We also had visitors today - one a pleasant surprise and one a pleasant plan. Everything went as planned - We planned to say farewell to Ady today, sending her home with my brother and family to spend a more normal week in her own home (with Grandparents and the cat) and bed, going to school and programs as expected. It had been a good visit with Ady but also time for her to go. Probably harder on us than her as she seems to take this all as a grand adventure. She does ask regularly, however, three things: when will you be back home? When will Teo have all the tubes out? When can we go on vacation again? (She asks a lot of other questions too but these are the ones that pierce through me since I wish I knew the answers and crave those things too!)
We had high hopes at the beginning of the day with talk of Teo being discharged as early as Wednesday - I was set to write about it and tell how well it was all going. The delay in mywriting has brought another set of circumstances to write about and we may be delayed here awhile yet. It all depends. It always does.
The tubes that remain in Teo are draining fluid from around his heart. They analyze the fluid regularly and have found there is too much "kile". That's not the full word but, from what I understand, it is a sign that his lymph system may have been damaged during surgery. It is common enough but a setback for Teo. When the "kile" remains in the lymph system, it helps to break down fats. If his is pooling rather than in the system as it should be, he cannot properly break down fat and the pooling of fluid itself is also problematic. The remedy has many possible steps - the final try being another surgery. But there are several attempts before that last resort: we started Teo on a low-fat formula - no more breastmilk - by bottle. Now, we had not had much luck prior to surgery with bottle-feeding though he has been better post-op. So, we expected Teo would need the feeding tube replaced (as things were going so well, it was removed around noon today). He also needs to be on this diet for 4-6 weeks. Good news is that Teo was a rockstar with our first attempt with both bottle and formula! I remain skeptical if this will continue. But hopeful. Always hopeful. There is also a possibility that I can alter his breastmilk with a changed diet of my own. We will see a nutritionist about that tomorrow. Goodness knows I could use a low-fat diet for 4-6 weeks (about as long as any resolution about diet lasts, right?!)
So we're not sure how long this delays our departure nor how well Teo will do with this setback. We remain optimistic and need to settle back into taking things one-at-a-time. Patience, my dear, patience.
P.S. (Can you post script on a blog??) Happy Thanksgiving to all our readers! We hope it was a great day for you and one of thanks and, perhaps, of turkey and stuffing and a bountiful harvest. We are very thankful too even if today's lesson was about patience. This list is short compared to what we carry in our hearts:
Thank God for all our blessings
Thank you for all your support
Thanks family for filling in
Thanks that this is all we must bear as we have now seen much more
Thanks for Teo and Ady, eachother
Thanks for doctors and nurses and their care
Thanks that turkeys can be frozen and then cooked up later when the family can be all together
Thanks for perserverance and for patience too
Sent on the TELUS Mobility network with BlackBerry
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