The Worst Day of Our Lives
The medicine that Nathan's doctor's have been using to address the clot are not working - the clot seems to have stopped growing since Friday, but at its size continues to consume all of the blood products that Nathan needs for his body to break it up. It is also infected, so they are unable to clear the staff infection from his blood. To continue with this approach means we would simple watch Nathan deteriorate over the next two weeks as the infection begins to impact each of his organs and body systems.
Surgery is not an option yet because the risks are too high. In Nathan's condition - so premature, all organs and body systems underdeveloped and having this infection - the mortality rate is 70%.
The "middle ground" also comes with high risk. It took discussion all day yesterday and a call to the top cardiologist for dealing with clots in the world to determine the best course of action and all the doctors involved admit we are in uncharted territory. They plan to give Nathan very low doses of TPA - a "clot busting" medication that will hopefully begin the work the body has been unable to do. This medication can cause a major bleed anywhere in the body. We already know that Nathan has a very small, perfectly normal for preemies, bleed in his brain. The biggest fear is that this bleed would be effected and by the TPA. A massive bleed in the brain is a possibility. Nathan's team will monitor his body with head scans and heart ultrasounds every few hours as they give the TPA. The hope is that as soon as the medication begins to decrease the size of the clot the antibiotics will begin to work and the infection will clear up in a few days. With the infection cleared all prospects look better and the body can hopefully take over the work of the TPA.
So today they do one last round of scans and then begin the new medication. For us it will be a lot of sitting with Nathan and praying.
More Waiting
After careful consideration Nathan’s care team determined that before they could begin the TPA (clot busting drug) they needed to give him a central line. Nathan will need so much support in the form of blood products, antibiotics and other fluids while on TPA that he would need 6+ IVs to get everything into his body. There is no way his veins could support that many IVs, so counter to all medical practice, they put a direct line into an infected body. This line is sure to become infected itself, but it will get us through the TPA treatment.
When we learned about the line we understood, but were devastated. It’s another delay in starting treatment for the clot and it was another very risky procedure. They called on Interventional Radiology to put in the line since the procedure would be a little less risky than surgery. Being so young and so sick the anesthesia was particularly dangerous for Nathan and there was always the chance that they wouldn’t be able to get the line in. We sat with our parents and clergy friends from Trinity while the line was put in. By God’s grace Nathan came through with flying colors.
Now we have to wait until tomorrow morning for the TPA treatment to begin. The risk of the new line bleeding out is too high in the first 12 hours that Nathan has it and no one wants to start such a risky medication in the middle of the night. So we’ll stay at the hospital tonight and be with Nathan in the morning when he begins TPA treatment. Being with him as the drug enters his body won’t do anything medically, but it will make us feel better.