Elias' Play Plan & Sense of the Week

After his evaluation yesterday, a plan was developed to help his progression and keep him stimulated in a consistent way. These were placed at Elias' bedside today so that anyone who comes in contact with him will know how to stimulate him in a productive fashion. Just another wonderful part of his care here. Today was pretty uneventful, which is how we would like to keep it. They did move forward with ordering the spinal film and ultrasounds for spine and brain. These will be done in the next week. The reason is for the "V" in VACTERL, to ensure there are no issues. There is a high risk because of the imperforate anus for something called Tethered Cord . In a Study done from 2001-2004 seven of nine patients with IA had an instance of the Tethered Cord. There are other potential vertebral issues he could have, but that is the most common. Elias is now at the age where an effective study can be done and proactive measures taken if needed. We do not have reason to believe Elias has any issues, but it is a major part of his association and should be ruled out. The brain ultrasound is simply a follow-up study on the level 2 hemorrhage Elias had at birth. Clinically all signs show improvement, but they want to have a look to be certain. We certainly agree with the precautions. Other than those minor things the only other item holding us up is the G-tube. The last 5 days have been much improved (knocking on wood), but they need to be certain before discharge from the NICU to the transitional hospital. Otherwise, we could find ourselves transferred right back into the NICU. It is a little confusing how long it will be prior to us being discharged from the NICU. It could be as early as next week, but we are thinking closer to the end of August. It really depends on who you talk too. I don't think there is a consensus yet. Elias does have another dilation procedure coming up, probably on the 20th, as they are going for every two weeks right now. The other issue would be having a bed space available at the transition hospital. We are going on Friday morning for a tour of that facility, so we will have an update on our thoughts that night. We are also still waiting to hear from the insurance to see if the Home Nursing benefit will be covered. If not then it could take awhile to get alternate funding approved from the Model Waiver Program by the state. We of course still have to learn the care for the trach. So far Katharine and I are both doing and are comfortable with suctioning his tube and changing the collar that holds the trach in place. We will witness our first trach change on Friday. Then beginning as early as next week, we get to try. Things are starting to have some sense of finality to them, but we are trying not to become over excited just yet. We know that learning and becoming comfortable with the Trach care will take some time, maybe even a few months. As we were right before Elias was born, we are at a place where we are ready to move forward and embrace the next challenge. The endless waiting and uncertainty will get the better of you if things are stagnant too long, and we are getting close to achieving that point. We remind ourselves, how far Elias has come and remember that you cannot rush perfection!