Baby Christopher is Home At Last

For those of you who have been following the saga of Baby Christopher and the events before, during, and after his Heart Transplant, this is a further follow up.

For those of you who don't know the 'story' HERE'S A LINK to help bring you up to date.

And for completeness, IF you have not followed this entire series, links to other entries that have been posted will be at the bottom of this page.

Now, with that by way of background, here is the latest:

FIRST: To see the awesome video, posted recently on You Tube, which depicts in pictures and music the first year of Baby Christopher's life, HERE'S THE LINK

NEXT: To read the recent, (Nov.8, 2010), update by Shannon, the mother of Baby Christopher, telling about the first few days of Baby Christopher being at home, here is the 'cut and pasted' update along with this first 'at home' picture.

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Hello Everyone. Shannon here.

“Wow!” is an understatement regarding discharge. I really feel I need a t-shirt that proclaims, “I survived my first week at home with a critically fragile child.” I have been meaning to write but have simply not had a single moment.

Going back to discharge on October 20--it was an exciting day, very busy. Paperwork galore! Every doctor finishing up last-minute instructions. Blood pressure machine coming in two minutes before we head out the door. Oxygen tank packed. Dialysis machine in its suitcase. Bags and bags of meds. Personal items stuffed into a wagon. We were ready.

We rolled out the door around noon and didn’t shed a tear. Two cars were packed to the gills and I was buckling my infant son into a car seat for the first time. After 10½ months I was heading down the interstate to take my baby boy home.

All I could think was, “I’m tired.” So much was swimming around in my brain--Christopher needs this med in the car, he needs his feeds to start as soon as we get to the house, home-health will meet us to set up his feeding pump and get vitals, his next meds are at this time, dialysis needs to start at…

George and I teared up when we drove into the neighborhood. But reality welcomed me very quickly as soon as the cars were unpacked. I stood in the middle of my kitchen and stared down at the countless bags of “stuff” that lay everywhere. Immediately I knew I was totally responsible for Christopher’s medical care yet I didn’t even know where his meds were. The house was total chaos.

Those of you who know me know how organized I am. I literally can’t think when everything is a mess. I am that annoying person who keeps her colored socks in one row and white socks in another. I love organizing my pantry and I consider it a fun day when I can do spring cleaning and toss out lots of unused stuff.

All of a sudden I need to function and get things taken care of quickly for Christopher and I don’t know where anything is. The problem becomes worse because we don’t have any extra space to store all of his medical things.

I muddle through. Sleep was almost impossible and by the third night George and I realized we would have to take shifts. He stayed up until 3 am and then I took over. We both came to covet the sofa downstairs!

Those early days were difficult but we knew they would slowly get better. I would get organized and our family would adopt some type of routine.

Then Christopher’s white cell count was elevated and back to the hospital we go. Little George just cried and cried. “Why can’t I stay with you too?” I cried along with him. To be at home even for a few days--we felt like a family. I was a mommy to three children. Now I was a mommy to one…again…and it hurt, hurt terribly. All I could do was cry out to my Father and plead my desire--my desire to be at home with all of my children, to be a mommy to all three of my children. I could only accept in faith His promise that, “all things work together for good for those who love God.” This situation did not seem good but I could hold my Father to His promise. He would work it for good.

Discharge came again and now we have made it 9 nights together and perhaps a pattern of life is slowly coming into form.

One huge update I need to tell everyone is of another provision--the Medically Fragile Children’s Unit. MFCU is a Medicaid program in Oregon that accepts only a small number of children each year who are very fragile/critical. Every child in the program requires oxygen (a trach, etc). The program pays for at-home nursing care and supplies. We were told from the beginning that Christopher wouldn’t qualify, but thanks to our discharge nurse who pursued this program for Christopher, he is now in the program and we have a nurse six nights a week from 10pm-8am. It is a little different having someone in the house every night but it allows me to sleep and I am better able to handle the family’s needs the following day. Christopher is in the program for six months and then his needs will be re-evaluated.

Christopher seems to enjoy being at home. Elizabeth and little George provide all sorts of entertainment from air guitar off of the piano bench to climbing into his crib to show off lego mini-figures to reading Goodnight Moon to talking in high pitch baby voices just like their mommy does. They love their baby brother…don’t even notice all the tubes…don’t care that he is hooked up to a dialysis machine. It just doesn’t matter. They can’t wait for his first milestones and they are eager to hear his first word and anticipate when he will sit up on his own. Elizabeth smiles about the thought of Christopher pulling himself up on the sofa.

Life is wacky to say the least. I was walking Christopher around the neighborhood the other day and thought, “What a strange life we have” with a nurse at night, tied to the house during the day, only visiting our neighbors outside where Christopher is safe from germs, working around a rigid med and dialysis schedule.

But then again what is life? Jesus Christ told us, “I came that they may have life, and have it abundantly.” We so often equate an “abundant life” with physical blessings--whether that’s an annual family vacation, a nice house, a new car, respectful children, a good job, good health. But God is more concerned with our spiritual life. Our physical life is passing away.

I love Hebrews 11:6, “And without faith it is impossible to please Him, for he who comes to God must believe that He is and the He is a rewarder of those who seek Him.” Through all of this journey with Christopher, George and I have come to the place where we know without a doubt that “He is.” His word proclaims who He is. Our position is faith--to place our trust in who He is.

My life is abundant. And at this time I can be thankful that He is…

Abba, Father (Rom 8:15)

God Almighty (Gen 17:1)

Faithful & True (Rev 19:11)

God Who Sees Me (Gen 16:13)

Savior (Luke 2:11)

Alpha & Omega (Rev 22:13)

Comforter (John 14:26)

Author of Life (Acts 3:15)

Author of our Faith (Heb 12:2)

High Priest Forever (Heb 6:20)

King of Kings (1 Tim 6:15)

Mighty One (Is 60:16)

Eternal God (Deut 33:27)

Everlasting Father (Is 9:6)

Our prayer is for Christopher's health...that he would be free of infection and be able to stay home for a long, long time (especially through Thanksgiving and Christmas for Elizabeth and little George's sake)!

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Again,to see the wonderful 7 minute 55 second video posted on YouTube

which summarizes Christopher's First Year of life in pictures and music --

HERE'S THE LINK

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And, IF you have not followed this entire saga, or wish to review it, for the other entries that have been posted about his progress, in addition to the link at the top of the page, you can CLICK HERE, AND HERE, AND HERE, AND HERE.

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