Having twins is a daily balancing act on a good day; as I would imagine it is for any parent with more than one child. However, the attempted act of balancing time between one in the PICU and one at home (at Gran & Poppy's) is impossible. As desperately as I want to be in two places at the same time, obviously that is impossible. Letting go of control and relying on others for Kennedy's daily care and needs is difficult, and entrusting Drake with a new nurse every 12hrs is unacceptable. We are so fortunate that Kennedy is able to be with my parents, and that they know her daily routine. We are also blessed to have Lisa as our home nurse who has gone above and beyond staying with Drake allowing us to spend some much needed time with Kennedy.
Since Drake's tracheostomy surgery on Thursday, so many doctors and nurses have been concerned with our emotions about life with a trach. Much to their surprise, we are handling that aspect very well. If a trach is what he needs to breath and have a better life, then that is what he needs...and we adjust. Brian and I are ready to learn what we need to know for daily life and care so that we can get our baby boy back home. Our concern since his surgery was and still is the pneumonia. Although he isn't out of the woods yet, we are pleased with the progress he has made so far.
His 1st trach change will be done by his surgeon and that will take place either tomorrow or Thursday. We will be present for this procedure, as we will be learning for his future weekly trach changes at home. Gran, Poppy & Lisa will be learning trach CPR tomorrow evening here in the PICU. Brian and I will be learning this weekend. They like to keep the class sizes small and the weekend works better with Brian's work schedule. Today they began weaning Drake off of the paralytic medications. A smile popped on my face as soon as he squeezed my finger! I was surprised how quickly he began moving his appendages once his meds were weaned by 0.1ml. Once his trach has been changed by the surgeon, they will bring him completely out of the paralyzed state. We are preparing ourselves for an angry baby once this happens. He will still be on pain medication, so pain is not a worry...but we don't think he is going to be very happy about the trach or the ventilator. Hopefully he will show everyone that he doesn't need the ventilator. He started back on his Pediasure last night and tolerated the tiny feeds really well; so today they increased by 5ml every 4hrs. By tomorrow he will be on full continuous feeds of 40ml per hour. We were told his morning chest X-ray still looked a little "fluffy" on the right side, but looks to have improved from yesterday. I guess "fluffy" is better than "hazy" in doctor terminology.
Tomorrow morning Brian and I will be meeting with the person in charge of Our Children's House at Baylor. This is where Drake will be transferred once he is pneumonia free. At this facility we will be living on a floor dedicated to trach patients and learning trach care. This is a transitional environment to prepare families and make them feel comfortable meeting their child's needs before going home. This will be much less restrictive than the PICU, and Kennedy will be able to visit her brother!
For the next several weeks, our beam will be teetering in Drake's direction because he will be requiring more of our time while we learn his trach care; therefore, we are going to need to have a very special mommy-daddy-Kennedy day once we are settled back in at home.