Thursday, February 4, 2010

Good day!

We went to see the cardiologist today and the echo showed that Allison is holding steady on the heart medications! Dr. Lee wasn't sure how she would respond to the meds, but he is okay with waiting another 7 weeks to see her again. If the next echo is good, we could potentially hold off surgery for many months and maybe even a couple of years, but if it's not so good, then we'll be making plans for surgery at U of M.

Of course we knew the meds were working for her, she is a totally different kid! She is now acting like a typical 2 year old. She's active and curious, even naughty at times - gotta take the good with the bad, right? Today she had another "first". She was RUNNING! We've never seen her run before, maybe a fast walk, but she was running the loop with her brothers for about 30 minutes!

The only downsides to the meds are 1) she has a hard time winding down at bedtime and 2) the Lasix makes her pee a lot. She's showing lots of signs of readiness for the potty, but now isn't a good time to try (don't want to set her up to fail)!

Allison also started back at daycare this past week and is doing great! She obviously did not feel well before, but now she's adjusting well. I think it's really sinking in that this is HOME.

All three kids start swim lessons this weekend, so hopefully that will be fun for them and get us through until spring - we're getting a little stir crazy here. Go away winter.

Tuesday, January 19, 2010

Home now

Allison got to come home today! The doctors couldn't ignore her spunk. The look on her face was priceless when I told her to put her jacket on to go bye-bye. She's still on the Lasics and she'll remain on the two heart meds indefinitely. Not sure about the surgery yet, we'll cross that bridge when we get there.

Monday, January 18, 2010

Better today

Allison looks and feels much better today. They added another heart med and also weaned her off the oxygen and so far she's doing great on her own. She really hates the nurses coming in so often to take her vitals. She certainly gives them the stinkeye! We're hoping she'll be able to go home on Wednesday.

The plan is to send her home on all the meds and follow up regularly with her cardiologist (Dr.Lee). We're still trying to figure out when would be best time for the surgery. It's sound like the sooner the better, but it's complicated because of her size. Dr. Lee has been consulting with some cardiologists in Ann Arbor and he thinks it's in her best interest to go there for the surgery.

I've been wondering lately how all of the events of the past weeks are affecting the bonding & attachment process (her to us and us to her). Of course the timing of everything is horrible, but hopefully it will all work itself out.

I'm also concerned about the boys. They're certainly not getting enough attention and I know it's all been very confusing and scary for them too. Ben has been asking a lot of questions lately about death, heaven, sick people, etc. and making connections about how the body works, especially the heart. It's hard to be honest about such matters without scaring him.

I guess all we can do now is just take one day at a time. I can't spend anymore time thinking about the past and I can't waste my energy worrying about the future.

Sunday, January 17, 2010

the big question

So the question is when to do the surgery. Originally Dr. Lee wanted to give Allison some time to transition and adjust to her new home, and also to see how she grows. We didn't think she was having much trouble with her heart at first, but in hindsight some of the symptoms were there, we just didn't notice them until they became more frequent.

The good news is she is feeling much better. She's getting a little feisty with her tubes & wires! Her appetite has returned (she had french fries for lunch) and there's no nausea or vomiting.

Right now the plan is to continue to eliminate the water retention and also reduce her supplemental oxygen. So we'll be here again tonight.

In the hospital

I decided to start posting to the blog again to keep everyone updated. We brought Allison to the ER yesterday. She had been having bouts of nausea & vomiting along with a myriad of other symptoms, but it was the puffiness or water retention that prompted our pediatrician to send us in. Upon arrival her blood oxygen level was only 81 - not good.

So she was admitted yesterday afternoon and so far they've done an echocardiogram, a chest x-ray, and an abdominal ultrasound. Allison's cardiologist feels that it is her heart that is causing all of these symptoms, that her heart is not pumping as efficiently as it should due to her leaky valves. The other doctors here are still trying to rule out other causes for some of her puzzling symptoms. They did start her on some meds that will help her heart pump more efficiently, so we're just going to see how she does on those.

She looks better today. I think the extra oxygen is doing her good even if she hates wearing the nasal canula. Right now we're waiting for the doctors to do their rounds to see what the next step is.