This post is long overdue...it has been a long week. Stephen is back to himself during the days but the nights have been a whole different story. His new pattern had been waking up every hour screaming. It has been exhausting to say the least. If it was any other child I am sure we would be frustrated with them but we pretty much just feel bad for him. He had his post-op appointment with the surgery office on Monday and they said this behavior is normal and will eventually go away...lets hope so! Other than getting no sleep he is doing so good. He is smiling, cooing, blowing bubbles out his mouth and sticking his tongue out to rub it over his 2 new teeth...my personal favorite to watch =0) He is a little more clingy, and prefers to be in my arms, but I figure he deserves the extra attention for all he has been through. Our church has been blessing us with meals which has been amazing. I don't think Stephen would let me put him down to prepare anything nor would I have the energy to cook.
After his post-op appointment they gave us the green light to start baths back up and let the steri strips come off. I forgot how the fresh incisions look. I was a little worried at the red ring around one of his chest tube areas and took him to the pediatricians office to double check that everything was normal. Last time we were in the hospital for this part and I remember thinking the same thing, and the nurses assured me then too it was normal, but I went with the "better safe than sorry" motto. It was a little irritated, but not infected, so they prescribed an antibiotic ointment which I have yet to use. The next morning it looked much better so I think it is safe for now.
He has a follow-up with cardiology on September 10th and after that I have no clue how closely or not closely they follow him. I get the feeling it may only be a few times a year until his next surgery if all goes well and he has no major illnesses.
As for prayers...
Please pray that he continues to heal well. He has another month before the chest bone is fully healed.
That the incision sites do not get infected.
For sleep...we can all use it!
For his overall health. We will be entering cold and flu season and we just pray that he will remain healthy and not have to fight off nasty bugs.
For his heart. We are often reminded of how truly blessed we are that he is as strong as he is and we pray that God would continue to strengthen his heart as it works extra hard to support his body.
I hope to have some pictures up in a few days...but first I need some sleep =0)
Much Love
Kim
continuing to pray <3 when would he need another surgery? & why? is that because as he grows he will need a more permanent setup?
ReplyDeleteHe will need the 3rd surgery between 3-5 years old. The first surgery reconstructed his heart to work off of 2 chambers and put a temporary shunt int that diverted blood to the lungs. The 2nd surgery took out the shunt and connected his superior vena cava into his lungs. The 3rd surgery will also connect his inferior vena cave to the lungs which will be the last surgery in this specific series of 3. They wait for the 3rd one until he is about 32-34 pounds so his lungs will be able to handle the pressure of his new blood flow. It is crazy...but they bipass the lungs and flow the blood directly into his lungs though the pressure in his veins.
DeleteI'm so happy to hear how well he is doing. The night time stuff stinks, but we can sure work at praying that away. Hang in there. Hold him all he wants, everything else can wait. :)
ReplyDeleteThanks for the encouraging post. We'll be praying for sleep.
ReplyDeletePsalm 127:2 WEB
It is vain for you to rise up early,
to stay up late,
eating the bread of toil;
for he gives sleep to his loved ones.