Jesse slept till about 8am this morning. We’ve ended up with a room with 2 windows in it, but with the cloudiness the room is dark.
Chemo was schedule to start at 8am, and except for a little trouble with the pump, we were on time.
The carboplatin ran for an hour. Then it was time for the etopophus. Because of Jesse’s last reaction this ran for two hours. Luckily Jesse had no reaction. While we were waiting the nurse practitioner came in to check on Jesse. We might be able to leave on Sunday to the Grizzilies House. Then Monday go to Jesse’s appointment, Tuesday get the NK cells, and leave.
After the etopophus, Jesse got ifospomide over 1 hour. This ended chemo for the day. Jesse is now finishing up the ethanol locks. While it was finishing, I ran to get Jesse an orange. Sometimes it is faster to catch her hunger if I take care of it myself. By the ABC wall, someone had left water in the floor. I found it, slamming down on my right knee. I’m fine and have had worse bruises. I am extremely thankful I found it alone and that someone else didn’t find it.
About 2, the nutritionist came in to check on Jesse. She didn’t stay long.
After awhile the research nurse stopped by. She is coordinating all the labs that will need to be drawn while we are home.
The child life specialist stopped by to see Jesse. The attending doctor poked his head in the door about the same time, but said he would come back. (It’s 5:24pm now… I doubt we’ll lay eyes on him again.)
Then at 4:30pm, the shoe fell. I knew they’d put her back in isolation. They put her back in isolation because of a gram negative lactose fermenting bacteria that so far has only grown 5000. But since they think it might be klebseilla again, she is back in isolation. While this might be good in order to keep her safe, it has crushed her spirits.
When the nurse practitioner came in to talk about it, it was the blame game. It’s my fault because I took her home when they had a sterile urine catch scheduled for April 23rd. Why this could not be passed onto our clinic at home is beyond me. Why couldn’t they ask our home office or tell me about it? I am so angry with this place and lack of organization and communication.
I told the nurse practitioner it should have been taken on Monday at 8am when I asked for it. They fail all the time here to read their notes in the computer. If they would read their notes, they would not devastate a girl’s freedom. Jesse was so looking forward to walking around the hospital with me.
We will have to wait until tomorrow for what it is. Then we’ll have to wait for infectious disease to have time to come see us, which might not happen tomorrow at all. I personally want a plan of action. I do not want Jesse in the hospital after round 6 because of a fever again. I also want to know if this bacteria has mutated to be resistant to the nitrofurnation, which is supposed to be sterilizing her urine. I am so tired of the run around. I don’t want Jesse on clydamycin because of the C. diff potential.
This has started Jesse back on the path of crying for her dad and sister. The potential of being able to leave the room had kept that at bay. I have held off letting her leave because I had a suspicion and because of the nausea medicines, Jesse is a little loopy. She did complain earlier in the day of her stomach, but by the time we got the phenegran changed from being taken by mouth to IV, it had passed. The nurse practitioner had written it for by mouth. How well does that work when someone is nauseated?
Later on her dad called to let us watch Chris’ play at school. Thank you to the Carlsens’ so much! As they called the attending doctor came back. I will give him points for coming to see us at 5:40pm. He kind of got an earful from me, but yet again he is just the person in the middle. I should have been brave enough to ask the nurse practitioner what her deal is. Why she can’t get organized…
More than likely we will not find out what this is until Friday… and then they won’t probably come talk to us until late. Frustrating.
Right now Jesse is learning to play Temple Run… and feeling a little frustrated.
If I was you I would ask the nurse practitioner what her problem is? Someone like that should not be in the medical field and treat you like you are a nobody, for you are Jesse’s mom not a stranger, sometimes I think you are more informed then she is with Jesse’s care….I would blow a gasket and go to the head of the hospital and tell them how she and the other medical personal are treating you. That should get them on there toes and do report the lack of communication. I know you want the best for Jesse but CHKD looks more promising then St Jude..I cannot believe the incompitance that place has going for them, I can only imagine the emptiness you and Jesse are feeling being away from home and your family. You are a great mother and for that I applaud you and I can understand your frustration and I urge you to do something about it like I said go above everyones head and go straight to the top and get to the bottom of the situation, the more I read your post the sadder I get for you both for the way you are being treated (both of you) so please hang in there you and Jesse are in my prayers and I hope all will come full circle..take care and God Bless