All photos that were snapped through out the hospital stay on Paul's or my phone . . .
This is Katya on March 21 (Wednesday) soon after her 9.5 hours of surgery, 12 hours under General Anethesia. Before I was allowed back in PICU, staff thought she was getting agitated and might start pulling out her lines, so they put restraints on her arms. I was able to advocate for Katya and get them removed, if I recall right, before I left around midnight. (Katya's Daddy came and traded off with me so I could get a little sleep--we did **not** leave her alone in the hospital!!!!!! And in fact, Dr. Carson once, towards the end of her stay, commented to me that he was happy to see how we stayed with Katya, and said that he was sure our presence was very necessary to her . . . We firmly concur.)
This photo was taken soon after Katya was out of PICU for the first time. Although she was moved out of PICU less than 24 hours after surgery, astonishing every one, she was dazed and emotionally wrung out after the removal of the majority of the tubes and wires and needles from her body, and had shut down emotionally. (Please note the pressure bandage on her neck had started to peel and loosen--it was necessary after they removed a very large arterial line from her neck before moving her out of PICU). You can note my (second hand) IPad laying beside Katya on the bed. The IPad was such a help for Katya as it kept familiar and comforting music always close by to her! It also allowed me to stay in touch a bit through Facebook with our prayer warriors!!!
The photo below is March 24th, when Katya's swelling was taking over her face. She was starting to feel enough better she wanted to sit up and play Legos with a lot of help from Charity, even though she could only see through the merest tiny crack of one eye. By the next day, Sunday, she was in the dangerous spiral of events that nearly cost us her little life.
#1. She was allowed to become severely dehyrdated, even though on IV, to the point that for several weeks afterwards it was feared she had permanent kidney damage. Thank God that did finally clear up, in answer to many prayers, I'm sure!!
#2. Katya's swelling was allowed to go out of control, closing down her throat and lungs, and the plastics residents who were responsible for her care all day on Sunday while her two surgeons were out of the hospital, were too inexperienced and un-trained to recognize what was going on, even though I kept challenging them about the "clucking noises" she was making in her throat, the fact that her oxygen levels were steadily dropping, and that the swelling was going clear down her throat to the point she had no neck really any more!
#3. Katya's surgical drain tube that exited her skull behind her ear was allowed to clog, stopping the flow of blood and fluid from her head, increasing her pressure and pain to epic proportions.
#4. And last, but not least, her pain become so out of control that she could not rest or sleep for hour after hour after hour that horrible Sunday the 25th. She moaned, she cried, she signed "help, owie!" over and over again that horrible, terrible, no-good-awful day and into the night.
I have no photos from that 24 hour period that I was awake with her . . . I wouldn't have wanted to take any, as she was in such agony, and hardly looked human. The swelling was so bad that it can best be described by saying that she looked an awful lot like a victim of anthrax in the last stages. It was pretty tragic, and there are NO pictures of her during that terrible day and night. Her eyes were so swollen shut that the lids overlapped, she had no neck, and she frankly was hardly recognizeable. In fact, the PICU Doc, Dr. Carina, who had discharged Katya mere days before told me later that she truly had NOT recognized Katya at all when she showed back up in PICU at 1:00 am that Monday morning in acute distress, with her heart all tachy, and in respitory distress. She recognized me, but could not tell who was with me, and when it dawned on her that it was Katya, the horror she felt could not be entirely disguised from her face, nor the anger from her voice as she stared at Katya, and then at me, and then back to Katya and then ground out with controlled anger, "WHAT happened? WHO let this happen to her?!" [Edited to add that at one point, Dr. Carina looked at me, and said, "I'm sorry, but I need to tell you that if Katya codes, right now I am not sure I can even get an airway established due to how swollen her airway is." Those are NOT words any parent wants to hear, but I'm thankful that Dr. Carina was honest with me through those hours when she was fighting for Katya's life . . . and as God willed it, Katya lived in spite of Satan's attempt on her life.]
That experience has left me forever impacted and I will never ever approach any hospitalization of any family member ever the same proably. I became known after this as the "Mom who put her battle armor on" around the hospital. The residents got no lee-way from me, and had to prove themselves to me personally from that point on. Hopefully more on that some other day. Let's just thank God that when the residents finally DID decide that her needs were more than they knew how to handle, that there was a real Doc up in PICU who knew how to roll heads, and make things happen, as well as being blessed with the ability to listen to the Mom and make smart decisions. With God's help, she saved Katya's life and had her stable in a few hours time. Thank God for Dr. Carina and her awesome staff of nurses!!! Three cheers for them! (I wish I had a photo, but I do not. . . . What made it even more special?? Dr. Carina was from Romania, and "got" more than anyone else in the hospital seemed to the horrors of Katya's background before she was with us and took steps to try to work with us to help ease the trauma she was experiencing from all the scary, painful and terrible things that she went through in the hospital.)
After Dr. Carina got Katya's swelling down within normal limits, she could wear her dearly beloved polka dot glasses again!
She would solemnly put them on, pull the blankets uip and settle down to sleep at night in PICU. The nurses loved it, and would call other nurses to come over and look at their little Diva! ;-) I think it put a much-needed spot of COLOR and a bit of humor in their days and nights.
--To Be Continued