P.E.N.N.river

Since my last blog, I have spoken with the CEO of our local hospital in Fredericksburg, TX. I have also spoken with Dell Children's Child life specialist and taken a tour of the facility, and decided to deliver Mr. Triston Harding in Austin based on information I am privy to as well as gathered through Healthgrades.

Today I will meet with key players to discuss the first program of Parents who've Endured a Newborn....Near-death group. We are no longer going out on our own as a stand-alone non-profit, but instead merging under the tax umbrella of Texas Parent to Parent housed out of Austin.

Our first program involves being on-call for patients at Hill Country Memorial Hospital in Fredericksburg who are surprised at birth with a medical diagnosis. I will be a liaison that would provide unbiased statistical information on area hospitals patient safety data as well as specialty areas. Also, I would provide information on the top childrens hospitals and help in decision making by researching insurances which are accepted at area hospitals, and set families up with others who have been through the same decision-making process. I would be on-call in the aspect that the affected family would be able to call me anytime day or night to ask questions, voice concerns or vent frustrations.

Once the protoype of the program is in place, with the help of TxP2P, I will be taking the program to other hospitals in the region.

Another aspect of the program will be in the distant future to construct a manual that informs patients of how to deal with "issues" that arise when being in an ICU setting. It would be written specifically for parents of children, however, could be used for other family members as well. It will be fully based on research, and constructed as an instruction manual.

The more detailed aspect of the above program would be developing a speaking circuit for grand rounds presentations. Texas Parent to Parent has done this in the past, however, currently are lacking site coordinators which are needed to make the necessary relationship contacts.

I have a lot of work to see this program up and running by June. I will be giving birth at that time, and will be on an extended leave, but available nonetheless in Fredericksburg for patient families.

Perhaps if through these efforts we can save one child from going down the path my son did, his life being lost might be "justified." One thing is for sure, I would feel much better if the suffering that he went through was serving a purpose in other childrens lives.