Surgery again tomorrow

Joshua went to his first follow up appointment at the Egleston GI clinic last Friday.  It is an all day event to get our crew packed up and to Atlanta.  Joshua had a diaper blow out on the last stretch of I-85 so we were hurriedly trying to change him while we waited for the doctor.  The follow up appointments are called "clinics" where you see multiple specialists that work together on Joshua's case in rapid succession.  We were visited by the nurse coordinator, nutritionist, surgeon, gastroenterologist, developmental specialist, and ended with the nurse summarizing the events of the hour.  The immediate outcome is that Joshua will have surgery tomorrow morning to implant the broviac central line and remove the PICC line from his arm.  The broviac is a more stable IV for long term use and we will be relieved once it is in place. 

We got the call from Egleston today letting us know to have Joshua on the 3rd floor for surgery at 7 am tomorrow.   Ouch!  It is going to be a rough start to the day since we will have to start getting ready around 4 to make it there on time.  Thankfully the surgery does not require an overnight stay so we are expecting to be released by lunch time.  It will be good to have this (please God let it be the last) surgery behind us. It is a very minor procedure compared to what Joshua has already been through and I am sure it will go well, I'm just ready for it to be over.

The GI specialist confirmed the histology report from Joshua's biopsy suggests a mild inflammatory response consistent with milk protein allergy.  So I will be going the non dairy route for a little while.  Luckily, the allergy seems to be rather mild and the doctor described it as being more of a nuisance than anything.  He also approved me using a little bit of my stored milk to supplement what I'm pumping daily so that really takes some pressure off of me.  The doctor suggested we could try a different formula, Alimentum, that is supposed to be sweeter than the Elecare he can currently have.  And I get to attempt to mix in a few nursing sessions, too!  I am not sure how these will go, Joshua has not had much practice and strongly prefers the bottle.  We will have to take it slow and see how it goes.

Now on to the home nursing saga.  We have been less than pleased with the home healthcare nurse we were originally assigned.  She was hours late on Joshua's first day at home, didn't follow CHOA protocol, and was just generally sloppy.  Well she took things to a whole new level last week when she not only didn't show up at all one day, but also lied through her teeth to me when she was giving me her "reason" for not coming.  She claimed there was a wreck on 316 that had shut down a mile of road and she pretended to be speaking to a cop while I was on the phone with her.  Wrecks and road closings are pretty easy to verify and a quick check of the DOT website confirmed there was not a single accident anywhere on 316.  Because she didn't show up, Joshua did not have his PICC line dressing changed or have labs drawn on time.  I was on the phone with the home healthcare company when they opened the next morning letting them know I never wanted to see this particular nurse again.  We were quickly assigned a new nurse that also works at Egleston and we are very happy with her so far.  

At this point Joshua is 40% towards the ultimate goal of being off his IV fluids.  At the next GI appointment in February we are hoping to have the amount of hours he is on the fluids lowered.  He is still off for only 5 hours a day and 6 or 7 hours would be awesome.

Please keep Joshua in your thoughts and prayers tomorrow morning as he undergoes his next surgery.  Thank you for your continued support of our family!!

Joshua laying on the quilt his Great Grandmother Martz made for him

Joshua on a car ride with his new sunglasses.  Josh & Dad sit in the car while Mom runs errands.