I will apologize before I even begin this post because I am sure it will be disjointed and confusing because my thoughts are just all over the place.
First, the boys. Max is recovering from his surgery still. We were hoping for amazing results after he had to go through all of that crap with the surgery yesterday, but it almost feels like nothing has changed since the initial improvement in his blood pressure. I was at the hospital late tonight praying and saying good night to the boys, and the nurse said that a chest x-ray taken last night of Max showed that his lungs were getting worse, meaning more "cloudy areas." They did reduce his vent settings by quite a bit yesterday hoping he could make up the difference on his own. This did not work well. His oxygen needs climbed to almost 100% and they ended up turning his pressures back up on the jet vent. He is currently in the 60-70% range on his oxygen. Max does have a sizable leak in his ET tube, meaning that the diameter of the tube is more narrow than his trachea, and a good bit of the air/oxygen they are giving him is escaping back up his throat. This could be a reason for his higher oxygen needs, but they cannot be sure. We pray that the antibiotics continue to break down the infection in his lungs and that his need for the ventilator starts to diminish. Wes is doing okay. He is still on the jet vent with very similar circumstances to his brother. He also has an infection in his lungs, but the nurse was not sure if it was the same infection Max has or not, but they are treating it with the same antibiotic, which sounds like "oxycilin", but I am sure I am saying that wrong. Wes also has a big leak in his ET tube. They have not tried to intubate them with a larger tube because they do not want to stretch or permanently paralyze their vocal chords, so they deal with the leaks and try and find a position that works well for the boys. Wes' oxygen needs have been in the 30-40% range. Wes has been tolerating his feeding schedule well, and is up to 9ml of breast milk every 3-hours with a packet of Human Milk Fortifier (HMF) to add a few more calories. They have begun to ween him off the TPN fluid, which is a conglomeration of about 75 nutrients that are given through his IV. These are essential nutrients, but can be harmful to the liver, so they like to get them off this as soon as they are getting enough breast milk.
Please pray with us that the boys can break out of this holding pattern. We do not know what to expect day to day, but it seems like the boys have taken a few steps back and just stayed there. Hearing that Max's chest x-ray looks worse after the surgery and a couple days on the antibiotics is just heartbreaking for me. He was going to have another x-ray a few minutes after I left the hospital (but the results trail the x-ray by about 10-12 hours it seems), so we are praying that the doctors will be blown away by the positive change.
One thing that I have not discussed on this blog yet is Kate's Mom. Many of you probably know that Mom has cancer. She was diagnosed on November 28, 2003 after she went in to have her gall bladder removed and the doctors could visibly see the cancer on her ovaries. After a number of tests and months of unknowns, it was determined that she had a very rare form of cancer called neuroendocrine cancer. Due to the rarity of the cancer, she was treated by a specialist at the M.D. Anderson cancer facility in Houston, TX. Her and Dad made countless trips down there for tests and consultations with the doctors. Some trips returned good news, others did not. To make a long story short, it looked as if the chemos and other various drugs were not keeping the cancer cells at bay, so she was turned over to the research department at M.D. Anderson and participated in an experimental drug trial. She was the only person in the country with her type of cancer on this particular experimental, non-FDA approved drug. After about 6-months, the decision was made to stop the trial due to tumor growth. The more painful decision was also made that it was time for Mom to come home (she stayed in Texas during this 6-month period), which meant that her treatment had shifted from "let's kill this cancer" to "let's keep Mom comfortable." She came home in early March. She has since started to decline quite quickly, and even more so in the last couple of days. We had a meeting with her Hospice doctor this evening and he said that based on his information and what he was hearing from the family that he would guess that Mom is in her last week of life. I don't even know what to type. In one breath I want to be furious at God, and in the next I cannot help but see how He has been in control of this whole situation. Mom was at our wedding almost 5-years ago, she had her first grandson, Luke, born 10/11/06, Joe and Lisa (Kate's sister) were married in December 2007, and our sons were born on 03/27/09. And that does not even begin to paint the picture of the great times we have had as a family over the last 5+ years. Mom's initial diagnosis was 3-6 months in 2003. The Hospice doctor tonight said that he would have given her 18-24 months based on her initial CAT scans in 2003. As I look back on even the last 45-days, God's hand is so evident. Mom came home about 5-days before Kate went into the hospital on March 10. She was able to visit Kate a number of times, and she has been able to meet, spend time with, and touch Max and Wes. What a blessing that Mom got to meet our sons, but also that Kate is no longer on bed rest, and she can go and spend time with her mom and say all the things she wants to say. Again, I do not know what to type. Please pray for Kate. She is struggling with being a new mom to Max and Wes and the thought of her mom not being around to help. I know Kate will be an amazing mother, because Myra is an amazing mom. Please also pray for Kate's sister Becky who is pregnant with her second baby, and is due in July, just a few days before Max and Wes' original due date. Kate's little sister Lisa lives in Florida and is coming home this weekend, so please pray for traveling mercies and God's timing. Also, keep Kate's dad in your prayers. He has been through so much with Mom, has seen her poked and prodded for more than 5 years, made 20-30 trips to Texas with her, driving, flying, whatever worked. The graciousness with which Mom and Dad have handled this disease has been an inspiration to me. How can someone faced with the worst of the worst circumstances still have joy? Still praise God? I pray that I can take what I have learned from their example and apply it to my journey with Max and Wes.