Chapter 4

It will probably take me a good 6 months or more of Griffin having no complications before I accept that he's off this rollercoaster we've been on, but it's been 2 weeks since he stopped his antibiotics and he's still not in pain, so I'm ready to atleast write another update. An hour or 2 after I wrote the last update (Chapter 3), I got a call from our home health nurse saying she had received orders to do a blood draw and check his infection levels. If he was back to normal we'd be able to ditch the PICC line and move on with life!!! She came that night and did the blood draw and called me later that night to tell me that he was doing REALLY well and we were ready to stop antibiotics and take the PICC line out! We were so excited! I continued through Thursday because the soonest she could come was Friday morning. It worked out SO perfect because Adam and I had already gotten tickets to go see Superman at the IMAX in Salt Lake for Friday night long before Griff was back in the hospital, so we decided to have my mom babysit and we'd teach her all about how to care for his line and how to hook up his meds, etc. This meant we wouldn't have to worry about all of that! So Friday morning came around and we pulled the line out and I almost felt lost. It was the same feeling as when he got his helmet off when he was a baby. It seemed like there should have been more to it. In any case, we were excited and we packed up to head to my mom's and SLC. I worried all day that blood was going to come gushing out, or something horrible because he was so free that it seemed weird. That night, Adam and I had a much needed break and went to see Superman, have dinner and shop a little with a few friends. It was Father's Day weekend, so we stayed down Saturday to celebrate and then came home Sunday morning (or maybe it was late Saturday night- it's all kind of a blur to me!). Sunday night Griff started complaining that his tummy hurt again and woke up in the middle of the night with a slight fever again. We talked with the dr. and headed back to Primary Children's to see what was going on. This time they had a bed waiting for us and a Cat Scan already scheduled. They decided to sedate him this time around because without sedation it was a NIGHTMARE the first time. It went really smoothly and when he woke up he saw SpongeBob painted on the ceiling and said "whooooooooah, Sssssppaahhnnnnge bahhhhb" (like in slow motion)! It was so funny to watch him. They took up back to his room and when the tall (5'11")  nurse came in to check his vitals he said "WHOOOOAAH Sheeeee'sssss BiiiiiiiiiiG!" :-) We all laughed a little more. They found only a teeny tiny pocket of infection, that they said should really just drain on it's own since he still had the drains in, but they couldn't explain why it was there to begin with since he had the drains. The doctors were all baffled. Dr. Skarda, our surgeon, admitted that he had no idea what was going on. We had the Infectious Disease team come and interview us and discuss possibilities then run tests and they found nothing abnormal. They debated about putting another PICC line in, or doing some exploratory surgery to see if there was something not showing up on the CT scan, but ultimately decided to send us home (after 2 more nights) with Amoxicillin for a couple of weeks. I  was sure he was fine, but people kept putting the idea that maybe he had cancer or some horrible immune deficiency in my head, so I asked him if those were a possibility. He told me that they had already looked for cancer cells and didn't find any in the tissue they removed, and that immune deficiency was unlikely but they can't rule it out until he's healthy. That was a little more comforting to know we weren't dealing with something much worse. A week after we got home again (Thursday night), Griffin started running a slight fever and was throwing up. All along we haven't had any vomiting, so I panicked! I texted Dr. Skarda at 3:30 am Friday and got a phone call back at about 5 that morning. He told me that he still was just baffled and that the only thing he could think of is that in the last surgery he had been a little conservative so as to avoid causing a leak in Griff's colon and maybe missed some of the infection. He told us that the best thing to do would be to do a more invasive deeper surgery to REALLY clean it out and be more sure we got everything. The downside was that there was a good possibility that he could knick the colon and cause leakage which would bring more problems. Feeling like we had no other options, he and I decided we'd do that. He got Griff on the schedule for that afternoon and I told Adam we were going to head down to PCMC yet again. After a few minutes of packing and worrying, Adam asked me if we could wait and see how he did for the day. I called back and asked if we could wait since Griffin had stopped throwing up, but that if he started again we'd head in to surgery. So that was the plan and Adam and I decided we'd rather be close if we did need to take him in again, so we went and stayed the night at his parent's house in Syracuse (about half way between our house and PCMC). That night Deegan and Ritter got sick and started vomiting uncontrollably. Adam followed a few hours later and it continued all night long. It was nuts and there's no way I could have handled it without the help of Adam's mom and dad. We stayed until Sunday when Adam was finally feeling a little better and the throwing up was mostly over. Ritter's ended up sticking around a few more days, but we were glad to know that Griffin didn't need another surgery, for now.  Over that 2 weeks, I was CRAZY paranoid and Griffin never really left the house.  We had a follow up appointment on his 14th day of Amoxicillin which was the 3rd of July to get the drains out. When we were deciding if he was ready to be off the meds, the dr. and I agreed that it would be best to continue through the weekend so that if something were to go wrong when he stops taking it, it wouldn't be the holiday or the weekend with limited staffing at the hospital. He finished out what we had left through Saturday and so far we have had no complications in 2 weeks. Of course, Adam and I still jump every time anything seems off. If Griffin gets extra irritable, we check his temperature. If he walks a little weird, we poke at his stomach to see if it hurts. It's a crazy life being so paranoid, but boy are we blessed that this hasn't become something much worse (knock on wood) or more long-term!

The only pictures of this time frame I have are pictures of Griff's incision which we were sending daily to the surgeon and are too gross to post and  pictures of  the boys' 4th of July shirts, so Happy 4th of July!