A Taste of Freedom

I have spent most of the day today reflecting on our stay at NYPH. In some ways, the past 4 months (almost) have flown, yet in other ways they seem an eternity. It hardly seems possible that we are about to reach our long awaited goal of discharge. The doctors have informed us that they cannot justify keeping Jonathan any longer. He is making rapid progress and meeting all of their rehab goals so they plan to discharge him on Friday. This is a week earlier than they originally told us, so we are working hard to get him ready. After spending so many weeks in the hospital, discharge is not a simple process.

The plan is to bring Jonathan home to our apartment in NYC. The big issue to settle is his special Clinitron bed, believe it or not. He must stay on this bed for sometime to relieve the pressure on the fragile grafted areas. We should know more tomorrow about the bed dilemma. It is our fervent hope that before long we will be coming Nashville. Your prayers and ours have once again been heard and answered as it seems insurance will actually allow us to bring Jonathan home soon. All that remains is working out the details of his medical care.

On Sunday, Jonathan and I obtained what they call a "Day Pass" which enabled us to actually leave the hospital for several hours unaccompanied by a hospital employee. The emotions ran high on several levels as Jonathan donned his new outfit for our outing. I know I am partial, but he looked so wonderful to me-handsome and healthy, if a little thin. Jonathan's good friend Andrew Fenet arrived just in time to join us and his presence eased our nervousness greatly! We had a wonderful time strolling down 1st Avenue, eating brunch, and introducing Jonathan to our little apartment where we assume he will be going when discharged. It was a little tricky getting the wheelchair down our narrow hall and into the apartment, but we made it. Jonathan and I spent a couple of hours just relaxing at "home." To be honest, I am not really sure either one of us knew quite what to do with all of this normalcy. I do think this little taste of freedom helped us all feel a little more comfortable about him being released from the hospital.

Although we are thrilled to be at this point, being released is unsettling for many reasons. I think early on I had envisioned that when we finally left the hospital Jonathan would be well. Unfortunately, this is not the case. He will require a great deal of home nursing care and ongoing therapy for the grafts and HO. He also needs to gain weight and just regain his overall health and endurance. The bottom line is that it is a little scary not to have the security of the nurses and doctors who are there around the clock to take care of Jonathan. Regardless, the day we walk out of the hospital will be a day of rejoicing. I sense that all of you faithful blog followers will be rejoicing with us!

It has been a lonely few days with Megan and Nicole in Nashville and David unable to join us due to business, but we have been blessed by visits from friends-several all the way from Nashville. I cherish even these lonely times as I get to spend them with my son and reflect upon the joy he has brought to my life. I will never forget how close we came to losing him.

This whole experience makes me want to draw my children close and never let them go, yet I know it is not in my power to protect them. It is God who protects-we can't live our lives in fear. He has not promised us a life without suffering, but He has promised to sustain us through that suffering. I am pretty sure that I don't really understand this, but for now I am just trusting that He will.

Since we will be leaving soon, Jonathan's address will be changing once again. At this point, the new address will be:

410 E. 74th Street, Apt. 4F
NYC, NY 10021

If this changes (meaning we will be in Nashville) we will let you know!

Keep Praying,

MOM