The past couple of days have been very frustrating and infuriating. And the only thing that I have really accomplished is looking like a whiner. I write this all here not to glorify or make myself seem better, but to free myself because I am having a really hard time getting past it. I am not proud or happy that any of this happened.
Yesterday afternoon I received a phone call from I guess Day Surgery, but I really have no idea because besides the lady giving me her name… I don’t remember a location in the hospital she worked being mentioned. And even now I don’t remember a name I got so angry.
She called to tell me that Jesse’s radiation simulation and CT Scan would occur at 2:30pm on May 11. 2:30!! Really 2:30?I told the lady that this time was totally ludicrous. She is 2 years old weighing 24lbs on an appetite enhancing drug.
Of course I know that the lady that was given the job of calling me had no control over the schedule. And I figured there was nothing that could be done. I was so angry that when I talked to Mike, I lost it. Mike wanted the number to call the person that called me, but I explained to him that there was no point. Without my knowledge Mike began calling CHKD to try and figure out to change her appointment. I have asked all along for the earliest times,of course knowing that the people I was begging to plead with the sedation schedulers had no more way of trying to reason with them than me.
It really makes me angry that no one called and asked me what a convenient time would be. What would be the best time for my daughter to keep her the most comfortable? I am dealing with some severe anger issues over this of you can’t tell… and quite frankly I need to get over them. I know that I am no different from any other parent of any child at any age that wants their kid to not have to be hungry. I would add comments about what I think policy should be… but I really don’t know what their policy is so… total waste of time and energy. They might already have the policy of holding a slot for a special needs child, and that slot is filled.
Mike learned through his phone calls that Jesse wasn’t listed in several computers as having an appointment at that time. Eventually when he called our clinic nurse, she located Jesse. Bless her heart she tired her best to get an earlier time for Jesse. She was just as unhappy over the time as we were. When she called scheduling to try to find a better time for Jesse, the scheduler got nasty with her.
This really aggravated me, and when my brother suggested I call patient advocates, I figured I’d give it a shot. Of course that was just a cluster… We didn’t have the whole picture because no one told us where we were going, only for sedation and then to Norfolk General for the CT Scan. When I was called back for the final time, the lady said she would see if she could pull strings for us this time as a courtesy. I told her to forget it, we’d take the time that was given for her and deal with the best we could. Heaven forbid I keep my daughter comfortable. Apologized for wasting her time and hung up. She never said I was a whiner, but using the word courtesy made me feel that I was nothing more.
I lost it so bad from that call. I haven’t not hyperventilated ever in my life, but I was so angry at that point… Mike was outside talking to a neighbor so he missed all the fun.
I really didn’t want to go to clinic this morning at all. Nothing like feeling you have caused nothing but trouble. I am sure in the computer next to Jesse name is “Mother is big fat Whiiinnnerrr!!!.” Funny how when you don’t want to be somewhere there is no traffic or slowdown at the HRBT. And it was 7:00ish when we rolled through there.
At clinic, everyone was really nice, and thankfully our nurse wasn’t mad at me. I did tell our doctor that I wasn’t going to give her anymore of the appetite enhancer until May 18th because her first radiation is May 17th scheduled for 2:30pm. I just feel it is torture to give her that and deny her food. Whether he agreed with me or not, I’ll never know. He is good about being neutral on certain things.
Jesse’s labs came back fantastic. And we were almost out the door when the patient advocate found us. I was trying to get out of there before that happened. I really didn’t want to deal with her. She was very nice, but I think I managed to confuse her pretty good. Our nurse was able to get it cleared up for her.
As I was driving home my phone rang.
Lady: “Hello this is CHKD Day Surgery. Do you have all your information for your daughter’s procedure tomorrow”
Me: “Well I know she can’t eat after midnight, and nothing after 8am” ( I said)
Lady: “Yes”
Me: “Do you know where we go?”
Lady: “Hold on let me look it up”
Me: “If I loose you please call me back because I am getting ready to go through a tunnel”
Mental head though: You are going to call me and ask me if I know what is going on and not have our all our appointment information in front of you. Really?!
Lady: “Yes ma’am you’ll come here”
Me: “Where is here? Day Surgery on the 3rd floor?”
Lady: “Yes”
Me: “Great. Thanks. See you tomorrow.”
Luckily our clinic nurse called them to. She was told that Jesse can have clear foods like Jello (which she refuses to eat, maybe she will tomorrow) and apple juice until 10:30am. That will make it a little easier I hope.
I feel totally in the dark on radiation. I really wish that someone had set down with us to explain it all down to the smallest detail. I feel like I am flying blind. What sedation drug will they use? Can I go with her for the simulation? Will a doctor be in the room? What is the rest of the schedule? How many treatments? How often? Can I have a copy of the schedule? How exactly is this going to work? Maybe tomorrow I will get the exactly how this works tour.
I do know now that I can go to Norfolk General with her. I also know that it will be the technicians running the machines. I did ask for the schedule, but that seems to be the greatest mystery of the universe. Our clinic nurse told me that she can’t even find it in the computer system. So tomorrow is going to be super frustrating because of the lack of food ( I can’t eat in front of Jesse especially if she can’t eat. That is just wrong) and I have this feeling I am going to have to fight them for a schedule. And I don’t even really know who them is that I am fighting to get the schedule from.
This just feels like it all at someone else’s convenience. The only people that have ever asked about my and Jesse’s convenience has been the oncology clinic. And basically at this point I am very frustrated that I don’t understand what is going on and I need times. I need to plan for where Chris will be, and I need to keep my boss in the loop. While Jesse is a huge responsibility and her health is really important, I have other things that can’t just be dropped. I can’t just drop Chris. She’s not old enough to stay home alone. I need to plan for where she will be so that I can coordinate with the people who will watch her.
And I know that Mike is more than willing to help, but he a job that needs him to be on location. I do have a job that allows me to work anywhere, but I need to keep my boss in the loop of where I will be. We have to work to keep everything going.
I really want my boring life back. I want my daughters to be 100% healthy and the only issues we are dealing with are not listening or paying attention.
Vent whenever you need to, it is healthy and your daughters need you 100% of the time!! I know it sounds candid, but try not to let them get you down and remember you are in charge. Hang in there and keep remembering “PMA” for Jesse (that’s Positive Mental Attitude). Hope you have a better week and call if you need anything anytime!! Cindy
Thank you. I really appreciate it 🙂
Soosan, I can’t tell you how much I admire you and your courage. Being a mother is the hardest thing I have ever done, and to think you are doing the hardest job and have a sick baby. I admire that you share the rotten stuff and the anger, no one can be strong all of the time, and knowing that you are as human as the next mother makes me proud to be a fellow mom. I cant imagine what you deal with everyday. I think you are doing an amazing job, both you and Mike. I have faith that both of your girls know how lucky they are. Thank you again for sharing everything, there are so many people following your journey. You are a special woman Soosan. Thank you for being you.
Thank you for for your comment and compliments. That means a lot 🙂
Hang in there! When you feel angry & frustrated remember you are Jessie’s advocate so you can yell & whine all you want. Who care’s? Noone cares for your daughter like you do! So do it girl!! Keeping yall in my prayers!
You are not whining, you are not unreasonable, you are your daughter’s advocate. Nothing you want is unreasonable nor is it unnecessary. I am sorry that everyone is expecting you to just roll with the punches I understand, and my advice is use your nurse at clinic, I would have never made it through the last year without Theresa, ask if you can call Radiation Oncology and who is the best person to speak to. Ask for a schedule they should be able to provide it. Voice your concerns.
I hope to meet you some day in clinic. My Sarah is usually there on Thursdays and we are in isolation room #1. Sarah had an allogenic stem cell transplant at Duke in September. I learned of Jesse’s site from Jessica Bensten. I will keep you all in my thoughts and prayers, and send a big virtual hug.