The anaesthesiologist says Clay is the best patient he has ever seen. The MRI went smoothly, and by now Clay is used to the routine - no eating that day, being put to sleep by blowing the large green balloon that smells like bubble gum, waking up and getting to eat a snack which he packs ahead of time. It has been a busy week here with 3 days of appointments for Clay and 1 for Pearl. are you just so happy because your mom is here?! " He is a special boy, well beyond his 4 years in so many ways. One morning at the breakfast table with JD, his mom, and Clay, Clay quietly says, "Daddy. Last weekend was Grace's 8th birthday, and both Grandmas came to celebrate. He has charmed the teachers and he tells me he likes to just visit the nurse sometimes (and not because he is feeling badly!). That means we have gone to the clinic every week for 25 weeks.Ĭlay is feeling well and is enjoying the independence of going to school each day. The doctor at the clinic this week reminded me that we are at week 25 of a 26 week protocol. I have started working with a Naturopath doctor, and am eager to have the time to focus on alternative remedies. One less ball in the air to juggle sounds good to me.
It was a great place to work and I am fortunate to have had the experience, but now I am looking forward to a break. com division where I have worked for 8 years was "absorbed" into the newspaper, and most of my close colleagues have already departed. Notable news on the home front is that I have left my position at The Washington Post. Unfortunately the photographer (me) did a lousy job of getting a photo of Clay with his 12" croaker fish, but I love the expression on his face after reeling in the big one. Thank you all for hanging in there with us and a special thanks to Rainette, Maria, Sharon and the Ambrozy's for helping our family get through this hellish two weeks.
What we don't know is "why now?" Of course this problem is tumor related but we don't know yet if it is because the tumor "moved", grew larger or if his latest therapy is having some success in killing part of the tumor and the dead cells are causing a blockage.Ĭlay seems to have climbed out of this ditch but his path is still long and arduous. His doctors expect this trend to continue and for him to feel better than before once his body readjusts. He is still largely confined to bed or couch but his (and our) energy and spirits are much higher. On Thursday he turned a corner-he is eating and drinking without difficulty and the pain is only relegated to when he is upright. The old joke about them waking you up every two hours to see if you are asleep is no joke. Or as Clay told his surgeon on Tuesday morning: "we are busting out of this joint today!" At that point his symptoms had not really improved-he was still experiencing severe pain and forceful vomiting but Mary and I felt strongly that the hospital was no longer the right place for Clay. We brought Clay home from Childrens Hospital on Tuesday afternoon. Clay's recovery process has been akin to a diver with the bends-the body is dealing with a sudden change in pressure and it causes the same symptoms that brought him to the hospital in the first place. It brings new meaning to the phrase "grin and bear it"-Clay has been in great discomfort for a good while but all you ever got from him was a grin and a "I'm fine" response. His doctors now believe that Clay had been tolerating extreme cranial pressure for some time and only until last week when the pain became extreme did the problem truly manifest. No complications arose and a ct scan after the surgery showed the brain ventricles to be responding as expected.īut Clay's recovery has not been "textbook" as his body's readjustment to "normal" cranial pressure has been slow and torturous. The surgery was performed on Friday mid-day and was deemed a "success. The shunt is a small plastic tube with a few valves that is inserted in the ventricles of his brain and then extended down his neck to his chest and then terminated in his stomach. Unfortunately there was no option other than to have a shunt surgically implanted in his brain to relieve the pressure and to allow his brain fluid to flow more easily.
The pain was so strong that tylenol with codine did not make him comfortable. (JD here for a rare guest posting.) As Mary explained Clay's brain fluid passageways became so obstructed that his cranial pressure increased to a dangerous level causing him excruciating pain and reflexive vomiting and coughing.
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