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 :-)


  1. Girl, reading this takes me to exactly where we were just a month or so again - with Ty and Aidan battling their 'virus' that seemed to persist forever (I still question the flu shot they both got the same week they went ballistic). Aidan especially had 4 rough months. Lost the will to eat, stopped smiling - heart rates in the 40's and up to the 180's (which may be his norm?) - EIGHT respirations a MINUTE! SCARY! His temp in the hospital would run around 92 to 94 degrees. Doctors told us that both boys were losing their battle with liss. Aidan has been off & on hospice.. I was afraid I'd never see that smile again. And as you know, miracles happen - so remain HOPEFUL, my dear. IF you ever get scared, think of Aidan and Ty. William is just as strong! Of course, I know their timespan will be shorter than we want - so you can also turn to this story to give you strength -
    We had to wait for the boys' health to really amp back up (with the help of NG's) to get them their Gtubes. It's all such a journey... and wanted you to know you are not alone. Follow your instinct & if you ever need someone to listen I'm here!!

  2. Praying for your sweet boy. My Ryan just got over his bout with Pneumonia / RSV from January, not to the same extreme but we were seeing the same things, temp instability and general all around not himself. These illnesses knock our kids for 6 so praying William just needs his time, to get back to baseline.

  3. Oh Erin, my heart breaks reading this, everything that you and sweet William are going through. I have no words of wisdom or similar experiences to share. Just please know that you have one more set of love and prayers coming your way!!!!!

  4. You are being forced to walk a scary road, my friend. It's a good thing that you have so many who love you and William to walk with you. Will is in Joshua's nighttime prayers and Ben and I are praying for you as well. I'm always here if you need to talk or vent or watch mindless movies to escape. :) Love to you and William!!!

  5. Can I just give you guys a long distance hug and let you know that you are in my prayers?!

  6. Oh Sweet Erin,
    You are an wonderful example of a mother's love... stedfast, never ending and selfless! I find peace when I picture Will with his heavenly Father that even loves him more. As I read your blog my tears drop for the hard journey you,Wayne and Ella are on right now... thanks for sharing, so I can lift this difficult time to God! Catch my hug Erin... lov ya, Aunt Sue
    PS My favorite pictures are the Double the Attitude and you on the big rock looking like you are on top of the world.