Isaiah has made very little progress over the last several weeks. He is in great spirits; it's just his body that needs to catch up. He has NOT been eating by mouth, and what little feeds he has been getting through his G-tube, he has NOT been absorbing. He continues to dump out into his colostomy bag. The team will tweak what goes into his stomach, and he will do well for a couple of days. But, then his GI system starts to dump the nutrients out into the colostomy. This is what is keeping us here at CHOP. Isaiah cannot come off the IV nutrition (TPN/Lipids) until he is stable enough on either the tube feeds and/or food by mouth. It is very frustrating. All the progress we had made with eating at Good Shepherd is now a moot point. It's as if we were never there. However, we do have 2 small praises and they are that Isaiah's liver enzymes are returning to normal and he continues to gain weight. We take what we can get.
*Tomorrow, Isaiah needs his PICC line replaced. One of the ports was cracked during routine care/cleaning. He must go under general anesthesia. Please pray that the IR team can successfully and safely change out the PICC IV with little problems or resistance. Having the PICC cracked leaves Isaiah wide open to an infection getting into his central blood system. This has been very nerve wracking. Pray that Isaiah stays healthy and continues to remain infection free.*
There are 2 families that especially need God's intervention right now. They have both been given very difficult news this week. Julian, a 5 yr. old boy, has been fighting cancer over the past year and has gone through every treatment available. His body still has cancer. Even though the doctors have not given much hope, God can still do a miracle. The other family has a newborn daughter, Kaitlyn, that has really been struggling to survive this week. She is a tough little girl. Pray for miracles in both of these situations. Pray especially for the parents as this is all very overwhelming and draining.
Of all the stays we have had at CHOP and the Ronald McDonald House, this time has been particularly difficult on everyone. Usually, there are a few success stories with kids going home, which gives us all hope, keeps us excited, and keeps us going. However, we are finding most of us here are struggling with prolonged illnesses, significant setbacks, or must overcome huge physical/health obstacles. We need to see some serious God-intervention.
Please continue to pray for the following children at CHOP: Seth, Maria, Jenny, Fatima, Josiah, Jax, Bailey, London, Eddie, Aiden, Dasha, Taylor, Jonathan, and others. We have had the privilege to meet all of their families, and they are all an amazing group of people. We did see one huge praise when Grace, 4 yrs. old, was able to go home shortly after major back surgery! What an amazing child she is!!!!
Thank you for your continued love, support, prayers, etc. Tired does not even begin to express how we feel. But, your persistent petitioning to God has kept us going. We don't know how much longer we will be here. They keep saying another 6-8 weeks (we've been here almost 6 weeks). This time frame can be shortened significantly if Isaiah's body starts to absorb nutrients and stabilizes. That is our prayer.