Could be going "home" Monday =D

During rounds this morning we recieved the update on Bellas Bipap machine. She will be getting the Bipap ST by Respironics and using the MiniMe mask. Hopefully by 3 pm today we will recieve the shipment and start Bella on her "at home" routine here at the hospital that way they can monitor her O2 saturation levels and heart rate to make sure the equipment they send her home with will work as good as the equipment she is on now.

They have also begun to sprint her off the machine because Bella is still strong enough to breath on her own and maintain high Sat's. So far we have let her off the machine for 2 hours and she did great! Today we are going to take her off the machine twice at 2 hr intervals each time. Then tomorrow will will try three times. We basically want to see how often she really NEEDS to be on the Bipap. The doctors said most likely she will only need to be on it for naps or night time because all babies breath shallower at night and since she is getting weaker we dont want her to work as hard breathing; we want her rest comfortably.

The cough assist and suction machine are basically ordered but we wont recieve those until we leave. The hospital wants to set up the machines at our home as well as perform an assessment on the overall safety of her bedroom. We also are going to recieve nursing assistance through out the day and when a family is provided nursing assistance they require that the baby has its own bedroom. It turns out getting at home nursing assistance is harder that we thought.

First the case manager has to see whether we qualify. They check every option they have to cover the cost such as Medical, CCS, or the insurance: We qualified and we have all three so none of those were a problem

Secnd, the case manager at the hospital gets in contact with an at-home nursing provider. Then, four things must be researched:
The nursing provider in your area must be located
They must have nurses with experience in babies (not just pediatrics)
They must have expeirience and feel comfortable using the equipment your baby is on
They must be available at the hours that are convienient to the family

The case manager here at Kaiser said sometimes a nursing provider will have all but one of these requirements meaning the hunt must start all over again. If everything were to go smoothly, the case manager here at the hospital said we should have assistance within a month or two.

Here is where our next hurdle begins:
*We dont know were we are going to live.

We can go back to our home until the 20th which is when the leasing office is expecting our rent. If we by some miracle have gathered enough funds to make rent, we can stay home. Then, all the at home assessments will have been useful and within a month we recieve our nursing assistance.

If we dont have enough funds, then we will have to resort to having me move in with my Dad in Downey or move in with a very kind lady who lives in Norco and offered us a room. Either way, we will need to get an in-home assessment done again where ever we decide to stay, setting us back another month in assistance. (not to mention all the other set backs I listed below that will happen if I go to Downey).

Either way, im trying to remain positive because I have heard from sooo many of my friends who are gathering donations from family, friends, co-workers, and churches. I am so humbled by everyones help and know that somehow we will make it through this battle like we have made it through battles before.

As sad as it is to say, all the experience my husband and I gained with my son and his fight for life helped to keep us strong, able, and willing. I can feel Bradley. I know he's here. I know he's helping. I know this because sometimes I get this funny feeling in the pit of my stomach at random times throughout the day that make me feel calm and assured. Its the same feeling I used to get when he would give me that deep stare. The stare that said, "Mama, don't cry. It's going to be ok." Funny how he could say so much and yet say nothing at all.

Thank you sooooo much for continuing to read these blogs and for even sharing them with others. I have recieving countless emails and text messages from friends and family informing me that they not only are forwarding our blog to others but that they are doing everything they can to help us financially and spiritually! We are truely blessed with you all and our humbles hearts thank you :D