Wednesday, July 02, 2008

The Neverending Day...

What a LONG day! Let me start at the begininng. Last night was a tough one. Elaina's saturations were low, in the 50's, and her lactic acid level (it indicates the stress her body is under, normal level is 0.5-1.6) went from 1.4 to 5.9 in 4 hours. She had the staff in a panic, and so at 1am they decided that they needed to put her back on the nitric oxide. They checked a blood gas 30 minutes later and her level was back down to 3. The last time it was checked, this morning, she was back to 1.6! So it seems the nitric is working. I finally crawled myself into bed shortly after 2am but I made the nurse promise to wake me if Elaina's blood gases were declining again. Fortunately I was able to get a few hours of sleep without a knock on the door.

The original plan had been to go to MRI today, but the Nitric machine isn't allowed in MRI, so that plan had to be scrapped. Mid-morning I was told that she was the next case on the docket for surgery to put in her broviac line. She didn't actually go to surgery until about 1:00. They tried to put the broviac through her lower abdomen into the inferior vena cava, but they were unsuccessful. This is unfortunate because at this point it is essential to have access for medications and blood work. We have 2 options left, but they are both dangerous for different reasons. First choice is to take her to Floroscopy and have the Radiologist put the broviac in either her back or her liver. This is dangerous because if she bleeds, they won't be able to stop it quickly. But this is also the most preferable option. Second choice, that I really hope we don't have to resort to, is to put the broviac into her Glenn. This is highly dangerous if she gets a clot or an infection. I pray that they do not have any complications with this procedure and that we don't have to go to the 2nd option.

Once we got back from the OR, Elaina was sent for an angio-CT. This is similar to a regular Cat Scan, but they injected dye into her veins during the CT to see how the blood was flowing. Then when she got back from this procedure, she had an echo! What a busy girl she was today!

Anyway, here's what we were able to find out today from the results of the CT and echo. To simplify the explanation I was given: She has a collateral vein that has re-routed some of her blood supply. This vein is growing in size as the blood chooses it as the short cut to circulate the blood through her body. The reason it's a short cut is that this blood flow bypasses her lungs, and therefore isn't getting oxygenated as it circulates. So, the good news is that her Glenn and Central Shunt are open AND this collateral vein can be fixed. She will be going to cath lab tomorrow, they are going to go in through her left jugular (in her neck) and they are going to try to coil off or tie off this large vein. If all goes as anticipated the blood will return through the Glenn and shunt, and Elaina will be able to have her better profusion back, and we can get back to the original plan of weaning her off the vent and getting better so that we can go home some day. :)

Tonight she is still on the ventilator, on the nitric oxide, is paralyzed and sedated and is off feeds in anticipation of the procedures tomorrow. Her blood gases are acceptable, so the nurse is just going to let her rest so that she'll be prepared for another hard day Thursday.

On a side note, her poor little left leg is not doing so well. The art line that they had in her groin really caused some problems with blood flow to her leg. From what I understand, the artery clotted. Right now there are no pulses in her foot, but there is capillary refill. There is a Vascular Surgeon from University of Utah that is checking on her daily. He was able to doppler (an amplifier that allows you to hear the pulse) the artery at her groin (femoral), and he also heard a small pulse behind her knee but still couldn't find it in her foot. Her poor little foot is so cold.... The surgeon doesn't feel that he needs to do any type of surgical intervention at this point because the foot isn't getting worse, but I'm still concerned. One more thing to add to my worry list.

She is so strong and so beautiful! I can feel how powerful her sweet spirit is. She has been given so many beautiful blessings and I know that the Lord is answering the prayers that are being said for her. I appreciate all the prayers and concern that we've had through this long journey. I don't know that I'd still be sane if not for all the love that has been shown to our little family. Thank you all so much!
Love,
Hollie, Ben and Elaina

9 comments:

Christina said...

I have not posted a comment in a while and I wanted you to know that I am still here checking up on you guys with every post.

We are praying for your family. I hope the doctors are able to get the broviac in soon and they will be guided to make the best decisions for her medically.

Sending HUGS and PRAYERS your way,
Christina
from IHH
Jacob's momma

Caden said...

I'm sorry that things are not turning around quicker, but hopefully after a busy Thursday, things will look better! I will tell you that Caden had a blood clot in his femoral artery from his art line, and now his leg is just fine. It took several months of blood thinners and treatment, but you'd never know now! So don't lose hope on that part. We are sending praying for your family.

Vaeh's Blog said...

Whew! I was so happy to read that things are starting to go back up! You really had me worried, Elaina! Here again she's showing them that she just wants to be an attention hog!

Praying that the procedure(s - ?)all go well today & that she is able to once again start concentrating on going HOME!!

Always praying...
Tina & Vaeh (Jon & Gabby, too!)

Krista said...

Hi Hollie...

I found a link to your blog from Vaeh's...and then was surprised to see you had already linked to Kate's Kart...thank you!

I'm so sorry that things are going so rough right now...I know it probably just seems totally overwhelming. Obviously little Elaina is a trooper and is fighting hard.

I will definitely keep you all in my prayers...and pray that you are on the upswing.

Blessings from Indiana
Krista

carolyn q said...

Hi Hollie,
I knew yesterday was a very difficult day and I called to talk to you but you were eating (which was a good sign). I hope the nurse left a note letting you know I called.
If you need me to come sit with you, please don't hesitate to call me.
Praying for much need stregnth for your family.
Heart Hugs,
Carolyn

Djinni said...

Your Burden is so heavy, you are amazing to be still holding up. I feel the weight of it and it pulls me down. I will continue to pray for you and Elaina, I hope we can all make your burden lighter through prayer. What warriors you all are, including Ben, (Ben is such a trooper). I hope that you can breathe easier soon. Know that I'm here if you need an ear. Heart Hugs, Djinni

Pam said...

Holy smokes she is one busy baby!!

Well the good news is that you have some solutions, and of course the procedure for the bovaric line will go fine, because everyone is praying for her, right?

She is just making those Dr.'s earn their money. After all she is in one of the most expensive hotels around!! ;)

I am thinking of you lots. I hope things go well today.

Rhett sends Elania a big ol' slobbery kiss. :)

Loves,

Pam and Rhett

Isabella said...

Lots and Lots of Prayers are being sent your way. Elaina is a tough little warrior. I am glad they found out what the problem was. Now we are praying that they get it fixed and she gets back on the road to recovery.

Gourley Family said...

We are thinking of you and your little Elaina! We are praying that things will get going better!
Heart hugs,
Emily and Mike