Sorry, I didn’t lots our daily update yesterday. We stayed quite busy as we have since we got here.
Shyanne had some PT in the morning and then OT in the afternoon. She was so happy to have people come play with her. She is getting stronger and stronger and her therapist are always impressed at her progress because despite everything she’s been through she doesn’t give up… she’s the little girl who could!
Yesterday was also dressing change day but she didn’t get to take a tub bath as she was still connected to her IV. She’s been attached since we got here which has been a bit of a challenge to keep her untangled.
I’ve been doing as much as I can to keep her entertained. We rotate through her playtime, signing times dvds, high chair time (I really want to find her a little rocking chair of sorts because she loves rocking), and reading books.
She’s been losing a bit of weight but her doctor said she is doing so much better than they could’ve hoped for. The goal right now is to keep her eating as we get through the rest of this treatment process. Her doctor apologized for coming late yesterday but said a visit with her was the perfect way to end his day.
I’ve found that as long as I fix her meals like I would at home she usually eats pretty well. Once she’s finished her regular meal then I offer her whatever they brought on her tray… many times she will eat a good bit of it too. I also try to give her snacks in between meals and before bed as well as offering milk and juice throughout the day.
She doesn’t get really thirsty but one of the nurses said it was probably because she is getting so much IV fluid right now.
She started her IV chemo around 6:30 last night and will have it today too. Tomorrow she will get the Erwinia shot again and I’m praying she doesn’t have a reaction this time around.
We FaceTimed with Daddy for a bit before going to bed. I watched some ‘Homestead Rescue’ and got some ideas for a chicken coop and greenhouse. They also had some pretty good ideas on a solar kiln and storm shelter but I don’t think we’ll need those.
I held her all night as she sometimes gets a fever and gets sick during her chemo. I’m scared that she might start the ping up when she’s in bed and she doesn’t know to roll over when it happens. I don’t want her swallowing anything back down or inhaling it and causing more issues.
She slept pretty good even though she was a bit restless. There was an issue with the IV at one point where it was saying ‘air in the line’… a bit scary to see but they have filters in the lines to prevent anything from getting to her. She didn’t like being woke up for eyes drops and labs either but she didn’t fuss a lot and went back to sleep.
Ohh… and she peed all over me and her at about 3:30 this morning. I had to put her in bed, putting a blanket under her so she didn’t get the bed wet, and get her wiped and changed. Then I had to get cleaned up and changed. She also got the blanket we use as a nursing cover and her Boppy… we should have a clean blanket coming and I’ve ordered a new Boppy cover so we have a spare for the future.
This happened the other night about the same time but she was in her bed then. We had to wipe her down, change her and wipe her bed down and change the bed linens… not an early morning wake up call that I had asked for… lol.
She’s still sleeping right now but her breakfast tray just got here so I think I’ll probably sneak out to the Nutrition Room and grab some coffee and a cup of ice before she gets up.
We’ll be checking back in soon!
DIY Central Line Vest
I’ve also kept busy making a couple of central line vests. These just help to keep little hands away from the ‘new toy’ and keep everything safe and secure. Shyanne managed to get a cap off one line yesterday… I’m not sure how she did it but I was shocked to find it in the high chair when I picked her up!
It’s very important to keep the lines clean and capped. Any bacteria would go into her blood stream and pretty much straight to her heart. Central line infections are very serious and not something we ever want to deal with.
If she ever pulled her lines out that would be an EMERGENCY and she’d be headed back to the OR!
Yesterday I found a couple of DIY ones online. (Here and here, if you are interested.) Unfortunately, I don’t have access to a sewing machine but the coordinator from Arts in Medicine said she was going to look into getting one.
I did manage to make a pretty simple one… it took me a bit of time to get the pattern just right as Shyanne just wanted to play with the newspaper and she ripped a couple of my first attempts.
The finished product is pretty nice although I think a different material would work out better in the long run. She loves how soft this is though and I love how easy it is. I think I could even add some ties to make it where you don’t even need and fasteners. I just tied the shoulders this time around as she kept ripping the paper ones so I cut them big and adjusted them when I got it on her.
I let her play for a while with it on… it would normally be under her clothes or worn alone. One of the nurses said I could sell them but that’s an idea for later… the best I can do right now is just show you all the pattern.
It’s just a basic pattern that can be cut on the fold of fabric to make it easier. I’ve got the areas labeled below:
The should straps can be cut long for snaps, buttons, clips, or just tied, if you like. You could also sew them together. (If you sew this you probably want a lining in it and you’d need to allow for seam allowances.)
I cut a slit in the left side so I could secure it around her lines. This could be done in reverse if needed. I also attached two snaps to each little flap. These attach to the underside of the right flap.
The right flap simply fold over the left and snaps to the side to keep everything secure. I only put three snaps on mine but four would be better. I ran the lines through the gaps in the snaps and then around to the back.
I had originally intended to make a pocket to run the lines through on the back but ended up making a simple strap that snaps on. You could sew the middle to the vest but you want to be able to undo the top and bottom so you can have easy access for the lines. Mine wasn’t centered very well either… oops!
If using these are shirts I might make them a little extra fancy … who says medical gear has to be boring and plain?
I might also make a couple of simple ones to put under her shirts when she isn’t attached to anything. That way she isn’t playing with her toy when we change diapers and she isn’t stuck wearing just onesies all the time.
I used fleece to make this one and the one I made yesterday. It’s very soft but it doesn’t necessarily give any kind of support or structure to the vest. It is easy to work with and I don’t have to worry about sewing anything as it won’t fray but I may make some of these from some material I have at home when I have access to a sewing machine.
Feel free to use this or adapt it as needed. If I ever get into the business of making them I’ll let you all know.