Tuesday, July 20, 2010


Well, we were at CHOP again on July 15th and on the 19th to see more specialists. On Thursday, we left the house at 6:20am and didn't return til 7:15pm, a very loooong day. I am going to try to give you the short version of what is going on.

Isaiah saw Radiology, General Surgery, Pulmonology, Anesthesia, and Diagnostics on the 15th, and Cardiology on the 19th.
1. Radiology: a repeat chest X-ray was done, and his lungs were clear. This is a praise since his last x-ray was abnormal.
2. Surgery: Isaiah is tentatively scheduled for surgery August 4th for a G-tube placement into the stomach for feeds, which would replace the NG tube in his nose. Surgery believes he stills needs the Nissen procedure, but we are desperately trying to avoid that because of all the complications that surround it. He will be hospitalized for 2-3 days post-op, and we will be staying at the Ronald McDonald House again (if possible).
3. Pulmonology: Isaiah has been officially diagnosed with a moderate case of asthma. The doctors put him on 3 new medications and is having him rechecked for cystic fybrosis. The original blood tests for CF were inconclusive for them.
4. Anesthesia: Isaiah is cleared for surgery as long as he remains well and stable. He will have to be closely monitored post-op to try to prevent any apneic/bradycardic events.
5. Diagnostics:This was the most intensive appointment of the day. Dr. Mark was incredibly thorough and found some abnormal lab work that had been missed by other doctors. Apparently, Isaiah's thyroid and vitamin D levels are low. Also, he may have pituitary problems and spinal issues. The abnormalities with the thyroid and pituitary have a direct affect on Isaiah's growth and development. If the docs can not regulate/correct the problems with the thyroid and pituitary, the worst case scenario is that Isaiah will stop growing and developing. This was incredibly difficult to hear. I will find out more this week what the plan of treatment will be for Isaiah. I know he will need more lab work and probably 2 separate MRIs, one of the brain and one of the spine. Dr. Mark wanted to confer with several other specialists---Endocrinology, Genetics, Urology, and Surgery---to determine what would be best plan for Isaiah. Pray for wisdom for them.
6. Cardiology:Isaiah has been having subtle changes on heart monitor that he wears during tube feeds and at bedtime. We went from normal readings, to a low resting heart rate of 50-60 bpm, to now having apneic episodes. Cardiology does not feel Isaiah has anything structurally wrong with his heart, but that part of the central autonomic nervous center of the brain may be causing the changes (i.e.the pituitary). His last EKG was normal. Dr. Boris is curious to see what would happen if all the labs stabilized. Abnormal thyroid and pituitary levels can have a direct affect on the heart as well as other important organs/systems of the body. Isaiah is currently on a 24 hour Holter monitor. I am hoping that whatever episodes Isaiah has been having will be captured by the Holter.
7. Primary Pediatrician: Last, but not least, Isaiah's primary doctor has some concern about the adrenal glands. I called the Diagnostic doctor to let him know. I am hoping that all the doctors can coordinate what tests they need as to not have to put Isaiah through too much.

Well, this is the abbreviated version of the craziness that is going on right now. We need alot of prayer, grace, and wisdom to figure out what's happening in little Isaiah's body. Please pray that everything can be stabilized, and that nothing serious will happen to him. Thank you.


  1. Chris and Joy,
    I am so sorry to hear about Isaiah's health. I check your site weekly for updates. Your family is in my thoughts and prayers. I have asked God to be near you and give you strength and peace during these times.

    Your family has become my inspiration as I await my daughter's delivery in September. Elizabeth Grace was diagnosed with T-18 in March. She continues to thrive and lets me know she is well with each kick. Your family gives me hope that all things are possible through God and our faith in Him.

    I will share your news with Anita Fordyce and her family. Know that you will have another entire congregation praying for you and your family.

  2. Joy,
    How my heart goes out to you and your family re: your little boy. I pray for you all. Please continue to keep me on your mailing list.
    Love to you

  3. A little girl that is a granddaughter of a couple in my church has Russell Silver Syndrome. She mentioned today that her granddaughter didn't want to eat for the first 2 years of life, & was very small - having multiple medical issues as well. It's rare - so it's probably totally unrelated, but it reminded me of what's going on with Isaiah so I thought I'd mention it. Praying for you whenever God brings your family to mind.