The forbidden word...

HOME.

We have been waiting 7 long long weeks to hear the doctors even mention getting B home and they finally have!

I talked with our pediatrician this week and discussed with her that we had been thinking about transferring B. She agreed with us that something needed to change. Apparently, she had been following the case all week and was planning to call us Monday to talk about the possibility of a transfer. She said that if this were her child she would be planning exactly that. She called the hospital and spoke with a few of B's hematology doctors and told them she had recommended a possible transfer and that we were seriously considering it based on the following concerns:

- His primary hematologist has not actual seen him since the week he was admitted.
- Lack of a next step plan or any sense of urgency to come up with one now that they're certain he isn't responding to corticosteroids or IVIG.
- Indifference toward his sky high ferratin levels (excess iron in his body)and the possiblity of transfusion induced iron overload.
- Failure to reach out to other hematology specialists & a perceived reluctance to work collaboratively.
- Brady's quality of life. He has spent all but 3 days of his life in a hospital. We need a plan to get him home!

Within an hour of Dr Miller contacting the doctor's here we got some results. They changed B's primary hematologist to Dr Higman, who has seen him pretty regularly since his admission. I talked with her at length about our concerns. She agreed to get in touch with ANY and AS MANY specialists as we would like and to work collaboratively with them (ie - order any tests they suggests, consider treatments they come up with, etc) to come up with a treatment plan. A ferratin level will be added to his daily labs to monitor how well the desferal is working. And, we now have a set list of goals to achieve in order to get Brady home...

-He must have completed his IV antibiotics. His cultures are negative as of 11/27 and he needs them for 10 days from that date so 12/7 will be his last day.
- He must be requiring 12 hours or less per day of TPN (hyperal & lipid nutrition though his IV) and tolerating tube feeds for a minimum of half his nutritional value. That means 10ml/hr continuous feed.
-Transfusion requirement must space out to about 48 hours between. Then we can come in every other day for outpatient transfusions.

I know it isn't a short list but its something tangible we can work toward. I'm confident we'll get there and I'm hopeful there's a possibility it will be before Christmas. To have our whole family home to celebrate together means more to us than we can put into words! I'm so glad we chose to stand up and advocate. Just the mere mention of a transfer has seemed to make a huge impact. We fully realize it may still come to that but for now, we are willing to give the doctors here another chance!