Mom & Dad's Very Busy Day

Once again we apologize for not staying on top of the updates. Things have been a little more than busy around here. As we reported in our mobile update yesterday the staff was trying to convince us that we did not need to "observe" them changing the trach tube. We have always been very involved in learning to care for Elias and as they put it "do a wonderful job." Our nurse yesterday, Trish told us that during report (at shift change) the night nurse commented, "Mom & Dad do everything, I just stood there and watched." Trish laughed and told her, "yea, these parents don't fool around." That made us feel good, yet again! So with our track record and willingness to jump in they felt we should be able to do the same with his trach tube changes. We were both a little nervous about it as it was, but after a little conversation it was decided that Dad would get the first honors. Dad was feeling particularly brave and ready for some reason, although still a little nervous. The nurse positioned herself to the right of Dad and the respiratory therapist was behind Elias at the head of the bed. Mom's job was to remove the old trach tube give it a quick wipe with a saline covered gauze and then dad would slide the new tube in. Sounds simple enough. We talked the process out one final time and then showtime.... Just before we began the respiratory therapist asked dad if he was ready. Elias was looking up at daddy waiting for an answer, he smiled as if to show his confidence and dad replied, yes now I'm ready. It was easier than changing a diaper in my humble opinion. It slid right in. There was no guessing how or where to place it, very cut and dry. The team told us we did a great job and that was all there was to it. Mom & Dad were very happy and Elias tolerated it rather well. It was a great relief to actually accomplish that.

We also toured the new hospital Elias will likely go prior to coming home. It is farther away than where we currently are and we either have to travel the dreaded beltway at rush hour or drive through the city. Neither of which is a very intriguing option. We make the trek up and arrive for our tour. This is a pediatric transitional hospital. It is not set up for emergency care all these children have to be in stable condition. The lobby was very nicely decorated and spacious. Not overly children friendly in terms of decorated items gracing the walls, more a tribute to money donors and sponsors with painted portraits of a family that has helped develop the hospital over the last several decades. We meet with our admissions coordinator who takes us in through a hallway that has several family waiting rooms and some "play rooms" that are actually therapies for the children. They were bright and active and we saw some interaction between parents and children. We continued down the hall which seemed to get darker, almost like a cave, into a large circular room. This is where the patient units or rooms are located. Elias would be placed in a high observation unit which houses three or four children. There is a nurse stationed inside the room at all times. We were quickly pushed around the circle stopping periodically and rather briefly to see an area of interest. We were then shown the stairway to the cafeteria, vending machines, and the exit. We were given brochures and other information and they answered a few of our questions and that was about it. Here were our observations:

• The cribs looked like cages! Metal and tall
• The staff and nurses walked around expressionless, as Kat put it, like the old version of the "Stepford Wives." While we were in one of the unit rooms Kat tried to smile when she made eye contact with the nurse, but got response.
• It was very dark and undecorated in the unit rooms and rotunda surrounding it.
• It feels like starting over having to develop comfortable feelings and relationships with the staff.

We just did not get a warm fuzzy feeling. It wasn't an overwhelming negative feeling either, but I think we were expecting something a little different. We felt like this was more of a lateral move instead of a step forward. Considering we have no idea how long he will be there we felt things should have been slightly different. If we knew it were for short term maybe we would be OK with it. We talked with our case manager yesterday about our visit and she was disappointed to hear things were not quite what we expected. I think that is the main reason for our disappointment. She recommended another specialty hospital we could send him to in Washington DC. We are going to look into it, but not sure it is a viable option. We really don't know that we have much of a choice here. Elias is at the point where he doesn't need the acute intensive care. The main thing keeping him here is the G-tube, but that has been settling some. It is very realistic that he could be downgraded as early as Monday. We are taking the weekend to consider our options and reconsider our opinion and feelings.

The final bit of news we got yesterday was from our case manager. Her job is to work with the insurance company. She has been trying to find out about our benefit coverage for the home nursing care Elias requires in order to go home. She finally got an answer yesterday. There is a specific exclusion of home care from our policy. The other bad news is our medical supply and equipment coverage is only $2,000 annually. That is hardly enough considering we will have a humidity machine for the trach collar, suction machine, weekly changes of the trach tube, plus emergency backups, colostomy bags and supplies, etc. just to mention a few. So she put the wheels in motion for the model waiver program which we told wrote about last week. We actually spoke with a coordinator with the program yesterday and she faxed us the forms. She explained that there are only so many spots available with the waiver program. Think of it like an organ donor list. When you are on the list the more need you have for that organ to stay alive the higher up the list you get regardless of how long you are on it. This is true with the waiver program. Since Elias can not go home with out home care he gets pushed up higher on the list, but there still may be a wait time. Elias will remain hospitalized until those benefits are obtained. UGH!! Positive news on that is she told us to go back to Social Security, 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. Because we got the info so late yesterday we will have to wait until Monday to set up an appointment with Social Security, but will certainly be doing so first thing Monday morning.

So we had a ton of information to absorb and filter yesterday. There was some heartache, but also some reason to celebrate. We will need to take a few days to really sort through the options and opinions. Things are beginning to move very rapidly, which is good overall, but the insurance could be the single cog in the wheel that brings us to a screeching halt.