First I need to say thank you.
Thank you to everyone who has been praying for Julia and her fears an anxieties about this next surgery. In the 4 days after her pre-op appointment our days were filled with crying, fear, screaming, whining, and sleeplessness. On Monday word went out to our friends, family, and church staff to pray for Julia and an amazing thing happened. Peace began to reign in our home again and things felt much more settled. I was in close contact with our ChildLife worker as we made a plan for Julia. We decided to wait until Friday for her therapy session so that it was closer to the actual surgery day. This was made possible because Julia was much calmer than she had been all weekend- an answer to all the prayers being lifted up on our behalf.
Friday we headed to the hospital for her appointment. She was excited when we got out of the van to see the helicopter taking off over our heads- literally. We had parked directly underneath the landing pad. Crazy to watch from so close. It was exciting, but sad to think it was going to pick up someone very sick. I remember standing at her window when she was first diagnosed and praying for every arrival as the stretcher was wheeled down the ramp below.
We started our visit in the cafeteria, of course. I was very excited it was barbecue chicken day! Love me some Sodexo food :) I know, I'm weird. Julia had the usual.
We walked by to check out the surgical unit again and remind her where she would come on Monday morning at 6am. Her surgery will begin at 7am. We are not sure yet how long it will take, but she is the first case of the day...
Then we went up to the 9th floor. Julia had fun pointing out that the picture of her and her friends was hanging everywhere she looked....
Then we started her session with Ms. Stacy and her friend "Lucy". Lucy is having surgery on Monday, too and needed Julia to tell her all about it. We went through the process step by step to prepare Lucy, sedate her, start her IV, etc. Julia knew the drill well. She was somewhat hesitant and quiet, but played along.
Then we pulled up Lucy's shirt to show her cecostomy. This is the first time Julia has ever seen what one looks like.. At first she was scared and turned her head away, but eventually became interested. We talked about it, touched it, and described its parts...
Then we hooked Lucy up to the tubing to do a flush. And these amazing medical dolls can actually be flushed with real water...
In no time, Julia was doing it herself. We flushed, unhooked, capped, and rehooked, several times.
Then we talked about staying in the hospital. Ms. Stacy has been amazing. Aside from doing play therapy with Julia on Friday, she also wrote letters to the OR and anesthesia describing the way we would like things to go. She was also able to get Julia a room on the 9th floor! (instead of the 8th where we were in January) This means Julia will be at 'Camp Brenner' where she feels completely at home with the nurses, staff, therapists, and setup. This news really helped her feel more at ease. Ms. Stacy and ChildLife rock!!
Ms. Stacy then had Julia write a list of everything she wanted to do during her stay. Here's her letter along with her surgical goody bag from Ms. Stacy...
Julia is really looking forward to the visit from Cree, the border collie, that Ms. Stacy set up. She knows the way to Julia's heart! Well that, popsicles, and paint :) She has been carrying her little Cree trading card with her everywhere she goes.
We have given her some space to process for the past 24 hours. Tonight at bedtime she told me, "I am really excited about seeing Cree at the hospital, but I still really don't want to have surgery." I love her honesty. We talked about it for a long time. I told her about my own thoughts and anxieties before surgeries and empathized with her feelings. Then we talked about going back to the OR and taking her "special gas nap", so she doesn't have to feel anything. She said she still just wants me to go with her. I told her I couldn't because I wasn't a doctor or nurse. She told me I should become one. I said that would take too many years of school. She said, "That's okay I'll stay with a babysitter and wait for you to be done." An answer for everything. I asked her if it would help if she took my picture with her and she said, yes. So hopefully that will do the trick.
Tomorrow we pack. Unfortunately, we have that down to something of a science by now.
And I finally took myself to urgent care today, too. I've had a sinus infection for a while and last night, took a turn for the worse. I started losing my sense of balance and becoming dizzy all the time. So, no more denying it. I can't go to the hospital sick myself. When the doctor today asked how long I had been having symptoms, I said seven weeks. She looked at me , "Seven what?!" I know, I know. Did I mention my daughter has is on her second hospitalization and third surgery in that time? Not to mention 11 doctor's appts? I think it's pretty good I'm here already. So with my meds on board we are ready for this week.
We are so thankful for all of you out there who are covering us with prayer, caring for Carter, sending us cards and assistance, and standing at the ready for whatever may come up. As another blogger mom said today...
"I don't know what this week holds...
but I know WHO holds this week.
Thank you to everyone who has been praying for Julia and her fears an anxieties about this next surgery. In the 4 days after her pre-op appointment our days were filled with crying, fear, screaming, whining, and sleeplessness. On Monday word went out to our friends, family, and church staff to pray for Julia and an amazing thing happened. Peace began to reign in our home again and things felt much more settled. I was in close contact with our ChildLife worker as we made a plan for Julia. We decided to wait until Friday for her therapy session so that it was closer to the actual surgery day. This was made possible because Julia was much calmer than she had been all weekend- an answer to all the prayers being lifted up on our behalf.
Friday we headed to the hospital for her appointment. She was excited when we got out of the van to see the helicopter taking off over our heads- literally. We had parked directly underneath the landing pad. Crazy to watch from so close. It was exciting, but sad to think it was going to pick up someone very sick. I remember standing at her window when she was first diagnosed and praying for every arrival as the stretcher was wheeled down the ramp below.
We walked by to check out the surgical unit again and remind her where she would come on Monday morning at 6am. Her surgery will begin at 7am. We are not sure yet how long it will take, but she is the first case of the day...
Mark your calendars!!
Saturday, May 21
First Annual Fun Walk/Run 5K for the Kids of Childhood Cancer Foundation.
Then we started her session with Ms. Stacy and her friend "Lucy". Lucy is having surgery on Monday, too and needed Julia to tell her all about it. We went through the process step by step to prepare Lucy, sedate her, start her IV, etc. Julia knew the drill well. She was somewhat hesitant and quiet, but played along.
Then we pulled up Lucy's shirt to show her cecostomy. This is the first time Julia has ever seen what one looks like.. At first she was scared and turned her head away, but eventually became interested. We talked about it, touched it, and described its parts...
Then we hooked Lucy up to the tubing to do a flush. And these amazing medical dolls can actually be flushed with real water...
Ms. Stacy then had Julia write a list of everything she wanted to do during her stay. Here's her letter along with her surgical goody bag from Ms. Stacy...
Julia is really looking forward to the visit from Cree, the border collie, that Ms. Stacy set up. She knows the way to Julia's heart! Well that, popsicles, and paint :) She has been carrying her little Cree trading card with her everywhere she goes.
We have given her some space to process for the past 24 hours. Tonight at bedtime she told me, "I am really excited about seeing Cree at the hospital, but I still really don't want to have surgery." I love her honesty. We talked about it for a long time. I told her about my own thoughts and anxieties before surgeries and empathized with her feelings. Then we talked about going back to the OR and taking her "special gas nap", so she doesn't have to feel anything. She said she still just wants me to go with her. I told her I couldn't because I wasn't a doctor or nurse. She told me I should become one. I said that would take too many years of school. She said, "That's okay I'll stay with a babysitter and wait for you to be done." An answer for everything. I asked her if it would help if she took my picture with her and she said, yes. So hopefully that will do the trick.
Tomorrow we pack. Unfortunately, we have that down to something of a science by now.
And I finally took myself to urgent care today, too. I've had a sinus infection for a while and last night, took a turn for the worse. I started losing my sense of balance and becoming dizzy all the time. So, no more denying it. I can't go to the hospital sick myself. When the doctor today asked how long I had been having symptoms, I said seven weeks. She looked at me , "Seven what?!" I know, I know. Did I mention my daughter has is on her second hospitalization and third surgery in that time? Not to mention 11 doctor's appts? I think it's pretty good I'm here already. So with my meds on board we are ready for this week.
We are so thankful for all of you out there who are covering us with prayer, caring for Carter, sending us cards and assistance, and standing at the ready for whatever may come up. As another blogger mom said today...
"I don't know what this week holds...
but I know WHO holds this week.
And that is enough."
1 comment:
Sounds like you have prepared Julia the best way you can. Praying for her, the doctors, and you, Billy, and Carter. Looking forward to hearing good results. Much love is sent to the Scavo family!!
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