Trach Bootcamp

I'm not going to lie and say I'm not disappointed. David and I (and I'm sure many of you) prayed and prayed that God would allow us to take Luke home without him needing a trach or a ventilator. Luke's been through so much already - we've been through so much already - can't we just go home and get on with life as normal until we re-enter the hospital when Luke is 9 months for his second surgery? Surely God has done much more miraculous works in Luke's short life than strengthening his airways. And wouldn't God's name be praised much more readily by the doctors if they were expecting Luke to need a trach and then miraculously didn't have to? Nonetheless, I prayed that God's purposes would be fulfilled in whatever happened with Luke's airways.
We waited for a week and a half. Instead of seeing what we hoped, Luke's airways getting stronger and a decreased need for a ventilator, something very different began to happen. David and I gradually became accustomed to the idea of caring for our son with a trach and a ventilator and a G-tube. We started worrying less about the trach and everything involved with it and anticipating with excitement the day that Luke gets to come home--whatever equipment is attached to him. I fought it. I told God that I didn't WANT to be okay with it, I wanted him to FIX it. I told him I'm too tired to do this too.
The doctors continued to tell us they were fully expecting that he would need a trach. They continued to tell us that the condition of his airways is not something that can be fixed in a few weeks with rest and good nutrition. I held faith. I always reminded myself that God is in charge, not the doctors, and God can fix his airways with rest and good nutrition if he wants to. Dr. Kao (our cardiologist) was the one who suggested that we wait two weeks and see if he could be successfully extibated and function without breathing support. Eventually the other doctors convinced her that we needn't wait that long, that nothing will significantly change during that time, so they planned to take him down to the OR Monday, Aug. 3. I knew that if God was going to miraculously fix his airways, that He could do it by Monday, he didn't need an extra 3 days.
Then Saturday rolled around. David and I were on the way to the hospital that morning when we got a call from the charge nurse. Luke had gotten a hold of his breathing tube and dislodged it. Thankfully, Dr. Mendeloff (our heart surgeon) and Dr. Tia (the cardiac intensivist on the floor that day) were right there. They made the decision that since the breathing tube was out, that they'd give Luke his extibation trial. He failed. He lasted a few minutes without the ventilator, but was simply working too hard. No two way about it, he can't breathe on his own yet. They decided that it would be too much stress on Luke's system to give him another extibation trial on Monday.
Monday afternoon they took him down to the OR. This being our 6th trip to the OR, it was much easier to kiss him goodbye. I think Luke is even getting used to going on field trips. Dr. Hermann (pediatric surgeon - doc who put in Luke's dialysis catheter and later took it out) put in a G-tube for Luke to receive feedings and also did a Nissen procedure, which basically created a valve between his esophagus and his stomach so he can eat (eventually) and things can go in to his stomach, but it greatly reduces the risk of reflux (spitting up) and aspirating that into his lungs. While Luke was under anesthesia, Dr. Hermann was also able to complete Luke's circumcision. Then Dr. Chung (ENT surgeon - stands for Ear, Nose, & Throat) put in Luke's trach. Everything went well with no complications. We are thankful that everything went so smoothly.
In the past when families have a trach put in at Medical City, after the child recovers from the surgery, the child will move to Our Children's House at Baylor, a rehab facility, to allow the family time and instruction to learn how to care for a child with a trach. Medical City just rolled out a training program for parents. We are their guinea pigs. Hopefully, if all goes smoothly, this program will take the place of or greatly reduce the amount of time we have to spend at Baylor. They haven't given us a firm time frame on when we will be able to take Luke home. We're looking at hopefully getting our home medical equipment next Wednesday or Friday. Then maybe a week or a little more getting Luke adjusted to his new ventilator. Then it shouldn't be too much longer before we're headed home! David and I are spending most evenings preparing our home for Luke's arrival: finishing touches on his room decorations, getting air filters to clean the air in our home, Uncle Andy is even giving us his Roomba (robot vacuum!) to help out with the cat fur in between thorough vacuumings. Luke is gong to have a lot of equipment that he must be attached to or within arm's reach at all times, so we're even going to get a wagon to pull him around the house in so I can still get some things done around the house rather than being at his bedside 24/7. During the day we're learning all about how to take care of Luke's trach and g-tube sites: cleaning, changing equipment, assessing for problems, etc. We have fantastic nurses who are also our instructors. Dr. Mendeloff (our heart surgeon) even stopped by for a visit today and watched as I demonstrated what we learned in trach bootcamp today (talk about pressure!).
God didn't miraculously fix Luke's airways this time. Could he? Yes. Are we disappointed that God didn't act miraculously at this time and we have to take a bunch of equipment home? Yes. Does this mean that we didn't pray hard enough or have enough faith? No. David and I are confident that God sees the whole picture. He sees much more than we can, and we are convinced that his purposes will be realized as long as we surrender daily to him and act faithfully.
We are grateful for your continuing prayers for Luke's healing, as well as for strength and endurance for me and David. We feel pretty confident that we can do this, but we're digesting a lot of very critical information every day, and it's pretty draining. We love you all and appreciate your prayers and support.

Blessings,
Rachael & David