11/25/2009 update

Rough Day

Not much good news to share today. Last night Chi was consistently having arrhythmias through the night and John and I each were there when they occured at different times throughout the day. Last night he also had a bloody stool and because of that, they stopped his feeds. He missed two feeds (babies are NOT comfortable or happy when they are not being fed). They took some films of his abdomen and noticed some air on his colon, but nothing too abnormal or anything to be worried about. Thankfully they started his feeds again at 11:00 A.M. this morning. He seemed to tolerate it fine, but he did spit up after his 2:00 P.M. feed and then again during the feed where John was at the bedside. With the vomiting when John was there, Chi's oxygen levels decreased greatly (always really scary to see), but they were back to normal range when they suctioned out his ET-tube.

There were a few periods of time throughout the day though where he did seem to be completely at rest. One of our nurse practitioners commented to me that when Chi rests, he seems to truly be resting in the Lord. She's right. There really is no other explanation. For all his little body has already endured, his comfort is from the Lord and the Lord alone. Amen.

Another irregularity that may or may not be a cause for concern has kind of presented itself. When they were initially evaluating Malachi and trying to figure out everything that was wrong with him (before being diagnosed with CHARGE), they sent of a blood sample for chromosomal analysis or genetic testing. Basically, the blood sample is placed on a tray and allowed to grow until it reaches a certain phase of the division process. When it reaches that specific phase, the cells are stained. Then, the stained sample is closely examined to study the chromosome arrangement. Well, the lab was unable to get Malachi's cells to grow and get to that point of the process. If this happens once, the lab just requests a new sample and they redo the test. They have now been unsuccessful with the testing THREE times. I would have much more to write tonight, but I've been spending most of my night googling and searching to try and see if I come across anything that may cause this.

Also, please pray for John and I as we are gradually starting to just be more and more worn out. We are constantly torn between spending time with Emerson and being with Chi at the hospital. It seems like we are always on the go. I would like to think that it will get easier when we are able to bring Chi home, but that will just bring its own set of challenges for us to face. We trust that God is good and that He will be glorified through Malachi and our growing Sharbaugh family.