Back at Vandy

Dear Friends,

I'm just now getting a chance to write you all & update + ask for prayer. Ava Gray is back at Vanderbilt for what we hope is an incredibly short stay. This past week there have been a lot of changes for Ava Gray (in medication & feeds), so when she started having some more trouble with feeds (throwing up), I took note of it, but was satisfied to just keep an eye on things. Same with her increasing fussiness and agitation. But the night before last both got a lot worse. She was having a great deal of trouble with her feeds, and was obviously really uncomfortable for long stretches of the day/night. Consoling her became difficult, then impossible. When her fontanel (soft spot) started to bulge out a little (not. a. good. sign.), I measured her head circumference, and it was up a full centimeter from the week before. (Also. not. a. good. sign) I waited it out till morning, but was already pretty sure we were going to have to come in. Around 6am we contacted her doctor, who confirmed that we needed to bring her in to the ER. She was given excellent care, and they ran a full "shunt series" on her (Labs, MRI, X-ray's and a tap of her shunt). Then they admitted her for the night to keep a close eye on her & to figure this out.

Although some lab results are still pending, we're pretty sure there's no issue of infection or virus. The MRI & x-rays showed the shunt is still in the correct place, and should be working. The tap of her shunt, however, showed elevated pressure in her brain (usual ICP or intracranial pressure is 5, and hers was up to 15). It was not alarming as it was still under 20, but is definitely a sign that there is an issue going on with the shunt.

The docs plan:

They gave her an injection of TPA (tissue plasminogen activator for those that care to know) into her ventricles. This will hopefully "blow out" any clots that have formed along her shunt and break them up so they will not cause her any harm. This method is considered to be both a treatment and a preventative measure. They have often experienced great success with this. (They say that it is fairly common for clots to form at the end of these VA shunts as they are in a "blood rich" environment).

Although is was a rough day for her (lots of uncomfortable tests and pokings & proddings), she is definitely resting really well right now. Her fontanel is still bulging a bit, though not as much as before. They plan to tap the shunt again tomorrow morning and depending on the results, she will either spend another night in the PICCU, or (if there is marked improvement) we can go to a regular hospital room for the next day/night.

I have been blessed with dear friends who helped us get to the hospital, have brought much needed stuff from home, and who have been helping out with the care of both girls throughout our stay already. (Thank you dear friends). We've also had God answer the prayer we prayed en route to the hospital for wise and compassionate nursing care for Ava Gray (our nurse this evening has been WON-der-ful & clearly delights in Ava Gray).

We are still praying for Ava Gray's speedy recovery back to normal, that God would bring Ava Gray to a place of complete health (disease-free!), that I would get some rest, and that God would draw our hearts even nearer to Him. It is such a sweet place to be: near Him.

If you want to, you can pray for us too!

Okay, I'm going to go rest again. (I just found this computer lab on the way back to our sleep room where Havyn & I + friend are staying the night & thought I'd grab the chance to let you all know what is going on)

Love to you all,

Jules & the Girls

PS. I saw a shirt the other day that made me laugh. Here's what was written on it: "Hydrocephalus. It is brain surgery!" Ha. : ) Hopefully no brain surgery this time. Nite all!