It's been a long day.
Eli's new nutritionist called. She has been working with Eli's Geneticist/Mito doc, as well a specialized GI. They have been discussing all of Eli's blood sugar and feeding issues. They are concerned that he's impacted and are ordering a KUB. Then they are wanting to work out a plan for dealing with bowel issues. Next they are wanting to increase his fluids by another 80ml's a day because of the increased calories from the cornstarch. Right now Eli's free water is at 273ml's a day, and that's on top of his 975ml's of elecare a day. So if we add another 80 ml's that's 353ml's of water for a total of 1328 ml's a day of fluid. That's 44.26 oz a day. Mind you I would need to do the 353 ml's of free water during 4 hrs off the pump. She's taking away his 1/2 hr extra off the pump and putting it back to calories. That's the end of the line. The 4 hrs he's off the pump (2 in the morning and 2 in the evening) are required to get medication done that can't be during a feed. After his surgery they have also decided that they want to change his formula. They want him on a more complete protein formula. She wants to switch him over to peptamen jr w/fiber. Apparently this is normally only used for G tube feedings but they think by adding in the fiber it will be a good fit for Eli's J tube. This change will be made very slowly over time. We will still need to add in the extra salts, iron, vitamins, and cornstarch. We are overwhelmed with all of the changes and concerned on how his system will handle this much drastic change. Working with a J tube, and a system of sensitive as Eli's changes this large can be catastrophic. In the next few weeks they will be running alot of lab work and preparing a full detailed plan. In the mean time we will again work to increase his fluids, but we seem to be pretty close to our peak.
Eli's been pretty good. He's been busy during the day practicing alot with his walker. He's also been working alot on his signing. He's learned how to sign "help" and now uses it for everything! He's been pretty exhausted making for a decent bit of O2 sat drops during nights and naps so the O2 has been very helpful during those times.
Emily is preparing for her all district 5th grade honor choir concert at the end of the week. She's super excited! She's been going thru a little bit of a struggle, working to figure out who SHE is and what SHE thinks and feels. We are confident she will figure it all out!
Jace has been busy as always outdoors. He spends as much time as possible outside with his friends!
Benjamin has been a disaster. He stole an Ipod from one of his classmates, and then his teacher caught him with some stolen items in his desk today. He's back to swiping everything and nothing anyone is saying/doing is making any difference. He's currently grounded from all electronics and that's a rough one for him. We are hoping to get our point across!
Ariana is preparing for her 5th bday! She's having her birthday party this weekend and is planning what colored sprinkles she wants for her cupcakes. She's still loving school. She's currently dancing around the living room to pandora!
Ari had her appt with the renal clinic last week. They did some testing and asked her alot of questions. They have determined that she has an overactive bladder and that it is causing alot of her issues. They are going to try her on a medication to help lessen some of the impulses and urges that her bladder is constantly sending. They will recheck in 3 months and if no change they will begin deeper testing!
As a family we have spent the last 2 sundays checking out a new church in our area, Shawnee Mission UU church. We have LOVED it! We all have really enjoyed the services and classes and have met some really neat people. We all enjoy the openness and accepting atmosphere and are excited to go back next week!
I will update more in the next few days as we get more information and test dates and results!