Life in the hospital with a baby with brain cancer can actually be really busy. I apologize that I have had little time to respond to your kind thoughts and comments through email, phone calls, and on this blog. We read all of them with great appreciation as they tremendously help us through each day. I hope eventually to respond and get back with many of you. Thank you so much for those who have been able to stop by and visit us in the hospital and also our home in Fort Collins. Thank you to many of you who have sent lovely gifts to Michael and Sarah, Whitney and Spencer. We appreciate it so much.
Someone asked me what a typical day is like here in the hospital and how I pass the time. Well, there is no trouble passing the time as life here is pretty busy. Here is an idea of what a typical day includes for me (Liz):
Get up, dressed, ready for the day and arrive in Michael's room by 8:00 AM.
Doctors rounds - the neurosurgeons, occupational, speech and physical therapists, pediatricians, child-life specialists, all stop by in the AM to make assessments and do therapies and visits
Nurses - the nurses come in every two hours to give medications and monitor his EVD, feedings, etc.
Oncologists and therapists (occupational, speech, physical) come in the afternoons for more assessments, therapies and visits
Diaper changes, clothes changes, bedding changes, soothing and holding. He likes us to hold his hand while he is resting so we spend time by his crib doing that. And a few times a day we hold him in our lap for extended periods of time.
Taking care of me - eating regularly as much as possible, checking on sleep-room availability, going for a short walk
Research and literature - spend pockets of time reading and researching about Mikey's illness
Milk - I also pump milk for Mikey 3x's a day, it takes about 1 1/2 hours total of the day
Blog - yes, it does take time
But, as busy as it is, it is a much slower pace than being home with four beauties. Sometimes I wish we lived back in the life of "Normalville." I miss the ordinary things like toting the kids around in the car, the noise around the house, and traipsing around King Soopers and Target. Every night before I would go to sleep, I would sneak in the kids' rooms and watch them sleep and marvel at the gifts I had. I miss that. Life is a beautiful thing in the most ordinary of ways. If only we could see it that way all the time.
Our New Home
We are in our new home for the next couple of weeks: the 6th floor, room 609. These rooms are smaller than the ones in the PICU, but they do come with their own private bath. Right outside of our room is the kitchenette where we can get water, and then the nurse's desk, so it can get pretty noisy at times. We have a lovely view to the south as well. It is snowing today, so I'll take a picture of it when it's more clear outside. The rooms are a bit more warm and cozy in color too. We went from glass walls, blue floors in the PICU:
Just wanted you to know we are praying and thinking of the Wheelers!!!! Love you guys!!
ReplyDeleteTim & Liz, thanks SO much for the new room pictures and a lesson on EVD. We *do* wonder how Mikey and you guys are spending your days, and try to visualize you all throughout the day. We are grateful for the blessing of living in a day where technology is available to treat cancer. As my friend said, "God bless those surgeon's hands". Amen to that! We always pray that the doctors will continue to be inspired to help Mikey. with lots of love, Gina
ReplyDeleteyes, you must sacrifice to add to your blog each day...thank you for helping those of us who check a few times a day, to help us as we pray for you. Your personal thoughts have taught me to let go of stress and remember what the really important, crucial, vital priorities are. I wish I could help you. Just know that you are loved very much! and you don't have to worry about ever "answering." Take care of each other and Michael... and your dear kids, when those few moments come up! How thankful I am for Pat and Bill right now! (and I am praying hard for them, too!)
ReplyDeleteThank you for taking your precious time to record your experiences, thoughts, and pictures. Like the others, I find myself wondering what you guys are doing, what you are feeling at any given moment. We would never expect a response! This blog is a much appreciated gift to us all!
ReplyDeleteglad to hear that you are in a new room. That has to be a sign of progress. Yea!!!
Much love!
Kim
Tim and Liz you are in our prayers as well, and thank you for taking the time to blog these experiences. I have to say the medical person in me is so amazed at the EVD being able to monitor the amount of CSF and I'm so impressed with your relationship with each other. Don't worry about responding to blog comments, just know we all appreciate being able to follow you and cheer on your successes while praying for your family and especially Michael. - Kim Leonard
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