Our nurses last night didn’t leave a great impression on me. It was one nurse training another. I understand that they are trying to make an effort in society, but hi I live with her. I gave birth to her. I don’t mistreat her in anyway… please stop by my house, you will see that while we are lower middle class, we don’t live in squalor and I don’t ignore either of my girls.
The trainer nurse came in with her trainee around 7pm. Immediately she starts telling me everything that I already know from that day and not entirely getting it right. And when I would try to correct her, she would interrupt me. I quickly got the feeling that she was a know-it-all that always has to answer for everything… and even answers when no one is talking to her and directly asking the question to someone else. And most of the time she is wrong, but in her head she never is. Detest.
Her trainee started taking the whiny tone with Jesse. Meaning in a whine she would console her that is was okay when Jesse whined over taking her medicine. I can’t stand whining. And I when I would tell Jesse that she must take the medicine… she would undercut me with the whiny “It’s okay.”
I know I am tired and my fuse is getting shorter and shorter, but please do not undercut me with my own child. It is beyond rude especially when I am trying to keep her disciplined. And Jesse is quick. Her manners went flying out the window and everything turned into whine central. And with Ativan on board for nausea and with her exhaustion, I couldn’t get her to stop whining.
About 8pm, Jesse had to pee. And for the first time she went rather quickly. I wonder if she is having to overcome some discomfort to go.
Jesse finally passed out about 9pm. I laid down to go to sleep shortly after.
I woke up almost every two hours because the nurse dumping Jesse’s bags had to flush the toilet. I haven’t heard any of the other nurses do that. And then she would come in to give Jesse morphine on the every 4 hour mark. Of course because she’d been a whiny butt… she couldn’t get Jesse to take the medicine. Jesse had figured her out quick and knew she wouldn’t push the issue. I’d tell her open up, take the medicine, and down the hatch it would go without the drama. (still fuming)
At 7am, the know-it-all returned to tell us we had an MRI. Pretty sure I didn’t forget. She also need to draw labs because the night doctor forgot to order them. I need to remember to remind the nurse tonight to tell the night doctor to see if she needs a CBC.
Luckily they were going off shift and the day shift arrived. The nurse we have today, I really like. Very intelligent and talented. And includes me in the discussion instead of talking to me like I am incapable parent and ignorant soul.
About 7:30am, we headed to MRI in the Chili’s Care Center. They assessed Jesse to make sure she had no metal because of the MRI being a magnet. My least favorite anesthesiologist came in to assess her too. He mumbles and then gets frustrated when I can’t understand him. Either that or my hearing is going. Everyone else this morning in MRI has been very nice.
The technicians became very concerned over the tubes in her ears. They called the doctor to come down and make sure they weren’t metal. I didn’t even bother to tell them they were blue plastic ones. I get the impression here that some employees think most parents are just muddling through their kid’s diagnosis with little interest in what is happening to the kid. Or the ability to pay attention. (I keep sounding very bitter today… trying to work through it… ) And they probably see it so many times.
The resident was the one they sent down. I forgot to mention to her about the morphine and Jesse. Hopefully the day nurse yesterday left a note for the day nurse today and it didn’t have to go through the fabulous nurses we had last night.
They had me go through a metal detector before going with Jesse to the assessment room where she was put to sleep with propofoll. She didn’t take long to fall asleep, and I left to wait the 2 hours for her MRI of her pelvis and femur to be completed.
I am concerned that it will show tumor in the bone, but praying that it just shows infection.
By 11AM CT I was getting concerned about getting Jesse’s IL-2 and GM-CSF shots. She has to have the GM-CSF shot at almost the same time everyday. We started at 11AM yesterday. There is an hour grace period.
I decided to call her nurse to get her opinion about how to handle the shots since Jesse was in MRI. She offered to come down and give Jesse her shots when she got to recovery. I like her. She rocks!
Turns out that she didn’t have to come give Jesse the shots in Diagnostic Recovery. And by 12:46pm, Jesse had both the IL-2 shots and GM-CSF. Even though she didn’t want to take them, she did hold still for us today.
Our next visitor was the wound care and discharge nurses. Jesse has a few spots appearing on her back. We think that the Cloroprep used to clean her skin lead to blistering under the patches holding the nephrostomy tubes in place. They changed her tape while I held her on her side. They also put some camoseptin (Sp?) on the sites. Hopefully that and the vicomycin will help her out.
The infectious disease doctor visited about 3pm CT. The MRI shows that something is in her femur. The radiologist can’t tell if it is tumor or infection. The MRI makes hydrogen atoms bounce around using a magnet, but unfortunately doesn’t tell us if they are bacteria or tumor. I was concerned about this because the neuroblastoma is in the bone marrow. The femur isn’t far from the site they biopsied. Plus we already know its in her bone marrow. It is still depressing to think that this is all happening to her.
He also said that they saw a lot of infection in her pelvis girdle and leg muscle. The good news is there are no abscesses to have surgically checked. I have noticed that her labia looks less swollen today. And she seems to be walking a little better when I tricked her into walking around the bathroom in MRI.
The doctor did say that when Jesse’s neutrophils return she might experience a great amount of pain from the neutrophil cleaning up the dead muscle and bacteria. I asked about fever, and he said she might and might not run one. Today she has not (knock on wood) gone above 99.6 F.
I wonder if it is tumor in her femur, if Jesse will lose that leg? This is something I will have to ask the oncologist about.
He did tell me that Jesse will be on antibiotics for the fever for at least 14 days, maybe 6 weeks, and if in her bones 6 months.
After he left the attending doctor and fellow came in. We discussed moving Jesse off the morphine pump. It seems that every time she hits the button, she itches. I also don’t want to knock her fully out. I would like for her to be able to get up and be interested in playing.
We decided to keep doing the by mouth morphine to see if that made her itch. If this doesn’t work, we’ll try diluadid. Yes this is in the same class of drugs as morphine, but maybe just maybe it won’t make her itch. The fellow also talked about reducing her Benedryl amount to where it still covers nausea and itching, but not knock her out.
When they left, our nurse came in with platelets. Jesse’s hemoglobin today was 8.2 (I think she will have to have red blood tomorrow…it dropped from 9.1 to 8.2 in a day). Her platelets were 61; the doctors want her to stay above 75. Her ANC is still 0. They will not release her from the hospital until her ANC is above 500.
Like I keep telling them, we aren’t going back to Virginia soon… I would rather stay here and get her better (would love to use the word cured. And I am praying there is a day I can say that with her still growing and living.)
Mike and Christine are on there way, and should be arriving in a little over an hour. I hope seeing Christine motivates Jesse to be out of bed. Thank you Melinda, Emileigh, and Landan for sleeping with Maggie so she won’t feel lonely. I wish she could have come too, but I am not sure how she’d have done on the flight. It was good to call home and hear her bark last night.
Well just now Jesse has a fever of 101.2 F… bummer.
In my experience the know-it all ones like that nurse are often the most insecure in their own knowledge. Doesn’t make it any easier to deal with, just a bit more understandable I guess.
Anyone would be on a short fuse – my fuse gets short after dealing with MUCH MUCH less than you are!!
Having Mike and Christine there can’t help but be a good thing, and hopefully take some of the pressure off of you.
You and Jesse have some goodies coming your way from me and Dan – a little something to look forward to perhaps. If I was closer, I’d gladly take care of Maggie for you. I have dog trainer friends in Richmond and surrounding area so if you need help, I know I can find you some.
Hugs to all of you.
I can’t believe what you and your daughter are going through. I am so sorry you have to deal with attitude on top of all this anguish. What is wrong with people.
You just stay strong! Don’t let them intimidate you. What is wrong with some people. They must see what this child is going through, and you as the mommy. I cry just reading about this…and your fears for your child.
I keep you and Jesse in my prayers always. Keep your chin up,
Lovingly, Ruth
We’re still praying and thinking of Jesse and your family daily. We should be sending Jesse some good stuff soon to cheer her up! God Bless.
Hi Soosan! Hang in there with the nurses! We Moms are our children’s best advocates, and a calm, business-like manner usually wins the day (or provides us solid ground when we need to elevate issues to a higher authority!) and reassures our children that we’re in control and will take care of whatever is going on.
I don’t know how mail is handled there, but look for a package on Tuesday with Magic Tree House books for Jesse. Hopefully you’ll both enjoy the adventures (they were some of Alex’s favorites as a child)!
We’d be happy to sew a couple of aprons to hold the bags for Jesse (like the waitress apron Alex suggested in an earlier post). If you can post some measurements (sizes needed for the 2 bags, waist circumference, etc.) we have plenty of material and can whip them up and send a couple to you (one on her, one in the washer!). If you think a “smock-type” apron would work better, post waist and chest circumferences as well as length from waist to shoulder), though I wonder if a child’s t-shirt with pockets sewn to the front would be more comfortable as it would be soft and help distribute the weight of the bags better. What do you think? If you like the t-shirt idea, let me know what size she normally wears, and we can get one size larger and add the pockets.
Hang in there!
We met once in clinic, I was so impressed that you had planned the St. Baldrick’s event in Williamsburg, I have that right don’t I? Just let you know I am following along again (Jessica Bensten shared your FB page). Keeping you in my prayers. I recall going to Duke and all of the things that were different, and all of the different nurses and doctors – don’t beat yourself up for your short fuse, but let them know how you want things done. Also suggest maybe they can switch her over to dilaudid, it made Sarah less itchy and she did not build a tolerance to it so quickly.
It breaks my to know what you n your Family are going thru. NO child should have to deal with this. Im staying positive for good results n Praying everyday that she will be back in Williamsburg soon happy n healthy:) God bless you n your Family.
Soosan, you are an amazing Mom and little Jesse is so lucky to have you at her side. Keeping positive thoughts for the results from the MRI. Keeping you and Jesse in our daily prayers.
Hang in there… We love you guys!
Think of you guys often, sending prayers your way.
Just wanted to drop you a note of encouragement and let you know people you don’t even know exist are praying for you and little Jesse daily. I’m a friend of Cynthia Adcock’s and she shared your page with me. Know that you are loved and supported and don’t stress so over your attitude right now. It is what it is, and we do the best we can as we can. Sending you hope and love.
You are never alone. We are here to be your support team and when you need a relief pitcher call on any of us. I know because I have been there with three critcal situations and Gid never leaves you alone, he came through by some special people. Lean on us don’t go it alone. Sending our love, both Mindy and Me.
God