I haven't updated in a while because I haven't had the heart to write these things out. Charlie is below 20 lbs now and we're barely getting her fed. I don't feel a PICC line or broviac is a good thing long-term. We are considering a temporary PICC line to see if all she needs is a gut rest. But if we still can't get her feeds in after that, we may be shutting them off and switching back to hospice.
Her pulmonologist insisted that kids like Charlie almost always die from something respiratory. We never thought her digestive system would be the first to go.
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3 comments:
Oh Shauna... :hugs: My thoughts are with all of you. I hope all she needs is just a little rest to get back on track...
Hugs to you... and your two little ones. I am so sorry to hear things aren't going well - I wondered how Charlie was doing after her birthday celebrations.
Hoping that the rest does what you're hoping for... thanks for updating.
Shauna...I am so sorry. I certainly hope you do not need to back to hospice, that breaks my heart.
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