Katya had arrived around 1:00 AM back in PICU after nearly being allowed to die down on the floor due to the incompentence of the plastic's residents. The horror and shock that the PICU staff felt, and then their disgust as they discovered one preventable issue after another was what was killing Katya, could not entirely be hidden, although they were professional and efficient. Poor Katya was surrounded by a literal swarm of nurses and doctors as they took blood in little pipettes from her little toes for special testing, and did other tests. Unfortunately, she was so badly dehydrated that the blood kept clotting before they could get what they needed, and it became apparent that another IV had to be inserted, so poor Katya, unable to see what was going on, had to get stick after stick. The Dr. explained to me that until they could figure out for sure what was going on they did not dare give Katya any more pain meds, as she was in great danger of coding.
Again and again Katya bellowed feebly in pain and terror as she had been doing hour after hour, and they kept talking about how "irritable" she was led them to suspect that she had spinal meningitis. I told them that I doubted that she did--that she was simply in terror after being unable to see, and having what to me was clearly out of control pain. I could understand why they had to consider it, but I had complete assurance that Katya did NOT have meningitis, and it was clear to me by now that my Mommy instincts about her swelling had been dead spot on, and therefore I was trusting my gut on that one too.
As the nurses were rapidly cleaning the soiled bed linens from her bed, including pitching one soggy pillow into the trash can after giving each other looks of dismay and disgust, one of them spotted Katya's surgical drain. After calling Dr. Carina's attention to it, Dr. Carina's face got a even sterner look and her lips pressed tightly together as she marched off briskly to the phones as she spit over her shoulder, "It's clogged!" In minutes, the young resident who had been responsible for Katya's care the last number of hours showed up, and began manually stripping the clear plastic tubing. As he stripped the thick and dried out "gunk" from the upper part of the tube, down the tube towards the collection point, it, it was obvious that there had been a HUGE clog, and that now fluid and blood were starting to come back down out of Katya's head. Did he apologize? Did he thank Dr. Carina for catching his grievous error?? No, he had the audacity to stand there in front of Dr. Carina, in front of the PICU nurses AND in front of this quietly furious Momma who had watched her daughter suffer unspeakable horrors hour after hour and say, "See, it's NOT clogged."
Not one word was said by any of us, but the grim looks on ALL of our faces should have given him a clue that he had mis-stepped one time too many. When you are a lowly resident, you do NOT stand there and try to prove your righteousness in front of that many witnesses who have seen that there was clearly a clog and that there was clearly no free drainage from something as important as a surgical drain tube in the head of a post-op child. Never. And you especially don't do this when you have allowed the child under your care to become SEVERELY dehydrated while on an IV, and to have been one in a string of many residents that day who allowed her swelling to into dangerous, life-threatening levels when the Mom is challenging you all day long . . . nor do you allow the child's pain to go out of control while you stand there and say things like, "We don't want to say that there are zebras on the loose when it's really just horses." No, you don't do that when you are a lowly resident. You just don't.
After this resident left the room, the fire sparked hot from everyone's eyes and some indignant remarks were exchanged but everyone kept on working. Within 15 minutes of the drain being cleared, Katya's agitation and anxiety became markededly less, and it was clear to all of us that a large portion of her problem had clearly been from the clogged drain. The decision was soon made to start a large dose of a medication that would essentially bind the excess fluid (I was given a good explanation that made sense to me, but given that by that point I had been up going on close to 20 hours without sleep, I hope my dear blog readers will forgive me for not giving a good explanation, nor choosing to share the name that I think I remember . . . just in case I am wrong). This was given, and within an hour Katya was able to open her eyes enough to see just a tiny crack out of each eye! That did much to calm her agitation as well, and it was becoming clear she was in a set of hands that KNEW what they were doing to help.
My respect and trust for Dr. Carina were at a good level from the start after I saw the look of anger on her face--I knew my baby was finally in the hands of someone who was going to FIGHT for her instead of the baby-faced residents who had kept giving me soothing platitudes all stinking day long when it was clear they didn't know what they were about, as Charity would say.
But as I saw her conquering one problem after another, my trust grew even more. When she "rolled heads" and amazed even her nurses when she got permission to get a CT scan for Katya in the Operating Room which was just adjacent to PICU instead of Katya having to go through the long, long trip to get to the CT scanner way down in the basement, which would have been physically dangerous (and painful, due to all the bumps on her swollen head) and emotionally very scary for Katya, and I heard the nurses marveling to each other as they took Katya over saying, "Wonder how she did THAT?!" I knew I could trust Dr. Carina even more. So when Katya was slightly more stable, and Dr. C. sent her resident around to ask for permission to do a spinal tap to check for menigitis, I grilled the guy but GOOD, including on how many had he done, how good was he, what plans did they have to keep Katya from suffering more than she already had in the last 20 plus hours, but ultimately, I agreed. I think the poor guy didn't quite know what to make out of me, but as I told him, "I'm not trusting anyone right now until they prove themselves. This is nothing personal to YOU--but I have to ask all this stuff."
Because he stayed polite, respectful, and tried to be understanding, I did finally agree. I did not think it was necessary and knew in my heart she didn't have meningitis, but I knew THEY had to legally cover themselves, and I knew after what had been allowed to go un-cared for that Dr. Carina probably felt especially in need of turning every stone to look for any signs of problems.
So, poor Katya had her back wiped while she whimpered, and then they applied Emla cream. By this point, she was stable enough and calmed down enough that she was doing a little bit of resting and the thought of them poking her and upsetting her again really made me stressed out, but they kept assuring me that they would sedate her well, and that she would probably sleep through the whole thing. However, I wasn't leaving anything to chance, so when Dr. Carina showed up to take her place by the resident to supervise him, and told me I could leave the PICU now, I gave her a long, hard, level look across the bed and politely but firmly said, "No. I'm not leaving. My daughter needs me, and I will not leave."
Dr Carina gave ME a long, hard, level look and said, "She'll be asleep, and we need to work here."
I said, "I will step over in the corner. I will even turn my back and not look if that makes YOU happier. But I will NOT leave. My daughter may need to hear my voice, and after every thing she has been through, I will not leave her. If she needs me, I am here."
There then ensued a stare down, such as would (in retrospect) probably have been funny to have on home video. Dr. Carina, all gowned and masked, and with the authority of Johns Hopkins hospital on her side, and this tired, dishelved, sleep-deprived Mommy who had nothing but her Mommy instincts and strength from God and the prayers of His people at 4:00 AM in the morning keeping her going! Dr. Carina on one side of Katya, and Mommy on the other side of the bed with Katya. And she looked long and hard at me, and I looked long, hard, and levellly back at her. And I remember thinking, "If I leave this bedside, it will only be because Security has been called to drag me out."
And . . . whatever Dr. Carina was looking for, she saw. Because she finally backed down and levelly said, "OK, I'll have the nurse get you a chair and you can sit in that corner." And so, I sat in the corner. And I did not look. But whenever Katya whimpered, I called out, "Katya, it's OK. Mommy is here! Mommy loves you!" and she would quiet.
I know beyond any doubt that what I did was right. I could not have lived with myself had I not been there to hear and be sure that she really DID sleep through most of it. I would have worried that maybe they hadn't told me the truth post-puncture. I would have worried about the further stress on Katya had she NOT heard her Mommy's voice every time she stirred enough to whimper. I know she heard me, and that clearly hearing me calmed her each time.
--To Be Continued