#133 I’m so happy to be home again

I just had the worst experience at a hospital that I’ve ever had…and I’ve had a lot! On the 26th of  October I had to call an ambulance to take my daughter to the er because her throat had swollen almost completely closed due to an infection that went crazy. After three days of IV meds she wasn’t getting any better so she had to have surgery to cut out the infected portions, including her tonsils, adenoids and part of her sinuses. I was told that after two days of IV antibiotics she would be well enough to go home. That didn’t happen. She has to take ativan normally because she get very anxious and has panic attacks, and after being there for such a long time with her, I wanted(and needed) to come home and shower and sleep for a few hours. She wanted to have her best friend come and stay the night with her so I sent Rick to pick up her friend and I headed home. On my way out I spoke to her nurse, gave her my cell number and explained that she needed to have her ativan and pain meds on time, and that if she was having any problems the nurse was to call me, and I would come right back. We only live four miles from the hospital so I figured it was safe to leave the girls there for the night without  any issues. When I woke up in the morning I had a phone call, not from the hospital but from my best friend who had called Jesse to check on her, and I was told that her blood pressure was sky-high because she was in a ridiculous amount of pain, and hadn’t had her anxiety meds. I immediately called the hospital and spoke to the nurse manager and said that I wanted her personally to give Jesse her pain and anxiety meds, and to call the hospitalist and that I would be there within twenty minutes and things had better be improving by the time I got there. I grabbed my coffee cup and Rick and headed back to the hospital as fast as I could. When I arrived at Jess’s room there were four nurses in her room and the nurse manager had called the doctor about the high blood pressure. Jess had to be given not only her pain and anxiety meds but also had to be given an IV shot of blood pressure meds. She’s never in her life had high blood pressure, so I knew something had to have happened while I was gone. Come to find out, the nurse that was supposed to be taking care of her had actually neglected her. Because Jess was in so much pain she wanted to get into the shower and breath the steam in the hopes that it would ease some of her pain so she pushed her nurse button to have her IV disconnected and covered up. It took the nurse over an hour to come in and unhook her. Then after Jess had her shower she pushed her button again to have her IV reconnected (her pain meds were in the IV so she could give it to herself when she needed it) and it took over an hour and a half to get the nurse to come back in to connect her to her IV pain meds, so in that time she had no pain meds and she started to have a panic attack because she was so afraid of what was happening to her. It made her pain uncontrollable, and a few other times throughout the night Jess had asked for some vanilla pudding, because that was the only thing that she could actually swallow, and was told by her nurse that she shouldn’t be eating that, it wasn’t good for her. Now, the surgeon had told us that she should eat as much as she could because it would help to heal her throat after the surgery, and for me to push anything that I could get her to eat or drink, it didn’t matter what it was as long as something was getting in her. I was furious at this nurse for not calling me when Jess started to have problems. To make matters worse this nurse treated my daughter and her friend like they were an inconvenience, and was rude and condescending when she did speak to them. Her friend had to go out to the nurse’s station to ask for anything, and it wasn’t even her asigned nurse that eventually helped Jess, it was the other nurses who finally brought her something to drink and a little cup of vanilla pudding. As soon as Jess was settling down and her pain was a little bit better under control I called for the floor nurse manager to file a complaint. She spoke to me and Jess and her friend for a long time and said that she needed to call in the Senior Director of Nursing for the hospital. The Director was very upset that a nurse had done this to a patient and assured me that they wouldn’t be taking this lightly. I told her as calmly as I could, that I wanted this nurse fired and that I already had a Lawyer on retainer because of my husband’s issues(which I do), and that I was not going to let this go until both Jess and I were satisfied. After this whole incident Jess actually started to get worse. She developed yet another infection. The amount of pain she was in had set her healing back a few days and she wasn’t able to swallow anything at all…not even the pudding. From crying in pain her throat had swelled back up to the point that she couldn’t even swallow water again. We were told that there was an issue with the shower leaking into the room below that needed to be fixed, so they moved us into a suite that was probably three times the size of the original room and my wheelchair actually fit everywhere in the new room so that I could get to Jess more easily when she needed anything, so that was a huge help to me. It took three days of her not eating or drinking and steadily getting worse before the hopitalist would listen to me. They had been cutting down on her pain meds, she couldn’t even try to swallow anything so she was then dehydrated, even though she was on continuous IV fluids. I finally lost my cool when a doctor walked into my daughter’s room and said that she was taking away the IV pain meds all together, and only letting her have oral pain meds when she still couldn’t swallow anything at all. They had to have suction running day and night for Jess to suction out her mouth because she couldn’t even swallow her own saliva. So in a kind of screaming, kind of crying rant I told this doctor that I wanted the IV pain meds doubled, not changed to oral. And, that I also wanted her to add Toradol for the inflammation as well as a rinse for her mouth that would help with the infection in her throat. She tried to tell me that that wasn’t how they would normally take care of someone after throat surgery, and I told her that I had no problem having her written up for my daughter being in worse shape then than when she was admitted…their way was obvously not working! I believe my exact words were “Don’t screw with me when it comes to my daughter’s health”! I convinced her to try things my way for one day and see what happens. By the next morning Jess was up walking around and wanted to go down to the cafeteria to pick out her own breakfast. The nurse at that time told me that she was only to have liquids until the doctor changed the orders and I said that I didn’t care what the doctor wanted, I was taking my daughter in search of scrambled eggs. The same doctor came in right after Jess had eaten her scrambled eggs and was dumbfounded at how fast she was getting better, and I couldn’t help but lecture her on listening to the patients and their parents, because she didn’t know my daughter as well as I did. She actually agreed. Jess is doing better now, she, very seriously, told me as she was getting better “Mommy, please get me outta here before something else goes wrong”. I don’t blame her, I was more than happy to be able to bring her home again. The spots on her lungs are pneumonia and are better now, she’ll be going to have everything checked out in a few weeks. Something about being so concerned about my daughter kept my mind off of my own pain and I wasn’t tired all the time. I don’t know if it was adrenalin or what, but I haven’t had any issues myself. I only took my regular daily meds and didn’t have to take any extra pain meds, that hasn’t happened in a long time. I usually have to take pain meds throughout the day just to be able to keep moving. I’m going to have to find something to focus on now so that I keep feeling as well as I have this past two weeks…just as long as it isn’t a health issue with my family. I thought I would throw in a picture of Jess in a Halloween costume  two years ago. I also wanted to thank everyone who sent well wishes and prayers for Jess when she needed it so badly. Thank you so much.


4 thoughts on “#133 I’m so happy to be home again

  1. Yay, I am so glad Jess is out of the hospital and feeling better. I am telling you, that toradol is amazing, I wish we could get it over the counter, my life would be a happier place.

    So…you need a cause so you can focus on something else and not inward – that is great that you weren’t taking pain meds and had so much energy! You sound feisty, I’ll bet those nurses were running scared!!! Maybe something that upsets you in the community or in are world and you want to become an activist?

    I hate when doctors don’t listen to moms. When my daughter gets strep throat, she doesn’t have those white spots, just a red throat. They will look in her throat and tell me she doesn’t have it. But i know all of her symptoms now I will tell them yes she does, because after 14 years, I know how she presents with it, so just do the throat culture and do me a favor and start the antibiotics now so I don’t have to come back here to the pharmacy tomorrow. Some docs listen, some don’t then call to apologize. Don’t mess with the momma bear! 🙂 🙂

    Enjoy being home and hope she feels better with each day! How are you feeling today, hopefully you had a good night’s sleep and didn’t stay up until 2 with the election like the rest of us crazy people!!!

    • DearJenni,
      I think you’re right about finding something to do…I just don’t know what because I can’t commit to any kind of schedule even if it was something part time. I miss working so much.
      I think that this doctor that I lost my mind on will never do anything like this again for fear that someone like me will eat her for breakfast. Hopefully she learned a valuable lesson. Maybe you should have your daughter’s tonsils out while she’s still young so that she doesn’t get strep as much…if ever again. The older you get the harder it is. I’m watching the mail for whatever you’re sending, but I still can’t wait for the book. I know it can be a long process but you’ve peaked my interest and when it does come it will be like Christmas to me. Have a great day and I’ll try to do the same.
      All my love,

  2. You were a fantastic advocate for your daughter. Bravo. I think pain may be one of the most poorly understood and under-treated symptoms of all. It was interesting to read how your daughter’s escalating pain was starting to cause a cascade of other symptoms and yet the staff was failing to track it back to the source of the problem. I’m glad and grateful she’s home and so much better now.

    • Dia,
      You are absolutely right about pain being under-treated for fear of creating drug addicts, but for those who need to heal from anything serious the pain meds should be last on the list of worries when they need tho have the pain under control to be able to heal properly. I wish that I could get more doctors to understand that. You would think that common sense would tell them that already.One day after I made them double her pain meds and give her the antibiotics and the meds to get the swelling down through her IV Jess was quickly able to talk and eat soft foods as well as start to take the oral pain meds and was released the next morning.

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