Wednesday, October 22, 2014

The Flow is a Go

Yesterday we had our big meeting with the doctors. It was Aria and I and 12 others representing neonatology, hematology, genetics, neurology, pediatric advance care team (pact), nurses, and one social worker. (We talked with ophthalmology earlier in the day because Little Dorrit's attending physician thought there might be too many people at the meeting). The meeting was a bit overwhelming at first.

Neurology went first and gave us the results of the MRI.  Little Dorrit has blood flow in her superior sagittal sinus! We are so happy about that! There are not clots in her brain. She does have some small bleeds but they are on the outside of her brain and neurology is not terribly concerned about those for now. Unfortunately, she does have some damaged white matter throughout her brain. White matter is the nerve cells that connect grey matter which work together to carry nerve impulses between neurons. The neurologists are unsure what the impact of this finding will have on Little Dorrit.  She is young and her brain is still forming so with early and consistent therapy, they believe it is possible to mitigate a degree of the trauma her white matter has suffered.

Hematology is still trying to find the right levels and intervals of medication for her situation.  The pact team is trying to manage her pain. Genetics had Aria and I provide more blood for further genetic testing. Often, people with Little Dorrit's condition only have one gene error but she has two and they are trying to find out why. The results of all three of our tests should be known by the beginning of December.

The doctors have now tapped and drained her pleural effusion twice. The fluid returned yet again overnight so today they installed a permanent line to drain the fluid out. Since doing so, they have already collected 210 milliliters! Tomorrow, Little Dorrit will undergo a lymphangiogram which is a special x-ray of the lymph nodes and the lymph vessels. Hopefully, this will tell us exactly where and why her lymphatic system is leaking and filling up her pleural space. Tomorrow, they will also take out the SICC line in her groin and give her a PICC line in her arm.

Ophthalmology is concerned about the hemorrhage in Little Dorrit's right eye. The fellow we spoke with said that when he examined her eye he could not see the back of it because of all the blood which means that she can not see out of it. They want to perform a vitrectomy as soon as she is stable enough. The vitrectomy will remove the vitreous gel from the middle of the eye thus allowing her, hopefully, to see out of that eye.

There is some progress and hope but Little Dorrit is still very sick and new conditions continue to arise thus stalling or retarding her progress. She continues to be a mystery to her doctors but we continue to hope, to varying degrees, that things will generally trend upward. In this seemingly never ending cycle of hoping, worrying, traveling, meeting with doctor after doctor after doctor (then studying our notes from our discussions with them so we kind of know what they are talking about) we continue to feel your love and support and are grateful for it all. Thank you. -EA

3 comments:

Katie @SwimBikeQuilt said...

Nothing like drinking from a fire hose--I imagine the meeting was a little intense. I'm so grateful you guys provide updates. I hope you were able to take some time to relax and take care of yourselves today. Love you guys and that sweet baby. Hugs and prayers.

Jenny said...

Alex and I just read your detailed report. Thank you so much for the updates. We're thinking of you with love and concern, and wish you continued strength and courage. You are both amazing!

Mrs. Cinnamon said...

Wow! I cannot imagine how intense that meeting must have felt like. I just read this post twice and truly feel for you. May you find strength through knowledge. Love you all.