My eyes spring open and I all I can start to see is a black and white rorschach pattern forming before me, and it is one of our cats Pollock about 6 inches from my face using his kitty mind trick to wake me up. You will take me to the food dish now. I will take you to the food dish now...Sad thing is, I think it works.
Wren is starting to get used to the drill now, traveling to TCH (Texas Children's Hospital). She gets really excited about riding in the car, because this wonderful device has her favorite cartoon that plays in it while it drives! She calls it the she-ya-ya car. This includes a point and a grin as she repeats it for confirmation. She-ya-ya car gets you where you need to go,plus it has air conditioning.
We began creating the trail a few short weeks ago. Rolling the clock back, (insert the classic wavy TV dream effect here) We met with her cardiologist, Dr. Frank Ing (a truly wonderful human being who is also Chinese and speaks Cantonese) the week we returned. -We found him through Trinity's jedi master of a piano teacher, Mrs. Iris Beatty. Her granddaughter also has CHD (congenital heart disorder) and she has been a rock for us every Wednesday for the past 1o months.
We met with him and he was quickly taken by her charms. so much so, that while he was explaining the results of her ultrasound- (which by the way looked like four steaks standing upright slapping together- now, I am no cardiologist, but I could look at that and see that something wasn't right) -he was drawing it out on a whiteboard (her heart VS a regular heart) and she started singing while he was doing this- mid sentence he stopped and laughed then said, "I'm sorry, I am listening to her sing and I can't concentrate.". She was pleased too, she made it out without any shots and kept all of her bodily fluids...for the day. A smart one this little girl already learning the fine art of distraction.
A few short days later she was back, and this time with the International clinic that specializes in International adoption children. This was not to be her day. More shots ( I find it hard to believe that they missed any, but I guess Glaxo gots to get paid), taking blood (she is so tiny they were afraid of draining her completely so she will have a return appt.), and she was fitted with a bag to capture her pee. She was not happy. I was not there, and little did I know that the real surprise awaited me...Yes, I was tasked with the stool sample collection. Was not poopageddon, enough, I asked? Don't they have trained people to do this? I know Usability and Design, not fecal extraction. I am out of my league. Why me?! What did I do?! Maybe Trinity needs a biology lesson, yeah! She should do it! My brain was racing, there has to be a way out, there is always a way...
We came back the following week for her catherization. This is where they put a camera in her artery and go up through the groin and into the heart to check it out. They cross reference this with the ultrasound to make the determination for surgery.
Started out early and made our way up to the 18th floor. A volunteer chaplain came by and then it kind of hit us, "uh, what kind of risk are we talking about here?". I mean there is always a risk, right, but that is the sobering one. So we met a PA who was practicing his spiel. I know he was learning but I kinda wanted to grab his script and say, look, this is how you do it! First you smile, then you say sign this consent. We tag teamed, one of us distracted Wren while the other did the paperwork.
The anesthesiologist was great as was our translator. They gave her some happy juice and assured us that she would not remember anything. (to which I asked for some for us) Wren began to get scared so I pulled out the trusty "Two Tigers" song that served me so well in Nanning, and it worked like a charm. Even half drugged it put a smile on her face and her hands went up and she tried to dance with her upper body as best she could. They carried her off and she looked back at Shana at the last moment and was like wha? wait a minute...what's up with tha...
Hours later we got the call that she was alright and could go see her. We went in and her eyes were puffy from the medicine and she was lying there whimpering, waiting for her Mommie to come make things better.
Taking advantage of her weakened state I swooped in for a hold. I had her in my lap and she took to it, no problems. At long last I was able to hold her in my arms again since the short van ride in Nanning, and this time Mommie was right next to me and she didn't seem to mind. Yes, it was not completely her idea and she was under duress, but I'll take it.
The catherization was complete and we would have another appointment in a week to determine the surgical alternatives. while she was under they took the rest of the blood, but something happened to the previous urine sample so they had to do it again, with the bag, and this time the bag leaked. One nurse earned her pay that day. No takers on the stool sample though. Damn! Foiled again! That was my plan, get them to do it. My options were running out.
They did give me an upside down plastic hat that would fit in the bowl and said this would be better/easier than fishing in the bowl. It's the little things in life right? Now I don't need a little fishing net to capture turds, the hat will capture them. Yeah!
Well, I did it, and it was gross. That's all I can say, and a neighbor pulled up in the driveway returning Trinity from a play date while I was hosing the hat out in the driveway. (it was empty, I promise) I had to walk back in the house with it casually and say-just extracting a stool sample- nothing to see-never mind the 8 vials on the counter-just another day at the Tarver house.
We got the call on a Tuesday and a few days later we met with Wren's surgeon Dr. McKenzie, he told us that they had discussed her case and what the game plan was to be. There would be two surgeries, the first one now and a follow up a year later. Wren was with us and was uncharacteristically wanting to go check out the bathroom- many times of saying she needed to but then not going just to get out of the room. I guess she was just done with it and I can't blame her.
(cue wavy TV dream effect returning to the present)
As we go in the examination room she automatically holds out her arm for her blood pressure to be checked and will let the nurse know when the machine beeps that it is done. All done?! Then she sticks out her finger for the oximeter. Looks like a sticker that goes around her finger to check her oxygen levels. Beep! All done?!
Today we were hoping for a reprieve from the blood drawing but alas it was not to be. Mommy pleaded her case to the powers that be...she gave last week and the week before, can they use what has already been taken?
The nurse came in and said that they have good news and bad news. The bad news was that they have to do labs again. Then she went into how the original expires tomorrow morning so they have to do it again. I think that the surgery is tomorrow comment that slipped in there was the good news, but I couldn't be sure because it was not clarified as..and the good news is?
Daddy's muse helps him write better, but the process runs afoul when she edits. More drama, more poop jokes, Daddy. I'm just not feeling it!
So we went down to the basement lab-which is good-the third floor lab reminds of the Trust Mart in Guangzhou. (yes, that is a reference that I will make good on regarding our trip and the unfinished blog- I blame Shana) let me just say that it is crazy town. If you must be bled, then go to the basement lab.
As we walk in, Wren with her baby intuition can sense something she is not going to like is afoot. We go into the room and mom sits with her in her lap and is asked to arrange her several different ways until the nurse determines that she is very small-has she always been this small?-wha? well, yea, I think, I don't know, we have only had her for a month-do we look like her natural parents-can we get on with this-her vein is good, but she is so small...I felt my index finger beginning to straighten, a poking was eminent-but I held back- she suggested that and should laid down on the table...or the rack as Wren thinks. She hasn't verbalized it in so many words but the reaction was in a word, hell. Her little veins provide an excruciating slow drip. I liken it to the lady in the express checkout land at the grocery store who is quibbling over a coupon after a price check and then writing a check by hand while you have a pack gum and just want to throw your dollar down and say keep it.
Drip. Drip. Drip. She is howling and looks over at the needle in her arm and then back up at mommy who is holding her down and I am wiping her tears like a prize fighter in between rounds. She actually sweats about the same. The seconds are like hours, she keeps pleading All done? All done? ALL DONE!!!! Finally.
Back upstairs to collect urine, this time she does not have to wear the bag again, which is good for her, it just means I will be holding the chalice beneath her nether region to collect. Which compared to the stool sample collection last week, I will take any day.
It went reasonably well and were only walked in on once. The thimble full was enough, so now it was on to the next level. Next we signed some consents, something about a database. And research for something that gets snipped and thrown away, I couldn't really tell because I had Wren and she wanted me to sing abc's with her.
After siting a bit more, it was time for the x-rays. This is where they lay her down and pull her fingers and toes out one by one. I am pretty sure this is what was going through Wren's mind as there was no pain and her screams turned her into angry baby, even long after they were finished. She rolled over and told them to photograph this. Such a spirited little baby! 9^)
Social worker came in to let us know the drill about staying\sleeping and recommendations for when Trinity comes to visit. We are being visited by the surgeon's PA the anesthesiologist PA and she is getting checked out for ears, nose, throat, heart and lungs. She found a clicky pen and is very happy, and likes to show her clicky prowess to any and all who are interested.
Seems surreal that this is finally happening. Tomorrow. This thing is happening tomorrow. Wren is scheduled for a pulmonary band procedure.
http://emedicine.medscape.com/article/905353-overview
If mitral valve does not start functioning properly they will perform a Glenn.
http://tricuspid.wordpress.com/2009/07/17/the-glenn-shunt/
Next year she will undergo the Fontan.
http://en.wikipedia.org/wiki/Fontan_procedure
So, now the next build up begins, consents have been signed and the flurry of meetings is over, now we have to digest it all and attempt to process it all and formulate the game plan.
Praying for little Wren this morning! Keep us posted .
ReplyDeleteNicole,Pei and Ava
Wren will be in our thoughts and prayers today. Sending lots of love and light your way.
ReplyDeleteStephanie
Thinking about Wren....... (((hugs)))
ReplyDeleteBrandee