Busy Times

Wow! The past few days have been very busy, uneventful thankfully, but busy here at home. Ah, that is nice to say, here at home. Elias continues to enjoy the life here. Rusty, our dog provides Elias with a great deal of entertainment without him even realizing it. Elias has become very aware of him and laughs often when Rusty is in the room. Something about the way he moves we think. Otherwise Elias has just been adjusting to a new routine. Well, maybe it is more us adjusting than him, he always just goes with the flow. Something we are thankful for and hope he continues with throughout his life. We did have nursing in Thursday and Friday mornings, but not yesterday or today. We actually just got our care plan for Elias Friday afternoon. For those who do not know a care plan is the instructions and guidelines to care for Elias. Without those it is virtually impossible to care for him without us telling them what, when and how to do so. That kind of defeats the purpose.  Reviewing the care plan this weekend we have found some interesting items enclosed. For instance, according to this document Elias’ mental state is disoriented, and they are also suppose to explain all procedures to Elias before implementing. That was a few of the comical things we noticed within this document. I think part of our staffing problems comes from two issues. Structural hierarchy and power struggles between the case supervisors and the schedulers being the first. The second, based on what our nurse was told about Elias, they are scaring potential nurses away with Elias complexities. Yes he is complex and yes he has a lot of things going on, but overall compared to what you would expect from all that he is easier to care for than the paper diagnosis suggests. It’s not a cakewalk mind you, but easier than you would expect. I am thinking this will need to be addressed this coming week if we still have made zero progress. We are approaching six weeks of search time now.

On Tap for Elias the next few weeks, Grandma O and Aunt Kelly will be coming for Thanksgiving weekend. We will have his IGG levels checked again to see how the last IVIG did and determine if more infusions will be necessary. We are being told to expect that he will get them roughly every 2 weeks through the winter. We also have several appointments coming up, mostly follow-up but we are trying yet again to get into our new local pediatrician. His mucus fistula of his colostomy is still giving us fits and none of the doctors want to claim responsibility they pass the buck to the surgical team. It is still profusely leaking and causing some horrible skin issues. We are just trying different things trying to fix it ourselves. We have not tried discussing it with the colorectal team so maybe they will be able to help us since they are the ones who will reverse it once the pull-thru is complete and healed. For the most part Elias has been accepting of the ventilator since we have been home. Last night however he started crying when we put it on him. It broke our hearts. He was crying so hard that it was setting off high pressure alarms, so we had to remove it. Fortunately Katharine was able to rock him for a brief period and lull him to sleep so we could reattach the vent. Not sure what caused his breakdown last night, but we are hoping that it is an isolated incident. Other than that we are just going to try and enjoy what we can as a family here at home.