May 21, 2009

Wow - this really is a rollercoaster ride!!! Today wasn't terrible, but it was hard. Bryce was able to talk a little better, but it is still very difficult for him to speak and hard to always understand what he is saying. However, it is much better than when he was on the ventilator. Bryce and I shared some tender moments visiting while I was with him this morning. He asked if I would watch over him while he rested. Yesterday, feeling concerned because of him aspirating last time after he was extubated, he asked Kendra to watch over him.

Bryce was very weak today. He was able to do so much more the two previous days. Today I helped the nurse to get Bryce out of the bed to stand and then to sit in a chair. This was hard for him and then when we got him out of the chair he couldn't do it - we had to almost lift him. It was difficult for me to see his little legs quiver just to stand up and then have him collapse back into the chair.

He did quite well with his oxygenation. For the most part he didn't require any oxygen and was just on a humidifier. However, it still took some effort for each respiration. His heart rate got up to the 140s for a short time, but then dropped down into the 120s.

He is losing lots of hair so Jerica cut his hair when he sat in the chair. Again this was very difficult because it brought back memories when we cut Kendra's mother hair and a few days later she passed away. In saying this it doesn't mean that we have lost faith in him surviving, but I have had sobering memories of the past. In my desire to support Bryce I had my son-in-law buzz my hair tonight. It feels like I am ready for basic training all over again.

Unfortunately his bilirubin climbed to 19 today - he is becoming more and more jaundiced. It has been very concerning to us to see his bilirubin continue to rise as the plan was to wait until it was 5 or 6 to do chemo again. The doctors believe that it is a combination of things causing this - most likely caused by the breakdown of the hematoma in his abdomen. We talked at length about options with the oncologist. He said that he and six of his collegues met today to discuss Bryce's situation and they felt that the best plan is to give Bryce another partial round of chemo. They plan to do this tomorrow. We were in full agreement as the lymphoma will kill Bryce if he isn't treated. It will be hard to see him weakened further by the chemo, but we don't see any other option medically.

They found a blood clot in his leg and put a filter in the major vein of the heart today to prevent any potential clots that break lose from causing a fatal problem for his heart or lungs. Bryce continues to suffer from a lot of abdominal pain. His bowels are working a little now, but not fully. Another good sign is that he is having less out of his NG tube from his stomach.

Bryce was pleading with the resident to allow him to eat something - he hasn't eaten or drank anything for over three weeks. He asked can I just have a bite of jello or pudding or ice cream. How about some Dr. Pepper - or some Dr. Pepper ice chips? When Dr. Alonso, who is in charge, came in, he asked if he could at least dip the toothette swabs into Dr. Pepper and suck on them. She agreed to a very limited amount and also to let him have a couple of lollipops each day.

It is always touching to me and Kendra to witness the tender love of Jerica for Bryce. It is hard when she is having a hard time holding back the tears as she is concerned about him.

After spending the day with Bryce I have contemplated how much we take for granted. Many of us are without pain or significant pain; we don't have to fight for our breaths, we can eat and drink, we can easily walk, we can talk freely, we don't have to be hooked up to multiple lines and machines, etc, etc. I am so proud of my son for his determination and courage. Just as he did as a little boy he often will express thanks to the medical staff who continually poke and prod him.

We pray that he too will soon be able to do these same things again that we take for granted.