One Step Forward, Two Steps Back

It is 6:50 pm on Sunday night. Dave and I just got home for the first time together in over a week. Aden is in good hands with his uncle Chad so we could get a decent meal and night of sleep to prepare for tomorrow.

Unfortunately this weekend has been overwhelmingly tough for Aden. We spent two hours with his physician today reviewing his clinical symptoms and the plan for his care this week. The new perspective and plan is based upon a second CT Scan completed this morning, as well as a consult with a pulmonary specialist and a surgeon.

The doctor says that this year she has seen far more children Aden's age with illnesses that become complex, requiring extensive and invasive treatments. What Aden and most of these children have in common is that they are STRONG, HEALTHY kids who would not be suspected candidates for this level of illness. This surprised me. She said they most likely contract some form of influenza which morphs into complicated bacterial pneumonia. Of course as parents we question whether we could have done something to prevent this, or that we might have done something wrong to bring this on, but she assures us that this is happening unpredictably to many healthy children she sees this year.

So, we presume Aden had H1N1 or another strain of influenza. Perhaps the illness started even before the Monday we took him to the ER suspecting pneumonia (on 10/12). The doctor notes again and again how tough and strong Aden is, how likely it is that he was ill but just coping with it well on his own.

Obviously Aden was sick that whole week (we thought just influenza), but by the time we admitted Aden to the hospital on 10/18, the doctor suspects he was far more sick than anyone knew because chest x-rays were completed, and they can paint a more optimistic picture than CT Scans. On 10/20 when we arrived at Children's a CT Scan was complete. We didn't see it until today, but I can say that it was deeply disturbing and erased any fragment of a doubt about why Aden has been having so much pain. The amount of fluid in his right lung and the amount of illness there was visible and staggering. BUT, Aden did respond well to the IV antibiotics and his white blood count and the test measuring his response to the antibiotics showed signs of improvement. Chest x-rays each day suggested improvement as well. This is part of the reason the IV was removed Friday - the doctor thought there was improvement, and she thought we could transition to oral medications and start planning for discharge.

However, Aden immediately became more sick - the oxygen in his blood was falling, his fever went up, he continued vomiting and coughing blood, he has had so much pain and he feels terrible. His lab results worsened significantly yesterday, indicating that he very much needed the IV antibiotic he was receiving, so it was re-inserted. We were glad for this because we knew it would better control his pain as well.

This morning another CT scan was completed. We saw that scan this afternoon. I have never been so scared in my life. Aden's right lung is so much worse than it was on Tuesday. I can't even convey how horrible it looked - even to us as lay-persons. There is an incredible amount of fluid there, in addition to an abscess that was not there before, and his body has "walled off" a huge portion of his right lung mass, making the antibiotic difficult to reach the core areas. As it was described to us, this "walling off" is part of a healthy response to infection and illness to prevent it from spreading. The doctor commends Aden's health and strength that his body could do this so thoroughly, but the consequence is that it leaves that area more ill and untouched by medicine, while protecting the rest of his lungs and chest. She explains that his body is so strong and healthy that his labs appeared to be getting better because it was responding to the antibiotic overall , but that the walling off and the undetected worsening severity of the illness in the lung was not obvious because, again, the chest x-rays can seem better as they are not as thorough of a picture as the CT scans. (And CT scans are not safe to do frequently because of the significant radiation). The current course of IV antibiotics are the right track, but the pulmonary specialist and surgeon believe additional measures are needed to get control of the situation.

Tomorrow at 12:30 in the afternoon Aden will be going into surgery. The surgeon will create an incision and go in to flush out that huge mass of affected right lung, take care of the abscess, and drain the massive amount of fluid. He will place a chest tube to allow for continued drainage, and he will place a PICC line, similar to an intravenous port through which we will continue to administer antibiotics even after Aden leaves the hospital. Oral antibiotics are not sufficient, and we have been told that Aden will need these IV antibiotics through the PICC line for about three weeks. I don't know what this means for his home-care, nor for returning to school. Our discharge from the hospital is tentatively hanging out there for the weekend or later, depending on how everything goes.

Obviously this is very disappointing news, particularly in light of the extensive medical procedures, testing, prodding and intense discomfort Aden has already endured for the last two weeks. He takes 95% of it with his usual good cheer, but when he is feeling the worst of the pain, or in the 5% of the time when he has just had it with all of this, he is so weary, begging us to help him, make it better, or take him home. Clearly I'm not stating anything earth-shatteringly new when I note the trauma involved in a child's transition to the knowledge that his or her parents are NOT all-knowing and all-doing... But, it certainly is disheartening when we see in his eyes that he is disappointed in our failure to do all that needs doing, and the betrayal he feels in this new knowledge that we can't save him from all of this. He's seven, and we can't blame him... It disappoints us too.

I'm off to prepare for a night of sleep so we can tackle this new week on a more solid set of feet. We are hoping for merciful relief of Aden's pain, quick recovery, and a trauma-free surgical experience.