Friday, September 3, 2010

Day 7

Tuesday, August 24, 2010

Nina woke up at 3am vomiting. I didn't panic. Eileen and I were with her. Todd was with Teddy in the other room. We pulled the sheets off the bed and scooped her into a tub of warm water to clean her up. Then she vomited again at 4am, and a third time at 5:30am. Now I was beginning to panic. I texted Dr. Brennan.

On Monday night, I had spoken briefly with Dr. Brennan to update him about our radiation meeting. He had asked how I was doing and I replied that I was on the best weight loss program ever! Dr. B did not find this amusing one bit....but I did! Since the beginning of the year, I had been working out consistently 3-4 times per week. It had taken me 6 months to lose 15 pounds. Now in a matter of 3 days or so, I'd lost another 6 pounds. Who knew there was an upside to extreme stress??? Anyhow, during this conversation Dr. B and I had discovered that we lived about 5 minutes away from each other. The poor man had offered his assistance at any time, and now I was cashing in on that offer!!!

By the time, Dr. B arrived at our place with some nausea medication, Nina was listless on the couch. Todd had taken Teddy to school and had perched himself right next to his honey-girl when he returned. He was tickling her legs (both our kids adore that and proclaim that daddy is a much better tickler than I am! Oh well, you can't win them all!) when Dr. B walked in. I described the events that had transpired during the last 5 hours and expressed that I was wondering if we should try to get her admitted so she could receive IV fluids.

My concern was particularly heightened because Nina was scheduled for out-patient surgery later that afternoon so a catheter could be placed in her chest. I knew that if she were dehydrated the surgery might be postponed. As it was, the poor doctor (Dr. Tamir Keshan) who did this specific type of "Port" surgery was squeezing us in and racing back to SB from Ventura. When he'd be able to fit us in again this week was questionable and I did not want to postpone radiation any further. Dr. B agreed and began to work his magic so we could be admitted. (On a side note, Dr. Brennan's first name is Dan so I secretly decided to start calling him Super Dan because the man can single-handedly make things happen!)

By the time we arrived to the hospital, the admitting folks were already waiting for us. It really pays to have connections :) Anyhow, we were quickly taken to the PICU where we had the opportunity to meet with Dr. Slomiany the oncologist, Dr. Hindo, and Dr. Pickert. I must say that I have unbelievable impressed by the diligence, attention, and care that the Cottage doctors have provided to Nina and our family. Never once have I felt that Nina was just another file, another patient from the labyrinth of patients these professionals help on a daily basis. They have made us feel that she is the most important little girl in the world, and to us that is true!

Although no one initially said it to me, I was suspicious that the doctors were worried that something had happened to the tumor itself, causing the vomiting and non-responsiveness. Within 20 minutes of our arrival, Dr. Hindo had met with Dr. B and the rest of the medical team and a CT had been ordered. They explained that they wanted to rule out any potential changes to the tumor itself, highlighting the unlikelihood that was the problem. I so appreciated the "unlikelihood" hopefulness, but given our string of really bad luck lately....we were all about "unlikelihood"!! In my mind, "unlikelihood" or "rare" might as well have been our last name, or at least the meaning of our name.

I know it must sound very strange, but a part of me was actually grateful we were back in the hospital, at least for Todd's sake. While I had been at Cottage and Cedars the first number of days of this ordeal, Todd had been at home maintaining comfort and some sense of normalcy for Teddy. This was extremely vital for our ability to function as a family and establish some sense of control over a very uncontrollable situation. However, because Todd had been taking care of Teddy, he had missed out on the roller-coaster ride that is being in the hospital. He hadn't had an opportunity to meet any of the medical professionals on Nina's team, with the exception of Dr. B. In order for him to be able to fully participate and even grieve, I thought it was essential for him to directly live this part of the journey. Live it he did, in his most wonderful Todd-way :)

Once the team had decided what needed to be done, a nurse came into the room to start Nina's IV. She politely and sweetly introduced herself to Nina who started to wail! Poor Nina was done with strange people, especially strange people in medical uniforms. I gently (at least I thought I was gentle!) turned to the nurse and explained the calamity that had happened at Cedars where they had to poke 4 different times before they were able to establish the IV. I reiterated what I had told every subsequent nurse, "She needs a baby syringe, #24, with no tourniquet."

Now, I thought I was completely sweet and calm. The nurse did a brilliant job and got the needle in on the first try. Nina didn't cry for more than a few minutes and then was happily watching Handy Manny on the television once again. A few minutes after the nurse had left, Dr. B came in with a huge grin on his face. I asked what was going on and he explained that I had intimidated the living %&*@# out of the nurse and she had been totally stressed about getting the needle in on the first try. I was shocked!! I turned to Todd and asked him if I'd behaved badly, to which he replied, "You didn't behave badly, but you were  definitely serious about your expectations...Ya babe, you scared the poor woman to death!" I am so sorry I did that! I have definitely had to be pull out mama bear on several occasions but I can honestly say that I didn't mean to do it on this one!

When it came time to do the CT, we kept Nina in the stroller and followed the nurse to the imaging room. I have to admit that I was nervous about how we were going to get Nina to lie on a huge table that MOVED back and forth of all things. Again, God was with us. All of the prayers being said across the globe by hundreds of people were working! Nina completely complied. She lay on the bed and the nurse explained that the machine was going to take a picture of her body, but in order to do so, she'd have to be very still. I followed up by saying that we were going to play a game where she needed to close her eyes while I counted to a 100. Moreover, I explained that she could only open her eyes when I said "Open". Before running the machine, we had a few practice trials where I counted to 20 and then asked Nina to "open" her eyes. She followed my directions beautifully. I kissed her luscious lips and asked her to close her eyes while I counted to 100. I deliberately counted slowly, all the while holding onto her little right hand. Before I got to 50 they were done! She was such a rock-star!!!

We loaded Nina back into her stroller and headed back to our room in the PICU. Within 3 seconds of our arrival, Dr. B came in with a very happy expression. He said that the CT revealed that nothing had changed so her symptoms were what he had hoped for: slight dehydration, over-exhaustion, constipation, lack of sleep. These things were all easily addressed and fixed. If only everything in life can be fixed through IV fluids..alas they can't!

It was now time for Todd to pick up Teddy from school. He kissed Nina goodbye and she crashed into a deep sleep. All we had to do now was wait for her to have her "Porta-cath" surgery at 4pm. While she rested and got IV fluids, Dr. Pickert asked if he could speak to me privately. Dr. Pickert is a very tall man, built like a Scandinavian king of ole. In spite his towering exterior, I quickly discovered that Dr. Pickert has a very warm and loving spirit. We sat together in a quiet room where he proceeded to talk to me about something I had been needing to discuss, but that no one had dared to bring up.

He explained that as a pediatric critical care doctor he regularly saw families go through terrible things. He went on to add that over the course of his career he had learned that the more families were prepared for the "end" the better they were able to complete their journey when the actual time came. As he gently spoke to me (no one could have done it more lovingly) tears began to stream down my cheeks. Everything he said was true and had surfaced to the front of my mind hundreds of times before. Nonetheless, actually having a conversation about the subject matter brought a reality to the situation that I guess I had been avoiding. No parent, regardless of how sane or irrespective of how talented the professional, is ever ready to discuss DNR (Do Not Resuscitate!). Later I found out from the social worker they are changing it to AND...Allow Natural Death. It does not matter what you call it, it is the absolute worst thing a human being could ever be asked to contemplate!!!

After I spoke to Dr. Pickert, I returned to Nina's room and climbed into bed with her. I curled right up next to her and lay very still. I inhaled deeply, trying to capture every scent (the drooly breath, the lavender hair shampoo, the stinky toes, and the faint hint of Doritos on the tips of her fingers). I reached for her warm hand and wrapped my fingers in between hers. She sighed deeply. I smiled. She turned toward me and I kissed her chubby face. I quietly leaned my face even closer to hers so I could feel her exhale and inhale each breath. The pattern of her breathing was so soothing and calming. I didn't want anyone to come in and bother us. I would have been perfectly content to spend eternity there. But then....some one came in to take vitals...oh well!!!

Around 5:30pm we were finally rolled into the surgical center where Nina was scheduled to have the Porta-Cath placed in. Dr. Brennan had stayed with us until a bit after 3:00 pm. It was his day off but he insisted on staying with us to help until we were totally comfortable with the hydration details, as well as, the port surgery. The wonderful thing about a port is that she wouldn't have to ever be poked again when it came to sedation or lab work. She'd just have this weird thing , the size of a bouncy ball,  in her chest where each Monday the oncology nurse would "access" it. "Accessing" a port is a way of ensuring that she is basically wired to have any treatment, whether it be an IV or some other kind of drug.  As such, Nina has a fairly long cord hanging from her chest Monday-Friday. Never once has the sweet girl tried to remove! What an angel!

The surgery went flawless. Poor Dr. Keshan had practically flown from Ventura to SB only to find out that he'd have to wait an entire hour before getting to do Nina's surgery. Basically, people should be wary about hanging out with us or helping us because we've got the worst fortune in the world, and I'm worried it's contagious! Don't say I didn't warn you: )

It took Nina a long time to recover from sedation! The poor sweetheart had bad dreams the night before and hadn't slept very well! She was so tired!! By the time we returned to the PICU room, Lynn and Eileen had brought in food from the HABIT!! Yum! Nina immediately swung for the french fries. She devoured several fist fulls the first couple of minutes. The simple act of eating a peaceful meal was beginning to take on different properties in my life. Little did I know that my peaceful meal was going to be followed by a heinous battle for POOP!

1 comment:

  1. Your writing evokes so much of the unique journey a unique few of us have had to walk with our children. There is something about capturing these experiences that helps us process the intensity and I suspect make it through with some sense of sanity (or at least that's what I'm trusting in--we'll have to see where this all leaves us).

    I'm so glad for the care your experiencing. One thing we got warned about was the aloofness an inaccessibility of high-level specialists, but we've found that to be mistaken--they're the ones who give you their cell phones and get upset if you don't call. It's humbling that there are people who have dedicated decades of their lives to training and practice so that they can help you.

    As surreal and difficult as it might have been, I am so grateful for Dr. Pickard's conversation with you--from it comes the assurance that people will be honest with you. With critical care situations, a parent will inevitably wonder if the team is giving them the full truth (are we holding out unrealistic hope and not seeing what everyone else is? etc). These aren't pleasant conversations, but we were so helped by docs who we could be assured were being direct and honest with us, as sobering as the news might be. To have a critically ill child is to be thrust into a foreign land and I liken the doctors and nurses to skilled guides who know the territory. It doesn't remove the fear, but it does help.

    Jesus' peace and comfort to you. Many are praying.

    Rolf and Trish