Busy Few Days

Its funny to think with as long as we have been in the hospital and the impending discharge date looming in limbo that things are so disorganized and frantic when the call is finally made. Having said that, yesterday was a blitz of activity beginning with the delivery, set-up and yes more training at home. We were able to get a patient attending for Elias to watch him while we were away from the hospital to do this. It took a good bit of our day, more than we anticipated. The respiratory therapist that came to the house said it was one of the smoothest set-ups he has ever done in his 20 years of experience. We took that as a compliment. After that was done we headed back to the hospital for more training. It was the final check-off boxes for our discharge requirements. We had to make Elias portable and walk him around in his stroller with all his equipment of course…yawn! We’ve been doing that for a while but did it to appease them. We also had to do the most ridiculous and in my opinion torturous thing you can do to a child. We had to demonstrate that we could put him in the care with his equipment. How cruel is it to wheel your child outside where Mom & Dad have their car you put the child in and then say…Okay now out of the car and back to your hospital room. Elias looked at us like we were crazy when we pulled him out of the car seat after 30 seconds and back in his stroller. Just have a hard time with that one even though I understand the purpose surely there is another way to do it, like a car safety inspection or something. So after proving we could get Elias in and out of the car we had to set up Elias’ home ventilator for him to use the next few days to ensure it works properly. Now that is a smart idea. The car thing not so intelligent. After setting that up since we still had a patient attending until midnight we headed back home where we had a rare opportunity to enjoy an evening with family that was visiting and staying with Katharine’s Aunt/Uncle next door to us. It was nice to have some great food, a few beers, lots of laughs and some relaxing fun even if only for a few hours! Thanks for that! We needed it!

We are very excited to leave here and get Elias home. As we said before Elias seems ready too. We had an opportunity Wednesday to take Elias to one of the Therapy playrooms. These are private areas that therapist can bring the children for therapy and a chance to escape the hospital room! Elias LOVED it. Lots of new toys to play with, but you could feel the energy he was giving off exploring the new surroundings. Can not wait to see how he is with home. He played his heart out, laughed and smiled, got excited about everything. It was such a great experience and further instilled that our decision to go ahead home is a good one. He needs this as much as we do, if not more. Continuing on that theme of therapies, his therapists have been so super impressed with Elias the last few weeks. Of course so have we. He has been amazing and accomplishing so much. His occupational therapist saw us in the hall yesterday and flagged us down. She had been in earlier in the day and she was telling us how incredible a job Elias had done. She had brought him in a simple wooden peg board. The pegs are about 2in thick and about 4in long and sit in a straight line in 1in deep holes. Elias was pulling them out and then placing them back in. Something she considered very advanced given his hand anomalies. It was she didn’t think he could do it she was simply surprised because he had not demonstrated other things she had expected to see first. Elias is also getting very good and weight bearing on his legs and when motivated with the right toy he will push up into a standing position (with lots of steadying help) and reach out for the toy. His physical therapist decided to really challenge Elias and give him a chance to really show off. He did not disappoint. She took the peg board and placed it on the parent sleep bed which was beside the mat on the floor. It is about 12 to 18 inches off the ground, so a perfect height for weight bearing and leaning. Elias saw them up there as he was doing the leg standing exercises and he leaned out to reach the pegs. Not only was he continuing to push weight all the way through his legs, but he also manages to pull a peg out as well. His therapist was super impressed because by him combining separate focuses which he is still developing and perform them simultaneously is advanced and impressive. They both are very sad to see Elias go because they have seen so much improvement from him and see so much potential. That was so great to hear. They have made some super suggestions for toys Elias could really thrive with that as they put it make great holiday gifts. We will work on a list of those a get it out to those that have already started asking. Overall, Elias has been doing well and having a great time as much as possible in the hospital. Its amazing that he can continue to develop the way he does here. We are so very thankful for that.

The plan is still to move forward with discharge next week despite the nursing situation still unchanged. There is some hope as they are interviewing 4 nurses today. Hopefully, something will come out of it. It will not be easy, but at least we will be in our own home. As I commented yesterday to Aunt Kathy as she told us to hang in there, “ We are tough cookies and while we might be crumbling a little around the edges as long as the middle stays in tacked we will be just fine. The photo we posted a few days ago is evidence of that I believe. It was very interesting and reassuring to look at that photo from the outside looking in and just see the vibrant love and happiness that is overwhelmingly apparent. Elias truly brings out the best in us!