Today we brought Sidney home from the hospital for the third time in 3 weeks. I am tired but happy, and it is difficult to put words to all our thoughts and feelings. I finally decided to just copy/paste my text updates to my church here to document this journey.
Temp is 100.4 with Tylenol every 4 hours, fast reaching recommended safe dosages of that.
Biggest concern is weakness. He could not stand this morning. I was not led to expect this as norm after surgery. Waiting on call from doctor. Pray they will be wise about solution.
Pray for me. Did not sleep last night. Have slept little since last Thurs, so am feeling the effects of unclear thinking. I need to think clearly.
. . . .
Waiting on tests. Still no sleep for either of us. He is so
uncomfortable but still maintains hope and contentment. He was so happy
when I washed his face at 4:30 this morn and helped him brush his teeth.
There is so much noise in hospital.
. . . .
Found out last night that he has lost 30 pounds. That was a bad moment.
Sidney and I are still having sweet moments, laughs, good talks. He spoke the best prayers last night, almost lulled me to sleep before his machine started alarming.
He is an amazing young man.
. . . . .
Got him off some beeping machines. Had to wrangle and guard him a bit but finally got staff to get approval to stop steroids. Sidney is pleased with that.
He is also on iv antibiotics now though his cultures have not grown anything yet.
Staff have been good kind with my mama bear mode and trying their best to work with my requests. They will probably be happy to see me go.
. . . . .
Sidney is turning a corner. Still has not slept but he ate more today, fever
is coming down, and he wanted to walk to bathroom and he wanted to feed
himself and brush his own teeth —all things he was unable to do since 2nd
day post op.
He remains happy, content and hopeful, misses Lincoln and girls terribly.
He will say that this has been miserable for him but my son wears misery
beautifully. He is a joy to be with and while I can’t say I don’t want this
all over quickly, I will say that we’ve had more good moments than bad. My
desperate weak moments have been overshadowed by the joyful ones.
We don’t know what you all are praying for —- Sidney says your sleep
prayers are not working, so pray harder —-but clearly many prayers for us
are being answered. Sidney says he feels so loved by so many.
Thank you for carrying us through.
. . . .
Well, Sidney is still trying to make it around that corner. He temp spikes up and down. Doctor is adding another antibiotic today. Dr. Wait is still not convinced Sidney has an infection, but the antibiotics will cover all bases in case bacteria does grow in the cultures. Wait thinks it is a typical post-surgery fever – a way the body reacts to surgical invasion.
Sidney sat upright on side of bed and did neck stretches for 5 minutes this morn — such a small thing but he has been too weak to sit up long since surgery. He never considered medicine before but now has quite an interest in oncology and pediatrics, especially making people laugh. We talked with a St. Jude doctor today. This reinforced his interest, especially when he heard St. Jude has the only proton beam radiation for children in the world. He would love to see that. His pathology still has not come back but we are confident that St. Jude is already reviewing his scans and blood tests and pushing for those pathology results. My sister relieved me last night and I slept so I am ready to resume my long, busy but sweet nights with my boy. We have had such sweet discussions. This tumor has already changed the course of his life, and we both have great hope for a new future for Sidney that we never before imagined.
Doctor Wait will add Benadryl to your prayers for sleep. Let’s pray that together those 2 things work. Also it would be encouraging if Sidney feels strong enough to sit on a shower chair today. We miss everyone.
. . . .
As the steroids slowly leave his system, Sidney sleeps a bit more each night. Often he does not realize how much he slept until I tell him the nurse came to check his vitals and he slept through it.
I thought I had him settled to sleep at 10:30 last night when he asked me to sit close, hold his hand so he could pray. An hour later, his prayer was still going strong with no sign of winding down. He prayed for many of you by name and in great detail. His prayers have a storytelling flavor that have both of us laughing and crying.
He thanked Father for this trial because even though he has been exceedingly uncomfortable, he is also a “a happy camper” as Grandpa Louis used to say. He is amazed at how God has worked to make him content even while he wants this to be over, happy and smiling and laughing even while feverish, aching and desperate for sleep. His mind constantly wanders over all the people in his life who love and bless him. And you, our church, are a huge part of that comfort and joy he feels so fortunate to have in his life.
Sidney feels that yesterday was a good day – he was able to sit up and more often. He finally took a shower, narrating the whole experience and singing the whole time. I coaxed him to walk down a short hall and around a corner onto a kind of veranda. We had to drag his iv stand but we felt sneaky and bold, taking off on our own a whole 70 feet and through a door to the outside without permission. He sat upright in a chair and we ate a meal while outside air touched his skin and the birds sang.
He told me to say that he just crackled his own toes independently. He is thrilled to not have to rely solely on me for that though he has enjoyed the five little piggies on his toes.
Sidney is getting 2 broad antibiotics and his fever is mostly down though it does still spike once a day. But his returning strength and desire to do little things independently are the biggest indicators that he is feeling better. He is eating well, important because he has at least 30 pounds he needs to regain.
He looks forward to today as Sid is coming down with Lincoln, Rachel and Prairie this morning. Later this afternoon, Katie and Virginia will be here. I expect this day’s hours will not crawl by so slowly for him.