Monday, January 25, 2010
Monday, January 18, 2010
Eating well....All of us! ;)
Mr. Jack is feeling better and slowly starting to eat his regular food again. As you can see, Puffs are a treat he remembered to be on his "favorites list". However, he has not remembered squash, sweet potatoes, green beans and rice cereal to be on that list. Stefanie and I have allowed the picky eating since the surgery, but that will more than likely end today! Having Jack follow a schedule was hard enough the first time around so we do not want to drift further away than necessary. His schedule will become more rigid as time goes on until we are back to normal.
As for Stefanie and I, we are eating a bit out of whack as well, but in a very good way! We have been blessed with so many friends and family wanting to help with housework, running errands, grocery shopping and delivering meals. Unbelievable acts of generosity that we only hope to have the opportunity to repay in the future! (And we don't mind eating like kings for a while too!)
Jack condition, craniosynostosis, was at first going to be a relatively routine surgery for Dr. Singhal. Upon the first incision he realized that Jack's condition has advanced rapidly and become "progressive". This was a term that was unfamiliar to us in relation to craniosynostosis and Total Calvarial Expansion and Reshaping (the medical term for Jack's surgery). Stefanie searched "progressive craniosynostosis" and discovered that Jack's condition occurs in <.00002% (approx 1 out of 50,000) of babies born today. With that kind of luck Jack needs to play the lottery as soon as possible! He was experiencing elevated intracranial pressure and the surgery couldn't have come sooner. Dr. Singhal mentioned that his brain welcomed the newly found real estate by expanding as the suture lines were opened. He described it like the brain "mushroomed" because it had already filled the available space inside his cranium. We are very thankful for the findings of Dr. Miller, our pediatrician, and the abilities and experience of Dr. Singhal, the surgeon for identifying and correcting our baby's little noggin! Enough of the medical stuff, we are going to eat some of the fabulous meals that our friends and family prepared for us.
~Cory & Stefanie
Saturday, January 16, 2010
Settling in at home.
Friday, January 15, 2010
The Helmet Dance!
Thursday, January 14, 2010
Making progress.
Today has been a day of progress for Jack and the recovery schedule. He had his bandages removed, the drain line removed, the incision area cleaned and new dressings applied. Jack is mostly off of the narcotic drugs. He is getting a little shaky and we might need to check into rehab for his recent drug abuse problem, but I think he will be fine very soon. :)
I think the pain is subsiding for Jack as the hours pass. His fussy time is greatly reduced and the smiles continued all day.
As you can see the incision was large and the drain line hole was larger than expected but the new bandages are minimal and it looks like the home wound care will be pretty straight forward.
I think we have 1 more hurdle to jump before we can get the "all clear" bell. It is a bit of a dirty subject, but he needs to....well....poop. Jack needs to let it go and show that his bowels are working properly and then we can go home.
Other than the dirty diaper we still need to get fitted for a helmet. That will happen tomorrow around mid-morning. We will have a helmet decorating party at our house next week if you would like to join us!
I will update/post in the morning.
~Cory & Stefanie
It's a good day.
The surgeon's Nurse Practitioner (NP) stopped by and mentioned that they will come back around 2:30pm to change his wound dressings and possibly remove the drain line depending on the collected amount. You can see the collection bulb and drain line in both pictures. We are optimistic about his progress from this point forward. However, even with the positive outlook for today we would prefer to remain at CM to take advantage of the care givers here rather than being incapable of high quality care at home. Not that Stefanie and I are incapable, but the CM staff have a little more field experience.
The sleeping arrangements have left a little to be desired. I thought we were moving into the lap of luxury with a large rocker recliner that can lay fairly flat and the 6' window seat that doubles as a bed. Maybe my perception of our new furnishings was a little tainted and the expectations were a tad high. We are still in a hospital after all. I will not lie, I miss my Tempurpedic bed sorely!! Pardon the pun.
Sometime late this afternoon, the fashion icon will be measured and fitted for his ultra cool helmet. I can't wait to adhere the endless possibilities of stickers and accessories to his new appendage. Any ideas on how to decorate Jack's helmet? The best idea wins!!
Jack and Stefanie just fell asleep and the mood is tranquil and peaceful for now. I will update later today when we have more news.
Cory & Stefaine
PS - This moment in our lives has been very emotional for Stefanie, myself and our family and this blog has given me an outlet for my emotions. Please accept my apology for the tears that I have caused with my writing. It was obviously not my intent. Stefanie, Jack and I are continuously overwhelmed with the gracious support given to us by those of you reading our updates. Know that your support, positive thoughts and prayers give us the extra ounce of energy and strength we need to manage our emotions and feelings. Our needs won't end when we leave this wonderful place as the home care will definitely prove to be very difficult and challenging. As Bartel's and James once said, "Thank you for your support." (That's back when wine coolers were, well, cool.
Wednesday, January 13, 2010
The home stretch.
Tuesday, January 12, 2010
Finally.....
The day after.
Monday, January 11, 2010
Time for rest & recovery.
He looked a lot better than we expected or could have imagined. Some swelling, tubes and some bandages were his battle scars from the 7 hour long ordeal (4 1/2 hours actual surgery). Stefanie and I were relieved to see our baby boy once again!
Currently, we are are resting in the PICU, starting to wind down from the day and gear up for a long and mostly sleepless night. The couple of times he has woken up pretty unhappy, he has been easily comforted with a bottle. They are giving him several medications - antibiotics, steroid, anti-nausea, and pain. He still has 2 iv lines, the heart monitors, catheter, blood oxygen monitors and the drain from his incision site.
FYI, Children's Mercy is not allowing any visitors under the age of 18 into the hospital. So, please remember if you are planning to visit.
We are headed to grab some food and we will be back later with a nightcap.
Thanks again for the prayers and support! We can feel the love!
Cory & Stefanie