New Site!

Welcome to our new site! I decided to move websites because it was too cumbersome to make changes to the old web application that I hosted with another company for the last year. The application was extremely slow and it took way too long just to post one update or a link to pictures. I think that contributed to my procrastination of writing updates more than anything! This site will be much easier to update and I can keep everyone up to date more often. Shorter updates, more frequently! :0) Plus, its a new era since clearing the hurdle of his first birthday and time to start fresh. People will also be able to make comments directly to the postings, rather than the guestbook. You'll see a few postings for June and July which will bring us up to date.

A Rough Week:
We've had an eventful week - Lucas gave us a pretty good scare. Last week he started throwing up on Wednesday, and at 4 am Friday morning it started again, repeatedly, and he dry-heaved for a couple of hours. It was so sad to see him so weak. We waited it out into the morning, but he continued for several hours. He couldn't keep anything down. Since he wasn't running a fever and this had gone on for two days, we were worried it was a shunt malfunction. This is one of the signs that the shunt is clogged or broken, when the fluid builds back up inside the brain. Also, his left eye was dropping a lot (possibly "sunsetting" due to fluid build-up, we thought). We called our pediatrician and the neuro department to give them the symptoms, and both advised us to bring him into the ER for a CT scan. So, there we were again Friday afternoon at Children's Hospital ER. Ugh.

Interestingly, we learned that due to Lucas's condition, he is given priority in the ER. I never knew that before. As soon as we checked in and talked to the admissions nurse, they called to the back, said "Level 2", and within two minutes we were back in an exam room ahead of everyone in the lobby, and 10 minutes later we were upstairs in radiology getting a CT scan on his head and 5 x-rays of his head, chest, and abdomen. It was kind of a nice priveledge to move quickly considering how long it takes to get through any ER, and also helped relieve very nervous parents... but this is definitely not a "club" I want to belong to. We also ran into our GI specialist on our way to radiology, who stopped to find out what we were doing there. When we told her we thought he had a malfunction, she ran her hands through his hair so caringly and looked in his eyes, and said, "Awh, I'm so sorry, call me if you need me for anything, I'm here all day." Bran and I thought that was so sweet. If you knew how HUGE Children's National Medical Center is and how many children go there, you'd understand why we are always touched when someone recognizes us or extends a caring gesture.

The good news... the CT and x-rays came back looking good! Such a relief to hear that! The chest x-rays were to look at the shunt tubing that goes down to his abdomen, but they were also looking for early signs of pnemonia because Lucas had developed a bit of a cough. But, they cleared us on both of those things. Our neurosurgeon did say there was some questionable buildup on the right side that we will need to watch. She said it was possible for a malfunction and we should keep an eye on him the next couple days, but he didn't seem to show all the other symptoms of a malfunction. She thought his eye drifting was due more to extreme fatigue than CSF pressure, and that if he had a malfunction he would probably show signs of being in more pain. She thinks the increase on the right is just fluid shifting from left to right after the surgery in March, because the left side has now completely drained and is considered "normal brain" (how 'bout that?!)... but the right side is now a bigger pocket of fluid since March. Hopefully it is just shifting. We'll do another CT scan in 2 months.

They sent us home saying it was a virus. He had a good day Saturday, but a rough one Sunday, threw up again and wouldn't eat all day. Then on Monday morning, threw up both feeds. I called the pediatrician again to find out what I could do to get more fluids in him, because when Lucas wouldn't drink anything I was force feeding him Pedialite per the ER doctor's orders through a syringe (not fun). They immediately said "this does not sound like a virus... call neuro again!" Ehhhh. So, it sent us back into panic mode (or me into panic mode...Bran is always the optimist) since they didn't rule out the malfunction 100%. This launched a series of calls to neurosurgery who was teetering on bringing him into the ER again. But, I also got ahold of his GI doctor after this (the one from the hallway), who said "yes, I believe this is all due to a virus" (starting with acute gastroenteritis)... but due to his GI history, his stomach was probably having a delayed reaction to the virus which is also making his reflux flare up significantly. The increased acid would explain Lucas's pain and tears. I felt sooo much better after talking to her. She said this could go on for 2-4 weeks and could give him a prescription to speed up stomach emptying if it remained a problem. *Note: this is exactly why I'm happy we are dialed into the specialists instead of just a pediatrician!

We decided to wait it out for a day and feed him very small amounts, more often, before heading in to see the nuerosurgeon again (we didn't want another CT scan due to radiation unless it was absolutely necessary). This seemed to work! He's kept everything down since Tuesday and he's very clearly feeling better. Thank GOD it wasn't the shunt! I was so happy to cancel our appointment with her a couple days later. I cringe at the thought of putting him through another surgery. I know it will probably happen one day, but I'm not ready for it right now.

Other than that, things are very good. Lucas remains smiling through it all. He is SOOOO happy! I'm amazed at his constant joyful state. Even in the ER, after an entire day of keeping nothing down, he smiled at doctors when they talked to him! He's such an amazing kid and we are so, so lucky!