Saturday, March 24, 2012


Isaiah is still at CHOP and probably will be there for at least another week. Progress has been moving very slowly. The Cat Scan of his stomach showed no problems with the surgical site. However, it did show that the colon loops abnormally up around and behind the stomach and is filled with a lot of gas (possibly from the new formula). The surgeon has one theory that maybe the gas is making the colon put pressure on the surgical area, which in turn is causing the stomach pain. He has one more scan on Monday to verify that the surgical sites are ok, and then we will move forward from there.

Since Isaiah has been on bowel rest, his pain and retching have decreased significantly, but he still needs to receive pain meds at least twice a day. Also, since not eating or drinking for almost a week, he now wants to eat. Thankfully, his surgeon has allowed him to eat/drink clears. It has been encouraging to know that Isaiah's hunger drive is still present. We have often wondered if he even experienced the sensation of hunger since being on tube feeds for over 2 years.

Here is the tentative medical plan for this week:
1. PICC line placed where Isaiah will receive IV nutrition and fats through it
2. Scan Monday
3. Start on clear foods through stomach tube if scan is clear
4. If tolerates clears through GT, will be advanced to a formula

Our biggest requests are:
1. No infection or sickness for Isaiah--with the PICC line he is at a much higher risk for an infection to get directly into his blood.
2. For safety for us --we are driving continually back and forth between CHOP, home, work, school, and my brother's home.
3. Grace for Josiah--he is continuing to have a hard time being separated from one or all of us.
4. For Isaiah--he is on isolation precautions and cannot leave his room to play. We are all getting a little stir crazy.
5. For Chris and me--In the last 2 months, we have seen little of each other or had time to rest, sit and talk. We have had little time in our own home to recoup and be a family. This is not ideal for a marriage, and we are often fighting against exhaustion, frustration and anger when we are together.

Thank you for your continued prayers and support. Thank you to those whom have come to sit with Isaiah all day to allow us to have a break away from the hospital.


  1. I am glad to know little Isaiah is coming along...tell him Miss Joanne misses him a lot. I had been ill with bronchitis for 2 weeks...lots of coughing and on steroids, antibiotics and flonase...and, am beginning to feel better. Hope to see you guys at HOME on and kisses :)))

  2. Dear Joy,

    When I read this blog post today by a grown-up MK, you and your family came to mind. Here's the link.

    I really like reading this blog since I'm raising MKs, and thought you might enjoy reading her thoughts as well.

    Joy, joyinktm-at-yahoo-com