10/17/24

Three days ago I signed a consent form for CHOP to do a treatment that has limited FDA pediatric data…a treatment that they don’t use much…This treatment could potentially keep her antibodies from replicating so quickly over the long term. Although the other 4 treatments have helped some, her antibodies remain higher than they should be. There are side affects and risks as there is with about everything they do with Ela. This particular treatment for Ela’s particular case had been discussed in depth from not only her transplant team but also other colleagues at other reputable children’s hospital in the US. Most were in agreement that this treatment was worth a shot. She was supposed to start that treatment this week.

But, the surprise stomach issues started and still continue. The pneumotosis has been confirmed. All antibody treatments have been put on hold. She has intermittent stomach pain, distended/swollen abdomen, and other symptoms. I am thankful that she isn’t in constant pain though. The true cause of this pneumotosis we may never know but they are treating all the probable causes with bowel rest (meaning no eating just IV fluids), another IV antibiotic, adding milrinone back on again, and some of her enteral tube meds are now back through the IV again too. The CICU team said that it is uncommon to see this pneumotosis in a 4 year old. The Dr stated today that Ela is a complex case, that they don’t really know the right answer to her pneumotosis problems…. He said it’s frustrating for them and he understands that it has to be even more frustrating to me. I appreciated his honesty and encouragement to me to continue to advocate for her and to keep asking questions. Everyone is just hoping and praying that the current interventions will allow for the stomach issues to resolve themselves and that at the same time she won’t go into rejection again while being off all of the antibody treatments. Wisdom is needed to know when to try tube feeds and eating by mouth again. This pneumotosis can be very dangerous for her if it doesn’t go away or if it get’s worse.

Ela is on day 3 of no food (although she isn’t hungry which is a good thing right now), she will probably be without food for at least another 2-3 days, if not more. The stomach thing has halted progress on her eating by mouth, her antibody/heart treatments, and her therapy to help with mobility. The prayer is this issue will not become more serious, it will resolve on it’s own quickly, and her heart will stay strong throughout this ordeal.

This week has been a very rough one emotionally for our whole family. Miguel is happy to be with the boys, but at the same time he’s really torn not being here. The boys are happy to have their dad home, but miss their mom and sister. Josiah said something like, “I missed Ela and mom so much that I had one tear come out of my eye. But just one eye, my other eye didn’t have any tears.” (He can be quite funny even in his expression of feelings). Ela keeps asking when she can go to her “casa.” She asks every day when Papa and Josiah are coming to see her.

Sometimes it just feels like we can’t take one more day of all of this. We feel like Paul when he is pleading for the Lord to take away his “thorn in the flesh.” We plead for Him to remove all these ailments and setbacks that continually harrass our daughter and our family. But then comes the reminder in verse 9 of 2 Cor. 12: “My grace is sufficient for you, for my power is made perfect in weakness.” But what boggles me is that Paul’s response is to “BOAST GLADLY” of my weaknesses, so that the power of Christ may rest upon me.” What! How does he do that? Then verse 10 Paul says, “For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.” Wow… We are still learning how to have this response… Oh to have this contentment! Oh to rest in the perfect power and endless wells of grace from our Lord… Pray for this.