Lydia Update

We followed up with Lydia’s Neurologist, Dr. Krueger, in the Tuberous Sclerosis Clinic at Cincinnati Children's on Wednesday.

What a difference a week makes! The last visit was very melancholy. Lydia slept the whole time, and based on the decline she has had over the last six months, we were not at all encouraged by the opinions we received from him and Dr. Taylor, the vascular neurologist.

Over the last week, Lydia has been doing much better. She has not been in nearly as much pain and the vomiting, while not completely absent, has also been less frequent. We think the Methadone has reached a therapeutic level that has caused the pain to be under much better control. We have taken her out to eat, to Kings Island, and to the park, all of which was well tolerated by her.

Today was an 180 degree difference from last week’s visit. Lydia was awake, grabbing at my drink, and demonstrating how her normal baseline presents itself. Dr. Krueger was really impressed with how she looked and behaved. He could clearly see that she still has a quality of life that we should strive to maintain as long as we can.

He read Dr. Flint’s note from Monday (she is the Pain & Palliative Care doctor) and he concurred with her that there are several more things we should be trying to do.

1. He is going to try to move up her Gastro appointment (scheduled for August) to determine whether she needs a GJ tube instead of a regular gastro feeding tube. Her feeds would go directly into the jejunum and would probably reduce the vomiting by bypassing the stomach.

2. He is going to perform the additional imaging that CHKD in Norfolk was not able to do in order to get a better look at her brain aneurysm. This will either be a MRA (angiogram) or CT angiogram. He will consult with the neurological radiologist to determine which will be more appropriate.

3. He is referring her to the Cranial Facial Clinic to determine why the top of her skull is growing at such an alarming rate and to see if anything can be done about it.

Bottom line is that while we know she is in a state of decline, we are hopeful that there are some things that we can do to preserve somewhat of a quality of life for her for whatever time that God sees fit to give her. The prognosis of a shortened lifespan for her has not and will not change, unfortunately. But instead of standing pat and doing nothing, Cincinnati Children’s is at least helping us fight for her so that if she ever does pass, Amy and I can have peace that we did everything humanly possible to help her.

She will also see Opthamology, Cardiology, and Pulmonology while she is here, so we definitely anticipate being in Cincinnati for a while longer. We are grateful that Ronald McDonald House is giving us a place to stay as long as we need it and my two employers - Operation Blessing & Freda H. Gordon Hospice - are allowing me to work remotely while we try to get answers for Lydia. I am very thankful for the support that both OB & FHG have provided during this trying time.

Thank you to all who have prayed and to all who have donated to “the cause” while we are away from home. This is one of many ways that God has manifested himself to us. We couldn’t do this without you.

God bless you all!