Saturday, May 31, 2008

New Developments

What a weekend we've had so far and we're only to Saturday night. I've got so much I want to write, that I've got to detail each thing separately or I will end up rambling.

Elaina had her unsedated echo on Friday. From a cardiac standpoint her heart looks okay. One of the atrial chambers is shunting a little more than before and she has a valve that is a little more leaky than on her last complete echo. They are planning on starting a blood pressure medication to control this. We are waiting for lab results to verify her electrolites before starting this new medication. Her cardiologist is comfortable at this point to schedule her sedated echo and her cardiac catheritization in 6 weeks, with surgery for a Bi-Directional Glenn to follow 2 weeks later. So, we're looking at the beginning of August. Better than had been anticipated up until now.

Blood Work
Like a lot of other "heart babies", Elaina is a hard stick when it comes time to draw blood. In fact, none of the phlebotomists will even touch her at this point. The IV team is extremely reluctant, but will give it a half-hearted try, they usually give up after 1 or 2 tries. Last night, the Hospitalist came and tried to do an arterial blood draw, but was only able to get 1 small vial after 2 pokes. SO, this morning the doctors talked to me about getting a picc line. I debated, but finally agreed. We need to know what is causing her illness to be able to treat it properly, and lab work is one essential way to do this. Up until this morning 90% of her blood samples have clotted before they even get to the lab. The other 10% have either been negative or have been considered contaminated. In fact, one of the cultures from yesterday grew out as "Gram + cocci in clusters". The fact that it is in clusters makes them think that the sample was contaminated by something on her skin. So, they took her down to Radiology for the picc line, and the Radiologist was unable to get it in. So, back to square one with the blood work. Tonight, someone got the bright idea to try getting blood from her scalp. Not only were they successful in drawing the needed amount of blood, they were able to put an IV in the spot. Good thing too, they started her on Vancomycin just in case the Gram + cocci are legitimate. We should know more by Monday. The doctors are also toying with the idea that she may have some type of blood disorder that is causing so much clotting. Ugh.

Elaina still has an increased oxygen need. In fact it's increasing as time goes on. This is very puzzling since all her respiratory virus panels are coming back negative. She is still on the blended oxygen. Thursday she was on 1 1/2 liter flow with a 30% oxygen blend. Friday she was up to a 45% blend and today she is up to 60%, but her oxygen saturations are still low. She keeps hovering between 72 and 77. One of the Respiratory Therapists (RT) actually wanted to transfer her to the PICU so that she could be monitored on a High Flow Nasal cannula or C-Pap. Luckily her new team of doctors didn't feel that this would be in Elaina's best interest, so for now she just stays put. They are going to perform a "sweat test" to see if she might possibly have Cystic Fibrosis. It's a shot in the dark, but they are looking for some reason to explain all the mucus and secretions that just don't go away or get better. In the meantime, they are doing CPT respiratory therapy. This is where the RT uses vibration or thumping on the chest to loosen the mucus before suction. They are also giving her Xopenex first to open the airways and help thin out the secretions. They are doing this every 6 hours. Her saturations went up to 82 for about an hour after her first session, so hopefully this will help as well. The RT is with her right now, so I snuck away out of the room to write this update!

Well, that's all I can think of for now. She's been pretty zonked today since they gave her Versed when they tried to put in her picc line. I'm gonna go snuggle her for a bit before I go to bed. I'll try to update more tomorrow or Monday when I have more detailed information!


Mike & Rebecca said...

Hollie is was nice to get to meet you and see your little miracle Elaina. She is such a doll !!! Hang in there things will get better soon... Hopefully we'll see ya at the picnic.

Take care,
Mike & family

Gourley Family said...

How frustrating! It is hard to have to see our kids go through such hard trials in their lives, and to have to just be there. How I wish we could take away their pain. That is good news for the Glen. Hopefully that will give her time to grow some more and to get the respiratory issues out of the way. Ryker used to get the thumping and clearing out. He had a lot of secretions to. I always called it his "cough-cough" time.
Heart hugs,
Emily Gourley

Vanessa said...

I'm glad the echo went well. I'm a little confused as to why she is having the bi-direction glenn. I see she has TOF with an intact why do the shunt?

I know you are overwhelmed right now with all that is going on. I'm glad they are doing the CF test. We had that done as well, which came bak negative. Are they testing for the possible blood disorder? I'll have to check into that...haven't heard of any other DGS kids having blood disorder, but you never know with our kids.

I'll be keeping you in my prayers. Im glad the PICC line went in well. Hopefully that will minimize some of the confusion and get to the bottom of why she is so sick. Give her some loves from me.

Take Care,

Vaeh's Blog said...

Ah, the thumping. Vaeh was in the hospital so much the first 6 months of her life, that the only real human contact she got then was the RT's pounding on her! To this day she loves it! She even occasionally does it herself.

I, too, was interested in the bi-directional glen with tet? I thought that was a HLHS procedure? Could just be my blonde roots, though! LOL

Hopefully they find a way to do blood draws without repeatedly poking her so much. It sounds kind of morbid, but I love the art line after surgery! They just 'tap' the line for a draw - no pokes!

Praying they find some things out with the tests & can get moving in the right direction to make your little one healthy!

Tina & Vaeh:0) (Jon & Gabby, too!)

Christina said...

I hope they can figure out what is going on with her quickly.

Sending hugs & prayers your way!

from IHH

Jake & Stephanie Ellinger said...

I can understand you feel. My little guy, Nathan, went through exactly what your little girl has with the feeding issues. Elaina is beautiful! Hopefully things will get better soon.
Here is our blog to keep in touch:

Kathy said...

Oh..I keep forgetting to tell you...I think that extra thick mucus is just a DiGeorge thing (or heart thing--no one knows). I've talked to a lot of moms with the same issue. Isaac's is horrible. I always have to suction him...and when he wakes up in the morning..his first feed has to usually be half pedialyte and half milk...I think it's the mucus that causes his to throw up all the time (he just can't swallow it!) I suction his nose alot too (i think the allergies of the season make his post nasal drip worse, which makes the mucus worse)...

YOU WILL be a doctor soon!
AHH...and about the picc line. CRAZY that they couldn't get it in. Ask about a broviac line. They put one in Isaac during a cath...then, he had it through heart surgery...and it was the last line out before discharge. It can draw blood and take iv meds (IT'S AMAZING!)

There is a drug that helps dry up secretions (I can't remember the name...of course)...but, our doc said it messes with the gi system...but, keep it in the back of your mind if the mucus becomes uncontrollable. Are they deep suctioning her at times??

You're doing amazing! Keep it up!

Vanessa said...

Thinking of you guys! :)

Anderson Family said...

Sorry I havent checked on you guys for a little while. I stay pretty busy. :) I know how you feel about the blood poking issues, thats one thing that can get my blood boiling. anyway. It sounds like they did the best thing for her putting the line in her scalp, even though it sounds so sad. But at least they dont have to keep going at their poor bodies. I was told once that if IV team cant get the blood to call the life flight team and have them do it.. I guess they are the best? not sure.

Elaina is getting so big! and is still as adorable as ever!! What a sweet heart. You need to have a nice long talk with her about teasing the doctors, haha. Tell her she needs to help the docs find out whats going on with her little body so she can GO HOME. Silly girl you would think she likes everyone fussing over her.

I think about you every day, Stay strong! You are doing such a great job with taking care of both of your kiddios.

Are you going to the IHH picnic? are you planning on bring Ben? That could be kind of like a date with you.

Your in our thoughts and prayers.

Melynda & Mariska Anderson

Colin's Blog said...

I have read Elaina's entire life story and you will all be in my thoughts and prayers. My son has TOF-pulmonary atresia and we have spent months in the hospital as well. My heart goes out to you. Colin has a J-tube mickey button and it did the trick for him too. He still throws up but, not his formula!! We have also had some not so nice residents!!

And-do not feel bad about not wanting to insert the NG! I had such a difficult time with that! Hoping for a speedy recovery and quick homecoming for all of you.

Take care,
Melanie & Colin