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!
Hollie, Ben and Elaina