Eli’s fourth dose of 3F8 is done and in the record books. I know many of you are wondering how the subsequent days have been going. I’m happy to report that the last 3 days of 3F8 have been going better than the first day (although day 2 was probably the worst day yet). As expected, the pain settles in later and later in the process. The intense pain is still very intense, but now it only lasts about 20 minutes, with 25 minutes of less intense pain. They give him the 3F8 through his IV in a 30 minute drip, then they “flush” it with Saline for 30 minutes. Today, we were about 5 minutes into the 30 minute flush before the pain set in! The nurses and Child Life people have been really impressed with how well Eli copes with the pain.
Eli’s new routine once the pain hits is to curl up in Lacey’s lap in a rocking chair and have her hold a cold pack to his head while I rub his tummy with a hot pack and squeeze his arm while he squeezes my thumb. The last few days he has been good about doing some Lamaze type breathing to help, but today he didn’t want to do it for some reason. He is great about telling us what he needs us to do to help him. He usually wants a story to help distract him as well. Yesterday and the day before, he had hives (which is normal and treated with a boost of Benadryl), but today he didn’t have any. Whenever the nurse wants to push some more pain medicine, he tells her no. I don’t think he likes how it makes his “skin feel wrinkly” so he’d rather just grit through the pain. The first few days, Eli’s heart rate would go from 120 to over 180 and he would need oxygen blown in his face to keep his oxygen levels above 96%! Today his heart rate went from 130 to a high of 145 and he was at 98% oxygen the entire time without any being blown in his face (which he despises). Wow.
The next big question is, “So, does he remember everything the next day?” The answer probably won’t surprise you. He remembers everything. However, there is a twist. He doesn’t seem to remember how terribly bad the pain is, because he never once complains about coming to the hospital the next day or when they hook up the 3F8. Either he doesn’t remember how bad the pain is, or he is just extremely tough and knows he can cope with it. The most kickback we get now is when it’s time for him to take his Tylenol by mouth. For all of you parents that told us Eli would get used to taking the meds and it would get better, we’re still waiting. 🙂 However, one praise is that we are no longer taking ANY blood pressure medicine, NO appetite stimulant, and the only thing Eli has to take by mouth is Bactrim three days a week (which can be done via IV while we’re doing 3F8). We haven’t had to give Eli ANY pain meds at the Ronald, he usually just sleeps for a few hours and then is raring to go until late into the night. Usually around midnight I have to say, “Eli, no more talking, I’m not getting you any more to eat, you need to just lie here quietly.” If it wasn’t for that, I have no idea when he’d go to sleep.
I have updated our tentative “Eli Treatment Calendar – http://calendar.elihorn.com” since I know that has been terribly neglected lately. That should give you an idea as to how the next few months will look. It only mentions treatments and not times we’ll be coming home. That will continue to be a case by case scenario, but know that any chance we get to be home for a while, we will be taking!
Click Older for the last of today’s update…