We know Everyone has been patient and anxious to hear how the transition Home is going. We are trying our best to adapt to the new challenges of home medicine. It is certainly very different from the hospital culture, especially when it comes to supplies. So far things have gone fairly well with a few dramatic highlights, but we know things will become easier with time as we develop a system of caring for him. This morning we do not have a nurse and Elias is in his swing and things are calm so we will try to get a quick update
We will begin the recap of events with discharge day!! It was a very fast paced 3-4 hours. As we drove home I told Katharine it like the wedding reception. Running around trying to see everyone and thank them in such a short period of time. Shortly before we were about to leave for home there was trouble a brewing outside the hospital, and it wasn't Elias :)~ There was construction outside the hospital and an underground power station exploded and fires erupted underground. This blocked the main entrance and several blocks around the hospital. We can't even leave the hospital without a little drama, ugh! At this point it turned into the great escape...how were we going to get out of here. The nurses finally found that we could exit via the shock trauma ambulance bay entrance. The trick now was getting Dad to his car and navigating the city streets to that point. I wish I could say that there was a helicopter ride or police escort involved, but no such luck. It was a simple three block walk around my elbow to get to my thumb and pretending not to be from around here as Dad drove through a pseudo fire truck barricade ( they should not have left enough space for me to get through if they really didn't want me there). Dad of course was not the only one doing this, he was just following the "everyone else is jumping off the bridge, they must know something I don't" logic! Finally, I get to the rendezvous and the loading of the car begins.
Just before loading Elias in his nurse took a family portrait for us outside the hospital. Not sure what kind of goofy smile I was attempting to have, but it could use a Photoshop. I really love how Elias was taking in the new environment. It was a beautiful day with tons of clouds and a bright blue sky.
Mom got some video of the car ride home, which went very smooth, once we got out of the city. Elias seemed to really enjoy the motion as his eyes would get real big when we would move. Hopefully, I'll be able to get that video loaded on the computer soon, but that now lies in Elias hands and how busy he keeps me :)
The introduction of Rusty, our Dog and Elias was not exactly what we thought. Our home nurse was waiting outside for us when we arrived at the house. Rusty was more interested in smelling her at first, that is until Elias made a noise. He ran to the stroller and started sniffing, but was very good overall. He was obviously very confused and a little jittery the first day and the night was horrible. Rusty whined the entire night because he wanted out of the bedroom to check out the nurse moving around the house and of course Elias. Never mind the weeks we spent preparing Rusty by sleeping with the door shut so he would be use to it. All that was forgotten. There was a stranger in the house and he wanted to keep an eye on them. The second night, was much better. He only whined when Elias would cry, a good sign perhaps. Yesterday, was cute. Elias was moved to the living room ( not too terrible of a task, but requires moving a 50 pound compressor) and sitting on Mommy's lap. Rusty very cautiously approached sniffing then licked Elias leg and arm. I think that was what made Rusty comfortable. Rusty seems to be becoming protective of Elias. He would lay in the hallway facing the front door outside Elias room. Whenever Elias got fussy Rusty would come over to check on him. The case manager visiting yesterday commented how Rusty was like Nana, the dog from Disney's "Peter Pan." We found that mildly amusing being such Disney fans...its like she knew! Overall, Rusty is doing well with a little brother in the house. He has really adjusted quickly, but still has a little more to conquer.
While Wednesday was a huge milestone in coming home, Thursday was certainly the beginning of adventure....Our first trip to the doctor. It was a Well-baby visit at Elias new pediatrician. We learned very quickly why parents with trached babies do not travel about too much. When we leave the house Elias is on an Apnea monitor, then you have your suction machine and emergency bag, and of course the diaper bag. Being the first time out with it all, it was a little awkward. It will just take some getting use to, all in good time. While we were waiting in the exam room for the doctor, Elias' G-tube fell out!! Oh My God!! We stayed fairly calm and collected, extracted the water from the balloon and reinserted the tube and filled the balloon again. Our first potential disaster!! We did call Pediatric Surgery to let them know and to ask if they needed us to bring Elias in. They told us not to worry about it unless the feeds started to leak...hmmmm leaking, can you describe what that might look like, we might not be certain if it is leaking too much hahahaha!!! His surgeon is going to meet us at our pulmonology appointment on Monday, just to take a look see though.
Here are some photos from Tuesday of Elias and his two favorite nurses in the whole wide world, Sarah & Trish. We know they will both miss Elias very much, as we will all miss them. They have been wonderful friends to us during this whole journey. Thank you all so much and we can't wait to see you all again. Sara we told Elias what you wrote to him, he smiled at us. I think he is a little lost without you too!! Daddy apparently doesn't have the morning dance moves down just yet. Elias just smiles to humor me I think!!
There is more to come we promise. I started writing this update at 7 am this morning, well you can see the actual post time...lots of interruptions. It is actually time for Elias' next round of medicines and time to hang and restart his feeds, so here is where I must leave off for now. We will work on the video and of course we will be taking tons of photos as we get settled into our new routine. We will continue to update everyone as often as we possibly can. Thank you all for supporting us through this first portion of our journey. Things have certainly not been easy, especially the last few weeks, but nothing worth having ever is anyway. While things are not quite as bright as we hoped they would be when we arrived home, we will continue to find strength in Elias, Faith, and your love and support. God knows that we will need it as time goes on. While things at home are not easy by any stretch of the imagination, it is comforting to face Elias at the beginning of each day and kiss him goodnight at the end. Thanking God for one more day with this precious, amazing child. May his will give us many many years to celebrate and enjoy Elias and everything he brings to us. I really think that Elias brings out the best in people and has a destiny greater than we could ever imagine. We will close by saying it sure is glad to have him home. To be able to just go look at him whenever we want is such a wonderful feeling.