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Okay, so last Sunday Danny just up and decided he wasn't going to eat...at all. So Sunday and Monday he ate nothing...zip, zilch, nil, nada, NOTHIN! Monday afternoon the GI had us come in and said if he wasn't eating at all by Friday to come in and they would likely admit him for a 23 hour NG to get something in him. Well, I practically force fed the kid Tuesday morning...the whole you will NOT get up until you finish x amount of that thing. It took an hour to eat a bagel which is normally gone in less than 3 minutes and he asks for 2 more. o.O He would pick and choose all week eating only a few bites if he ate anything but he ate at least a little each day. From what I can tell he hasn't lost weight yet (which is a MIRACLE) but he is also outright refusing to drink his Peptamen Jr. I called the GI back again this morning to let them know that he was eating but not really much at all...they want us back in at 1:20 this afternoon. I don't know what the plan is but I am nervous. Sometimes it seems like it would just be easier to tube feed him but convenience is no reason to get any type of tube.
I am also just sick of his GI but there are no others in Knoxville or within 2 hours that are recommended. I called Cinci because the GI had contradicted several things I had been told by the Seattle SDS specialist group. Examples... According to the GI they don't really need to see Danny at all unless he has the gene for SDS and they won't do a biopsy unless their blood counts are odd and won't at all in SDS-like patients that don't have the gene. According to Seattle those statements are false. They want to see him ASAP and he needs a Hematologist/Oncologist and a bone marrow biopsy at least every year since he has Cyclic Neutropenia and Anemia (recorded) and suspected cyclic Thrombocytopenia (symptoms a year or so ago but no CBC's done in that time period). The only time they will space outj biopsies more than a year is if the SDS or SDS-like patient has had NO blood level abnormalities or if the patient is compromised by the biopsy procedure and then they will do them at LEAST every 2 years.
I don't like feeling like I have been flat out lied to. Theresa at Cinci called me on Tuesday while we were on our way to vacation and affirmed everything Seattle said and contradicted everything Danny's GI claimed that the Dr at Cinci said. I am truly at a loss with this GI. Cinci can thankfully do a referral from there and we got all that paperwork in this morning but I am just so frustrated with what to do here... He HAS to have a local doctor that knows what he is talking about...this he said she said that isn't accurate has to end.
*sigh* That is a lot longer than I anticipated it being but I had to get all that out...
Sooo...in regards to the lack of knowledge on SDS and the Cinci stuff I have nothing.... BUT...in regards to not eating we have a plan.
He has to go see a feeding therapist to see if this is a behavioral thing that they can get him over. If he stops urinating at least every 8 hours he has to go in to the GI immediately (if over the weekend we will call in and be admitted to the hospital). Most likely if either of those happens he will have an NG tube and IV to give him "food and water." If he gets worse or doesn't get better soon we will have to start preparing for a g or gj tube. I don't know what the difference is or which he will get if he needs one but either way the through the skin version is in our path if he doesn't start eating soon.
A G tube is a gastronomy tube. It goes into the stomach. A GJ tube is a gastrojejunal tube. It has two ports, one (the G port) goes into the stomach, the other (J port) goes into the intestines. I have never heard of a GI Dr starting with a GJ tube. Those are typically used for G tube feeding intolerance. Ava has a GJ and it's been a life saver. I'd imagine he'll get a peg tube (Gtube) first if he needed a permanent feeding tube. NG tubes are okay for short time frames (a couple months).
I agree with Cinci. Ava sees hem/onc is has her cbc done at the very least every 6 wks. If she's having problems, they're done weekly. Inpatient Drs will do daily ANC checks if she's neutropenic. Ava is SDS-like.
When you start going to cinci, they will refer you to their GI. They can manage a lot over phone/emails. ((Hugs))
He said gastronomy tube but I couldn't remember the word so it is G tube. We do monthly CBC's as ordered by his GI but it is like he wants to run the show. He would "consult" to see if/when he would need neupogen etc which is not a job for a GI. I am just glad that once we get to Cinci they can refer us even locally anywhere he needs to go. Cinci is starting record's requests today and will figure out what to do after the doc has time to review the info.