A Weary Update, But Some Progress Made

I type this after a very long exhausting day of phone calls, meetings, and visiting, so please pardon my typos tonight. Our last update really roused up the spirit in a lot of folks. We received some great emails and of course comments on the post and Elias' tag board. With that being said i would like to call this council meeting to order. We were able to gather more information that doubles as enlightening and confusing as H-E-double hockey sticks. After many hours on the phone this is what I learned.

The first thing is that the SSI benefits we spoke of on Friday:

because Elias has been hospitalized more than 30 days he should automatically be approved for SSI & medicaid. That would ensure us the benefits much faster. The only thing then keeping him from home is the parental education program we must complete prior to his discharge.

Well this is not exactly accurate. We certainly misunderstood a few things. He would be auto approved, but they would only be good until Elias was discharged. We would then have to go through a reclassification and approval for traditional SSI. At this point in the game we are too late because it is only retroactive from the date of application and would truly only benefit us at this point if we needed secondary insurance, which we do not. We have already applied through the traditional SSI and are getting set to appeal our denial. So we can now forget about that as it no longer plays a role in our coming home.

Next, we got the paperwork in for the MWP and it will be reviewed and setup ASAP, once a spot opens. We will be one of the top priorities, but it could take weeks or more. The MWP is a non-profit agency, please do not think they are in anyway the bad guy or not doing everything in their power to help us. We were successful in getting the insurance company to at least look into providing us with documentation that the will not provide private duty nursing. We should hear back tomorrow on this. Apparently, no one at Blue Cross/Blue Shield knows how to type a simple letter without upper management ;)~ I think we will ultimately get what we need within the next week. Then all we will have to do is wait for the spot to come open for the MWP and get the Private duty nursing set-up. This apparently too is a slow process, we have been warned.

Enough on that headache....what about our boy?!?!

Elias is now beginning compressed feeding. Trying to train his stomach to take his nutrition in intervals rather than continuous. Right now they are feeding him 60 mls over 2 hours with and hour rest in between. They will gradually build this up until he is getting bolus feeds, or all at once. Elias seems to be tolerating this well. His surgeon has scheduled another dilation of the esophagus for Thursday. If things go well we may lengthen the time between these procedures. Spine films and ultrasounds were done and the results came back with no signs as of now for any vertebral issues...the first bit of great news we have heard in a while. Thank God for that. So Elias has all the letters in VACTERL association except the V. Finally the kid gets a break!! The hemorrhage in the brain found when Elias was born has been significantly downgraded and almost completely gone. however, they do want to repeat the brain ultrasound to reexamine the ventricles in the brain as they appeared larger than they should. Genetics will be drawing the blood this week for the Fanconi test. There is a link on the side if you are not familiar. Last but not least a heart scan will be done just to follow up on the progression of the VSD in Elias heart and the right sided arch. Basically, this is last minute general follow ups for preperation to discharge and transfer. It is possible he could be medically ready to transfer as early as monday. We are still trying to plead our case, and the doctors are sympathetic to how we feel, but it is simply not in their control. One final milestone we achieved tonight was the suggestion by one of Elias nurse that since he has an oral aversion and not able to try feeding orally that we try putting him on Mom's breast to see how he responds. All his expereince with oral stimulation has mostly been negative (IE; intubation, OG, OJ tubes, etc.)Having him do this is not only natural and bonding, but it might encourage him a little. We did this for about 15 minutes. while he didn't actually suck from the breast he did instinctively respond and tolerated it well.

I am too tired to put my final thoughts into a coherent form so I will close this update. Tomorrow when I am more rested I will try to explain and sort out the tangled web that is becoming the journey home. I will say that the medical team is doing everything possible to get Elias to the next step, be it home or the transitional facility. That is not their decision to make, only getting him to that point. Until tomorrow...."THERE'S A GREAT BIG BEAUTIFUL TOMORROW....!!"