Post Glenn (Steele's Second Surgery) Sucesss!

Yes, the bears are back! 

Tuesday was a test of valor for Mr.Steele and his parents. We arrived at the Ford Family Surgery Center at LPCH at 6am, checked him in, and Rachel walked him into the OR to prep him for his anesthesia. I waited with Ryleigh in the patient waiting room until Rachel returned to meet us. At the reception desk, you are assigned a number which is attached to the patients name and updates about current patient progress. This is posted on a large monitor in the waiting room. In addition to the monitor status, you are assigned a "Surgical Navigator". The navigator has your cell phone number and will call you with updates every two hours or so with information that the OR has about the surgical progress. The waiting room is a terrible place to hang out. Everyone is nervous and the hospital chooses these unavoidable televisions to watch. We notified the front desk that we would be on the 3rd floor of the hospital if they needed to reach us. The 3rd floor is quiet, has lots of natural light and comfortable furniture, a much more tolerable place to wait in purgatory.

We visited briefly with the resident Chaplin, cited a very thoughtful prayer for Steele, and everyone that is involved with this day. This did provide some relief from the stress that we were under. Surgery day has this strange feeling for a parent. I am not in the OR with the tools, but I have these visual pictures like a film reel going through my mind of what it looks like, which I'm sure is not at all what is going on.  All the same, you feel so isolated and removed from your child even though they are so close in proximity. One of the skills that helps me loosen the knot of anxiety through all of this is the background knowledge of what Steele has been through. He has survived the first open heart surgery and he made a miraculous recovery in the CVICU, so his mind and body are tough as hell. There are low moments throughout the day and when that phone rings for the updates, it makes my hands tremble.

The important thing to remember that day is take care of yourself. Keep a schedule for breakfast, lunch, etc...and drink lots of fluids. Bring something to distract you from looking at the clock. Thank goodness for Netflix. Take breaks to walk around and go outside to breathe. I would also recommend checking in with your significant other or partner that may be there with you that day. If possible, do not go alone. If you decide to go alone, try and find someone at the hospital that you can check in with. Life Specialist, Social Worker, Grounds Keeper?? Someone to keep the pace of your day going strong.

Around 12:30 pm, we got the final phone call that Dr.Maeda would meet us outside of the CVICU to discuss Steele's morning and how the surgery went. We sat out in the waiting area as they wheeled him into the CVICU, but we could not go in just yet. It was a good feeling to know that we could see him at least, but then the anxiety kicks back in. After about 15 minutes Dr.Maeda came out and visited with us. He was happy with the final results and all the work that was scheduled was accomplished. Steele has the Glenn done and a patch in part of his Pulmonary Artery that will allow more blood flow to his lungs. Shortly after his visit, the Anesthesiologist came out to check in. His words were "Smooth Sailing" & "Steele was on good behavior". The "good behavior" piece means that he did not have any adverse effects to the sedation or pain management, there were no additional interventions needed. Good news overall!

We then entered the CVICU and found our baby Steele. He was heavily sedated of course, but his skin tone and numbers looked very good! Again he is hooked up to about 20 machines providing the necessary medications and monitoring along with the abdomen drain tubes, but we have been here before, so it was not as bad of a shock as the first time around.

Dr. Maeda, his surgeon, has visited a couple of times and said that Steele is not out of the woods yet, but he seems to be adjusting to the new circulation and will be thoughtfully and very closely monitored over these ensuing post-operative recovery days. He has still got several meds going in through a central catheter that need to be weaned/turned off before the catheter can be removed and we can hold him again, BUT he looks good and is even giving us a few smiles here and there. Hopefully, we can get him off the oxygen before discharge, as that will make the trip home and our overall mobility much easier, but Steele will let us know what he needs and we will trust that. Steele will certainly go home on methadone and ativan, and it will be a big day when that is finally weaned. Once again, Steele has to figure out his new plumbing and fight to keep everything in order. His recovery could take up to two weeks and if all goes well, we pack up and head North to Portland.