Wishing Waiting Hoping Dreaming - One More Day?

One more day. Still here. One more day. Still here. One more day. Still here. (sigh) Her oxygen saturation levels are not within the range they would like them to be so they are being "conservative" and erring on the side of caution. They took her off the oxygen completely on Saturday after having to use it for a short bit really early Saturday morning, like 3:15 am early morning. FYI- if you are driving along Fannin and you hear a crunch of twisted metal and glass, then it is the oximeter I chucked out the window. I sent its hellish banshee cry of a Beep back to whence it came. Actually, I think I will take it and do what was done to the printer in Office Space. Nothing a little Louisville Slugger therapy wouldn't fix.

Here's the scenario. It goes off, so I sit Wren up and coax her back to sleep, (this takes some doing- about 5 refrains of ABC's and a loop of the same Chinese Lullaby, Two Tigers, then I get back in bed...er...I mean the couch/makeshift bed, get comfortable as I can and close my eyes. BEEP! This went on all night, and has been for the past three.

It is difficult because she does so well during the day. Shana and I not so well. 8^) We are rotating shifts now so one of us can rest. Wren has progressed really really well. She is a tough little warrior, endured so much, taking the constant prodding, poking, weighing, medicine taking, and baths...well, she kinda likes the last one. But rest assured in her own words, ALL DONE. She is full up. Grabbing my keys and using the remote starter from the 15th floor-pointing and saying, "She-YA-YA car?".

That is the update basically, but I have some images to share about what we have been up to pass the time and in the midst of getting better.


We go for walks.



We love to eat noodles lovingly brought to us from Ms. Agnes, because the hospital food tastes like...well...hospital food.


We spent the Chinese Autumn Moon Festival here, but wonderful Ms. Jennifer brought us a moon cake. (Jennifer recently started her forever family in May!-she and Shana are in some sort of International Adoption Club and the first rule of International Adoption Club is that you DON'T TALK about International Adoption Club- seriously they have screen name handles and secret handshake, websites, blogs-everything. They serve your food, design your brochures, take care of your children...)


We showed the doctor whats what.



Found the playroom, and made some grub. Is it real food or hospital food? You be the judge.


Took some baths. Not as much fun when you can't splash or have your rubber duckies.


Best part was when our big sister came!!!!! Our room overlooks Fannin, and one day I called Shana and told her to take Wren to the window. Trinity stuck her hand out of the car and waved and she could see us from the 15th floor. I had her on speaker in the car and she just shrieked like I have never heard. It was the sweetest thing. She loves her Jie Jie very much!


Chilled out with some friends.


Played dress up,


balloons,


and indulged ourselves with our greatest passion. (Mama Hi-Hi's)

Yep, she is something else, our little Wren.

How to mend a broken heart

Leading up to this day I started reviewing her old (I say old, but really it is only barely a month) paperwork. While in Nanning we got a disc of pictures and reports from a charitable organization (Grace and Hope) that had sponsored her while she was in foster care. In fact, the wonderful people that sponsored her kept her in foster care as opposed to the orphanage. Yes, it literally was one of those-for the price of a cup of coffee a day-things.




What we have is priceless as it it yet another piece of her past. We can read about games she would play and things that interested her, and more importantly photos. It is silly, I know, but I look at the photos and see her with her foster mom and family-see her so happy- and it feels like I am reading old love letters of my wife's from whomever and feeling a sadness of not being there. You can't help but get a little jealous. Like, hey! you can't be happy without us! You study every word looking for clues hoping to read about how her family is coming, only thing is she had a family.



We new this day was coming since we locked her file on December 18th of 2009. We knew what lied ahead and always held out the hope that it would be a misdiagnosis, that someone made a mistake. Even after meeting her, she exuded no signs other than a heart that sounds like a washing machine instead of a drum. Still grasping, maybe it isn't as bad as we think. All that went away after the catherization with Dr. Ing. Reality was here and knocking very loudly.

It is pouring rain this morning, I quickly think back to the Temple blessing and Cordelia's "Distinguished Guests" comment. And how.

The clock was set and ticking, thankfully it was on a quick timer so we really did not have much time to think or plan. We just knew it was coming, bracing for the impact, assuring ourselves that this was the right thing to do, we were at the best place to do it, sooner was better than later, we had done our part and now it was out of our hands.



All was well (i.e. was holding it together) until the volunteer chaplain came in and asked to pray for Wren, at that very moment the thought that she might mot make it through entered my mind. You immediately try to excise the thought, I can't think about that now, let me wait until she is out of the room, I have to hold it together for her so she will not be scared. So, my mind went to comedy as its defensive device. The guy looks just like the dude from Poltergeist 2, the one who knocks on the door. He was a very sweet and loving man, and my mind was bad for associating him with a scary ghost, but you gotta do what you gotta do to make it through.

The prayer ended and the anesthesiologist came in and gave her some happy juice. She drank the battery acid. (with my assistance-daddy has to put the villain hat on for medicine taking sometimes- the dreaded hold and tilt) She responded pretty quickly and I got to spend some great quality moments with her as went went through the whole cycle of games we play together. My new favorite is butterfly kisses. She has these long beautiful eyelashes, and I just can't help myself. She laughed and giggled and I kissed her. Then it was time. I laid her down on the bed and quickly turned away. I only needed to hold it together for another minute or two. They started to wheel her off and I could not look over, so mommy took it for the team. In fact I couldn't look at Shana (my mirror) for another few minutes.


She was off, it was happening. At long last, we were starting the process to fix her broken heart.



The surgery was a success. Dr. McKenzie is a rock star. All that he had anticipated came to fruition. The band took right away and she was intubated in the OR which put her on schedule for a quick recovery. The hospital gave us regular updates every 1.5 hours right on schedule.

At one point we went downstairs and choked down some Chick Fil A for lunch just to have something in our stomachs.

When we went back up we met with the surgeon and he told us it went great and that we could see her in about an hour. It went fairly quickly, Shana looked up at me and asked how could I be working, and I told her it was a good distraction. The waiting area was interesting as one group threw down the entire Frito Lay catalog and ripped open all nine packages and had a dim sum of chips. They proceeded to crunch with reckless abandon, it sounded like they were on the intercom. Chomp chomp Crunch Crunch slurp slurp...it smelled like corn nuts. I was ready to go.

At last we went up to the 18 th floor and there she was. It looked like when Neo was freed from his jelly pod in the Matrix. Tubes everywhere. It sounds like Dr. Frankenstein's lab. There is some kind of liquid bubbling, the myriad of tubes and the charts, and there she was. Lying on her back, strapped down (so as to not pull any chords out) and then we could see where the incision was made. It was brutal, and painful to see her in such a state. We both instantly thought-what have we done to this little girl?!





So, yes it is hard, it is painful to look at, and we will have to do it again in 6 -8 months, but if it means that I can continue to give this child butterfly kisses for decades to come then I will gladly suffer now.

Surgery Prep or (No Matter How Much You Do It I Will Never Like It When You Take My Blood and Pee)

Monday 09/20/2009 6:09 am

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.