How does one even begin to write an "update" about that one time when their kid almost died? I'm not sure I really have a way of starting this particular update with anything other than, "here goes nothing".
I truly am at a place where I have been able to step back, take a slight breath and will now attempt to let y'all in on one of the darkest 4 days of my life. Please just know that I don't write any of these updates for sympathy, pity or to get attention. I do not wish to come across as one "bragging" of what we have been through or how much we have had to deal with etc. I write because it releases tension for me, it allows me to experience and learn from each step of this journey and I am able to rewind, see things from a new perspective and I am able to give God glory where it is due.
So, I realize I hadn't updated the blog in quite awhile anyway, but considering all the crazy lately, I am just now getting to a place where I can sit and unload. Bear with me, this particular post will most likely be quite lengthy.
Thursday the 10th, began the longest three days, ever. Thursday the 10th was supposed to be a routine heart cath day for Noah. They were hoping to get some data, possibly put a stint in his shunt and that would allow more bloodflow through it, etc. They got him prepped, they got down to the cath lab and they began. I got a call a couple hours later and she said that they were not able to find any access in order to do the cath so they would be sending him back up to his room and that was that. Dr. Quo came in and let me know that Noah's veins were just so "blown" that there was no access. The one vein they could go in and use they wanted to keep clean and clear so Dr. Tam (our surgeon) could use it for Noah's Glenn surgery. So, he came back on the ventilator from that and they decided to keep him on it because his saturations were running low and he was already on 6.5 liters of oxygen at 100% flow....he needed help. So, a couple hours after they got him settled back in he threw up (expected sometimes after a cath/anesthesia, etc) A little while later, the nurse was doing some evaluations and she went to get the charge nurse to look at him with her and they came back and looked at him but went in to emergency mode. He had become very discolored on one side and they were doing what they could to get him to regain color and saturations. They got the nicu dr over there and it was a good 30 minutes of tweaking settings and all sorts of things for them to get his color back and his saturations back up. I called nick and we got him a flight in on that night, instead of driving in the next night. So, Nick got there Thursday night and we got a little bit of rest at our RMH room and got up to the nicu for cardiac rounds the next morning. There was not a lot of talk about what they were going to do for Noah, but they new he needed surgery. It was just a matter of when. Dr. Tam was wanting to try to get to Tuesday to do it, but Noah became more and more critical as time went on. We decided to stay with Noah in the room overnight on Friday. We switched between the "bed" and the recliner. It was a long night to say the least. He became more critical and basically they decided to give him as much sedation as they could to keep him comfortable. Pain meds as often as they could and they were able to place a picc line so he could receive all of his fluids, etc. By Saturday night they had him on a paralytic drip in order to keep his body from doing much of anything. His pace maker kept his heart from dipping below a certain level, the ventilator was breathing for him and he couldn't really do anything but lay there, slightly paralyzed and sedated, waiting for something to happen. The PICU cardiac intensivists came by and checked on him often and would make adjustments and just see how he was doing. Dr. Tam came by on Saturday and let us know our options were limited, but he felt that surgery to do the Glenn was our best bet. Transplant was out, (God closed that door for us without us having to make a decision), so we wait. If he could make it to Monday that was what Dr. Tam wanted so he would have his A team of anesthesia, nurses, staff, etc. If for some reason he had to do it more emergently he could. So, we waited. There were moments in that weekend where we thought we would be saying goodbye. We had the conversations with the Dr on call in the NICU (whom we grew to like very much), and our nurses about what happens if/when Noah were to go. What processes happen, what decisions have to be made, who handles it, organ donating, etc. All of those things came up periodically. We also had the conversation of when to stop treating and let Noah go peacefully or not. Nick and I prayed, we talked, we rode the waves of the weekend as they came and we decided on things. We had a peace with knowing that God knew what was going on and we wanted to give noah every possible chance we could as his parents and surgery was included in that. He made it to Monday. We kissed him like we might not ever get to again. They took him into surgery and then we waited. Some more. We found a booth with an outlet and parked it for the day. Lots of waiting and praying, facebooking and game playing happened as we waited.
Your heart goes to places you didn't realize it was allowed when your child is in the valley of the shadow of death. As he lay there helpless, we sat by helpless as well. There was absolutely nothing we could do for Noah, other than cling to our Lord. So, that's what we did. We began to cry out and plead. We begged the Father to spare our son. Yet, at the same time, we realized that if God desired Noah to be with him, we would have to be ok with that as well. Everyone has to realize that mortality is real. We are not promised tomorrow, healthy or not. Yet, in those moments, it seemed more real than ever. As your son holds on for dear life and you can only wait upon the Lord, it all becomes very clear....
life is fragile.
Noah came through surgery well. Dr. Tam even seemed pleased with it all. He was able to complete the glenn and he left Noah's existing shunt in. They got Noah settled in the picu and we were able to go back and be with him. He was alive. Noah made it through surgery. We went in our head both scenarios all weekend and the scenario of him making it through surgery had happened. Which meant, with all the joy of a successful surgery meant the long road of recovery was staring at us in the face. We know by now that Noah had never fully recovered from his initial surgery. He never came of oxygen all the way, he never got to really practice or get good at drinking a bottle, he didn't get to have any time at home before this surgery. "real life" hadn't happened for noah and then bam, he's in post op recovery mode again, on top of the lack of recovery he was dealing with before surgery. We didn't go into surgery with a semi-healthy kid needing his next step procedure. We barely made it to surgery just praying this would keep him alive. So, our post op saga would continue. We were relieved and thankful though. Truly. We have faced death twice with Noah and God has rescued him both times. I am not sure why, right now, maybe we will never know, but we are thankful and we are aware that Noah is beating odds every day. Obviously there are details of this story that I leave out on purpose. The darkest time of our life happened just a few days ago (hard to believe a week has passed) There were dark dark moments for Nick and I and we will always have that weekend as a time of hardship and fear, but not bad fear. We learned what fear of the Lord is, in a deeper way than we have ever known.
So, what now?
Well, recovery mode is in full swing. Noah is trying to continue to release fluid, get off the ventilator (that is never an easy thing for him), reduce medications, then get off oxygen, be weaned off of pain meds, possibly learn bottles (possibly get a g button) etc etc. I don't know what time scale we are looking at. Only God and Noah can determine that. So, again, please don't ask when we will come home. We don't know. We do know that we are thankful for every day we have with Noah. Hospital or not. So, we thank the Lord for each day and pray for strength as we endure all the ups and downs of post op.
Right now, we are still critical. Noah is still on the ventilator. He needs to lose some more fluid and maintain better saturations before they extubate. They tried to resume small feedings, via his ng tube, but he threw up and some of the formula just stayed in his tummy undigested, so his gut needs to wake up as well. He is on lots of pain meds, constantly and is on 3 different heart medications right now. One for blood pressure, one for arrhythmia, and one for "function" or the squeeze of the heart. So....here we are again...praying for pee, praying for less meds, praying to get off the ventilator. O Lord, you have heard our cry and saved our son from death's claws, but now we are in a treacherous place that feels like being stuck in the mud.
We truly are grateful beyond words for your continued support through all of this. I was able to keep everyone posted as needed on FB and I am thankful that at the click of a mouse or the touch of a phone I have thousands of prayer warriors on their face for our son.
I was so thankful to have hundreds of scriptures sent our way for Noah. We read them over him and ourselves as we needed our heads lifted and our hearts strengthened. Thank you. Thank you.
I'm tired. I weary beyond words and I have yet to have the moment when it hits me that, my son is alive and I can rejoice and be glad....I am in a middle place where I am joyous and thankful (don't get me wrong) but I am cautious and tense as we wait each day and what it brings.
I'm quite finished for tonight. Maybe I can give you more insight to the teachings Christ has done in my heart through it all later. For now, much love to all and thank you to each of you for your constant prayer support. Take from this update and pray accordingly.
We love you all