Saturday, September 4, 2010

Day 8

Wednesday, August 25, 2010

I will concede that there are a many terrible battles fought all over the globe on a daily basis, but I doubt that many have been about POOP. Between midnight and 3 am, Eileen and were consumed by poop....Nina's poop to be exact. You see, the poor girl was severely constipated; she hadn't had a bowel movement in well over a week! I knew she needed to go but was she was terrified. Her constipation had been a problem from birth, but now it only compounded an already "crappy" situation!

For the most part, I had become very good at monitoring Nina's food intake. As such, her constipation had been reasonably controlled. However, when we had visited the Dawsons in Irvine, the girl had snaked not 1 but 2 bananas. Nina loves bananas. That is another thing she and I have in common. However, bananas don't love Nina. They plug her up...poor thing!! Consequently, at  home we never have bananas! The first thing she asked for when we arrived at Yvonne's was whether or not she could eat a banana. I had told her no, but the sneaky thing did so anyway! After she'd eaten the first one, she walked over to me and meekly said, "I so love bananas!" Little did I know that the two bananas she had eaten a week ago would become my arch nemesis! Blasted bananas!!

So now we found ourselves in this predicament. She hadn't had a BM in over a week, was in pain, and was afraid to go! My friend Eileen had seen me at my best and at my worst! Now she got to see me pleading and praying that suppositories would do their damn job and help my kid go. Apparently being my friend means going through the ringer over and over again! We just couldn't catch a break!

Now for those of you who know me, know that I am an eternally optimistic and cup half-full kind of gal! That optimism comes to an abrupt end when it comes to poo. Nina's constipation has been the bane of my life as her mom for the last 5 years. Oh, how I would gladly take that for the rest of my life now!!! Amazing how stupid things become the "bane" of our existences! When my friend, and our nurse for the night, Kim Johnson came in with the first suppository she and Eileen were all upbeat and confident about how "in 30 minutes she'll totally go!" I knew better. I didn't want to sound like a jerk (I'm sure I did anyway) but I told them I was skeptical. They "poo-pooed" me and said to just would work.

Twenty minutes after the first suppository, Nina jerked up and said she needed to go potty. Eileen and Kim gave me knowingly "see we told you so" looks but I knew better. I knew there would be no poo...only her squeezing out the dang suppository! Guess who was right?? I WAS!! HA!! Kim and Eileen were both speechless but did not retreat! I love that about my friends...they will not let me face a fight, even a BM battle, alone! Praise God for excellent friends!

I asked Kim for second suppository and she obliged me to Nina's horror. At this point, the poor kid was crying and yelling. She calmed down for about another 40 minutes and then shot back up in bed, requesting to go potty yet again. Once more, we were foiled! The kid has a will of steal! She was so afraid to let it out! At one point, she was sitting on the potty crying out in pain. I was on my knees, rubbing her legs, trying to encourage her by saying, "You can do it Nina. Just push!" What happened next, words cannot do justice! I really wish I had a video camera! As soon as my words left my mouth, she violently swung her head up and made perfect, scary eye contact with me (imagine Linda Blair in the Exorcist!!) and said to me as clear as day, "Seriously, I CAN"T do this!!!" Eileen and I didn't dare look at each other. We knew if we did we'd burst into complete hysterics. As it was, we were both biting our lips and trying to contain our laughter to a minimum, fearful that Nina might start smacking us:)

We must have done the toilet tango a couple of dozen times. Each time, she'd cry. We could tell she was in extreme pain! Our hearts ached. The poor girl just couldn't catch a darn break!! I never thought I'd find myself quietly praying for poo  but I did!! I sat in the dark of that PICU room and prayed that my sweet honey-girl could get her job done and not be in pain any longer. Then at 3am God answered our prayers. This time, she didn't cry when she sat down on the toilet. She simply sat and got it done!! Let me be very clear, in all of history never did a "plop" of poo sound more melodious and beautiful than at that very moment! Eileen and I both literally praised God! I turned to her and said I'd been praying for poo for the last hour. She started laughing hysterically and said she had been doing the same thing. We both started laughing even more, only to be interrupted by Nina commanding with a total "stink-eye" dirty look that she was done and wished to return to bed! We obeyed! Once back in bed, she passed out and slept perfectly until we woke her up at 9:10 am. It is unbelievable what we have been praying for, but I understand that there is nothing too big or too small for our God!

After the sedation and mask-making, we were taken to the Pediatric floor. Nina was very tired and the only thing that sparked her motivation to speak or even interact with others was her donut holes. Daddy carefully fed her as many donut holes as she wanted and then when she was done, cuddled with her in bed. I loved seeing my husband cuddling with his honey-girl. When we were first dating, Todd's oldest (and only at that time) niece Sosie was a tiny one. I vividly remember being really impressed about how much he loved kids and how well he interacted and took care of them. The wonderful thing about Todd was that he had carried that natural love and comfort with kids from his nieces and nephews to his own children flawlessly! Now, Nina could lie on that ancient hospital bed and be comfortable herself because she was in her daddy's arms.

Unfortunately, Nina wasn't able to relax for long because the barrage of nurses and specialists kept coming in. Overall, we have had a wonderful experience, as wonderful as such a medical experience can be. However, I have a few pieces of constructive feedback. The first being that I wished there was more coordination between the nurses, doctors, and specialists. Why does it take 3 different people to collect vitals? After the first one takes them, couldn't the other two just look at the chart. It's not like we're talking about hours of difference. I understand that they need to intermittently take her vitals, but 3 different people within a two hour time frame....really???  Each time Nina was about to fall asleep someone else would come in.

Then all specialists came in and tried to assess her swallowing, her eating, her drinking, etc. The poor kid didn't want to participate in a tea party. She wanted to be left alone. Initially I tried to politely hint at the fact that she hadn't slept much and would not participate no matter how hard they tried, but I was ignored. After a painful series of failed attempts, I had to firmly (albeit with full decorum) ask the specialists to leave. I explained that I was comfortable with her swallowing and would sign any paperwork to release the hospital of responsibility. The fact of the matter was that they hadn't seen her a week earlier, when her drooling and swallowing had actually been problematic. I was tried of retelling the same story to 200 different people. I was just tired!

I don't like being ignored! I never have (probably why I am so verbose!) but now I especially didn't put up with it. I was Nina's advocate! That was my most important role and I took it very seriously. I did NOT like being ignored and I found that I was frequently ignored on this floor which was infuriating. In fact, I had requested, once we returned to the Peds floor, for her to be put back on IV fluids. But no.....they insisted they wanted to see how she'd do drinking on her own for a couple of hours in order to assess if she could go home. The slight problem was that I had spoken to the doctors earlier and had expressed my desire to stay overnight again so she could have IV fluids and really be hydrated. They had been comfortable with my assessment of the situation. The reality was that I had been studying and memorizing Nina's pattern of behaviors for a week now. I knew that when she didn't want to eat or drink much that she wasn't fully hydrated. But I was only the mom!! What could I know??

At 3:30pm Teddy came to visit Nina. (Please see the post entitled "Pain" to learn more about how Teddy has been handling our journey). Teddy was so sweet. All he wanted to do was see his sister. He was worried that he was hurting and was anxious to cheer her up. He was so proud to walk in with an arm load of stuffed animals. Nina was very tired. However, even through her fatigue, Teddy was able to make her laugh. No one has ever been able to make Nina laugh better than Teddy. This was true from the moment she started laughing at 3 months of age. During Teddy's visit, a variety of doctors and nurses kept coming in and out of the room. When it was time to leave, Teddy have his sister a big hug. As we were sitting on the grass outside of the hospital, Teddy turned to me with his beautiful blue eyes and proclaimed, "I think Nina is going to be okay because there were a lot of super smart people in that room!" My precious boy! I love everything about him!!

Shortly after Teddy's visit, Nina complained of a headache. I immediately paged the nurse and when she came in I told her Nina had a headache and needed some Tylenol. Now, I've already had a number of dumb-ass things said to me, however, I have to say that this one took the cake!! The nurse, cute blond blue-eyed youngling, actually had the lack of cognitive skills to actually say, "Hmm...I wonder why she has a headache?" Even if I had tried to restrain myself, it would have been futile! I turned to her in an instant and exclaimed, "What do you mean you wonder why she has a headache??? She has a f---ing tumor in her head!"

So, word to the wise here....if you screw the pooch and say something totally asinine to a grief-stricken parent, apologize immediately! Humility works wonders. However, my little nurse friend here didn't have that insight!! Instead....she decided to actually get DEFENSIVE with me by adding, "Well I know that, just wondering if there was anything else going on." I lost a gasket here! Not only did you say something totally stupid and careless, but then you have the audacity to be defensive. I have never wanted to smack someone so badly! But I didn't. Instead I replied with a touch of anger, "She's got a monster squeezing her brain-stem! That's what going on. Please get me some Tylenol with codine!" After that snap, she didn't say anything. She got me my meds and wisely stayed away.

Thankfully, by the time my parents arrived, the nonsense with the nurse had ended and Nina was more comfortable, albeit still very unresponsive and non-interactive. This was the first time my parents had seen Nina after the symptom manifestation.It was excruciatingly hard to see the look of sadness and pain in my mother and father's eyes! As I have said before, it is unnatural for a child to be sick like this. Parents are suppose to grow old and then die. Our children are suppose to bury us, not the other way around. In my parent's eyes I saw this in an unbearably raw way. They kissed her hands and feet. They prayed and prayed. I so wished that Nina would have been ecstatic to see them, just to cheer them up. But she didn't. They prayed, hugged me, got me coffee, did everything a parent could do to ease their own child's pain. Unfortunately, nothing my sweet parents could do would ease my pain! Only my Father above could and can do that! Then God have us a tiny gift. Nina sat up and proclaimed that she wanted cereal from Vovo and Vovo's (Portuguese for grandma and grandpa) house. The cereal she wanted was Fruit Loops. Whenever we went to Turlock to visit my parents they would always have a huge box of Fruit Loops and the kids LOVED it! Nina's wish lit my parent's eyes up with happiness. Finally, they had something they could do and off they went to Vons! It is important to remember to give thanks even for the smallest of answered prayers! God knew my parents needed to feel their granddaughter's love and have a way to help and He provided!!

Several hours came and went and Nina hadn't wanted to eat or drink anything else. Now I started getting irritated! I increased the intervals at which I requested IV fluids, and each time, I got a series of excuses: we don't have the orders, the doctor said to wait until 8pm, the doctor said to wait until the nurses switched shifts, we just want to see how she'll do on her own. The fact of the matter was that if my kid wasn't eating and drinking independently and at an appropriate rate within 3 hours of our arrival, waiting another 5 probably won't change things. I explained that I was convinced that once she'd get fluids that she want to eat and drink. This had happened every other time! But no....I was JUST the mom! Once I got dismissed for the umpteenth time, I snapped. I didn't snap rudely mind you. I just started pulling strings and making calls!

To make matters worse, around 7pm we were told that Eileen couldn't stay overnight with me. The previous night both of us had been allowed to stay in the PICU. We were told that only one adult is allowed to stay overnight. I could slightly understand that if we were sharing rooms but we weren't, we had our own. Particularly given our struggle with her BM the night before, being alone was not optional, but the nurses insisted. I insisted back. They didn't like it. I insisted then started getting angry. How can you be "child-centered" if you are not family centered? The two are NOT mutually exclusive!! If you are NOT family- centered then you CANNOT be child-centered.

Nurses talked to managers, who said no. I said yes. This dance went on and on. Eventually I turned things over to Eileen because I knew I would not be able to maintain my composure! I was furiously furious! Eventually, after calling doctors (apparently doctors don't have a say????) our nurse informed us that they wouldn't say Eileen could stay but they'd do us the courtesy and NOT call security! How sweet! They also added that unfortunately they wouldn't be able to provide us with any sheets or blankets for the pull-out chair in our room. I didn't care! Eileen went back to our place and got some sheets, blankets, pillows and snacks. All I cared about was that Eileen was able to spend the night.

Then at 8pm the IV finally arrived!!! Within an hour (like I said!!!) Nina asked for food and drink. She felt better, ate, and was finally able to fall asleep comfortably. Why it took over 7 hours to get the IV fluids is beyond me! I found this entire afternoon to be unacceptable!

I recognize that I am not your run-of-the-mill kind of mom. I am the exception not the rule. When obstacles were placed in front of me I threw tantrums until they were addressed accordingly. However, for every 1 of me there are 30-50 moms crying by themselves in their child's room. This is unacceptable! I also found out that despite every one having a private room in the new hospital (currently under construction) the policy of only one adult staying overnight will remain intact. Not okay!!

During this visit to the hospital there was a young couple (early 20s) with a baby, no more than 6 months, next to us both in the PICU the first night then on the PEDS floor with us this night. The poor mom looked completely distraught and scared to be by herself. I understand that we are never by ourselves because there are nurses and staff on site at all times. However, irrespective of how kind these professionals are they are still strangers. When you have a sick child, terminal or otherwise, your stress is heightened beyond comprehension. It is unconscionable that parents cannot have support overnight. I do not pretend to understand why we have been given this journey. But after this experience, I will not desist until these issues are addressed! I do not want to be misunderstood; I appreciate everything that the medical professionals here and at Cedars have done and I recognize that to some degree you become habituated to misery, pain, sadness, complaints, even death. However, I deal with bad news and hardship on a daily basis as a professional working with individuals with autism and developmental disabilities. However, my biggest focus as a therapist and mentor to younger staff is that irrespective of how severe the symptoms or disruptive behaviors, we MUST be beacons of hope and kindness! I just hope that my experience this evening was an anomaly. If not, I pray that professional across the world reading this will remind themselves that we are not just files, cases, diagnoses, or even patients. We are humans first and foremost and REQUIRE constant compassion!

1 comment:

  1. Rosy, you have always been an agent for change- you will end up helping so many parents and families who want to stay with their children- love to you- Coleen