Tuesday. Where do I start?? Yesterday kinda blended into today as we stayed up all night long!! Riley's pain continued to get worse and worse. It was incredible pain and suffering all night. The doctors tried morphine and it did nothing for him! Even giving him up to a full adult dose. They tried other medications and one relieved his pain for about 20 minutes. I know this because at 2 in the morning I'm watching the clock, thinking, oh, thank heavens! And then, wham, 20 minutes later we were right back where we started. He threw up several times in the night and the pain was so intense. They decided to take him down to the ER to get x-rays. 3 different views of his abdominal area. (A single view x-ray they do in his room, so he doesn't have to leave the unit.) He was in a lot of pain and completely exhausted at this point. We came back to our room and everything we tried did not ease his pain. Our poor nurse, Carla. She tried everything!! The x-ray still showed constipation, but our doctor knew this kind of pain was not right. She knows Riley is a tough boy. ... We are dealing with something else. Even though he didn't have a fever, he didn't show signs of anything beyond the pain and constipation, she decided to start him on 3 different antibiotics. They took a blood culture and we just hoped that would start to ease some of the pain. A few hours later around 5 AM, he finally started to relax enough to fall asleep. The moaning and tossing and turning eased up so I was able to close my eyes too just after 5AM. At 6AM the doctor came in and said that his blood count came back and he was low on platelets. They were going to give him a transfusion now because of the risk for bleeding and the unknown situation in his stomach. At 7:00AM the resident walks in and Riley sits up in bed wheezing. On top of everything else he is having an allergic reaction to the platelets again!! Really?? Our room fills up with doctors and nurses and the RT. My poor boy! Now they need a chest x-ray of his lungs. At least he is no longer in constant pain.
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This afternoon we found out his blood culture is growing bacteria. He has an infection for sure. The fact that it grew within 12 hours is not a good sign. That means it is a pretty bad bacteria. With not much to go on, our doctor made the call last night to start Riley on some very powerful antibiotics, one especially for the gut. I'm feeling very thankful for that decision right now. As they are giving us this news, and talking with Riley and he is doing pretty well under the circumstances... we know that the antibiotics are doing their job. Riley will now have a CT scan this afternoon to look at his bowel area for infection. Where is it?
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In order to do the CT he needed to drink a huge amount of this "berry" flavored drink. They reminded Riley to take his time with it because it needed to "stay down". I knew he didn't want to do it, he was still so tired from our long night and still not feeling well in general. He was incredibly brave and finished the whole thing! We went down to get the CT scan and they needed to put an IV in to add the dye to the contrast of the bowel area. After 2 pokes they found a PICC guy that has this fancy machine (like an ultrasound). He saw that not only were Riley's veins shot from the chemo, but his nerves were right on top of his veins making each poke very painful. He is tough! They got the IV in, did the scan and got Riley back up in his bed. Recover time.
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(Tuesday night.) Riley is so hungry right now. He has not eaten since Monday's breakfast. Up until now food was the last of his worries, but he is starting to feel hungry. Unfortunately we have to wait for the CT results.
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(Tuesday 10PM) Doctor just came in and informed us that Riley has "Typhlitis". A very serious infection. It is inflammation of the colon. This infection is seen in neutropenic patients. It is from bacteria normally found in the gut, but has gone unchecked because of the patients low white blood cell count. Infections happen quickly to neutropenic patients because they have no line of defense and their body does not show the normal signs of infection either. We are very lucky because even though Riley has typhlitis, it is a mild case. We caught it early! If gone untreated it could cause death of the intestinal wall, holes in tissue, damage to other organs. Sometimes surgery is required and there is a 50% chance the patient doesn't make it at all. Scary! We felt incredibly lucky with this news and so the next bit of news was not so terrible to hear. --The treatment for typhlitis is to not eat or drink anything for several days. They need the inflammation to go down before he can put anything in his stomach. Incuding water. All his meds will be IV now except one (because that IV med causes liver damage). He is allowed a small sip of water to get that one down. They will start him on IV nutrition in a few days if the inflammation still is not better by then. For now the IV fluid is enough. Riley was a little bummed not to eat, but it is better than the alternative. We are thankful tonight for good doctors, for the inspiration they received to help our boy. Now we are tired. Ready to get a good night sleep. I have never been so happy to close my eyes, feeling a little peace... knowing that my Riley is doing the same.
Labs today:
White blood cells: .3 (normal 4.5 - 13.5)
Red Blood cells: 11.2 (normal 13.5 - 17.5)
Platelets: 18 (normal 150 - 425) (one unit transfused)
ANC: 15 ( < 500 = severely neutropenic) (normal 2,000 - 5,000)
