Thursday, April 29, 2010

I'm home.


Hey dudes,

Well, my luxury vacation is over. Mommy and Daddy have ruined my fun and made me leave the hospital. I had lots and lots of fun with my nurses and doctors. I was living the good life... getting waited on hand and foot... being the center of attention... making smiles for all the hospital folks. But, now I am back home. Mommy says she is glad my vacation is over, but I was just settling in and getting comfy. Oh well. Back to normal.

Eva

The latest



Adam spoke with Eva's doctor. We have been cleared to be discharged, which means we should be out of the hospital hopefully sometime this early afternoon.

They are going to be putting Eva back on propranolol, in addition to the flecainide. The two drugs work well together and should hopefully help keep her heart rate normal. There are no anticipated new side effects from being on both drugs... it shouldn't make her dopey or sleepy ... or Bashful or Sneezy or Grumpy or Doc.

The prognosis is still otherwise the same. The doctor is hopeful she will grow out of this. As long as she does not continue to have episodes, we will not plan on increasing her dosage and will eventually ween her off the medications all together. For now though the doctor said continue on normally. There are no restrictions on what she can eat or what she can do.

Thanks for the love... for us and for our daughter. We feel tired, but at peace. He's got the whole world in His hands.


Quick Update... more to come

We made it through the night. Eva got maybe 4 hours of sleep...2 here, 2 there. But her heart has remained stable and she looked happy this morning... tired but happy.

We haven't seen her doctor yet this morning, so we don't have details, but will post them as soon as we do. Just wanted to let you know that everyone is doing okay.

Wednesday, April 28, 2010

We're back.....



















We are back in the hospital with Eva. She had another SVT episode and Adam and I couldn't break her out of it. We spoke with the cardiologist on call over the phone and he told us to bring her to the emergency room.

In the ER they admitted her right away, started an IV, and administered the drug that broke the episode. The good part about having a heart problem is that they skip right pass all the kids with broken arms and barking cough and rush you into the back like a VIP. (Seriously the girl in line in front of us had barking cough. Adam thought there was a dog in the waiting room.)

Anyhow, we were just admitted from ER into the critical care unit where they will watch her overnight. Same nurse we have had before, same wing, but a new room. Thank the Lord, we have a single this time.

I am tired of this, but still am in decent spirits. An ER nurse told Adam and I that we were the calmest parents she's seen in an emergency. We are getting good with emergency. We are seasoned professionals at this. We can now pack calmly for a hospital stay in about 10 minutes... compared with that first stay when Adam came running in the door and bashed his knee and I was running around the house like a crazy lady throwing everything I own (my sewing kit included...just in case) into a suitcase.

We will see her specialist tomorrow and should work out a plan with him for her treatment. Maybe she will be on two meds instead of the one.

I am planning on going into work tomorrow and adam and our nanny katie will watch her from here like "normal."

Now it is almost midnight and my daughter who has three different strong meds in
her is still awake. She also just peed all over my shirt. Awesome.

Monday, April 26, 2010

Adjustments

Life is full of adjustments.

It's now been a week and a half since our last hospital stay and life is (somewhat) back to normal. Eva sleeps (sometimes), eats (all the time) and moves (whenever she gets the chance). About this moving business ... we used to be able to lie her on the ground with a toy and she was content. We could get some work done or watch a show, and she got some serious play done. All were happy. Yesterday we put her down by the TV and she rolled and scooted all the way to our living room. She rolled down the step separating the two rooms, under the dining table, around the chairs and found herself contently next to the windows looking out over the canyon pondering the beautiful view. She's a very pensive baby. Eva also had her 6 month checkup last week and she's growing and developing right on schedule. We're thankful that her heart condition hasn't interfered with her growth.

Corrie and I are working and friending and cooking and cleaning ... all the usual stuff. She has a few big summary judgments due at work over the next couple weeks, so I'm getting ready for some crazy weeks ahead. I'm going to be doing interviews for our next lucky batch of college interns and preparing for a trip back to Malawi in August. We're also looking forward to a mini vacation this weekend with some friends in Newport Beach.

Life is full. And we are adjusting well.

Ps.  Eva's cousins sent Eva a "really cool" Batman towel. For some reason the super powers haven't kicked in yet.

Friday, April 16, 2010

Home again

We're home from the hospital!

They released us earlier today and sent us home with no restrictions ... back to life as normal. She has to take 3 doses of her medicine a day to help keep her heart pacing properly. They still hope that she'll grow out of this condition, but won't know if she did until she is a year old.

Corrie and I are exhausted. When we got home, Corrie fed Eva and put her down for a nap. I was lying on the couch. She came to give me a hug ... and we fell asleep for an hour! It was the best nap we've taken in a long time.

My parents arrived this afternoon, so we're looking forward to enjoying a hospital free weekend with them.

Go give someone you love a hug and enjoy your weekend ... I know we will!

One more thing

I forgot. The doctor explained why Eva probably had this episode now after going so long without one. Apparently the way babies metabolize the flecainide (her medicine) changes around the 6 month point. Around the same time babies digestive systems develop and they are able to eat solids, they also start metabolizing the medicine more quickly. So, rather than it staying in her system for 12 hours it was only staying in her system for about 8 hours. Also, as she got bigger the ratio of medicine per day to body size decreased. For both these reasons the medicine wasn't quite as effective. Now we will be giving her the same medicine, but doing so three times a day, rather than twice a day. Hopefully that should do the trick.

Morning

We made it through night two. And good news, all three Klekowskis have bathed and slept. Things are looking up.

Eva should be released some time today. Her heart has continued to beat normally, so hopefully all this morning's tests and inspections will go well and we will be on our way home soon.

Yesterday afternoon I talked her doctor in to letting us take her IV out. The IV wasn't connected to anything anymore, but they were keeping it in just in case they needed it later. Once the IV was out, Eva finally had both her feet back and we commemorated the event with a celebratory bounce. The video isn't too clear since it was shot with my phone, but you can hear how much Eva is bothered by being in the hospital.

video

Thursday, April 15, 2010

3 Stinky Sleepy Klekowskis



Well, we made it through the first night in the hospital and it looks like we will be here at least one more night. Eva is doing well and hasn’t had any more SVT episodes. They want to keep her another day to monitor her adjustment to the increased medication. I am not excited to be spending another tortured night in the hospital. I am very tired, emotionally and physically. I really want to be home and hold my baby without her attached to a machine.

Last night Eva and I were awoken at 11:30 and were changed to a new room. The new room is a shared room and our co-tenant requires constant video monitoring, so the lights in her room had to be on around the clock. Also, because we are in the ICU they check Eva’s vitals (temperature, blood pressure, etc.) once ever hour. Needless to say, Eva didn’t sleep much. She was awake from our move at 11:30 pm till 2:00 am. Then was awake from 4:00 am till 6:00 am. Luckily she was happy. She just thought it was midday and wanted to play with her mommy, not sleep.

All three of us (Adam, Eva, and I) stink. We were all in need of bathing on Wednesday morning, but when she was purple we decided the bath/showers could wait. Eva has been sponged off here, but has not had a proper cleaning. Due to the general craziness of our lives and Adam’s alarm not going off, he and I missed our showers this morning. So right now we are three stinky sleepy Klekowskis.

Eva is up to her usual tricks, being cute and entertaining all the nurses. She thinks every janitor, nurse, or doctor that comes in her room is here for the sole purpose of playing peek-a-boo with her. Despite having braces on her legs to keep her from bending her knees and pulling or kicking off her IV she has managed to learn how to roll onto her belly and explore every square inch of her crib. She is having way too much fun to nap and I have given up tricking or bribing her into napping. She has had some of the same nurses from her previous stays and they all remembered her from last time and were excited to see how she had grown. One nurse told me today that she remembered her and said, “she is so alert and observant. This girl is going to go places.” She takes after her mother.

I am trying to stay positive, but feel drained. I just want to be home. I want to sleep and I want my baby to sleep. I am very grateful for Eva’s good spirits and relative good health. Though she is still in the same room, Eva’s status was changed this morning from “intensive care” to “critical care.” So while they are still watching her heart closely, she was able to come off her IV drip and a few other chords.

Thank you for your prayers, they are already working. As I have finished typing this Eva has finally stopped playing and fallen asleep... though as you can see, she is keeping her toy close so that when she wakes up she can get back to business and play some more.


Wednesday, April 14, 2010

Back to the hospital.

When Corrie put Eva to bed last night, she was extremely fussy. We thought it was just her new teeth coming in and didn't think much of it. At 1:30am I woke up to Eva crying. She was on her stomach and looked frustrated, so I flipped her over and got out her pacifier. She gasped for breath a few times so I quickly picked her up and she fell immediately to sleep on my shoulder. I laid her down and she was breathing heavy. I woke Corrie up, and we both agreed her allergies were acting up, so we went back to sleep. This morning, Eva slept in for an hour. When she woke up, Corrie noticed her skin was really cold to the touch and her feet and hands were bluish in color. At this point, we knew something was up. After consulting with a nurse over the phone, we decided to bring her into the emergency room. Turns out, we made the right decision!

She was in an SVT (rapid heart beat) episode. The doctors tried breaking her out of it with ice, but nothing worked, so they administered a drug to break her out of it. This led to the most traumatic part of the morning. For the next 90 minutes doctors and nurses attempted to place an IV into her hands and arms. Eva was hysterical and so were we. It was so hard to watch our little girl look to us with tears in her eyes, visibly in pain ... and there was nothing we could do but pray. A doctor who attends our church happened to walk into our room as he began his shift. Though they were still having problems, his presence helped calm our nerves a bit. Eventually they were able to administer the drug and she broke out of the episode ... but it only worked for 15 minutes, as she went into a second SVT episode! It was at this point that they decided they needed to admit her into the PICU. They prepared our room and we arrived with Eva still in SVT. Numerous doctors debated what to do next. They decided to up her daily medication and to try the drug again to break her out of the episode. They also needed to do another IV. It was at this point we decided to head to the cafeteria. Thirty minutes later, we arrived back to Eva's room and her heart rate had stabilized. She is now SOUND asleep. From the looks of her (see third picture below), they had to do some handiwork to get her to take the IV and the drug, but she's staying asleep!

For now, they want to monitor her to make sure her heart takes to the increased dosage and that it keeps a regular beat. As long as things go smoothly from here, we may get to go home tomorrow night. Fingers crossed.

Please join us in praying for Eva's little heart. We thought we were out of the woods with all this stuff, but obviously we're not. Her cardiologist didn't seem too phased by any of this activity. Apparently it's all normal for her condition (WPW), but it's still a stressful and traumatic experience every time we come here.

Thanks for all your love and support! We feel so blessed to have such an amazing family and community around us.