this city but being stuck inside is not as fun as getting out there and seeing it all!! Plus it will be nice to get the boys back to their beds! Ill keep y'all posted on what the doc has to say!!

Also, Hudson is 9 months. I'm so sad he's growing up so fast!

Monday, August 18, 2014

So amazing

I don't know why but Jack seems more like a little boy to me- more than ever. He sits up taller, his eyes are brighter and he's as sweet as ever! 

He's also been sleeping in the "big boy bed" at the hospital and looks big in it!

Amazing! Also what's amazing- his chest. 12 days post surgery this is what it looks like- internal stitches, steri-strips gone, chest closed and chest tube places scabbed over. The human body is amazing and God is to thank!



So we broke out of 8D! We love the nurses, PA and docs but it was time! It was so much easier with a baby to be cooped up!! Everyone was sad to see him go and he blew lots and lots of kisses! We will be going back in the coming days to get X-rays and echos to make sure the fluid is not accumulating in his chest.  Also I'm sure they will be quizzing me on the fat free diet! 

Resting peacefully in Charleston now!
On the way home!

Blowing kisses to the people who will always have a special place in our hearts!!

Sunday, August 17, 2014

Discharge Monday

Jack got his last chest tubes pulled today!! He had a clear X-ray following the pull and if his X-ray and echo tomorrow look good we are out of here! I'm really still in shock because this will be less than 2 weeks!! Every time the docs come to talk to us about it they talk to us like we are ready to get out of here. We keep telling them we are ok staying! I feel comfortable with leaving Monday. 

Jack is definitely Jack again. Playing hard and happy! 

I will let you know tomorrow if we really leave or not!

Saturday, August 16, 2014

Rumor has it...

We may go home on Monday. Well, not home, home- to our home for the month. His drainage has decreased to the magical level and because we have somewhere in town to stay they are going to set us free! They are planning to pull his chest tubes tomorrow and then keep him overnight for observation. If everything looks good they will discharge him!!
We will have to come back every few days for X-rays to make sure there is no additional fluid build up. He will continue on the fat free diet for at least 6 weeks. Hopefully after that we will think of Jack's heart surgeries as a distant memory! 
God has blessed us so much- not just on this surgery but the other two as well. I told one of our favorite nurses that I was nervous to leave and she said that he is so much more stable than he's ever been! That's a great feeling!
Yesterday some of the players and Charlie from the Riverdogs came! They were so kind; and they played and got to know each child and family individually!
Jack is back to being Jack. He plays hard, dances to music, talks and is happy again! What a relief!

Friday, August 15, 2014


Wow! My post is so overdue I had to go back and see where I stopped. It is difficult to have time for much of anything other than Jack here which is just fine because he is our number one priority! My nerves have been so frazzled at times I'm not sure if will be able to ever unwind.  It's so hard to watch him hurt when he's maxed out the pain meds. I check every line coming out of him to make sure they aren't a culprit. When it's nothing else, all I can do is sit with him and let him cry it out. The other thing about this surgery is that Jack is only 3. I believe Jack understands most of everything I tell him but it is hard to rationalize that you can't sit or scoot over your chest tube lines because you will pull them out. Or that I know it is uncomfortable, but if you sit still the blood pressure cuff will stop squeezing you so tightly. Anyways, this has been one of the most challenging experiences of my life. 
The PICC line was placed late afternoon Tuesday. They put him on a clear liquid diet starting at 12am Monday. There was no scheduled time for the cath lab so I thought it would be early considering the clear liquid diet. Well it wasn't. Finally after all the jello I could possibly feed him they called him to come to waiting area at 2:40pm. He was getting incredibly irritable- assuming because he had had nothing to eat in almost 24 hours. There was some "discussion" on whether they would be kind enough to remove his neck line and redress his chest tubes while under anesthesia since he had been so irritated the previous days. They sent me off when they took him back and I had no idea what to expect after the PICC line. After an hour of fresh air they called and I went up pleasantly surprised.  The amazing physicians assistant personally went over to the cath lab to take care of Jack's line removal, bandage change and got all the sticky of his sweet skin as she could! That was so above and beyond her duties I still can't thank her enough. She just makes sure to tell Jack that he can't make too many more girlfriends other than her on the floor! 
We got back to the room sometime after 8pm. Wednesday Dr. Bradley decided that his drainage on his middle tube had decreased enough for it to be pulled!! The docs and nurses all told me once that comes back you begin to get personality back. He skipped a nap Wednesday and played all day. We went to the children's atrium twice but it was so difficult with the 2 chest drainage boxes and the IV pole. 
Today Jack's nurse and the nurse practitioner helped convince the docs to let him off the IV meds for an hour to play in the atrium. They did and today he by far has been the happiest. He is starting to like everyone and has been talking, smiling, waving and blowing kisses. Tomorrow we are looking at fully coming off the IV meds and another chest tube!! Drainage has dropped significantly!! As of the moment it looks like we could be out of here by the end of the month! Maybe even next week!

Sunday, August 10, 2014

Day 4

Today started out great! Jack wanted to play, he ate and got out of the bed for a while. It seems soon but moving around is the best thing he can do. It helps to push the drainage out. We had planned to take him to the children's atrium today but they have shorter hours and it didn't work out with lunch and nap. He woke from his nap in an all out fit. All the nurses keep reassuring me that they all are in this much pain and this miserable and he will get back to normal. I believe them until the next fit happens. It's just so hard to see him like this!
Jack has confirmed chylous drainage so he is on a full fat free diet now. I'm having a hard time with it because many of the good for you things we all eat are not fat free. The nutritionist will be back tomorrow so I'm hoping she can help me out with things to feed him because there don't seem to be many options on the hospital menu. 
With the drainage the doc told us to expect at least a month stay, which I had planned on but hoped we would get the nice 2 week scenario the staff talks about. We always seem to take a permanent residence here. 
Dr. Bradley came by and said Jack is draining a lot, which didn't surprise me because I've been keeping track of it as well. He also said it needs to taper off or they may have to do something. I know what that something is and it is not a good something. Just have to trust that whatever happens is for the best for Jack. 
Another bit of not so thrilling news is that he will go into cath lab this week to have a PICC line put in. That requires full sedation and intubation. I guess it gets me upset because I requested he get one in pre-op and was told he didn't need it. Granted they didn't know how long we would be here or how badly he would drain but I should have demanded it. Always trust that parental instinct!!!
On a good note we were moved to a new room since we are always here for so long! It is huge and we have a great view of the city and the Ravenel Bridge! Another really good note- I have to say that my children have the greatest father in the world! He is so attentive and nurturing to our children. Asks the docs and nurses questions about Jack and his care. And he always checks on me. Luckiest girl right here!!
A picture of Jack before it all went south today!


So I'm behind again! I will start where I left off- we ended up leaving the PCICU before lunch time!!! I love short PCICU stays! Got to 8D and we were a very needy room and have continued to be. Most of the day was uneventful but he was uncomfortable from the adverse side effects of morphine. He looked like he had been in match with Mike Tyson! We started him on oral and IV benedryl which helped calm him. He also needed several dressing changes and so we got him mild sedation to keep him comfortable. The night was rough. Thrashing continued, agitation, shaking etc. there wasn't too much we could do for him. 

That brings me to today. Throughout the night he had an exceptional amount of drainage, 1000mLs! For those of us not on the metrics, that's 4 and a 1/4 cups! In the morning he was comfortable at times and then had times of pain. We watched the same videos over and over. Jackson and I are pretty sick of Mickey and Oso but he loves it so whatever!! Fortunately there is an enormous video library here we can keep changing out when they are open. We got to spend a little bit of time with Hudson in the children's atrium and I think it did all three of us some good. All he wanted out of all the toys you can imagine to choose from was a bucket of balls! He is a ball player yet!

He likes to come visit and gets so excited to see Jack. He is worried about him though. If Jack cries he cries. It's pretty sweet. When we got back to the room Jack had decided he wanted to eat. We let him have at it. He didn't eat much and unfortunately lost all of it! As soon as he lost it Dr. Bradley walked in. He decided to restart Jack on a Milrinone drip to help his heart squeeze more since there is so much drainage. 

We got our first smile which was fabulous! 

He ate a decent about for dinner. Of course the nurse just came in and let me know he has chylous drainage. The levels were not too high but he also didn't eat much. They will probably make him eat a little more fat to see and then call it. That unfortunately means we are here for a while because there will be lots of drainage. Poor Jack. It's not like he hasn't been through enough. More to come!

Friday, August 8, 2014

2 nights, 1 day and the start of a new day

So I'm already getting a little behind on blog updates. It's much harder with a toddler than a baby! Toddlers have bigger opinions!
His first night post surgery was fitful but he was comfortable. I stayed with him and got very little sleep because his fits were every 30 to 45 minutes. The next day (post op day 1) went well. He ate, drank, even sat up and played. We worked on pain management and overall had a good day.

Toward the evening though he seemed to be becoming more restless and agitated. His blood gases showed an increase in lactic acid. We upped his pain meds a bit.  Jackson stayed overnight and said it was simply horrible. Twice he rolled on his stomach, he screamed out all night every 30 minutes and it sounds like he had some mismanaged care with events that the nurses should have alerted the docs about. The attending doc was a little upset they didn't let her know about his discomfort but I think Jackson got to the point that he let the nurses know what he wanted. They do some crazy things I'm the PCICU that for the babies is not as crazy as it is for the kids. Like 3 am baths, midnight X-rays, conversations at bed side, etc. Jackson pretty much put a stop to it. I came this morning and have gotten him down for longer periods of sleep but still only 45 minutes. He is having more chest drainage so he is having to have a medicated fluid replacement. He is getting morphine hourly which is making his face itch and he's about rubbed it raw. I'm hoping an ointment I brought from home will help with that. Dr. Bradley, who I now want to call Dr. Smiles said he can go to the floor today which is great because the whole family can be in the room and he will have more quiet. Before he goes he will get a bandage change on his chest which should be lovely (sarcasm) and pull his arterial IV line in his wrist.  His morning nurse and I have discussed some mild sedation for this since he is already so agitated. 
The big thing now will be getting some food in him. Although he ate yesterday and a little this morning, but he needs to eat more volume and fats so we can see if he has chylothorax, which is a fatty drainage from thoracic ducts. It is a common side effect anytime we have our chest cavity opened up. Drainage is what is going to keep him here. 
Pitiful looking guy this morning. 

Wednesday, August 6, 2014

Post Op

Things have been moving much more quickly than they have with the past surgeries. Shortly after being admitted into recover Dr. Bradley wanted to wake him up! He was off sedation by 4 pm, and being restless and off the ventilator by 6 pm. He is loaded with IV lines, stickers, chest tubes and tape. Currently they have him on dopamine and milrinone both for heart function, which they are weening from the surgery; heparin and a slew of pain meds. The great news is that his vitals are AWESOME!!! It took a while but his blood pressure finally came up! Heart rate is normal as well as his breathing which has gotten much deeper. His venous pressures look great which is something we will be watching for a while. The best thing of all is that his oxygen stats are in the low 90s!!!! Yeah- nine zero!! He is so pink!! His lips, toes, fingers and eyes look so good! Crazy what a little oxygen will do for you!!
Tomorrow he will be more awake and can start drinking water. If he can hold that down they will allow him to start some food!! I can't even imagine the pain he is in or how hungry and thirsty he must be so I'm ready to get him anything he needs!! Hoping we can get to 8D (the step down unit) and his chest tubes drainage remains normal. 

In recovery

We just talked to Dr. Bradley and Jack is in recovery!!! Dr. Bradley smiled as he talked to us, and y'all when this man smiles it is a BIG deal!!!! He said he was happy with the connections and his lung pressures!! I hugged him and thanked him and he giggled a little! We are waiting to see Jack now and should go in between 1:45-2 pm. 
Thank you for all the prayers. Please pray for his continued recovery!! 

He's off to surgery

He woke up this morning at 4am with lots of laughter as usual. He played while we got our things together and talked and laughed about the car ride. His joy helped Jackson and I but we couldn't help saying to one another "Poor guy doesn't know what's coming. "

We met the rest surgical team this morning. Jack was in really good spirits but after discussing pros and cons with the anesthesiologist we decided to give him some "happy juice" to help with any separation anxiety. 
We are waiting now to get our pager which will give us updates throughout the day. We can't wait to get that sweet baby back into our arms again. Thanks again for all the prayers!!!

Tuesday, August 5, 2014

It's a go

Well we have just finished our full day of Pre Op at the hospital. Everything went well and we got the go ahead for surgery tomorrow morning. We check in at 5:30am and meet with anesthesia, respiratory, surgical staff, etc.  The surgery will take anywhere from 5-6 hours and we probably won't see him for another hour after he is done. The first 1-2 hours of surgery will be getting through the scar tissue and the procedure takes 4. The plan is to take him off the breathing tubes around dinner time and help him rest through the first night and following day. 
Please pray that all goes well and his body is accepting of the new changes. We have some challenging days ahead with this sweet guy. Fortunately today he won over the staff loving on each one after his blood was taken, echo, EKG etc. I guess it definitely can't hurt!! Thank you for all the love, prayers and support so many of you have given our sweet boy!!!