Zoe got some benadryl last night to help her sleep. I took that opportunity and passed out myself. Apparently a little to passed out. Dietary brought her liquid tray (broth, tea & ginger ale) and gave her the tray! They put either the tea or the ginger ale in a cup with ice, pulled the table over to her bed and gave her, the little girl on fluid restriction, the entire tray. Needless to say she drank her daily allowance in one sitting before anyone saw her. It was all done pretty quietly because the nurses and I didn’t know it was happening until was too late. The nurtritionist called dietary and from now on Zoe’s trays will dropped off at the desk and her nurse has made 2 signs for her room that say “Do not give anything to drink! Patient is on fluid restriction”. While I was taking a shower she tried to talk the chaplan and a cleaning person into getting her a drink. She was alsmost successful with the cleaning girl who was stopped by her nurse before she could give Zoe the big class of water she had gone to get her.
The sad part is that this is what she’s been reduced to. Begging a drink from anyone who passes her room. She’s thirsty but her body can’t process any extra fluid.
She should be getting some pediasure here soon. Dr. Boyle figures as long as she’s drinking it may as well have nutrients in it and not just be empty fluid.
DO NOT FEED THE ANIMALS.
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This is Zoe’s current Christmas list. This may change once she can eat and drink normally again.
apple juice
orange soda
dr pepper (reg./diet cherry vanilla)
diet pepsi
regular pepsi
capri sun (lemonade/red/green)
bottled water
root beer
diet coke
pink lemonade
orange juice
bucket of ice
milk (white/chocolate)
green gatorade
sprite
fruit punch
ice tea
watermelon
cantelope
apples
strawberries
oranges
peaches/nectarines
corn
chocolate ice cream
pop corn
pretzels
cheese cubes
cones for ice cream
bananas
grilled chicken
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The nurse just changed the dressing on her PIC line. The kit is supposed to remain sterile but she turned her back for a ssecond (that’s all it takes) and Zoe had her unsterile little paws all over everything and had it spread out on the bed. So she got to keep that kit and the nurse got a new one. Since Zoe had her own kit she put on her mask, her gloves and prepped my arm.
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Closely monitoring her input/output has obviously yielded the desired results. Her weight is down. Sounds like a bad thing but since her weight has been fluid it’s actually good.
The new diuretic is doing it’s thing. She pees constantly. She’s actually wearing the nasal cannula (her oxygen) in her nose instead of taped just below it. She sounds like she has a speech impediment. Mom I’m bored comes out sounding like Mom I’m bowed. It’s pretty hilarious.
She’s been allowed to have 15cc’s of ice tea or water every hour for the last 2 days. Since she looks good Dr. Boyle increased her daily fluids by 250cc so she can have 25cc an hour today. She’s pretty excited about that.
She hasn’t slept at night in 2 days. She takes cat naps during the day and then is up chit chatting with the nurses at night. Amusing yes, but on the flip side she’s exhausted and it’s making her cranky. She’s decided that she would handle potty time alone and she wants everyone out of the room while she does it. Aunt Nik got to here her yell at me last night because I kept peeking to make sure she wasn’t trying to sneak something to drink.
I’m going to see what i can do about getting her out of bed this evening and moving around a little. Maybe she’ll sleep better.
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Mike was off last night and wanted to stay with Zoe and apparently they had a bad night.
First off, my daughter is a sneek. I’m aware of this. Everyone else it seems to underestimate her. She has a new found love of dental hygeine. She wants to brush her teeth 3 times a day but that’s only because she wants to drink a little of the water she rinses with. Gross? Desperate times call for desperate measures. Last night Mike said she would make herself cough until she spit something up and then requested water to rinse her mouth with. 1oz goes in and a 1/2oz got spit out. Because of that her fluid intake record is wrong. She’s more in the positive than her chart says she is and Dr. Boyle is not happy. She’s been banned from ice chips and brushing her teeth. She is getting 15cc of tea or juice every hour and that’s it. She’s being very closely monitored on both her intake and her outtake. Her liver is larger today than it has been and now her spleen is enlarged due to fluid back-up. Again, Dr. Boyle is not happy.
The enalrged liver is causing her to have some difficulty breathing. It’s taking up space usually reserved for lung only. She’s still on oxygen and they’re keeping a close eye on her. She’s been prone to fits since last night so her heart rate and pulse have spiked and are a little on the high side.
She was playing with her dolls this afternoon and got a case of the shakes. She wasn’t cold and said she couldn’t stop her arms from shaking. The Dr’s came in and listened to her and when she laid down it stopped and hasn’t happened again. Could have been a muscle spasm but no one is really sure. Zoe said she felt fine so that’s another thing that’s being watched.
She likes the smell of the alcohol pads, the bathing cloths and the adhesive remover pads (smell like oranges) so she seems to be calm when she has one of those items to her nose. We’ve got a steady supply to keep her happy.
She’s napping now and her heart rate is 146, bp is 91/52 and SPO2 is 100. She looks peaceful. On an unpleasant side note, she’s very thin and her heart is so large and working so hard that you can actually see her chest flutter with her heart beat. I’m keeping my fingers crossed that a new one comes soon. I think she’s hung in there long enough. It’s time life cut this little girl a break.
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Zoe’s Dr. is back and asked what she’s still doing with the same heart. She said they just couldn’t find one good enough for her while he was gone. He agreed. He had turned one down just before he left. It wasn’t in very good shape apparently. Just not good enough for our girl he said.
She got some ice tea 2 days ago and we spent all that night and yesterday with the aftermath. Her stomach was upset (but no vomiting) until late last night when she finally fell asleep. So far today she feels good.
She’s stable with no changes. She’s in a holding pattern. Ice chips, IV’s and bed rest until a new heart good enough for our girl comes in.
On a side note: I was told yesterday that all members of Zoe’s family need flu shots (mom, dad, gabe). Zoe got her yesterday. I went yesterday and got one and Mike already had his. Gabe is next and he’s not gonna be happy about it. I’m asking any family members or friends who plan on being here often or for extended visits to please also get a flu shot. I’d hate for an illness to keep her from getting a heart.
My laptop is back up and running thanks to my dad for getting me a new adaptor. Thanks Dad! Zoe requested a rocking chair in her room the other day. Here’s what happens to her after 2 min. in a rocking chair with mom
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All the pictures you see here are of a very sick Zoe. I don’t want that to be how everyone sees her. People who know her will remember the Zoe in these pictures. Those of you who don’t know her get to meet her for the first time.
Showing off her new hair do and missing teeth.
This is my favorite. She always looks like sh’e up to something because she always is.
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Mike is off so he’s staying with Zoe while i come home and do laundry, get caught up with homework and pet the cat who is not the solitary creature everyone says cats are.
We’ve had our ups and downs the last few days. It seems Zoe can’t really eat or drink anything without throwing it up. That’s caused by the fluid enlarging her liver (they just can’t seem to get it do go down enough) which is caused by the fact that her heart is getting worse a little every day. She seems to tolerate ice chips and tiny sips of ginger ale fairly well spaced throughout the day. She’s still got some spunk left though. I caught her trying to sneak some water the other night when I got back from the restroom and last night her dad left the room and when he came back she had gotten out of bed, chugged a small glass of water and was throwing up. She’s very thirsty and miserable.
They started a nutrient solution through her iv a few days ago to get some calories into her. She now weighs 36lbs. She’s the height if an average 6 1/2 yr old girl but is about 11 lbs underweight. Those who have come to see her can attest to how thin she is.
Dr. Boyle left town yesterday for a meeting and will be gone until Wednesday. He says the good news associated with that is that hearts ted to come while he’s gone. He’s still available via cell phone, pager and email and all organ calls come to him to we’re all keeping out fingers crossed.
Friday night she had some irregular heart rhythms and Dr’s are concerned about the added strain on her heart. They think it may be necessary in the future to put her in a breathing tube and sedate her to take some of the strain off. There are a lot of complications and added risk involved in that procedure so they’re trying to avoid having to do it, but wanted me to know it was a possibility.
Since I’m home, here’s Zoe passed out cold after her PIC line placement and heart cath:
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I don’t have alot of time and my laptop adapter has a short so it’s dead. Here’s what’s going on:
Earlier in the week Zoe had a stress test which didn’t yeild good results. Due to her heart being in survival mode it’s pulling blood away from her extremities and other organs (including her stomach) which is the cause of the vomiting. She went back to the ICU to be started in milirinone to help her heart pump the blood more efficiently which took care of the upset stomach/vomiting. We went back to the regualr cardiac unit the next day.
Zoe had a PIC line put in yesterday and a hart cath done. She’s been coughing and her liver is slightly enlarged due to a fluid build-up. The oral lasix just aren’t doing it for her. After the procedure she went back to the ICU for recovery. We were supposed to go back to regular cardiac unit today but that’s not going to happen. Because of the enlarged liver she’s throwing up again and the fluid in her lungs is still making her cough. Based on that she’s going to be staying in the ICU until we can get this under control. They’ve increased the milirone and put her back on IV lasix. She can’t eat or drink anything today and is allowed ice chips if her throat gets dry. Hopefully this plan put her back on the upswing and we can get back to the regualr unit in the next day or so.
Zoe is officially on the transplant list as of last night. Her body size, blood type and lack of antibodies makes her donor pool huge so hopefully she won’t wait long.
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