I took Judah to the opthamologist today for a follow up on some findings from his last EUA which was in February. At that time, the glaucoma surgeon saw some swelling on his optic nerve and suspected intracranial pressure, although unsure whether the swelling was more attributable to the surgery. So, he recommended that we follow up with Judah's opthamologist.
We did so today, and she saw swelling on both of his eyes, confirming Dr. Congdon's findings. She suggested we contact Judah's neurologist to see how she wanted to proceed.
After being in touch with Judah's neurologist, Dr. Comi, it has been decided that Judah will be admitted to the ER tomorrow morning (Thursday) in order to have a head CT Scan done as soon as possible. Following that, he will have an eye exam and a thorough neurological evaluation. If warranted, Judah will be admitted to the hospital in order to have an MRI and possibly a lumbar puncture done on Friday. If the MRI can't be scheduled until next week and it looks like there is no emergent medical need otherwise, we will be sent home until next week when we can get the MRI and lumbar puncture.
Speaking with Dr. Comi this afternoon, she indicated that she cannot speak to the cause of the swelling around his optic nerve for certain until she sees the results from the tests and therefore cannot predict what sort of intervention may be necessary if any. She also said she's never seen this manifest in such a way in SWS patients. She is not certain the swelling is even associated with the SWS and wants to be sure she does not overlook something else that could be going on with Judah, unrelated to his SWS.
While this news is unexpected and causing us to act quickly, we are seeking to be grateful and humbly respond to this new development, knowing that this does not catch God by surprise. We're seeking to affirm the truths of which we've been reminding friends of ours recently who are going through their own set of perplexing and trying circumstances. It's as Lawrence said to me today, "We're not in a sprint with Judah; we're in a long distance run of endurance." So, I'm looking at this as a little bump in the road, and choosing for now and hopefully in a sustained way, to give thanks for the amazing mercy God has shown to us thus far in regards to Judah's health and his care.
We are going to Hopkins where he is so well cared for by many well trained, knowledgable and caring professionals who we see as a major means of grace in our lives. We are calling out for prayer and trust that God hears the cries of His people and sends mercy and grace from Heaven. We are trying to keep perspective, and not "borrow trouble from tomorrow", as my friend Karen is fond of saying.
Judah has been doing wonderfully developmentally, and outwardly shows no signs that there is anything wrong internally. Nevertheless, we are following through with the recommendations given to us by his doctors, and trust God will bring to light what is wrong and how to make it right.
Please pray that:
- There will be no trouble with our insurance covering all the expenses we'll be accruing at hospital.
- Judah will fare well with anesthesia, all the poking and prodding and the potential hospital stay.
- Tucker will do well with his babysitter all day (Thank you, Heather, for being an amazing friend and servant to our family.) Tucker has been going through a really tough time lately with separation anxiety, so the thought of leaving him again and for this length of time is breaking my heart and presents its own temptation to fear for his precious, little heart.
- Judah will not have to be admitted to the hospital, but instead be able to do the MRI and lumbar puncture as an outpatient next week.
- Grace and strength to sustain us for whatever lies ahead.
- We will continue to trust God and shepherd our boys' hearts in a way that affirms God's truths.
- We will be a witness to the watching world of the amazing grace and love of our God.
There are probably other things that should be covered in prayer, but my brain is fried at the moment. I will try to keep this updated as much as possible. Thanks for loving us and praying for us.