Things are looking good right now

Esther's breathing is back to normal most of the time and she slept through the night, minus when they weighed her at 4 am and did a heal poke at 6 am - I'm going to have to request they wait until morning to do those things.  I'm just happy she didn't stay awake (I wasn't even woke up for either of those things and she went right back to sleep, thankfully!).

Here's a great look at her new "Cindy Lou Whoo Doo!"



I'm thankful also that we got to come down here as they set up an endocrine consult - the endocrin system is things like the thyroid and pituitary gland - and they decided after looking at her thyroid test from birth to now show that she should be on thyroid medications (this is really typical of Down Syndrome), not that she's low right now, but her Thyroid Stimulation Hormone is high while her actual Thyroid output is normal. This means that her thyroid is probably compromised in some way requiring higher levels of the stimulating hormones.  While she can make things work right now, if this continues over time, this is taxing of her endocrine system and will lead to low thyroid function eventually.  By adding a thyroxine now, this will alleviate the stress her system is under now.

Also, the Dr said that DS kids who have their thyroid function managed properly have better performance mentally, and we really want her to get the be that best she can be, that's for sure!  So they started her yesterday and I have to take her in for a blood test in two weeks to make sure the dose is right (too much can make her irritable, have trouble sleeping and can tax her heart, so we need to get the right dose for her).

Here's a pic of her room - we have a great view here and we are just above the giraffes that overlook the giraffe entrance (I put up photos of these giraffes back in October).



This is really an unusual hospital stay for us.  We have a room to ourselves,which means good sleep and less in and out by the staff, but also means there's no one in here to listen to Esther (she has reflux that can really compromise her breathing and it takes a while for it to show up on the monitor, and the nurses are sometimes busy with other patients and can't come in right away - that means she could be choking and not get help for several minutes).  Also in packing to come I was unable to find my cellphone charger, so as of yesterday morning, I have no cell phone.  For me that means I have only two contacts I can reach as I can only call to the local area code.  I tried to reach my brother and was able to leave a message, but he may be out of town or working a 24 hours shift (he's a Bellevue firefighter/paramedic).  I was able to reach some old family friends, the Donnels, who were very helpful and came visiting last time Esther was here in Childrens, and they were able to reach Daryl's brother for us.  I can also sometimes get Daryl on Chat, but only on breaks at work.  Oh yeah!  My brother just got off his shift and is going to try to get ahold of a wall charger for my phone!  Aren't brother's awesome!

So this has been a lonely stay.  No visitors or phone calls, and after 3 yesterday I wasn't able to get anyone on chat either! And I've only gotten one comment on the blog (thanks Heidi! (Heidi and I were classmates from K through 12th grade - that's a lot of time in the same classroom, eh?)  I'm so glad you posted!) - quite different from when we were her in Children's before, but then again, I'm thinking most people have no idea we are back here and it is the busy Christmas Season afterall.) In some ways it's been nice an quiet and I was able to sleep whenever the opportunity presented itself, but also tough as it makes it really difficult to get my meals, take a shower or whatever - once I had just stepped into the bathroom and she totally freaked out - bells chiming, low sats, crying - not sure what happened, but I had to beat a hasty retreat from the bathroom to see what all the fuss was and calm her down before I could "take care of business".  Also, I'm suffering from severe heal pain.  I've had this going on for weeks, but was trying to "fix" it with stretches as I thought it was a short achilies tendon (I had this after Elizabeth was born too), but I just can't get this to go away.  Last night the nurse gave me an icepack for my foot and after wearing that for a few hours (it wasn't really, really cold) I took it off and I couldn't put weight on that foot at all without extreme pain!  Weird!  So then I tried a hot pack - that helped, but it was really sore the rest of the evening - and all that after taking 3 ibuprophen (recommended dose for that is 1 - 2 but it just wasn't cutting the pain).  So I requested a breakfast tray to come here as I just couldn't face the long walk to the cafeteria - so I now have my breakfast here.  My foot is doing better this morning - but upon rising anytime it takes a couple of steps before I'm can put weight on it.  At best, it feels bruised, when it's at it's worst, I start to wonder if I broke a bone in there!  I was going to go see my Dr about it this week, but for some reason, I've not been able to do that! ;)  It will be first on my agenda when we get home, that's for sure!

So put that all together, and it was a very quiet and long day yesterday!

So - update on Esther (finally) - She's back to her old self this morning, albeit stinky (I'm going to give her a bath as soon as she wakes up again).  They are going to have her go back to her normal feeding routine today to see if she tolerates it well (she's been on a constant tube feed since she got to her room).  We should find out at rounds how she's tolerating things without the sodium (they are trying to get her off of this so her dieretic, Lasix, can work better).  She looks good enough to go home, but they want to make sure she's tolerating her normal feeds and gaining good weight.  It really looks like she'll get to go home tomorrow, but I won't know for sure for a while.

Here's Esther trying to get her hand in her mouth - she's doing this a lot now - she even grabbed a cloth that was on her bed and pulled it over her face this morning! This is great hand/mouth coordination for her!


Oh - and I was able to talk with her cardiologist, Dr Kemna, yesterday, and get some more answers about the possibility of open heart surgery, and she did say that there was some indication that her hole was closing, so there is hope.  It's just a balance of how quickly and would it be soon enough as well as balancing the surgery and it's risks with the risk associated with the hole remaining open.  We also talked about switching to a stomach feeding tube - this would go right through to her stomach through her tummy - there's good and bad with this, but mostly good.  This is used for those who need the feeding tube for months as it is easier on the esophogus/vocal chords and such, and also eliminates tape on the face (which over a long time can lead to sensitivities to adhesives (like bandaids)).  It's a pretty simple surgical procedure, but surgical none-the-less.  It's easy to remove when you don't need it anymore though, so that's good.  I should hear from her about this today.  I'm hoping they'll do it since she's already been on the feeding tube for nearly 3 months already and it doesn't look like she'll be able to get rid of it anytime soon.

That's all for now - I'll try to update after rounds, and I've got a couple of posts for my "thoughts on family" column rambling around in my brain today!