I Have Not Cried...."Yet!"

I have not cried yet! I think the key word is "yet!" I am however, expecting when all is said and done and David and I are safe at home and he is well on his way to a full recovery....that I will find a quiet place and cry like I haven't cried in more than a decade. Yeah...I am on the verge.

Yesterday was a day reminiscent of 11.5 years ago when David was in the NICU and we didn't know whether he would live or die. Some days he seemed far away from death and some days he was so close to death that I felt I had to hold on to him and fight. Yesterday was one of those latter days. I was holding on and fighting with all my might. I saw how close I was to losing him and he was not going without a major fight.

Since surgery....he has only had a few hours where his heart rate was below 130 and his temp was below 101. His body was just fighting a hard battle and yesterday he almost lost. I decided that there would be no more valum and only tylenol for pain. I had to see what his actual pain was without being completely snowed by meds.

As the day progressed his congestion got worse and after deep suctioning...it was decided that his lungs were the recipients of much of his congestion. His heart rate was fluctuating between the 170's and 180's and his temp steadily climbed from 100.9 to 104. His skin became grayer and his lip took on an almost clear appearance. I knew things weren't right with David and so did the nurses. Then his SpO2 stats began dropping into the 80's. Even with oxygen holding at 92 was almost impossible. I knew I had seen this before about 11 or so years ago. He was becoming septic. I was almost afraid to think it....let alone say it out loud. Before I even could....the doctor informed me that he was going to be sent to Children's Hospital. I wasn't sure to be extremely relieved or extremely scared.

Let me say at this point....this is where I give Shriners so much credit. The nurses realized that David was quickly falling into crisis and immediately they took action. Knowing that Shriners was not equipped for kids who were as sick as David....they got a emergency team from Children's Hospital to David within just a few minutes. Before I knew what was happening...they were prepping him with blood and antibiotics as one of the Nurse Practitioners from the team confirmed what I had already surmised. David was septic and well on his way into full fledged shock. His life was in the balance and his survival was dependent on this team and how quickly they could get him the care he needed. I was so scared...no...terrified that my son would not end the day with me......that I started to become angry. I could feel myself willing these people to work faster and move quickly so that we could go. Lines were twisted and blood had to be obtained. Orders were being written and all the while I could see David slipping from me. I wanted to scream at all of them to HURRY! The rational and intellectual side of me....which thankfully prevailed....realized that they were in fact working as quickly and proficiently as they could and if I were to throw the fit that I was contemplating....that would only further hinder their progress. Eventually we were in the ambulance and on the way. My head was spinning and I was trying to pray but the words simply were not coming. Finally I found the ability to ask that God just go with what was in my heart. Apparently He was listening.

Once at the hospital....I was so impressed. Children's Hospital of St. Louis is affiliated with Barnes Jewish which is next door. Between Barnes and Children's....you could put all the Wichita hospitals together and still these two would be bigger. We were rushed immediately to the PICU where David was attended by three nurses and a doctor. Within just a few short minutes he was changed, his bandages redone, his legs put back in the splints, his gown changed and all of his meds going. This was obviously a well oiled machine that knew exactly what they were doing. Because I couldn't help myself and because I was scared out of my mind....I asked the doctor the very question that makes all doctors cringe to their very core. I asked her: "Is my son going to make it?" I knew as the words left my lips what her text book answer would be but I had to ask. I had to have some reassurance that David hadn't gone through all of this just to die. I was right. She said they were doing all they could do and they were doing their best to get him stable. That was it. End of discussion and I knew that I would get no more. I was devastated but I refused to give up. I listened as the doctor went over the possibilities of what might have caused this terrifying and horrific turn of events. It could have been a post op infection, or an air born infection, or an infection caused by contamination from a line or pneumonia caused from aspiration. Since he was critical....they really had no time to sort it all out so they continued the blood (his blood count was continuing to fall) and started him on vancomyacin a Super Man of sorts type of antibiotic which takes care of many infections or at the very least starts helping to rid the body of infection. After that was completed...then they could start unraveling the why's!

Within a very short time, the gray began to leave his little body and his lips no longer looked almost clear. Between the blood and the Red Man syndrome often caused by the vanco...his color improved quickly. They also put his catheter (which had been removed that morning) back in and started pushing IV fluids. I steadily watched the monitors as his temperature slowly started dropping from 104. As his body cooled his racing heart rate began to slow and started drifting down from 175 to the 160's and then the 150's. His SpO2 sats stayed between 98 and 100 and for the first time in several hours....I actually felt myself breathe. My mother in law, sister in law and nieces had rushed to the hospital when they had heard about Davids crisis and together we watched as David began to improve. When the crisis was believed to be over....they left and once again I stood alone and wondered if this was our last hurdle to the home stretch or if more lay a head?

The doctor took a chest x-ray and it was found that aspirative pneumonia was believed to be the culprit. His x-ray was shady with obvious signs of pneumonia and the vanco was showing definite signs of controlling the infection. To be on the safe side though...they drew blood cultures to make sure they weren't missing something. By 9 p.m. David was coming around nicely. His heart rate was in the 130's and his temp was down. He was able to be taken off the oxygen and the night time doctor said if his improvement continued over night...he could be moved to a floor today.

By night fall I was beyond tired. Knowing David was now stable and holding his own was such a relief but I was too the point that I didn't trust that we had run out of the speed bumps and life threatening crisis. I was questioning whether I had wanted his independence and wanted him to walk so badly that I had pushed him into a surgery his body couldn't handle. I was told that his body had lost a lot of volume (blood and fluid) during his surgery and that it had never fully regained what it had lost. Add that to the fact that he had aspirated food and liquid into his lungs and he had a ripe breeding ground for a whopper of an infection. Was this surgery worth risking his life? Then I remembered Dr. Keeler telling me the state of David's hips and the eventual pain he would have to endure without the surgery. Eventually he would not be able to sit, stand or walk because of the deterioration of his hips. Honestly the surgery at that point had lost its electiveness for me and became a life saving/enhancing surgery. There really had never been a choice. Surgery was the only way for him to have any decent quality of life and independence.

For most of the night I continued to wrestle with my decision for surgery, with all the issues that had occurred and with the fact that I was trying to be a mother to two boys at the same time 500 miles apart and failing miserably with both. I simply couldn't be two places at one time and even if I could....fixing either one of them was completely beyond my control. I spent the remainder of the night in a hard semi-reclining chair with a foot stool. The room was cold enough that I needed two blankets and though exhausted my mind only allowed me about an hour of shut down time before I awoke to once again ponder when and if the other shoe would drop.

I intended to have this out first thing this morning...but as my life seems to do....it took some strange twists and turns today which only now allowed me to complete this. What you ask? Well that is for tomorrow. Today though....David is holding his own and it looks that by tomorrow we may be back on our way over to Shriners. I am keeping my fingers crossed and praying with all my heart that the worst is over and after all of this....the rest of the recovery is a piece of cake!