Long update....feel free to skip and skim while reading. Some like to read word for word. Some like the jist of it and some are thinking, quit writing so much! Having trouble with my words tonight. So here it goes! To give you the skinny...Roma has sepsis. Sepsis is a serious condition for older people and for people with organ failure. It is caused by a bacteria (in her case staph) and it spreads infection throughout the bloodstream quickly. She is being treated with potent iv antibiotics during dialysis for 6 weeks. The bacteria is from her dialysis catheter which has since been removed. Roma is making progress since discharge, but not making the progress we would like to see. She still has back pain which is consistent with bacterial infection, eating has become difficult due to lack of appetite and she is very tired. Her body hurts. The docs believe the bacteria isnt growing, that her recovery is going fairly normal except the back pain. They have to make sure the bacteria is not clustering in her spine. I think tomorrow she will go for a CT scan. The docs say that she should feel a lot better by Tuesday which will be 8 doses of iv antibiotics. There are many upcoming doc appointments for various things. Liver biopsy is postponed until at least the 27th which pushes back the transplant decision and the infection pushes back transplant surgery for 6 months. Of course, those are reasonable things, but its hard to have a set back. Hard for roma, hard for us. Hard for her brothers. Lucas saw the worst of it and he was worried. However, I can tell you this my daughter hardly complains. Hardly. So by the time she does its usually pretty serious. She is like her Dad that way not her mom! She was treated for h1n1 first, was admitted twice, she had a fever of 105.7, she waited 6 hours for port removal surgery that was making her sicker and sicker, but there was only ONE surgeon, she had a bad IV. So she had to have a 2nd one put in, there was a dementia patient next to her who was very very agitated in the middle of the night and yelling at the top of his lungs, a newer shy nurse who was struggling a tad and was neurotic about everything. Had dialysis for 3 hours with 105.7 temp during that time. Shaking uncontrollably. Roma barely complained, tho she did throw the ice bag that the nurse stuck under her neck when she was asleep. Once she threw the ice bag I knew she was D.O.N.E. lol. It came flying out of nowhere and hit me. Lol. I was like, I think she doesnt want ice under her neck. It was a long 4 days. Roma has doesnt really remember parts of what went on. It was scary for everyone. I tried to pray. I couldnt focus. I read prayers people sent me. Over and over. I spent the first 17 hours alone with roma. I didnt want to worry ed and boys who were on the mountain. Plus I thought she had h1n1 so I didnt want anyone to come in case they got sick. So we are all in kind of recovery mode this week. Taking turns staying home taking care of roma. We have amazing friends and hands down the granato ugarte support for our little family is incredible. Thank you to everyone that prays, texts, visits, messages, meals etc. We hope we are on an upturn the next few days. Again, so proud of roma to muster her strength to fight everyday. #faithoverfear.
Posted on: Fri, 17 Jan 2014 07:12:44 +0000
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