date set

i have only had the feeling two other times.  once when i stepped off the plane with lydia.  and once when i stepped off the plane with sarahjoy.  it's like my body is going to collapse.  as if my knees are going to buckle and i am going to crash to the floor.  the strength is gone and it is all i can do to stand and take a step forward.  the situation is so overwhelming  my body can't quite handle all of the emotions and my adrenaline is going haywire.  it's what i felt as i walked into the doctor's office today.

i wasn't expecting it.  actually i have been feeling quite calm about the whole scenario and even driving to the hospital this morning i was not anxious.  but as soon as i started walking down the hallway towards the door my body started screaming.  'this is too much.'

dr. mumtaz was wonderful.  he walked in to the room and immediately crouched down to speak to sarahjoy who was playing around.  he tickled her a bit and gave her a little plastic heart to play with.  he was kind and gentle, which was a pleasant surprise.  i had braced myself for a super smart surgeon who had less than ideal bedside manner.  but i was wrong, thankfully.  i'll take a great surgeon and great bedside manner any day!

the surgery is scheduled for 8:30am next thursday, february 10th.  they will cut her from the top of her breast bone to the bottom, place her heart and lungs on a bypass machine (which takes over for the heart while it is being repaired), fix the hole, and then close her up.  the surgery will be 7-8 hours.  of course, there is a multitude of things going on in there that i can't even begin to innumerate but that's the basics.  she will then go to the PICU where she will have more tubes coming out of her than she has fingers and toes.  i am thankful i saw my mom after open heart surgery as i am at least a little bit braced for how awful she will look.  as eric tells my mom, 'you were the deadest looking live person i have ever seen.'  i am fully expecting to get that weak-kneed feeling again when i go see my baby girl.

sarahjoy will remain in the PICU her entire stay.  they estimate discharge anywhere between 4 and 7 days.  it varies depending of course on how she comes off the ventilator and all the other tube action going on and if there are any complications or scenarios that need further attention.

the doctor was a perfect blend of optimism and full disclosure.  it is very rare in this country to see a two year old with an uncorrected VSD.  so there is some anxiety among the heart doctors simply because her heart has worked so hard for this long.  the anxiety stems from the reality that with a VSD there is too much blood being sent to the lungs, and thus sarahjoy could quite possibly have permanent lung damage ('pulmonary hypertension') which is a whole different, albeit related issue that we may or may not have to deal with.  the good news is that right now they are not seeing any indicators of lung damage.  but this is the big question mark.  our doctor has decided that because of her age, he will aggressively treat her for pulmonary hypertension after the surgery, watch her lungs closely, and then make long term decisions once the body has settled into its new normal a few months from now.  and consequently, the drug used to treat pulmonary hypertension is viagra.  so i am going to have a good time sending eric to the pharmacy for that one.  maybe i'll get him to pick up a pack of tampons too.

overall, dr. mumtaz was very positive.  he said there was definitely a fair amount of robust conversation amongst the doctors regarding sarahjoy's case.  bottom line, it isn't seen a lot.  and quite honestly i think many of the doctors, who have not been exposed to third world realities, are thrown into a tailspin when they see her case.  they cannot fathom why her VSD has not been fixed.  dr. mumtaz is from pakistan and didn't seem to be at all confused as to why it hadn't been repaired.  he gets that children (much less orphans) in the middle of nowhere china are not going to be high on the heart surgery list.  and it's not that anyone has ever been critical of eric or me, they just seem to be dumbfounded that a fairly straight forward heart defect would not have been repaired.  i wish i could take them all with me to see the realities of china's orphans, or just china for that matter.   medical care is such an expectation in our country - we have no idea the blessing it is to live in america.

so that's the skinny (where in the world did that phrase come from?)  we are praying, praying that sarahjoy will stay healthy.   that's the #1 concern right now.  i'll worry about the whole surgery thing on wednesday night.  right now, we need all the germs to hang on to micah, lydia and josiah and not feel a need to jump ship.

thank you so much for your prayers.  i know that so many of you are praying.  please continue.

and i might add that there was an incident that included eric, a purple diaper bag, and intense words coming from his wife.  that will be the topic of another blog post.  i am afraid if i addressed the husband's absurdity tonight i might undue 13 good years of marriage...


Anonymous said...

praying, praying, praying...

Cara said...

praying for you!! God NEVER gives us more than we can handle. He will get you through this. I have to remind myself of that often!

April said...

Hi Ashleigh!
My name is April and our family goes to Grace as well. I spoke with your husband for a bit last Sunday-it was such a joy to hear about your trip to China. I have been praying for you ever since Tracy and Dan told me when you were traveling to Sarah Joy.
Just wanted to say that as an adoptive mom I understand and appreciate the challenges with a new little one. If I can do anything for you please don't hesitate. I will be praying for you all as your sweet girl heads into surgery.
Wishing you all the very best and many blessings,

Kristie said...

We saying a lot of prayers for you guys and for Sarah Joy. May God watch over her and heal her sick little heart.

Anonymous said...

Praying for you. I can only imagine how very overwhelming this must be, but you are handling it so well, especially since you are, I am sure, still jetlagged! And I am SO proud of you for waiting to elaborate on whatever silly thing your (also jetlagged) husband did! Good girl. :-)

Anonymous said...

Carter prayed for Sarahjoy last night with me and then at breakfast this morning. So sweet...

Praying for all of the Sanzones.
~Karen Schanck