Since Ive updated this blog. Like with my other blog I think its important that I continue to blog here because if anything I am able to track my own progress. I can read back through old posts and just see my knowledge grow, and sometimes laugh at myself for my "overreactiveness" to certain things and lack of understanding and knowledge of others. The truth is I was woefully unprepared to deal with all involved in Mari's care. How can one prepare anyway? I was about as prepared as I would have been had I given birth to her. I was someone who wanted a child and had the love in my heart, its that love and commitment to my child that has gotten me through. We go through so much everyday and learn all the time. Its always something new with her, just when we think we've got things figured out everything changes.
Since my last update we've had one hospitalization, for Gingivistomatitis(herpes simplex 1). It was a frustrating experience as they really had no idea what was wrong with her. She had high fevers and negative blood cultures but as long as she had a fever they had to assume line infection and they kept her admitted and on IV antibiotics. They were not effective and I was losing my patience. I couldn't understand why they weren't doing more to figure out what was wrong, it was obviously not a line infection but that's what they continued to treat her for! Finally, my friend Raechelle and I took her other symptoms(red swollen gums and sores on her cheeks) and punched them into google and we can up with high fever+red swollen gums+sores= herpes simplex 1(stomatitis) it fit so we took all the information to the Drs. They also had a light bulb moment and started anti virals, she was home 2days later.
During her 10day hospital stay she was obviously not as active as she usually is. That prevented her from being able to tolerate her full feeds. When we got home the trend continued. She went from tolerating 24ounces per day(her highest) down to only about 6ounces per day 12 tops. She couldn't seem to really recover. On the 17th we had a GJ-tube placed(replacing her G-tube via the same stoma) we are now doing continuous feeds for 18hrs per day. We started very slowly at 3ml/hr and are now up to 5ml/hr. We have a current goal of 15ml/hr and will go up from there as tolerated. The other thing that has changed is I am now venting/draining her out of the Gport and feeding her into her Jport. She is draining about 200mls of bile per day and as a result not vomiting, that is SO nice for a change. Her diapers are also more pleasant to changed without that added bile. They still aren't pretty and the addition of Elecare(new formula) means they are super smelly....but so far we have a good thing going. I hope things continue on this path.
That's our update!
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