We're baaaack.....

Well, back to MUSC that is. We were discharged Wednesday and in my excitement to take my sweet boy home I failed to ask more questions about his fussiness and pain level. The docs had been working hard to manage his pain and I kept thinking maybe it wasn't all pain, maybe it was all the poking and probing. Well once we were home Wednesday evening he was still exceptionally fussy and at timeS inconsolable. I thought maybe getting back into our home routine would help, nope. He cried every hour. Thursday and Thursday night were no different. Friday morning I noticed the bottom section of the strips that hold his incision together looked bubbled up. He had a cardiology appointment that morning so I was glad it showed up before we went. When I unbuckled him in the parking lot I noticed he had either a little blood or brownish substance that had leaked through his clothes right in that spot. I tried not to worry, even though I knew it wasn't a good thing. At the appointment Jack's cardiologist pulled the strips off and a brown ooze began pouring out. Dr. Williams thought it would be ok not to send him back to MUSC and started Jack on some antibiotics and wanted to keep a close eye on it. I was relieved and even more so that the echo of his heart looked great! Well Friday night began very uneventful. Jack seemed to be happy and slept great until about 1am (probably exhausted from the previous nights). At 1 he woke up screaming. It took me an hour to get him calm all of which I paid close attention to his breathing. It seemed like he was having difficulty taking a deep inhale. Once he calmed his breathing sounded normal but slightly rapid. His breathing continued to sound "off" all morning and at 10am I decided something just wasn't right and it was time to make some calls. Fast forward, and here we are. The verdict is the incision infection does not look terrible but he needs a strong course of antibiotics and observation for a few days. They tried for a few hours last night to get an IV for the antibiotics, but Jack has the tiniest veins. So they have given up on that and he has to get shots everyday we are here. They said the shots hurt because the serum is really thick. Poor guy, as if he isn't in enough pain already. I hope to take home a super happy healed boy by mid week! We will see what the docs say, but I know they will take care of us here!

Some pictures too!

Oh yes, Scout (the green dog) came to surgery too. Wouldn't leave home without him! Best toy ever!

Post Op Day 4

So sorry for my HUGE posting delay. I wrote a post on Friday and it was accidentally deleted. I have been too tired or busy since to write up a new one. Well, we are on 8D! This experience has gone much more quickly than the first but has been just as hard if not harder. I will give you a little recap of what has been happening. Post Op Day 1: Jack was taken off the ventilator. I was so excited but it made me realize how much pain he was in because he could actually express it. He cried, hard for the first 15 minutes or so until he was given some pain meds and something to calm down. That was tough. He did not feel good. Post Op Day 2: Finally started feeds. I think he was hungry wouldn't you say? Feeds were started at 5cc an hour! So slow! They were progressed 5cc every 3 hours. As you can imagine I am so nervous when it comes to feeding ever since all his tummy trouble. I do not want to go through that again, especially with an open chest. Post Op Day 3: We reached full continuous feed volume and he did great! The kicked us out of the PCICU and pulled his RA line, arterial lines and chest tube! I was very surprised about the chest tube! but it had not been draining. That is awesome because it says a lot about our drainage on the next surgery! And today. We've made it to our room and even though the nurses will be in and out all night, I think I am going to sleep great now that I can see him at all times! He drank about an ounce from a bottle, but I am so happy he is even drinking from one! The g tube has been such a blessing eventhough I have cursed it so many times! I truly am thankful for it because it has sped things along. I still haven't gotten a smile and I know that is because of the headaches. I was told he would have headaches but they are so, so, so terrible. He will wake up from a peaceful sleep screaming, kicking and rubbing his head. Poor guy. The nurses have told me Jack is better than most of the babies, and I could not imagine it being worse! So we will probably be heading home Wednesday or Thursday!(I hope.) They like for the pain to be managed first. In my unprofessional opinion, we are not there yet. I have to get my smile! Maybe tomorrow!

It's over!

At last! Dr. Bradley just came and said Jack's surgery went great! We will be seeing him in the PCICU in about 30 minutes and I am itching just to get my eyes on him again!!

I was so relieved when I saw Dr. Bradley smile during our surgery debrief. I just had to hug that man. I know it isn't the first time a mom has hugged him for helping their baby. :)

Surgery day

We just left our sweet boy. He was smiling and laughing this morning, like always. We will keep updating throughout the day. It will be a while before he is finished.

Our prayer:
Dear Lord, please keep our sweet baby safe. Please be with Dr. Bradley, keep his mind clear and his hands steady. Please be with all the doctors and nurses that will care for him today and help them to do their best. Please send a team of Angels to watch over him, be with him and comfort him. Thank you for giving us such a sweet blessing. Amen.





Ready for his big day!

Surgery Thursday

So there has been a slight change in plans. There was an emergency in the PCICU and one of those babes needs operated on. So Jack is being pushed to Thursday, 7:30 am.

I was in pre-op today until after 6pm. My head has been spinning with all the details of the days ahead. The outlook is very good and there are a few things we will be looking out for. One, a fatty drainage around the heart that would be treated with a special diet. The other is part of Jack's anatomy that could cause him to have a heart attack, but they do not expect this outcome. Just like anything they have to tell you the worst scenario. Other facts I learned were he may be irritable from a headache caused by the change in the way the blood flows in his head and he will actually be bluish until he heals. Sorry I am so vague on details. There is just so much and I am still trying to put it all in order! I can answer questions, though. Please let me know any specific questions.

I could kick myself for not taking a picture of him today. He has so much personality. He only slept a max of 30 minutes the whole time we were there! He did not want to miss greeting anyone who walked by. His favorite was the attending who was barley able to wash her hands because he was saying what sounded like "hey" over and over. When she acknowledged him he would just laugh! It was absolutely precious!

Thank you all so, so much for your support and prayers. We are so lucky for each and every one of you!

SURGERY WEDNESDAY

Nope, I don't mean next Wednesday. I mean this one, as in day after tomorrow. November 30th. I got a phone call at about 7pm and on the other end was one of those voices you never forget. He didn't even need to tell me who he was, it was Dr. Bradley. He presented us with the date and the other option was to wait until sometime in January, he wasn't sure when he could do it. He strongly urged us to go forward with it because the shunt won't last forever. We decided if that was what was best for Jack, then we would do it. So we are headed down tomorrow for his preliminary work up and surgery will be Wednesday morning. I don't have many details yet, and about a thousand questions so I will let you all know more tomorrow.

Until then, please pray.