this heart broken

Yesterday Zoe turned 2 but her party is this Saturday.  Its hard to believe it’s been 2 years since she was born.  Sometimes I think we’re doing well with all the changes and sometimes it feels like it’s made us a bit deranged.

I think I’ve said it, I hope I’ve said it but thank you everyone for all the help given in the last two years. We’ve been the recipients of a lot of generosity in the form of money, time, meals, prayers and lots of listening ears. This website is sometimes about updating everyone and sometimes just about giving me somewhere to vent my frustrations. The last two years of my life has been one LONG lesson in learning to allow others to help me. That may not seem like such a hard thing to you well adjusted people out there but believe me, I’m not well adjusted. I just read an article on this topic by a woman who is frighteningly similar to me which helped me see the reasons why asking for help and allowing others to help me is like listening to fingernails on a chalkboard http://www.conversiondiary.com/2008/05/accepting-help.html.

First you must know that I struggle with only seeing value in myself for what I can do, how much I can accomplish, where I stand on the tally sheet of giving more than I get. All these things mesh in my head and produce that euphoric feeling of, “I matter” and “I hold value”. The question then becomes, “Do I matter if I have nothing to give”.

In most areas of my life pride just doesn’t come into play. I could care less if I own an expensive car, have the latest gadgets, if my hair is perfect, if I’ve worn make-up in the last three days, if my clothes come from Goodwill (maybe that’s more of a reflection on personal hygiene) but it rears it’s ugly head in this area. Me accept help! I can do it myself if I just work hard enough. Never mind that it may kill me to do it alone I’d rather that happen than let someone ease that burden. And then there’s always the fear that it won’t get done “right”. It’s hard to relinquish control over making sure things are done just so just to ensure that they’re done at all. Having things “just so” runs in my gene pool because my son, as I write this, is struggling because the place cards in his game are not in the same slots he left them. And I suspect those that came before me may have exhibited this gene as well (you know who you are).

Enter the last two years of my life. I’ve had to let people donate sick leave for my husband, fundraise for medical expenses, cook for me, watch my son, drive up snacks to me at a hospital 40-60 minutes away, do my yard work, grocery shopping and almost anything else you can think of. I even let one friend clean my house (something I never dreamed I’d allow). Everytime I had to accept help from people, most of whom I barely knew (remember we had just moved), it was like a little dagger to my pride and a huge tug on my arms holding tightly to the control booth. Slowly I got better at saying, “this is what I need for the week” and then not feeling quite so bad that I had burdened those around me…..yet again. It’s hard being the charity case all the time. Recently, my friend skewered what little pride I had left by fundraising on her blog to get me a laptop so I could stay connected to family and friends when my daughter winds up in the hospital. Egads!

On the other side of the issue I experienced the loss of many friendships during my pregnancy because people refused to allow me to help them in any way or burden me with the problems they have in their lives. I discovered how isolating it is to those I don’t allow to help me.; what it feels like to be shut out. When you block someone from helping you it does not allow them to enter your life and leaves them feeling alone and disconnected. True fellowship requires that intimate and messy involvement even if it means scrubbing a few toilets.

Sorry to leave everyone hanging regarding her biopsy results but they didn’t call until late Friday afternoon and then it was the weekend…and….and….(excuses, excuses-thanks for reminding me I needed to update this Heidi).  Her rejection score is a big whopping 0!  That makes it nearly two full years without rejection!  I don’t have all the official results back from her stress echo but it looks as if she’s clear from coronary artery disease as well.

There are still some decisions to be made about her main medication; will we switch back to Cyclosporine and hope her appetite and general health/weight gain goes better or stick with Tacro?  Although she  is gaining weight and looks much chunkier she is only 3rd percentile still for her age and is hanging onto that growth chart by a fingernail.  That’s with me making sure that EVERYDAY she gets a 1000 calories and really, who’s kid ever eats the same amount consistantly?

We should be free from clinic visits for three months but we go in for labs tomorrow partly because some of her lab results from Thursday came back strange and partly because I forgot to hold her morning medication on the day of her surgery.  In all fairness, it was 6:45am, I couldn’t drink any coffee in the pre-op area and the anesthesiologist told me to give it to her.  In the back of my head it felt wrong but the cobwebs were too thick so down the hatch it went.

I’ll post more as it comes.

We’re home and Zoe is getting ready to go to bed.  Overall she did really well today and has bounced back fantastically.  She even ate a good dinner!  The challenge will be to slow her down over the next couple days while her cath site heals.  She’s supposed to be subdoed for two days and not walk much (ha, ha).

We’re in recovery now and she did very well even after she came out of anesthesia without us (we don’t see her until an hour after she comes out of surgery).  The nurses took good care of her and braided her hair, got her a fuzzy new blanket and a new stuffed animal (of course).  Since she had to have an echo in her first recovery period we’re actually almost two hours into our four hour recovery time so we’re supposed to be released around 1:30 or so.  The inital results of the biopsy look good (her pressures and measurements all look good).  The team will come in shortly and tell us how her stress test went.

We brought Zoe here at 6:15 and the girl was not really thrilled with the situation.  She was not cooperating and actually took a swing at the nurse so when the anesthesiologist saw her he suggested giving her some meds to take the edge off before she went in the operating room so she wouldn’t be so freaked out.  She was extrememly loopy by the time they took her back and hadn’t a care in the world.  The medication will also cause her to forget everything going on before she’s completely under.  The other good news is that one of her former, and our favorite ICU nurses is now working in the cath lab and so will be with her during the entire operation.  It was hugely comforting that Nurse Amy was going to be in there reading her a story while they put her under and then giving her lots of kisses during the procedure.  I can think of nothing better other than being with her myself.

The procedure is actually going to be much longer than we had thought: 2 hours and 45 minutes and then an hour in recovery before we get to see her.  Then we’ll be with her for 3 or 4 hours before we’re allowed to take her home.  LONG DAY.  However we did find out that she will not have to be intubated (have a breathing tube in) for the operation.  We’ll keep everyone posted.

The pediatrician cleared her for anesthesia today so we will be checking in at Children’s tomorrow morning at 6:15am.  So early but good since she can’t have anything to eat after midnight and nothing to drink after 4am.  We’ll keep everyone posted.

she takes matters into her own hands.  I found her “playing” in the toilet this morning and in a moment of clarity asked her if she was thirsty.  “UH, HUH” she said to me.  Unbelievably gross but apparently effective as I had no choice but to give her some real water.  The docs have reduced her water intake because the girl was drinking upwards of 30 oz a day.  Silly thing was filling her body with water instead of food so now she has to drink caloric liquids before she can get her precious water.  I decided not to be the bad guy this time since it feels oh so wrong to say to your kid, “no honey, no more water today”.  So when she asks for water I tell her, “Dr. Boucek says you have to drink some smoothie first” or “Dr. Law says no more water but would you like some juice”.  It was cute and pathetic all at once when she’d gaze at me with a look of defeat and say sadly, “k”.

I  have exactly one day and 17 hours to keep her fit as a fiddle so she can do her biopsy and stress echo Thursday morning.  NO MORE RESCHEDULING!  Can you tell I just want the thing done?  We’ll go in early Thursday morning for check in and hopefully be home by early evening.

Our new game plan with getting Zoe off the feeding tube is to have me count calories after every meal and then adjust her tube feeding accordingly.  I’ve been using a variety of online calorie tracking tools.  The encouraging news is that yesterday she finally showed some appetite at dinner and ate a FULL MEAL.  That’s right.  Oh yah.  I think that was her first full meal since the tube went in.  She ate all the food over the course of 2 hours but it allowed her to skip one full feeding last night! She’s getting positively chunky!  I’ll try and post a picture soon but our camera is out of commision (the euphamistic way of saying we dropped it on the ground and it broke).

Zoe got discharged on Wednesday evening even though they hadn’t decided yet what was going on.  She didn’t end up needing an IV since I was able to keep enough fluids down her via her tube.  She was originally admitted because she began spiking fevers over 101.5 with an unknown origin.  She had a leg injury they were worried had gotten an infection in the joint (she fell a couple weeks ago and we thought she broke it) but they felt confident they had ruled that out.  Good news, today she started walking on it for the first time in two weeks so no MRI or bone scan for her!! Anyway…they sent us home since they weren’t doing anything there I can’t do at home.  Her oxygen levels were dropping lower at night and so she had ambient oxygen (yah, that means her oxygen sensor goes off everytime she rolls away from the oxygen mask) but they weren’t so low that I couldn’t take her home.  They did our favorite test called a viral swab where they shove a tube into her sinuses and suck out gunk to test for a host of viruses.  That came back on Thursday and showed she has a virus called metapneumovirus that is VERY similar to RSV but shouldn’t be quite as severe.  This one comes with the added bonus of nausea and vomiting so she immediately stopped eating when she got sick, sporadically vomited and is still getting a limited amount of food via the tube.  Each feeding is based off “mommy intuition” as to what I think she’ll keep down.  Needless to say she’s lost some more weight but today she seemed to feel better and was definately playing more and trying out the idea of eating food even if no more than a bite would get down.  She gets set back on her food intake everytime she feels icky in any way.  When she fell and hurt her leg she slowed her eating down to almost nothing and then with the virus it was sayonara food.  Her docs said that she probably won’t be off the tube until the end of summer…not so temporary after all.

She has managed to dodge her biopsy and stress echo yet again (it was supposed to be on Friday) and my little joke about scheduling it for May 2010 isn’t quite so funny anymore.  We’ll try again in July probably.

They’ll be revisiting the issue of her nutritional level again since the latest blood tests show her prealbumin level dropping another point.  Even though she’s been sick that shouldn’t happen so they’ll be talking with GI again and running yet more tests.

We’ll do labs on Monday night with Hector since the ER blew out her only good vein and he’s our only chance at getting blood.  Thank goodness he’s there…hopefully he’s not taking the day off.  Enjoy your three day weekend everyone!  I’m going to enjoy sleeping in my own bed…hmm.

[paul writing for Jenny]
Well,
she’s back in again. On Monday morning, Zoe decided it would be great to start vomitting. Her pedatrician saw her, and recommended she be admitted to Children’s that day. So, Jen called to tell me the good news at 3 ish, and I immediately cancelled the rest of my busy day to come home, entertain Zoe while Jenny packed, and usher them into the waiting arms of Children’s Hospital.

If you don’t know why I typically volunteer for this “call of duty”, it’s because they usually want to put IV’s into her tiny little arms shortly after arriving. After all the other entrance requirements of height (she REALLY hates the measurement board), weight, HR, temp, O2 Sat, etc, etc, etc she’s agitated, and not real excited about a lab tech sticking an IV in her arm. So, I let Jenny walk the halls in freedom while I listen to my baby scream, cry, and sweat profusely. I hope you get how painful this is for a father to do, and how even more painful it is for a mama. So, I stap my boots on tight, and cry with her, pray for us to be courageous, and pray they find blood on the first poke.

Good News: they didn’t need to draw blood last night.

Bad News: they don’t really know what’s going on, and because it could be viral, they have quarantined her room. This means all hospital staff going into the room must put on yellow suits (like you see the ER docs in “ER” wear) and masks. This isn’t a problem for them, however it means Jenny is trapped in the room, and can’t leverage the “common” areas in she’s accustomed to. So, no checking email, posting updates to the blog, using the Snack Room (has crackers, pudding, jello, juice, ice water, a refrigerator, etc).

I feel really bad for Jen, and this is immensley discouraging. I know it’s horrible to feel trapped in the room. Please be prayerful for our family, as we labor through another visit.

Paul