Thursday, August 13, 2009

Newest Game Plan

This morning we were well on our way to getting closer to home as Danny tolerated his feeds of 10ml/hr of formula in his J port and some of his meds in the G port with no wretching or diarrhea over night. Woohoo! Danny was smiling, awake, and alert this morning it was such a nice sight to see. We decided during rounds this morning to increase his feeding to 15ml and we added back 2 more meds orally from IV form. Yesterday he did have 3 dirty diapers but no blow outs.... today he had 3 dirty diapers with one BIG BLOW out. With all the stooling Danny has been doing the last 2 days and the fact he is doing them all on his own without any assistance the docs are still thinking his GI system isn't reacting properly, UGH! His blow out diaper happened when I was down getting some lunch, sorry Lisa n Monica....Thanks for cleaning the mess. So I threw in the towel after the 3rd dirty diaper this afternoon. I'm inpatient now! So we chatted with Dr John, Danny's Palliative Dr, and we came up with the NEWEST PLAN. We are going to hold his feeds were they are, which is back down to 10ml/hr to just keep things running into his system in hopes it will kick start it back up, keep on all the TPN n Lipids, and GO HOME. This is no quality of life sitting in the hospital day after day running the same circles around n around......Try to feed him, wretching n diarrhea, Danny gets bloated, Danny's on gut rest, and then restart feeds. So we are going to go home, not transferred to another hospital, Home to spend some much needed family time together. Then after giving Danny's body a break for awhile we can attempt to restart the feeding process once again. So today I have been watching and participating in the IV cares and processes. I believe we are going to be released on Monday so a few more days left for me to learn what needs to be done once we get home. Plus they don't like to discharge Friday - Sunday, but I well see. Today marks the 7th week here at Children's in Milwaukee so I think I've been patient enough with all of this. Wish us luck that nothing new rears it's ugly head while we are waiting to go. The doctor did notice on the latest xray that catheter to the Intrathecal Baclofen Pump continues to slide down ~ ok STOP looking for things!!! It is really close to nearing the end of the we are now going to keep on the oral baclofen instead of just upping his pump cuz if the catheter should slide out of his spine he can go through serious withdrawal. So much for the ITB pump system to last approx 5-7 years, we haven't even made 3 years yet. They want me to bring Danny in for xrays once a month to keep an eye on where it's located. With him pretty much laying in bed while we've been here it's dropped 1.5 disks so I wonder how fast it will slip once home and repositioning and moving him around much more. If it should fall much more we will need to have the catheter repositioned, WTF! Another reason to wonder about staying on the TPN n Lipids for awhile.....more surgeries lurking in Danny's future. I'm so very SAD! As if Danny's life wasn't hard enough but to be dealing with all of this crap, OMG I'm going NUTS just knowing what my lil man has been dealing with, is still going through, and needs to have done to him yet. sigh

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