As promised, this update is brought to you from Curitiba, Brasil. I wanted to say “This update was brought to you commercial free by Verizon Wireless,” but we still haven’t worked out the advertising deal with Verizon from Eli’s “Verizon checkmark” looking scar from his major abdominal surgery. 🙂
 |
| From |
As expected, it’s difficult for me to be away from Eli for the first time while he goes through his 3F8 treatment, but I know he is in excellent hands. Not only is he with mom, grandma (Lacey’s mom) and little brother, but he has an entire posse of good buddies there right now and has had his favorite Child Life people (Suzy and Jocelyn) helping him out the past two days during the treatment. I have a lot of comfort knowing that Eli has such a great team with him this week, even if I can’t be there. For me, work has been going very well in Curitiba and has been very rewarding so far. I really appreciate the camaraderie with my South American coworkers and of course the weather down here is incredible (77 degrees and sunny with short spurts of rain. My apologies to our Iowan readers, although snow is melting there, so things are looking up!) I haven’t been doing full blown restaurant reviews, but I did post a few pictures of the food I have been enjoying on my website – http://www.hornit.net.
Eli’s 3F8 treatment yesterday was painful as expected, but everything went relatively well. He has continued to have problems with hives in the throat, which is a relatively new development we wish he didn’t have to put up with. It’s no fun for him to get a never ending coughing spell at night. Today Eli had the same amount of pain as yesterday (if not worse) and had 3 ‘rescues’ (of pain medicine to help cope with the pain). His oxygen was low before treatment even started (89%), so Lacey had to keep oxygen in his face the entire time (which he does NOT appreciate). Also, Eli’s hemoglobin was 7.8 this morning so they gave him some red blood. We hadn’t had any transfusions for a while, so at least we held off this long. Dr. Kramer stopped in and was happy with his counts overall.
Lacey wrote this about his 3F8 treatment yesterday:
“Yesterday while working with Suzy, he did an amazing job of breathing and telling us EXACTLY what he needed. Suzy and I were talking afterwards and both agreed that he could be the first male lamaze teacher. He performed the perfect combination of chants, screams, rocking requests, and just general coaching. It was very easy to tell that he was in an extreme amount of pain. At all times he seemed perfectly in control of what he needed to do to deal with it. At one point I think he almost moved Suzy to tears. He opened his eyes really wide, looked at me, and said “you would take this pain for me mommy, if you could, right?” I must admit that there MIGHT have been a tear in my eye at the time but I am not going to admit it to Eli. I am determined not to cry for him because he doesn’t feel sorry for himself.”
I realize it can be a bit depressing to constantly talk about how painful Eli’s treatments are, so Lacey provided me with a funny story to pass along as well that is a little more light hearted. Keep in mind, Eli is HEAVILY doped up with pain medication during these treatments to try to help cope.
“He was in the middle of 3F8. His pain was at the highest point, so he was on several doses of dilaudid. He had me chanting the typical “mommy mommy mommy, daddy daddy daddy, Webby Webby Webby” while rubbing his tummy. Jocelyn was reading a book to him, and upon his request holding his right wrist. He was just laying there taking calming breaths on his own. Suddenly, he just stopped with his eyes closed and stuck his tongue as far out of his mouth as he could. He just laid there like that and Jocelyn and I were just looking at each other like, “what is he doing?” He just kept sticking it out. Finally, I was a little worried and asked him what he was doing. He opened his eyes with a look of shock on his face and pulled his tongue back into his mouth. Later when I asked him if he remembered it, he did and he said he was waiting for me to put a pill on his tongue. He was hallucinating because he doesn’t take any oral meds in the middle of treatment. Sometimes very strange things happen in the middle of 3F8. He actually got to enjoy Justin today for a while after treatment. They were so cute worrying and checking on each other. They just understand each other so well. It is very adorable. Eli started treatment before Justin today and I heard Justin coaching him from the other bed and telling him that he understood.”
Obviously we are hoping that the pain will go down a little as the week goes on (of course, we never want it to go away completely because we start to worry that he has developed HAMA again if he has NO pain) and that the treatment will continue to be effective. Thank you for your prayers. We love to hear the stories of people who are still following Eli’s journey after all of this time!
Facebook
Twitter