Surgery tomorrow

Yes, again we've been pushed to tomorrow. Not too big a deal in our eyes because another sweet baby needed special attention from these amazing surgeons. Jack's scheduled time is 2:30pm.

Jack is such a remarkable baby. He has been a pincushion and had his feeds withheld for hours and made no complaints. His biggest thing is his poor chest hurts when he tries to laugh or if we move him. I hope this surgery will bring our sweet boy some much needed relief.




Mr. Pincushion. Beautiful as ever.

Location:Ashley Ave,Charleston,United States

3rd times the charm?

I sure hope it is! We were discharged Monday from MUSC and readmitted today. His infection site keeps changing and Jack just isn't Jack. So we drove up to the cardiology clinic and it seems either the infection or pressure in his chest (I think from all the crying) or both has caused his sternum to separate. I think it has been like this for quite some time.

Please say a prayer for Jack because he is going back to the OR tomorrow afternoon to clean out any infection and re-close his sternum. I hope this is it because this sweet guy doesn't deserve anymore trouble. I hope the next few years of his life are very pain free and happy!

All this and I can still squeeze a smile out of him every now and then!

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!