Quick update...

This quick update turned into a longer one...it happens when there is a lot going on with Bruce! I may have temporarily lost my wittiness and my stress level within the hospital is at an all-time peak. I have my fair share of rope burns from hanging on to the end of my rope but the good news is that I'm still hanging on...So have no fear, you will not see me belly flopping off the construction crane next to CMH on the 10 o'clock news.

Ok, so the abscess from the bacterial infection in his brain is regressing. Great news! Bad news? His cerebrospinal fluid is increasing in his brain ventricles because some residual sediment from the infection that won't allow the fluid to reabsorb, as it should. Did you know that a baby can produce up to 700 ml of cerebrospinal fluid in one day? Our bodies make it and reabsorb it constantly but Bruce's body is having fits. No big surprise there. Pressure is building in his head and causing him to have a serious headache; yesterday, the docs did a lumbar puncture to help relieve some of that pressure. They took out 12 ml from his lower spinal column but so far today, little man is still pretty sore and fussy.

Tomorrow, neurosurgery is going to place a reservoir in his brain to be able to aspirate some of the fluid as needed when he gets too much in his system. Eventually, Bruce will "more than 98% sure" (words from the docs themselves) need a brain shunt to help him long term absorb the fluid that isn't absorbed. One major concern with that is infection and Bruce has had more than he needs of that so everyone is extra cautious as when to do the shunt placement. Infectious Diseases has given the go ahead but each neurosurgeon is different and ours would like to wait longer til he feels Bruce is ready...I'm on board with him. So, we do the Ommaya Reservoir in the meantime. Which is not a vacation spot in South Africa, aunt Kacie...

Bruce had another EEG this afternoon which he and momma slept through. Those rooms are too dark and too quiet, which again proves Musgroves can sleep anywhere...The reason for the EEG is that the docs suspect a little more than usual seizure activity going on in his head, which is more than likely from the increased pressure. They've already increased his medication but this will give insight as to what's going on in there for sure.

On the Pompe side, Bruce got his Port-a-cath on Monday and did just fine during the procedure. He is probably one of the littlest guys to ever to receive this appliance...we haven't heard the officials say that he is but there are hospital rumours that he just may be. The port is titanium and is just under his skin on his right chest and is what the enzyme replacement treatments will be administered through every other week. As he grows, Bruce will need different ports but they should last a couple years...hopefully. So as his growth spurts come, he'll get longer jeans and new ports!

We're hanging in there. I could mope and groan and complain but truly, it could be worse. I have to find the humour in all of it and thanks to my sister, I now also think of 'Ommaya Reservoir' as some distant, turbulent war-torn province that is always on CNN news. Bruce has gone through more than a lot of 80 year olds sitting in a nursing home and the kid complains far less than any of them. I'm proud of our little boy but I can't wait til all of this is a (MORE THAN A FEW) page in the baby book!

***Update to the update.....literally within the minute I posted this blog, our neurosurgeon came into the room to discuss tomorrow's plan. Bruce IS getting his shunt at 7:30 am and NOT the reservoir. Lots of risks to consider but he feels the benefits will be better for our little guy...and so once again, we signed another surgery consent form....