When we plan out our motions for the day and the weeks to come based on what we think we know or what we feel is best for our situation, we are typically met with a plan that is completely opposite from our ideas. And thank goodness!!! Tuesday morning came very early. I didnt sleep an hour consistently, and had to be up and functioning around 4:30 if we were to get to the hospital for surgery prep. By all accounts, we had every reason to feel a repair was a high possibility. As we met with Dr. Forbess to run through some last minute Q & As and sign consent forms, he mentioned to us that he had given Heaths images a lot of thought and had a few ideas on ways he could approach the repair. The anesthesiologist gave us an estimated surgery time of 6-7 hours, and we then began our wait. Of course, we had to smooch on his cheeks before handing him off! ...that part will never get easier over time. Most things, you can become a pro at and they can feel like just another day after you have done them so often. Kissing your baby, or child even, saying goodbye, and handing him over to someone else is not one of those things. A pro? Yes, we absolutely are quite seasoned at most of these procedures and events. But, it will never feel old-hat. We settled in to a cozy room reserved by the Pastoral Care team, allowing Bert, my parents, his parents, and me to stay together without the distraction or intrusion of others, and we tried to maintain conversation as we waited for those phone calls to roll in every hour to hour and a half. The first call came just over an hour later and we were told that Heath went under well, that he took the anesthesia like a champ, and he was comfortable. The down side to this being his third open heart surgery is that it becomes harder and harder to get through the sternum after all the scar tissue from surgeries past have formed. So, while that took a bit longer than planned, they were in and ready to go. Minutes felt like hours, but we eventually got our second call from the OR. This call changed the course of our original plan and threw me for a loop that was more difficult to process than I had hoped. These calls are made to be brief, so we were basically told what was happening and that Dr. Forbess would talk with us after surgery was over. Dr. Forbess is doing a mechanical valve replacement and we will call you about another hour or so to give you the next update. Ok... there was no conversation to be had, and I knew one didnt need to occur. He was an incredibly skilled surgeon and he has our sons absolute best interest at heart. There had to be a reason, and I didnt want to waste time discussing it. In the back of my mind, however, I was replaying past conversations about the plan and distinctly recall being told that he was encouraged to consider the repair again because Heaths diastolic pressures had gone down to near perfect. So, what changed? I knew I had to just sit back and wait. Thankfully, I have become a pro at waiting. The 6-7 hour surgery turned out to be only about 3 1/2- 4 hours. We stepped out to see our sweet boy being rolled down the hallway en route to his recovery room in CICU. He was beautiful!! He looked warm and restful. He was pink! Seeing your baby successfully out of a major risky surgery will brighten any parents day, but to a Hypoplast mom- having a pink baby and not seeing blue lips and nails was a miracle! They team wheeled him away and we waited for Dr. Forbess to give us a run down on how it all went and what to expect next. He began telling us that Heath was born with a congenital heart defect... which we clearly already knew. However, he was referring to a different one besides HLHS. Turns out, Heath was actually born with an additional CHD stemming from his tricuspid valve. Heres a breakdown: the tricuspid valve is made up of 3 leaflets, the anterior, posterior, and septal. The septal leaflet is the one attached directly to the heart wall. That leaflet was majorly defected. It was incredibly abnormal and had only grown worse over time. Because of the abnormal leaflet, the other two have been compensating for it Heaths whole life. In doing so, they have also become very stretched and a problem, themselves. Once Dr. Forbess was able to see Heaths valve first hand, there was no question what to do. The valve was not repairable. But the shock of that news didnt stop there. We learned a pretty scary fact: the majority of babies born with a valve that is as damaged as Heaths valve do not make it 8 months... Their heart cannot withstand the strain. The risk of surgery is usually much too high. We knew that Heath was our little miracle, but we learned that it is so much deeper than that. Heath is statistically a miracle, and it is only by the grace of God that He chose to keep him here. And not only keep him here, but make him a serious rock star! It is beyond evident to our family, that God has just as big of plans for Heath as He does for our other boys. I am one very proud mommy!!! Once we were able to visit him in recovery, we spent so long just staring at him. He was so peaceful an looked so healthy. You take for granted what a healthy child looks like when you have one and have never seen differently. I can now say that for the most part, none of my boys look like they have eaten boxes of blue popsicles! Hahaha! The reality of his recovery time, though has been much harder this time around. His valve seems to be working well, and with the exception of trying to balance out new flow volumes, it is doing its job. The pain management is whole different ball game. Heath is on about 4 different types of intense narcotics as well as sedation medicine, heart medicine, blood pressure meds, blood thinners, and has many IVs in place for lab draws and constant drips. He has pacing wires in and chest tubes, he is still on the ventilator, and covered in leads. It is safe to say he is a sight! But with each hour that passes, we get a little more accomplished and are able to see him truly show signs of progression. Over the last two days, Heath has been lowered to 2 liters of oxygen, his pacing wires have come out, his central line and arterial line have been removed, and he has shown oxygen saturations in the high 70s-low 80s. We still have chest tubes in and his IVs are still in each foot, but all in all, we are pleased with his progression. He definitely has an appetite and is a huge fan of water and crushed ice. I am starting to see glimpses of the old Heath and that is the best feeling! I was even able to hold him with some help from the nurses. I know our road is still long, but we have already met many goals that were in place for Heath, and like everything else up to this point, we will take one day at a time. It is no small thing that all of you had a major part in this through your prayers and encouragement. I cant wait to share with you more accomplishments we have as the days progress. Keep praying, talking, sharing, whatever!!! It means the world to us!
Posted on: Thu, 18 Sep 2014 20:45:14 +0000
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