Noah had a long night with some sleep, but not much. We were still awake at 2:00am so we watched a movie. It helped block out some of the sounds of other patients in the PICU and all the beeps and alarms that ring constantly. Noah had a lot of questions during the night about what was happening to everyone around him and why they were crying. He has such a big heart for others. It makes him sad when other are sad.
We had a great blessing this morning. We were told yesterday that Noah was 7th on the list of patients scheduled for MRI. That meant it would be sometime in the afternoon before he would go to the machine. He wouldn't have been able to eat anything until then. But we received a call from one of our favorite MRI nurses who gave him the 7:00am spot first thing in the morning!! We are praising God for His favor on Noah! He did very well before the scan. They put him to sleep and after it was over wheeled him back to the PICU. After a short time, Dr. Wellons, his neurosurgeon, came for a visit (He's the guy in the blue scrubs).
The scan results showed no residual tumor in the brain. Dr. Wellons was very optimistic and pleased with the surgery. He was able to remove everything he could see that was tumor and the tissue surrounding it. This does mean that he removed more of Noah's brain, but it seems that he has not been affected by this.
Noah was moved to a room on the 6th floor this afternoon. These are very nice rooms with an unlimited supply of Sprite and Ice cream. He is complaining a lot of his head hurting. He has thrown up some tonight and is trying to be very still. If he moves too much it hurts his head. He is still getting morphine for pain as well as other drugs. He has a CSF drain in his head allowing fluid to exit the wounded area. He hasn't wanted to walk yet, and thats not a cause of concern for us. He just wants to be still so he remains comfortable. We don't know how long we will be here. The previous surgeries, he didn't seem to complain about his head hurting near as much as this time. The surgery opened up the skull in the same place as his scar from the first two, but he also cut in a new place to get closer to the base of his brain. Our guess is that with this big of a wound, it's going to take some time before he gets any comfort outside of pain medication. He port is accessed now, so he has no IV's in his hands and feet anymore. this makes giving meds so much easier.
Tomorrow, physical therapy will come by to help him take his first steps after surgery. Please pray this doesn't cause him any discomfort.
This website had almost 18,000 hits from individuals yesterday. I still haven't wrapped by brain around that many people reading about and praying for Noah. Today 8,000 people checked in. Its is overwhelming to think about. The family of God is not bound together by denominational ties, geography, race or gender ~ but by the love of Christ who has encouraged us and given us his sustaining peace in the midst of the storm. Thank you, my family, for loving us though this crazy time.
Once again I'm reminded that Jesus told his disciples to get into a boat and take a trip to the other side. He never told them about the storm they were headed into, or the very possible threat of death that laid before them. What he did do was take a nap. They panicked - He slept. He knew what the outcome of the trip would be, they had no clue. It seems this scenario is a trend in the kingdom of God - know what I mean? When Jessica and I married, we never saw this coming. When Noah was born, we never saw this coming. And here we are. Sometimes during this journey it has felt like Jesus was napping. Every time we have heard disappointing news or watched Noah suffer I wrestled with fear and anger - and even panic. I have asked tough questions to God that haven't been answered yet. I may never get some of the answers in this life. But I don't believe I am in this boat alone. Now that we are though this surgery, perhaps the Master will stand up and speak to this horrible thing called cancer and say "peace- be still" and we can move on to the next part of our lives. Until then, we are going to do our best to remain in His peace.
Lastly, we had a visit from the CEO today in our room on 6th. He was very kind to Jessica. (I was home getting a short rest) It does my heart good that so many of you expressed your concern for the PICU policy. Perhaps parents who are in our situation in the future will have a less stressful experience. Our voices have been heard. Thank you. - John David
These posts are written by Noah's parents Jessica & John David Crowe. The default author is Jess, and those written by John David will be noted.