He came home from the hospital on Thursday!

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Posted by Esther on April 15, 2002 at 08:53:03:

In Reply to: Virgil asked about baby Thomas today . . . posted by Lisa and Virgil on April 12, 2002 at 23:37:59:

Thomas came home this weekend!! I had started to give up hope, seing how another week had passed, and Thomas continued to be the most popular, and
longest residing, of patients on the pediatric ward. He just passed the
half-life point, having spent more than 6 weeks on both the inside and the
outside of the hospital. Then they said he could go home! They gave us home care IV and feed tube equipment; now I have a pole with tubes that beeps at me constantly!

So cute - we took him for a "walk" outside to see the turtles on Sunday. He looked in wonder at Chanel on the grass, while I held him and my husband pushed the IV pole.

He steadfastly REFUSED to go to sleep for a nap or for the night until he just got desperately exhausted from all the newness of everything, and just passed out. I think he thinks that he napped at the hospital and woke up in heaven, an oasis of stimulation, and didn't want to fall back asleep lest he wake back up in the hospital!!!

His IV pole kept me running ragged all night; it beeped ceaselessly and made me crazy. I miss having the nurse call button, I am ashamed to say!!

Around 5:45am today, after I had reset his dosage, measured, primed and hung the new bag, put in the meds in the med port, flushed the his chest broviac central line and then his feeding NG tube and washed the old feed drip bag, that machine quit beeping. I literally woke up, threw on some old maternity clothes, and jumped in the car for work. . . .! But it is a pleasure and a privilege to wake up and roll over to see such a beautiful, brave and inspirational baby. My son. I am so proud of him. He is a little angel, a miracle. I still can't believe he is home.

Thank you for all your thoughts and prayers. I am eternally grateful.

The remaining problem is to develop the capacity to receive by
mouth the full nutritional value needed to remain healthy, and he hasn't
reached that stage yet. There are no major setbacks, it is just taking this
long to develop his GI track enough to support the full load.

I am now on my 4th week back at work, doing the standard required
45 hour work week plus 45 minute commute each way, and is doing well
in spite of significant overload. I can only sign on to Kingsnake from work, since every home hour is spent either taking care of Thomas or working to get the new/old house remodeled and Thomas-safe.

Follow Ups:

Wonderful! Welcome home Thomas! Lisa and Virgil 04/15/02 (1)
- Thank you! Esther 04/15/02 (0)

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: Thomas came home this weekend!! I had started to give up hope, seing how another week had passed, and Thomas continued to be the most popular, and : longest residing, of patients on the pediatric ward. He just passed the : half-life point, having spent more than 6 weeks on both the inside and the : outside of the hospital. Then they said he could go home! They gave us home care IV and feed tube equipment; now I have a pole with tubes that beeps at me constantly! : So cute - we took him for a "walk" outside to see the turtles on Sunday. He looked in wonder at Chanel on the grass, while I held him and my husband pushed the IV pole. : He steadfastly REFUSED to go to sleep for a nap or for the night until he just got desperately exhausted from all the newness of everything, and just passed out. I think he thinks that he napped at the hospital and woke up in heaven, an oasis of stimulation, and didn't want to fall back asleep lest he wake back up in the hospital!!! : His IV pole kept me running ragged all night; it beeped ceaselessly and made me crazy. I miss having the nurse call button, I am ashamed to say!! : Around 5:45am today, after I had reset his dosage, measured, primed and hung the new bag, put in the meds in the med port, flushed the his chest broviac central line and then his feeding NG tube and washed the old feed drip bag, that machine quit beeping. I literally woke up, threw on some old maternity clothes, and jumped in the car for work. . . .! But it is a pleasure and a privilege to wake up and roll over to see such a beautiful, brave and inspirational baby. My son. I am so proud of him. He is a little angel, a miracle. I still can't believe he is home. : Thank you for all your thoughts and prayers. I am eternally grateful. : The remaining problem is to develop the capacity to receive by : mouth the full nutritional value needed to remain healthy, and he hasn't : reached that stage yet. There are no major setbacks, it is just taking this : long to develop his GI track enough to support the full load. : I am now on my 4th week back at work, doing the standard required : 45 hour work week plus 45 minute commute each way, and is doing well : in spite of significant overload. I can only sign on to Kingsnake from work, since every home hour is spent either taking care of Thomas or working to get the new/old house remodeled and Thomas-safe. :

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