Tuesday, September 12, 2006

EUA Results

Thank you to all who prayed for us yesterday. We arrived at Hopkins by 6 a.m. and amazingly were home by 10:30. Really, for non-hospital goers, this is a 'quick' trip to the hospital, especially considering Judah was put under while there!

Judah did great w/ anesthesia apart from waking up in the middle of the night last night with some choking cough that was making it difficult for him to breathe. I'm not sure what precipitated it, but he usually has irritation in his throat after he's been under anesthesia and especially when he has a cold or has just gotten over a cold, which was the case yesterday. Nevertheless, after two different asthma meds. given through the nebulizer and a half hour of watching him sleep in our bed, Judah was calmed down enough to go back to his bed for the rest of the night. He seems to be doing much better today.

The doctor who performed the EUA yesterday was new to Judah's case. He had never seen Judah prior to yesterday, and there was some confusion as to his findings during his exam. Dr. Jampel, our new glaucoma doctor, saw swelling on Judah's optic nerves. We explained that swelling on the optic nerve is what precipitated Judah's brain surgery back in May. Dr. Jampel, not having anything to compare with, wondered if the swelling he saw is actually improvement from the swelling months ago, or if it's an indicator of increased Intracranial pressure meaning the shunt may be malfunctioning or not set properly, or if it's an indicator of something strictly involving Judah's eyes.

So, we left under a cloud of confusion and not knowing whether his findings were something that needed further testing or not. That leaves me on the phone or otherwise trying to communicate with three of Judah's doctors. Anyone ever try to reach a doctor directly over the phone? Not so easy. Try reaching three and then getting them to communicate to each other! :)

Otherwise, Dr. Jampel was comfortable with what he saw regarding Judah's pressures and said there were no signs of damage to the optic nerve and therefore, no need for surgery at this time. That was good news!

We are trying to grow comfortable with the fact that things with Judah will to some degree always be under a cloud of confusion. Sturge Weber Syndrome is a complicated thing, involving many systems of the body and therefore many specialists poking, prodding, assessing, diagnosing and treating. Even though we see some of the best doctors in the nation at Hopkins, their knowledge is still limited, and much is still unknown about SWS.

I am easily tempted to be overwhelmed by the weight of managing Judah's care at times, and this for a child who for all intents and purposes appears to be doing rather well. In the face of this temptation, though, I am given an opportunity to again and again look to Judah's Creator, affirm that Judah was fearfully and wonderfully made by His loving hands, and trust that what is impossible for man is possible for God. I am given the opportunity to pray and depend and trust and wait and see God reveal His power and glory as He works out His good plan for my son and for me and my family.

And, I know I am not alone. I am too well acquainted with others, like my dear friend, Emily, mom to sweet Livi, who also faces these same temptations but also the same opportunities to lean hard on God's truths. It is not what we would choose, but we do know it is what God will use for our good and His glory. And, we're trying to draw comfort and strength from that knowledge.

Thanks for your prayers on our behalf to this end.


peg said...

I'm praying for you, Bri, and for all of you. Miss you, my friend.

We're coming down the end of Sept and hope to see you then!

Anonymous said...

Yes, I truly understand what you are experiencing. I feel so sorry for the patients, when they can't get a straight answer from a physician because they are hedging or most likely, don't have all the pertinent facts and won't hazaard a guess. Again we rejoice in hope, are patient in tribulation, and pray constantly. We are doing the same for you all. At least he tolerated the procedure well and that is always a blessing. Love you all, Gigi

Anonymous said...

Oh, how we hang on these doctor's words...and yet, sometimes they some unclear and at best, confused. Yet we do have our great Physician, and He is tenderly providing for us all. Yes, this is unbelieveable, and you have been dealing it with it longer than we have. The temptations to doubt, bitterness, questioning, etc. occur all too frequently. Taking the thoughts captive is exhausting, yet His mercy is sufficient in great weakness. Each day, crisis, etc. is a new chance for doubt/faith, and the battle is ensued. It is exhausting, yet we KNOW God is good, as you so eloquently said, so we pray, hope and trust. God will see us through...He loves these little ones more than we do. AMEN. Gigi