Sunday Update

Annie is keeping us on our toes. Last night was a little scary with a seizure that Annie really struggled with. Her oxygen saturations got down into the 40s, and stayed there even after her seizure stopped. They put her on oxygen and she required 3 liters for her saturation to recover. The good news is that she was able to come off the oxygen several hours later and is now back to 100% O2 sats. Now that Annie has her GJ tube, we can put her seizure meds straight into her intestines, so hopefully those will get absorbed better and the seizures will start to decrease.

Last night she collected another 300-400cc from her gastric suction. We can't figure out why she is producing such volume, especially because it seems to only be at night. She continues to be connected to the g-tube suction today.

Annie got her PICC line last night and her previous midline IV removed. She's receiving all her nutrition from the TPN through that IV now. The PICC line is kinking in her arm when she lays a certain way, so she might need to have the PICC adjusted, but that shouldn't be too big of an issue.

Pressure sores have started to become a problem, which usually happen with long hospitalizations, despite our best efforts. So today she received a special bed that will help, along with some special pillows and cushions. Today she has felt better being up in her wheelchair and getting a break from laying down.

We've started giving her pedialyte straight into her intestines through the J tube today. She's only getting 5cc/hr right now to see how she tolerates it. If she does well, we'll start increasing that rate and then eventually we'll gradually transition to formula through her J tube. She has not been retching or vomiting as much today, so we are keeping our fingers crossed that her GI tract "wakes up" and starts working as it should. Once we see that her J tube feedings are working then we'll start the process all over again to gradually try to feed her through the G tube directly into her stomach and hope she can tolerate that.

Annie continues to receive her IV antibiotics and we'll check her white blood count again tomorrow to see if things are improving. She seems to be feeling a little bit better this afternoon, so maybe the antibiotics are working and there aren't any other problems. Only time will tell.

We really appreciate all the prayers, dinners, visitors, texts, and phone calls! Thank you so much for thinking about us!


This is Annie's new GJ tube--installed in the same stoma or hole where her G tube was.  The G port is shown connected to her gastric suction, working to empty out her stomach. The J port bypasses her stomach and goes directly into her small intestines where we're now delivering her seizure meds and starting a slow pedialyte feed by pump.

This is Annie's new PICC line that was placed last night. This picture doesn't show anything hooked up to it yet, but she's now getting all her nutrition and most of her meds through this line.

Lexie enjoys visiting Annie each day, and not just because she gets to play video games up here. One of the hardest jobs of special needs parenting is trying to maintain a sense of normalcy for our other kids. Their worlds continue on at school and with friends. They're pretty used to hospitalizations, but it gets worrisome for them too at times.

Life continues on, even with a sister in the hospital, so here is a picture of Molly at her first big marching band performance! (She's in the middle.) My sweet friend took this picture for me. We felt bad we couldn't be there to watch Molly perform, but high school football games are broadcast on TV here, so we watched her half time show on TV at the hospital. The only problem was that the band was just in the background as they interviewed different players and coaches during half time. So we didn't get to see much of the show and never could find Molly on the field. I can't wait to see her show in person!