Seattle--again...

After all the ups and downs there is still things that have to be done and that includes the next big test she has to have. Every 6 months to a year Alana has to have an ECHO and EKG done to look at her heart. This is for a couple of reasons but the most important one is to look for pulmonary hypertension. When children, or anyone for that matter, is on O2 it is something that you need to keep an eye on and she in no different. I really like her heart doctor. He’s told me on more than one occasion I am Alana’s advocate, that if we are not making headway with someone to move on or make more noise until we do make some headway.

It’s nice when I can report great news here and so after having her ECHO and EKG the doctor told me the results right there, her heart looks great! Whooo HOOO! There’s no evidence of PH and everything else looks good. She’s still has her murmur and we are told to keep a close eye on the episodes of tachy and bradycardia that she’s having and if things get any worse or we notice fainting spells or other to bring her back right away. Otherwise we are good for 6-12 months. It’s so nice to have an appointment go smoothly and to leave with no thoughts of bad news to share. This was just last month so guess what?! We are here now, the present; crazy huh?

I’ve now been kicked back in my chair for awhile trying to think of where to start…she’s still having bad days, a lot of them in fact. To summarize this month in regards to her and her illness it’s been slow going. She’s been having fevers closer together and had a good set this weekend. As well as that she’s been really struggling with PT to the point that she was over 2 ltrs of O2 and still struggling to breath. I sit at poolside and watch her try with all her might to swim with help from a float or other and she cannot do it. Her feet and her hands no longer work in coordination with her mind. It makes me cry at night.

She went into McDr (yes, we are now calling her McDr, Dr. McArthur, according to Alana) today to see if she has developed pneumonia again because she’s coughing way more then she was even 5 days ago, she’s running fevers, she’s pale, and she’s needing O2 at higher flow rates. The good news is, that just from looking at the x-ray and not having the radiologist report yet, it looks OK. There are still infiltrates in her left lobe but they are always shifting and there. Tomorrow we should have the full report and will make the decision to start antibiotics.

We did talk about her increased lack of coordination, the fact that it’s been months now since the cough started again and then the biggie that she’s not gaining weight again. And in again I mean in the past 2 years. She still has not gained back the weight that she lost in October and December and in the words of the dietitian, her growth is “stagnant” all the way around. We’ve heard mention, from some of her other doctors that a NG or G-tube might be in her future but I’ve been resistant to think about it. I don’t know how long that can keep happening though. I was looking through photos of her way back in Craig when she was 3 and she has on this jacket that my mom made, well this weekend she was wearing that same jacket and it was still a bit big on her. *sigh* McDr said today that we might have to talk about this soon, like in a few weeks. If we do an NG tube and she gains weight then she will have to have a permanent g-tube placed to help her in the long run. Not something I want to think about right now.

McDr also mentions “progressive” again. I did it, I couldn’t help it; I started to cry. Please someone explain to me why I can’t seem to hear that word and not get upset?! I get it though, her increased loss of coordination, her increased O2, her increase in autonomic issues, her increased motility issues, the fatigue, the fevers being closer together, they all scream progression. Don’t cry just breath, right?

Another thing that I haven’t mentioned is that next week we leave for Seattle Childrens again. If you recall the last update I mentioned this and it’s now that time. Her appointments start on the 10th and we have no idea how long they will last. We are meeting with this guru on mitochondrial and other metabolic diseases and she will be having another surgery, this time a thigh muscle biopsy. No word on what day that is going to happen as we are meeting with the surgeon and the GA clinic on Thursday to see what they think about her going through another surgery. It will be while we are down there (don’t get me started on Seattle Childrens again!) is all we’ve been told.

So as usual we have a lot going on around here. Its summer break and the other 2 chicky-poos are home and I love having them around to myself during the days and taking them places with me. They are all giggling upstairs right now and its music to my ears! They are supposed to be folding their laundry but I think I will let it slide that they are not and in its place they are playing with each other.

Now that we are in the now, the present, the moment I will be doing the updates as they happen. The laptop is coming with me to Seattle so that will make things easy to keep current, also, here’s another link that I will be using while we are having “issues” or in-patient stays:

http://www.caringbridge.org/visit/alanastephens

On that page you can sign up for automatic updates whenever I post something. I will still always be on here, but it’s nice to have automatic updates when we are going through something big with her.