Thursday, March 22, 2012


Hi friends and family,

I plan to be in bed in a few minutes so this is going to be a super quick update on our Will man!! This has actually been the best week we have had in months!! He started back at school on Monday after missing a month. He seemed alert and happy to be back. We love all his teachers and therapists and honestly I was excited to see them all again too :-) It is so wonderful to see William alert and smiling again!! He has really enjoyed this beautiful weather we are having in Rochester.
On Monday we had a swallow study which evaluates how safely he is eating. Unfortunately the study showed that he is aspirating ( going into his lungs) on liquids and purees. He lost some muscle control which is affecting his eating abilities. So, the g-tube is now the best choice for him to get his nutrition in a safe manner. We are
in the process of setting up that surgery. He will still be able to eat smaller amounts by mouth for pleasure though :-)
As for his body temperature... he has been staying at higher ranges but still dipping down to 92.7 or so. At our upcoming consult with neurology we will discuss that further. Fortunately his heart rate and oxygen levels are staying within normal limits. A good sign...
Now, I am off to bed! Goodnight and thank you again for all your thoughts and prayers!

Wednesday, March 7, 2012

Hoping for Time to Heal

Shortly after William's birth during a consult visit with neurology we were told that he would not live a normal life span. My husband asked the questions... "how long... how many years do children with William's condition live?" His severe lack of brain development was discovered during my pregnancy at 24 weeks; the doctor was not sure if he would survive to birth. None of the doctors were willing to commit to a time frame or a number of years and why should they? While I respect our doctors I know they are not some kind of God, they do not hold crystal balls... they can look at their charts and speculate but in the end they just don't know. I am thankful for that. Yesterday on the phone the neurologist proceeded to tell me that William's brain could be shutting down. That William should be perking up after all the antibiotics he was given nearly two weeks ago. That sometimes children like William outgrow their brains. Their bodies are getting bigger and the under developed brain can't keep up. A doctor in the hospital told me the exact same thing. Upon hearing it twice I had to grip the counter to stay steady and summon extreme will power to finish the phone conversation.
During Will's recent week long hospitalization for pneumonia (among other concerns) a CT scan was done of his head. His brain has always had enlarged ventricles that are filled with fluid... now there appears to be more fluid and even less brain tissue. During the week we consulted with several neurologists and a neuro surgeon about the possibility of placing a shunt to drain excess fluid. All opinions were "on the fence" as they are not sure that the fluid is actually causing more pressure. Could it be? yes... the pressure could be affecting the hypothalamus that controls body temperature, sleep/alert cycles, hunger and more. Yet, William's several month battle with one chest cold after another could also be causing these struggles with body temp, alertness, head control, and eating abilities. The doctors were more concerned after seeing the CT scan and considering that these temperature dips have been occurring and documented by William's school since December. In conclusion they decided to wait and observe how he does over the next month. Placing a shunt is brain surgery and has it's risks... so it would have to be done when he is on good health.
After a week in the hospital William and I were so happy to be home. We had quite a scare in the emergency room so Wayne decided to take the week off and help with Ella. While it's comforting to be home it's also been nerve wrecking watching William's temp and heart rate drop. His oxygen stays at good levels and we continue nebulizer treatments as well as "warming sessions" when he hits as low as 93 down to 91. A normal heart rate for a child is 70-120 beats per minute; Ella usually runs up towards 100. William's is always a bit low- 60's but in the hospital dropped to 30's as well as blood pressure/ o2 dropping. I am not a nurse (and now seriously wishing I had that training!!!!) so I am not sure what the danger level is but when I see his beats per minute drop to 40's with a temp drop it is concerning. The hospital doctors were most concerned when his heart rate was in the 30's combined with low blood pressure.
Despite the many doctors we consulted with in the hospital no one is sure whether William just needs more time to recover from illness or if the changes could indicate brain failure. I am trying to remain optimistic and help my son with all my abilities to recover his will to eat, his strength, and happiness. Occasionally I get a huge smile in between napping sessions. I am more scared than I have ever been in my life. Will's neurologist said he has worked with a few kids whose brain's began to shut down; they lost control of regulating temperature which if it persists overtime can slow body functions and ultimately lead to death. I was told this over the phone. I could feel the fear creeping up in my belly and for the whole day felt this odd sensation of floating. A surreal feeling of floating through the day in a shocked haze. My husband came home and asked if doctor Mink gave a timeline for how long these children had to live after their brains starting shutting down. I didn't ask..... I don't want to know. I want to be optimistic and hope that William is just taking a long time to recover from pneumonia and return to his normal with the coming of Spring. One day at a time.... each day he will be loved and encouraged to heal. If it turns out he will need a shunt to drain some fluid from his brain we will do it and give him the best chance possible.

We are going to meet with his pediatrician about hormone levels- thyroid and cortisol- results should be back by tomorrow. If anyone has any experience with extreme body temp changes or a child that has struggles similar to William feel free to message me with advice etc :-)