The nursing agency we have chosen to use has contacted us with an update on how things are coming together with Elias case. They have made some progress, but have no leads on night shift thus far. They informed us that they believe it will still be 2-3 more weeks to pull everything together. They are working hard, but have admitted the night shift is very difficult to staff. That is what we need the most, of course. The doctors have all but cleared us for home. They essentially have said that there is just nothing else they know of to do to improve Elias airway right now. Possibly after he grows there will be some new opportunities, but for now we must in a sense live with the ups and downs and manage it as best we can. All this of course while keeping him safe. The doctors I think are trying to be compassionate to the fact that we have been in the hospital so long the last few months, not to mention Elias’ 18 months of life. So they are giving us the choice to stay or wait for the nursing. Now the support staff (Nurse Practitioners, and Respiratory Therapist) tell us we should not chance it until things are set. They have seen too many families take that chance and it become disastrous. We know that first hand as this is becoming more and more like our NICU discharge with services being thrown together. The doctors agree with this as well. After all it is them saying we have to be as cautious as possible with Elias’ airway. Then you have the nursing agency that tells us that will not happen, of course. All of this places a very difficult decision on our shoulders at a time when we are beginning to burn out a little with being at the hospital and are exhausted from the constant & non-stop pace with the erratic schedule we have had to keep. It is kind of like going to the grocery store when you are very hungry. Not a good idea when you have such favorable temptation dangling in front of you. What would you do? I think we know what we have to do and that is take the conservative approach and stay, but that is heartbreaking and is like asking for more trouble and frustration. Certainly not a decision we are happy with stressing over at the moment. WE have enough of that, no more is needed. Another concern has surfaced as we have focused in the insurance segment to the transition home. Elias has exceeded the halfway point of his lifetime benefit cap. We feel like we are paying for everything twice, once in Maryland and again here. We had to fix the tracheostomy, the G-tube, now the urologist are hinting that the hypospadias repair was not allowed to heal properly and may need to be redone, then the ABR not being complete, when does it end? Is there not any recourse for us? Not to mention the new developments /set backs we are now living with by making the tracheostomy work as it should.
Sorry I am ranting, but you get the good with the bad here. Unfortunately, these things all affect and impact Elias directly. This is the reality that comes with having a child that is medically complex and we hope that other families are able to learn and walk away with anything from our experiences.
Shifting back to Elias, we were able to get some photos yesterday of him. When I go home I will upload them onto the site. Gives everyone something to look forward to! He has had a couple of good days, fairly low key and full of play. He is now on antibiotics for the UTI, but that is hardly evident by the way he is acting. We are beginning to work in some windows again off the feeding pump to reduce the number of attached wires if even for a few hours. We had a good visit with Grandma M this past week and she has now returned home. We appreciated her help and glad she was able to visit with Elias too! We are continuing our fight over the ABR and trying to get Elias a hearing aid of some kind. I am suppose to hear back from the ENT nurse practitioner tomorrow who is trying to get some more details on audiology’s decision or at least get them to come speak with us. Never give up, constantly fighting and advocating, always learning and asking questions that is our attitude when it comes to Elias! One thing we have learned about advocating is that you have to dig deeper and keep pushing when you are discourage. That is what we will continue to do.