I know you are sitting on the edge of your seat, with bated breath, wondering what is going on with Isaiah. Well, we are finally moving in the right direction towards discharge. So far, Isaiah has been tolerating his new tube feeds without pain or retching. He still has periods of gas, but no where near the amount he did with the initial formula. He continues to take a few bites of his meals, but no more than 7 bites at a time. Unfortunately, he has yet to move his bowels without any assistance. He will get another x-ray of his abdomen today to make sure he is not backed up again with poop. If Isaiah tolerates his bolus tube feeds today with his overnight continuous feed at full strength/volume and his x-ray is ok, he may go home tomorrow.
Once he is stabilized and healthy, we will try to send him to Good Shepherd's feeding clinic in Bethlehem. He continues to have many issues with textures, a hyperactive gag reflex, and trouble with biting/chewing/swallowing foods. But, the clinic is still a ways off as of right now.
A new issue arose this admission. Pulmonary did a CT scan of his sinuses to see if there were any abnormalities due to the fact Isaiah has had many lung/sinus/ear infections since birth. What he found was that Isaiah's 3 sinus cavities (4th is still developing) were completely filled with mucous. The doctor doesn't know if this is an acute infection, that has not been affected by current antibiotics, or if this is related to a syndrome called Primary Ciliary Dyskinesia or PCD. You can look up PCD at http://www.med.unc.edu/pulmonary/areas-and-programs/pcd-research-treatment-at-unc. Isaiah will need to come back in the next couple of months to have biopsies taken from his lungs and nasal passages to confirm this diagnosis.
Things to pray for:
1. Continued healing for Isaiah
2. Continued strength and health for all of us.
3. Continued safety as we drive back and forth between CHOP, home, Josiah, work, etc.
4. That we can work out Isaiah's continued care with the state of PA for PT/OT/Speech/Behavioral therapists. Right now, since turning 3, the state wants to cut out all of Isaiah's therapies, except behavioral.
5. That I can return back to work soon--I've been out from work for the past 3 weeks.
We often get asked, "What can we do to help?" Here are some ideas:
1. First and foremost, PRAY!!!! Exhausted doesn't even begin to describe how we feel at this moment and we are totally depending on your strength and your personal relationship with God to carry us through.
2. Gas cards
3. Grocery cards
Once again, thank you to all who have been regularly upholding us up in prayer, or have been helping us out through meals, watching Josiah, and other gifts. We greatly appreciate it. God bless you as you have blessed us.
Have a wonderful Easter remembering the life, death, and resurrection of our wonderful Lord and Saviour, Jesus Christ.