We met the surgeon for the first time that day and oddly felt at ease. Maybe it was the way they spoke to us, maybe that we were at a more experienced hospital this time. He explained everything to us, went through every step of the surgery and what to expect. Shook our hand, smiled and left to prepare to scrub in.
It had been a long few weeks since seeing my husband, and felt like even more to him since he hadnt seen his baby boy. Lucas had only held Waylon once since he was born, the day before his first open heart surgery they handed him over to his daddy.
A nurse, and two anesthesiologists came in to wheel him to the OR. Still holding him tight, rubbing his head I kissed him and put him back in his bed. Gathered our things and followed them down the hall way to the double doors. It was as far as we could go with them. Before making it out the alarms sounded! They had a new security program and someone had forgotten to call the front desk to have his ankle bracelet deactivated. Security ran in, everyone laughing at the silly mistake, and for one split second I thought of running off with my lil one. But I knew this surgery had to be done to SAVE him. He watched me all the way down the hallway and starred back as they turned the corner to part with us.
I had spent months in the hospital with this once fragile baby, who now had a HUGE personality and who LOVED his momma. They were taking part of my own heart with them, wheeling it away and I didnt know when or if I would see it again.
We left through the double doors, I choked back tears but held it together. We went to get coffee and a bite to eat before heading to the waiting room. The first lil bit takes the longest, getting him sedated and new access lines in to administer everything, breathing tube placed etc. A sense of calmness was over me, even though we had just handed our baby off, its unexplainable really.
Sitting in the waiting room we watched goofy videos on our laptop (its a lifesaver really!!) and read through crazy things that made us feel old. ANYTHING to keep our minds off of the matter at hand. We watched families come and go, we watched tears from scared mothers flow and we counted the hours waiting for updates, that came like clock work and each one was good news. We spoke about our other two kids who I hadnt seen since October, it was now January. We talked about family members and the craziness back home, and the fellow heart mommas who loved on me (and I loved on them) while being here. How they helped me through some tough times and we created a strong bond together, like family.
News came that he was closed up and the surgeon would be in soon. All had went well and we were excited to hear the report and see our baby boy within the next few hours. Our surgeon walked in, hes pretty cool, looks like a laid back samarai surfer dude, and we loved him!! He explained that the cutting took longer than the actually redirection/repair because of a procedure done at our last hospital and all of the scar tissue that had accumulated. He was very pleased with how it went. Later in the room it was explained to us that his heart rate was a bit low and that he had to be shocked during surgery because it got so funky so his pacer wires would stay in until his heart rate was at a safe place and there were no problems. But he looked AMAZING, compared to the first surgery, he was barely swollen, his chest was CLOSED, and he only had 2 chest tubes in.
Waylon did wonderfully! And they were able to do a Hemi-Fontan instead of a Bi-directional Glenn (explained by the surgeon, the difference is more of the way things are sewn in together during surgery for blood flow, and has a better success rate and easier for better Fontan surgery/success). His breathing tube was out early the next morning after surgery which was a big deal since he was oxygen dependant for so long, and had a hard time coming off of the vent. He was put on CPAP which is a crazy looking contraption that forces air in through the nose but is less than the breathing tube down the throat. He was off in no time and was doing great. Our only hiccup was a day before possible discharge Waylons xrays showed some plueral edema (fluid around lungs) and they were concerned. When put into another room I noticed redness around his chest scar that was healed together. He was put on antibiotics and responded quickly. We were finally discharged a month later.
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| The red around his chest was the infection that was being handled with heavy antibiotics |
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| 6 days post op! |
After 5 long months in the hospital our son was finally well enough to come home (3 in our local hospital, 2 in Ann Arbor Michigan).
Thank you so much to the wonderful nurses, doctors, nurtitionists, therapists, surgeons etc, from C.S Motts childrens hospital. They were all terrific and helped our beautiful baby boy have great quality of life. We are going back in march for an echo from his local cardio and sending off the info to Michigan so they can decide when to set up a heart cath and 3rd surgery for Waylon. We are nervous, but feel he is in the BEST hands there. (Would also like to thank the wonderful nurses at UK who took care of our baby boy, there may have been a falling out of sorts between us and the hospital, but you guys did your best to care for our boy and you showed him nothing but love, thank you!). Because of a wonderful medical team our baby came home finally, he has quality of life, he keeps people guessing just how he does it while being so LITTLE. We get told all of the time by local doctors they never expected him to look this good, they didnt expect him to make it.
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