In an attempt to maintain the integrity of this blog we have decided not to cloud Elias' site with further rants and disappointments with home nursing. We did have an incident in the last few days that has me almost as boiling mad as when the nurse missed Elias' feed. We have created a new blog site, more for us to log these mishaps and injustices to help us in our battle. Keeping a good record of the facts is a great tool and admissible in a court of law, should that need arise. It is a private blog, meaning you have to get an invitation from us to read. We are sending those out to our regular readers that we have email addresses for. If you have not yet received an invite and would like one please email us, firstname.lastname@example.org to request one. We apologize for putting out another blog for everyone to read, but we feel it is the best thing at this point.
The site is called http://homehealthfiasco.blogspot.com/. Appropriately named don't you think? We might eventually make the site public in hopes to aid other parents in our scenario from making the same mistakes. For now we would like to select those who read based on the content. So again just email us for an invite if you have not received one. I simply can not continue to turn the focus away from Elias and his progress. While this is an unfortunate part of his life right now, I feel it is distracting us from the purpose of this blog. We do wish to continue to share our feelings about this fiasco with those that are interested, but feel it needs it's own home.
Brief Elias Update
Elias is recovering well from the surgeries. He still has some mild discomfort. The bigger concern has been the reflux and spitting up since Saturday. On Sunday we called the surgeon to let him know what was happening and we decompressed his feeds to a lower rate. After this change he has had very few episodes of reflux and spitting up. This will be a post-operative necessity going forward. We hope to resume his normal feeding regime by the weekend. We also found some slight blood tinged color to the gauze around the G-tube site. The surgeons are aware and have discontinued the use of Motrin in his surgical pain management routine. They think this might have caused his stomach, along with the reflux and retching, to become very irritated. Elias is simply visibly uncomfortable and fussy due to this. He is also not sleeping well, awakening about every 20 minutes. Hopefully, the reduction of meds will help soothe him. We visit the surgeon for a follow-up on Friday and have a assessment for home occupational & physical therapies tomorrow.