Todd, a parent of another child with Tetraology of Fallot, called it the CHD (congenital heart defect) Tango. The two steps forward and three steps back involved in this process are inevitable. Yesterday I purposely avoiding sharing the biggest blow to our day. We wanted to know for certain what we were dealing with before we shared any information.
We were greeted with not only the news of lung issues and the need for another chest tube, but we were told that Brinkley would require a pace maker. Another surgery and more time under anesthesia and pain meds was the last thing we wanted to hear. We wanted to hear that the breathing tube was coming out and we were making progress toward moving out of ICU and being able to hold our baby.
There were many questions and reservations going through my mind. We were not able to speak directly with the surgeon or one of the cardiologists at that time. This is when I put the call in to Dr Raunikar. After talking with him we were more at ease with the decision and prepared to move forward. This morning I was able to speak with the surgeon and the plan was to proceed with surgery tomorrow around 2pm. At that time Dr Bradley, the surgeon, turned down the external pace maker to its lowest setting.
With the pending surgery in mind, we rented a car and Bryan headed home around noon to get Reese and bring him back to be with us. Not knowing how things would progress, we were unsure if we would have another chance to get him. The plan was for them to stay at home tonight, gather up some things we need, and head back this way in the morning. I stayed at the hospital most of the day and Jordan joined me later in the afternoon.
Around 5 pm we left and came back here (Cross Bridge house) for dinner. After the shift changed at 7pm I headed back to the hospital to meet the night nurse and get the latest report. Tara was our nurse again tonight and she was pleased to meet me at the bedside with great news! After watching Brinkley for the day, the surgeon feels like he is able to maintain his blood pressure with the heart pacing as it is now. This means that a pace maker is not necessary!
The Fellow on duty tonight talked with me about the decision and said that the next step is to work on removing the breathing tube tomorrow. We will continue to observe him after this and make sure that this does not affect the pacing. If there are no problems, they will dismiss the plan and we will continue with aggressive treatment for the lungs. (There was some improvement today and we started antibiotics to deal with some bacteria that was found.) The lungs can be treated more aggressively without the tube. This means we could potentially be holding our baby this weekend and even possibly moving out of ICU.
Brinkley made it clear today that he is ready to be held! I've told his nurses that he loves to be snuggled and that is what he needs more than anything. While I was away today he got upset and had to be lifted up to adjust his positioning The nurse said as soon as she lifted him up as if she was going to hold him he immediately stopped crying. Later, after I returned, he had to be lifted up again and the same thing happened. My baby needs love! I am more convinced everyday of the importance of love and nurture in his recovery.
With the two steps forward today we just may be inching closer to that snuggling he and Mommy both want. After this I may never put him down!