Results of This Morning's Esophagram to Test for Leaks around the Stent

Ok so, test results are in and here's the scoop. Audrey and I are here at Primary Children's Medical Center through Wednesday at the earliest, possibly through Friday. Her esophageal stent is not keeping a perfect seal but is still doing more good than harm, so they will leave it in and give her a picc line and TPN (intravenous nutrition instead of just fluids like she's been getting). Her oxygen also keeps dipping below 90% in her sleep do she is on that too when she sleeps. 

Dr Skarda might take it out Wednesday or might wait as late as Friday to remove the stent. During that time we will receive high dose PPI as well as continued antibiotics to prevent acid reflux and infection in the space outside her esophagus. Sorry for all the medical jargon, I know some of you are used to it so I throw it on here. Basically her stent lets a little bit of stuff go around it when there's a lot going down her throat at once so it's not safe for her to drink or eat, but it's still holding the leak closed as long as it's just her saliva she's swallowing, plus out helps keep the right part of her throat open so they will leave it in. 

She will have a minor operation today to get a deep intravenous line called a "picc" through which she will receive specialized food deep into her largest veins. We suspect that her Prevacid has quit working for her body for some reason, causing a lot of avid reflux that has caused the damage and strictures we've been dealing with these past few weeks. They will give her a strong medication to prevent stomach acid via her IV, and when we finally go home we will try a new medication to prevent stomach acid and see if that makes a big difference. 

Ok here's the part where people are always asking what we need and I'm embarrassed to ask so much of our sweet friends AGAIN--forgive me but I'm going to be forthright with this, I wish so much that we weren't seemingly so constantly in a position of needing help through this challenge, but we really just stand in need of a few very specific things and I hope you can help. I need to organize afternoon rides for the children from school (and to of possible) and childcare for Gideon for the first couple of days this week and possibly the entire week, and dinners would help Justin a ton as he will be working until 6 in order to get the kids off to school in the morning. A further complication, or potential simplifying factor, is the impending federal government shutdown on October 1st, which is looking very likely-- meaning Justin will be laid off on Wednesday for an uncertain period of time, potentially weeks to months, until a budget agreement is reached. If that happens we will only need the extra help this Monday and Tuesday until he becomes Mr Mom for a couple of days till I come home. 

I would love to see visitors if anyone lives nearby or wants to make the drive. I still have no change of clothes, but at the latest Justin should be able to bring me some things Sunday night. It was fun visiting our primary nurses in the NICU today and using Skype to attend an awesome art gallery event for kids with my family. Looks like I'll have time to write that lullaby for Audrey with the music therapist and watch the Dr Who episodes I've been looking forward to, woo hoo for that! The hardest part will be hiding from my baby girl whenever I need to eat and telling her no when she asks for a drink of water, and keeping her happily occupied as she will need to spend most of her days in her crib, poor little thing. We can do this, we've done it before and its going to be ok. At minimum we just need rides for the children home from school once a day, their schools are near one another. Like the good old Beatles sing, "I'll get by with a little help from my friends." Thank you again for all of your love and prayers!!!