To long since last update...

It has been a very long time since I have updated the carepages or the blog. I have mostly been updating in Facebook lately since I have been working with the Mini Buddy project.

Well in the last couple months Ellie had her Laryngeal Cleft fixed and has not gained any weight so we have had to have regular weight checks with our local peds office to follow her weight and growth. Her vomiting and digestion issues have not resolved despite the increased and changing meds. So here we go again with a new game plan for her. The newest game plan is the following:

Yesterday was a very long day. I met with the local peds team this morning to get the weight data for Ellie to take with me to the GI apt this afternoon. Then on the way to Baltimore I discovered I had forgotten the file with all her weights since April. Thanks to Celidah I was able to write down the dates, weights, and heights to give to the GI dr.

We compared her heights, weights, and the dates locally as compared with the John Hopkins weights. Both weights were consistent and showed she has grown normally yet has shown no weight increase at all since April. This shows no weight gain at all in 4 months and for the last 6 months a decrease.

The plan:

John Hopkins normally does not carry AMT G-Jets, yet they are special ordering her an AMT g-jet because we have far fewer staff, strep, and MRSA infections around her stoma site. She has grown taller yet skinnier so they are ordering her both a 1.7 and 1.5 G-Jet because the 1.7 is now to big for her.

Once the G-Jet has arrived she will be admitted. Her day will start in clinic with pH probe to see just how bad her reflux is. She will also have labs drawn and done at this point so she only needs to be stuck once (labs and iv placed at the same time) Then once a room is ready for her we will "officially" be admitted. After the pH probe is removed they will place the g-jet and then start with Pedialyte.

Once we know that Pedialyte is being tolerated through the new feeding tube we will be trialing a new elemental formula. Her GI dr wants to trial the new formula in the hospital due to her severe allergies in case she has a severe reaction where they can counter any reaction.

Finally, once we know she is tolerating the new formula they will slowly increase the rate until she is up the new and needed rate for the needed rate of flow and calories per hour to maintain growth and put on weight.

How long will she be admitted for at this point is unknown because it depends on how she reacts to the new feeding tube, the new formula, the results of the labs, the pH probe, and any additional tests deemed necessary while admitted.

So what is this new feeding tube she is getting and what does it do or look like?
http://www.amtinnovation.com/pdf/AMT_G-JET.pdf this gives really good information about the new feeding tube.