Holding Tight

Nick has been wanting to return to the beach for so long now. I chose this picture to remind me of the future we hope to spend together.

Yesterday (Saturday) started well. Nick was allowed to come off some of his sedation in hopes of taking the breathing tube out. His blood gasses were good and he was able to stay very calm while they did all their testing to see if his lungs would tolerate having the breathing tube out. His CXR showed that his right lower lobe had re-expanded and all seemed right with the world.

Despite the massive quantities of sedation medicine, Nick was able to open his eyes, nod his head in answer to questions and even write his needs and questions on paper. He seemed to understand that he was back on the machine, but, of course, he did not understand why or what happened to him. Nick was listening to some of his favorite music, the one I just put on my playlist by Old Crow Medicine Show is one he really enjoys! He was able to communicate with me and he knew when his Dad and Kate arrived later in the afternoon. He occasionally got frustrated when we could not figure out what he was trying to explain. While it was wonderful to know that our Nick was still alive and well after the seizures and the Tacrolimus toxicity, I could also tell that he was very sad and upset to be in such a helpless position. To see him suffering this way, well, it just broke my heart into a million pieces.

Suddenly it all went sour and for no reason that anyone can figure out Nick's oxygen saturation levels started to drop. At first, the sats were in the 89-92% range (normal is 97-100%) but, the number began to plummet downward and soon Nick was feeling that he could not get enough air and began to get anxious. I cannot tell you how many times Nick has had to go through this horrible experience, but, it has been WAY TOO MANY! The only way I can describe is to say that it is terrifying not to be able to get your breath and it is heart wrenching to watch this happen to anyone, let alone your child. As Nick's sats continued to drop, the doctors and nurses hurriedly started to sedate him and try to get oxygen in him via the ventilator and then through bagging with an ambu bag. Nick's sats dropped so low, I was terrified we were going to lose him right then and there. He was already on 100% oxygen at this point and his lungs were not bouncing back. His blood gasses were very bad, but, somehow his heart rate and BP remained stable and his blood pH did not drop too far. It took the better part of two hours for Nick's sats to return to normal.

A CXR showed possible worsening infiltrates and/or an inflammatory process?? It may be that he has an infection and/or something called ARDS (acute respiratroy distress syndrome). Whatever it is...it is not good. I have shed so many tears, the depths of my sadness cannot be measured. Glenn & I tried to stay at a special housing unit that is right across from Weinberg, but, there were no rooms. So Glenn is spending the night and I came home. I am praying that I do not get a phone call in the middle of the night tonight. I don't think I will be able to bear it if anything happens to my precious son. Everything brings reminders of how much he has been through and how much I love him. I cannot begin to describe the despair that I feel at this moment. All the hopes and dreams we have been holding onto so tightly seem to be slipping through my fingers like grains of sand. Sand from that beach that seems like a memory from so long ago, I don't know how we will ever make our way back to the place in time.