|This is Eli when he left Atlanta on Friday.|
Same song... what verse are we on? Another day, another hospital room. It is big though, and everybody has been very nice, and attentive. They charge cash to bring the parent's meal with the patient's meal, and I don't carry cash, so I had to leave Eli a few minutes to go to the cafeteria. It is weird to walk familiar halls of a place you've never been. Today was just fluids, and creating his paper
trail, which yielded the find that he needed a hemoglobin transfusion (uuugghhh!!). Chemo - the gift that keeps on taking!! So, he's getting that now. An EEG in the morning, then MRI midmorning or lunchtime. I really like Dr. Aguilera so far. We talked again today about a couple of things - one being a DNR, so that's always a fun conversation, but mainly she wanted to make sure she was writing it up according to our wishes - but she told me that she had done her homework on Eli, had read his history, which is in volumes by now, and was already familiar with him under the name "patient number two" during trial briefings with Dr. Johnson, but she wasn't sure what to expect when she met him. Then when she walked in
the room, and he was sitting on the bed/table playing a video game, got off the table to walk across the room for her, answered her questions (well, within his personality answered her questions), she said, "He is just amazing. What I read, and what I see, it just doesn't match, and I think you are doing a wonderful job with your decision-making." So, I like her, ha! But, she seems like a problem-solver, and that's what we need someone to consider Eli, not his chart. She has started the process of getting some of his tissue to test, and that's not an easy process, we already know. These guys and gals that work in the paper/red tape end of it all just don't realize how important their job is to someone's life on the other end. So, praying for providential intervention in the expediency of the process. Thank you as always, have a restful night!
Someone shared a little social media game where your last text is the title of your autobiography. I checked my phone, and mine would be "Ain't Happenin'" Wow, how perfect! I had texted Vic earlier this morning that they were not able to get Eli in for an MRI today because there were too many emergency MRIs. That is very disappointing for several reasons, but I would not begrudge anyone an emergency MRI - been there, needed that. But that does give us another day of fluids to increase his renal function which we have learned is at 50% naturally right now. This means the MRI folk would not agree to contrast for the MRI if his kidneys can't flush it appropriately, so we risk not seeing everything that is there without contrast. Hopefully, this extra day is yet again a providential touch to get Eli what he needs when he needs it. He is a bit perkier today, with the bolus of blood last night, and he had a little respiratory treatment earlier (just a routine dose of pentamidine that we usually get through the port, but they do it as a mist here) that included albuterol, which, in my
|Brushing our teeth with our tag-a-long|
The name of our autobiography today is “Psych!” Eli’s MRI was scheduled for 3 p.m., ugh! That’s NPO, nil per os, latin for “nothing by mouth,” all day (yes, I had to google it). Thanks to all the fluids, and extra blood, he was cleared for the contrast solution, and was taken back for sedation on time - not general anesthesia, which, after all these years, I learned today are two different things (I know!! But, I never claimed to understand any of it!). I went back with him so that he sees me when he drifts off to sleep via the meds. Their bodies really fight that forced sleep, and I knew that, I’d seen him move a bit at first all the times before, but this time, he was really moving a lot, and his checks were flushing (to be fair, his cheeks flush all the time, either when his body is being invaded, or when somebody talks to him, just ask the St. Jude clinic nurses, he’s a tough read) and I said something to them about watching his cheeks, and him really moving a lot, and they said their usual, “it’s normal, he’ll settle down… come on mom, let’s show you the way out.”
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Eli’s tissue is in the house!! Dr. Aguilera said that she was expecting Eli’s tumor tissue samples today, so praying that testing yields some answers right away. I think some of the testing she wants to do will actually be sent off, so it will be a couple of weeks. If we had a book title for today it would be “Ba-Bam!” Eli had an un-sedated and un-anesthetized MRI this afternoon, and he was lying so still, doing so good that the tech just kept right on going and did the spine, too. So, he did brain and spine awake, took two hours. Thankfully, as a pediatric hospital, they are set up to do movies inside the MRI machine. But, this means we are done in one! Just waiting tomorrow for a shunt setting reprogramming, and some fluids to help flush out the contrast meds, then we will probably be on our way home. He has been in a good mood, playful, and sassy. A new friend brought him one of his favorite lunches, Zaxby’s, for a little treat today, and he was able to pick a toy from the mobile cart, and MRI gave him some Legos. Earlier today, he and I walked around and went to the gift shop. He bought an “Eight Ball”, the ones you ask a question to, and it has a little floating pyramid with an answer on it. He’s always wanted one of those silly things, and he asked it if he was going to get any Legos, and when I overheard him, I said, “I’m not buying any more Legos right now, buddy.” And, then if MRI didn’t give him a little set. He said, “See, I wasn’t asking you.”
We are headed home, or technically at least to Athens. Abbey is still running a pretty good fever, so we are going to delay at least until tomorrow if I can keep Eli away that long. We start the new chemo on Tuesday, but again it is at an extreme lower dose, and without two of the medicines that should complete the treatment. So half treatment at half dose. His blood work is just not recovering like it should in order to have full treatment, or to enroll in any trials still. And his kidneys are not at fully functioning either. But we are thankful for a doctor that will do something for us, and hopeful that these two medicines that he has never had will do something.
Extra prayers this morning as you are in worship. Eli started throwing up during the night, then started seizing. He could not keep the seizure meds down, so we could not get the seizures under control. We brought him to the ER to get meds through his port. He seems stable at this point, was alert before finally falling asleep. We suspect he has a stomach bug, but thankfully he has no fever. Thank you for the extra prayers, he was quite pitiful having to come back to the hospital.
Eli is home, but he is sleeping most of the time, won't talk to us when he's a wake, but he might nod or shake his head, so he is at least responsive. He wont eat, but is drinking for us. The seizures really took a lot out of him. There is no way to know if this was a virus that set it all in motion and the course can be corrected, or if it is the beginning stages of his body shutting down from progression. A short time will tell.