Now that Tiara’s condition had stabilized and she was attempting to relearn all the skills she once knew, the doctors started discussing moving her to a rehabilitation facility. I was hesitant to even consider such a move even though they told me eventually it was bound to happen whether I liked it or not as it was the best thing for Tiara. Ugh! Everything was starting to change and I wasn’t totally ready.
Of course while in the ICU she always had a nurse either in her room or stationed directly outside the door but that was all about to change. Living in the ICU is like living in a fish bowl. The whole front wall is glass so everyone can see in at all times. The great thing about living under a microscope is that I knew she was safe. If I was ever worried about Tiara, all I had to down was stand up and look through the glass at her nurse or poke my head out and someone would immediately help us. Suddenly as she got better the level of care she received started to decrease. I understood why she had to start sharing a nurse but I went into a state of panic when they told me she was going to be moved out of the ICU and put onto the “children’s floor”. I DID NOT WANT TO MOVE! I loved all the nurses and doctors in the ICU. I knew about their families, their boyfriends, the weddings they had recently attended, where they were going to school at night. I had developed a whole life with the doctors and nurses in the ICU and I felt really safe there and now after 7 weeks they wanted us to move. They put Tiara on the waiting list for an open bed on the floor but told us it would probably take a week. I prayed it would take 2 weeks.
The second day after they told me this, they came in at 5 o’clock at night and said “we got her a bed and we need to move her right away another kid is coming into the ICU and needs her bed.”
I started to cry and felt like I was going to have a panic attack. I just kept thinking “I know she is getting better, but really the “floor”? The problem is that there is a huge difference in care from the ICU to the floor and I knew that from experience. It is my belief there should be a middle level where the nurses are trained to the same level as ICU nurses but maybe they have 3 patients. On the floor, the nurses don’t have the same level of training and they have 4 patients.
Before I could gather my wits they started bringing carts to our room to help me move all the junk we had accumulated. They were moving us within minutes. Our nurse was actually going for a dinner break so they sent up this transition person to help. I didn’t even have a chance to say good-bye everyone, it was so sad. The minute we walked into the new room, I thought for sure I would start screaming and throw a tantrum like a 2 year old. The room was dark, dingy, small and the door had only a small window. In addition, it was dirty! I totally freaked out! No glass, no natural light, no access to help immediately. I felt like they had moved us to a filthy cell.
Once in the room, the nurse left and said she would be in a bit to get all the necessary information from me. She was really busy with another patient and didn’t have time to do the intake right away. “Are you fu**king kidding me” I thought. Yeah, I know my kid was been hanging onto her life with a thread for the past 7 weeks but now you are too busy to take care of her? As I looked around, I realized how dirty the place was and started cleaning like a maniac while waiting for that nurse to return. The last thing I needed was for her to pick up another infection.
When the nurse finally returned, she brought the new doctor with her so they could both complete the intake on Tiara. At was if she had just been admitted for something random and I had to give them a history. Really? Didn’t someone read her chart before they transported her to this floor? Does anyone here know anything about her? I kept trying to remain calm but by the time they both left, I knew they thought I was insane and hated me already, but I didn’t care. It was getting late and yet we had been in the new room for several hours and no one had done anything for Tiara.
“Hello people, she needs her trach suctioned, her g-tube cleaned, her anti- nausea medication, her breathing treatment and you need to start crushing and dissolving all 10 of her meds that are due in an hour!” I kept calling the nurse and yet no one showed up. I had been learning and helping do all these tasks while in the ICU but now it felt like everything was on my shoulders. So after they kept failing to show up, I just started doing it on my own. The nurse finally showed up with the anti-nausea medication an hour after it was due and said she had called respiratory to come for the breathing treatment but they did all the ICU kids first so Tiara probably wouldn’t get her treatment until 9pm even thought it was supposed to be at 7pm. It was one thing after another. The final straw was when the nurse brought in all the meds and left them with me. Really, am I supposed to put them in the g-tube? She looked at me and said, “Oh, do you want me to give them to her?” “Well, I have watched the other nurses do it but I haven’t ever done it myself. ” She then said, “Ok, I will do it then. She started to push the meds really fast and I immediately reminded her that she had to push them very slow so Tiara wouldn’t throw up. Did she listen to me? Nope, she was in a hurry and pushed them fast and guess what? Tiara throw up that night! I was so pissed.
I knew from that moment on I couldn’t trust any of the nurses on that floor. I would have to do everything for Tiara myself. This thought process was completely validated when the next day, Tiara’s oxygen level started to quickly drop which meant she needed her trach suctioned immediately. I called for the nurse, because the person watching the monitors hadn’t noticed her levels drop and no one was showing up even though it was an emergency. While waiting for the nurse to arrive, I knew I didn’t have a choice but to suction myself. I put on the sterile gloves, removed the piece from the trach and started suctioning. Her oxygen was still dropping and I started to panic. The nurse finally rushed in and saw that I was starting blow by oxygen on Tiara and she panicked more than me. She had no idea what to do and said she needed to call respiratory because she didn’t know how to suction a trach. OMG, is this a joke? She ran out of the room to get help and left me with Tiara to administer the oxygen and try to get out the mucous plug out myself. Luckily I was able to suction out the plug and don’t worry, yes I reported her incompetence to the head nurse.
It was at this point my sweet understanding disposition shifted to ” everyone here is incompetent and watch out, I am taking names.” Within a few days of moving Tiara to the floor she developed stomach pains and started throwing up. She wasn’t having regular bowel movements because she was on a liquid soy ketogenic diet which can cause serious constipation but no one could agree on what was wrong. One doctor told me the x-ray showed she was impacted and yet someone else said it was gas and no one could explain the vomiting except to say they thought she had horrible reflux from all the medication. I thought she was constipated but didn’t believe the reflux theory, I thought the vomiting was seizures but of course they didn’t agree with me.
Either way everyone agreed she needed her system cleaned out so they put her on buckets of laxatives for 24 hours. It was more than horrible than I can describe and lasted for days. It was so much work for me because I now had to change all her diapers, do the meds, do the g-tube and trach care and I even started changing her bed myself. The bed changing was hard because she still couldn’t sit or move herself, she was super fragile and weak. I got really good at the nursing thing but I was getting really worn down.
The doctors decided she needed a Nisson fundoplicaction surgery to help with the reflux and stop the vomiting. The surgery would prevent her from being able to vomit thereby helping her gain weight and keep her seizure meds down. I was so frustrated because she was supposed to be transported to the Rehabilitation home any day, which was in Orange, so close to home and now she had to have another surgery. It seemed like we were never going to get home. The rehab home agreed to hold her bed until she was well enough to get transported. The night before the surgery, she kept vomiting really crazy and her vitals were all over the place. Her temperature dropped and then I knew for sure, it was a seizure. The vomiting seizures were back. I paged the neurologists and they rushed down to see her and for the first time in the history, they actually witnessed her vomiting and declared I was right, it was a seizure. I felt so confused. She was having a surgery on her stomach in the morning for reflux and she didn’t have reflux. The neurologists discussed it and thought she should still go through with the surgery because it would help since it would physically prevent her from vomiting. So I agreed to let her go forward with it.
She had the surgery, it was successful and we were transported to the rehabilitation home a few days later. The rehab home was so different and once again I had trouble with the transition. It was much more casual, they administered the medication differently, it had carpet which totally freaked me out, but it was like a home. By the morning Tiara had really started to cheer up so I was feeling happier myself, plus I realized right away I was going to able to manipulate these people better. I set 5 goals for Tiara when she entered the rehab home. 1) Get out the trach 2) get her on solid food 3) get her to sit up on her own 4) get out the pic line in her arm and 5) be able to stand with help.
Before we left UCLA I had been begging them to take out her trach. I knew she didn’t need it to breathe but they refused. They kept telling me “kids like Tiara relapse, it isn’t safe.” It was so frustrating because she couldn’t eat with the trach because it was interfering with her airway and they said it wasn’t safe for her to eat. Well, Tiara loves to eat more than anything and I could tell she was starting to get really depressed.
Once at the rehab home I asked if we could cap her trach because she didn’t need it. They agreed. Yay! They said if she kept it capped for 72 hours without a problem they would consider taking it out. On the second day a speech therapist assessed Tiara and said she had a swallowing issue but if I watched her closely they would allow her to eat solid food. That was the greatest day ever. If you could have seen Tiara’s face when she got that first taste of solid food in 11 weeks, it was pure joy.
Food was her medicine. As soon as she started eating everything got better. She stood up on her own, started talking, sitting up and was making progress by huge leaps and strides. The staff and doctors were shocked. The one doctor told me he had never seen anything like it. She was a miracle and they learned so much by caring for Tiara. She accomplished all her goals within 2 weeks and then she was cleared to go home. That drive down the 55 freeway in our own car was exhilarating. She hadn’t been in a car or seen her house in 3 months. The whole way home she just kept saying “home, home, I DID IT!” Yes, TT, you did!
Still today there isn’t a week that goes by when she doesn’t grab my neck in a tight hug and say “we did it, we did it, home!”
Thank you for reading my journey with Tiara. The journey continues everyday but I am hopeful we have seen the worst of it, at least for a while!
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