Sundays seem to be our bad days

Our roller coaster continues. Today unfortunately we had another low. Pretty much at the top of my list of things I am really tired of seeing is my son's heart stopping. We were getting ready to leave, and were chatting with the nurse, and when I glanced at Andrew's monitor he had flat lined. The alarm is actually delayed a little bit from the wave form, but when I told the nurse that his pulse was zero, she jumped up, and as soon as she got there the alarms started going off. Andrew came back quickly, but had a very unsteady heart rate for a few minutes -- I had virtually no concept of time. It could have been 3 or 4 minutes or 10. Once they gave him a sedative, he stabilized. This likely indicates a seizure.

The truth is that neurologically Andrew is not doing well. Before last Sunday, when he heard my voice, he opened his eyes, and looked at me for a few long seconds. His eyes tracked my voice, and both moved together. He could grip my fingertip with his hand. He would move and respond to our touch. This week, sadly, he has been unresponsive to most of our interaction. His reflexes are almost non-existent, and when he does crack an eye open, he doesn't seem to be able to track us. It is very difficult to see him like this. His brain has just sustained too much injury. His infections seem to be improving, but new ones pop up. The aspergillus and pneumonia are the most concerning infections at the moment.

Ethan... well, he is doing better than Andrew, but our physician shared with us this week that while there is still a lot of hope that he will survive, his prognosis is not good. Her opinion is that he will be a severe care child, unable to take care of himself. That being said, there is still a slight possibility that he might be able to walk and talk and interact with us. Emily and I are clinging to that hope, but are willing to care for him for the rest of our lives if need be. Emily understands what that means a lot better than I do.

So people keep asking us how we are doing, and how our boys are doing. Its really hard for us to answer that question honestly and still be appropriate. Emily and I feel very much of the description in D&C 122:7. Truly, the "jaws of hell hath gaped open the mouth wide after [us]." What can we say? The past three weeks have been the sorest trial of our lives, and we have seen our share of trials like anyone else has on this earth.

That is the dark part. We all have our trials. And even though they are all different, no matter what trial we are facing, we need the Lord's help to get through it. None of us can make it without Father's mercy and grace. I believe that after Emily and I overcome this trial through our Savior's grace, we will be strengthened to a degree much beyond where we were before. When I watch my little boy suffer from pain, and I watch him stop breathing, or his heart rate crash; When they are beset with multiple infections, pneumonias, the most severe IVH's, or I see wounds on his chest from the fingernails of the nurse who did chest compressions to save his life, and in my heart I can still tell my Father how grateful I am to Him that he gave me my sons to have for these few short weeks, and that I trust in His will for what is best for us... well... How could I ever forsake Him? I love Him. He is my Father, and I know He loves me, and will act according to what is best for me, for my sweet wife, and my dear boys. I am not sure what tomorrow or tonight will bring, but I know that our God loveth his children (1 Ne 11:17). Truly, all is well when we cleave to our Savior in faith, regardless of the circumstances of our life.

I have found great comfort in some of the following scriptures:

D&C 121:1-2, 6 - 10
D&C 122:7-9
Mark 4:37-41
Mark 5:36
Mark 9:16-29
Matt 14:24-33
John 11:1 - 45, but especially 25 - 27, & 35
"An High Priest of Good Things to Come"

I thank my God for the covenants I've made in the temple.