I have to vent

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In the past year he's been diagnosed with end stage pulmonary fibrosis and been transplanted. He's been diagnosed with liver disease and been listed for transplant (8/2/06) with a PELD score of 15 (only because of exception points being given twice). He's developed diabetes insipidus (a pituitary gland disorder) and developed steroid induced insulin dependant diabetes from the prednisone that he'll take for life. He's had a GJ tube place, 8 collapsed lungs, 12 chest tubes, 3 PICC lines placed, a bone marrow biopsy, 5 or 6 bronchoscopies, and 15 ERCP's. He's osteopenic, anemic, hypertensive, hypothyroid, has GERD, malabsorption, no motility, has VRE, and multi system candida infection, along with a question of having osteonecrosis. He's on 17 meds a day, which includes twice daily

injections and an insulin pump, and does not include his 20 hours per day TPN. I have little help from my husband, and have 2 other children (girls ages 12 and 13), so for all intents and purposes I'm on my own living at the Mc House 2 1/2 hours from home for the last 14 months. Wisconsin Medicaid (he's on SSI) will not pay for any home nursing care in Minnesota. was admitted to the hospital on Friday last week because of dehydration due to all the vomitting and diarrhea. They wanted to try to discharge him today or tomorrow, and I'm too exhausted to do it anymore. I just cannot. And he's too tired to care if he's in or if he's out. He's done nothing but sleep the past 5 days. I understand there's nothing else they can do for him being in the hospital. They'll adjust his TPN and give us bolus fluids to give him in

his line so he doesn't get dehydrated again. They're not giving him antibiotics. They're not going to do an ERCP because they WANT him to get sicker so he'll get his liver sooner. But I'm too tired. I'm worn out and exhausted and I can't do it by myself, and they just don't get that. So I had an emotional breakdown right in the middle of the hallway. And now they're not discussing discharge again until Monday. As if all of life will have changed by then. I want them to keep him in. They act like all of life will fall apart if they do. I understand they want him as sick as possible but without infection, but then they have to give me some help. And if that help means keeping him at the hospital, then do it. It's not as if I'm abandoning him there. I'm there all day long with him every single day and sleeping there many nights. And I'm still doing a lot of his stuff (shots, insulin pump

changes, helping with meds, etc, etc). I'm not trying to just dump my baby off on the hospital like so many of the kids I've seen there who don't have a parent set foot in the place until it's time to pick them up. And I don't know what to do. (Other than be jealous that got to go to Hawaii!!!!) Thank you for letting me whine and vent and be frustrated. And if anyone has any golden words of sage wisdom, please have at it!!! The ever exhausted Ami Fox the whiney Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced

Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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