Bath time in our house is a HUGE event. For Gage. Not for me. Gage loves baths, mainly because he only gets them once a week. Then he is only in the bath for like fifteen minutes tops, with no splashing. While during the entire bath I am freaking out, begging Gage not to splash, and telling him to “sit down before you fall down.”
Normally Gage would be able to take a bath for as long as he wanted to, heck I have had to refill the tub with hot water half the time, he can play in the water for hours. That all changed in December when, after careful consideration and tons deliberation Gages doctors decided to take out his port. Because no matter how hard we tried, and how much medication we pumped into him, Gage kept getting candida in his blood. So with fear and trepidation, we sent Gagers back into surgery to remove his port and replace it with a temporary hickman line. Which is a pain in the butt, not only because I have to drive to the hospital every three days to get the dressing changed, because it’s an open site. But also the site can not get wet. Hence the excitement of bath time.
I have concocted my own special, Gage is gonna have a bath dressing. Which involves saran wrap and surgical tape. Poor Kid he hates this, mainly because every bath he gets, I use half a roll of the saran wrap and a whole roll of surgical tape. But Gage gets his bath, the nurses get a clean smelling baby for clinic the next day, and everybody thinks I’m a good mother for making it possible to Gage to bathe; so everybody wins.
I was begging Gage to give me the bucket, since he is on steroids right now I have to ask nicely and make it seem like he totally wants to give me the bucket. Or he might go Linda Blair on my ass, and throw him self backward in the tub, his head might start spinning; and throwing up chemo medicine on me. Come to think of it, he does that when I don’t get his food to him quick enough too. But he did give me the bucket, nice and calm like; and so I gave him an extra fifteen minutes in the tub. Ain’t I just the nicest?
Posted in Uncategorized
Tagged bath time, broviac, cancer kids, candida, chemo, chmotherapy, clinic, CT scan, death, delayed intensification, failure, fear, fun, Gage, healing, hickman line, leukemia, life, live, love, lukemia, maintenance, normal, pancreatitis, panic attacks, picc line, port, sick, surgery, trepidation, trust
Gage started delayed intensification last Thursday. It was a long time in coming, six months in fact. Some days, I never thought we’d get to this point, and now that we are here I am scared of all the complications that can happen. I take his temperature like every hour just to make sure he doesn’t have some random fever. I call is doctors because his cough is back, and oh my gosh is that a rumble in his chest, did the cough move to his lungs? I have an overnight bag packed just in case we have to go to the hospital at the last moment.
The Delayed Intensification “road map” looks like this:
This is what Gage is going to be subjected to in the up coming weeks, he should also be receiving Pegasparaginase (PEG), which is two shots in his legs during week one. But he had the allergic reaction to the last shots of PEG he received, which in turn caused him to get pancreatitis and the ulcers on his pancreas that landed us in the hospital for three weeks before Christmas. So thank you Baby Jeebus, no more PEG shots!
Since starting delayed intensification, Gage has been so cranky. He is on seven days of dexamethasone, and seven days off for a couple of weeks and not only is he getting adorably chubby, since he is eating like a little piggy but he is getting not so adorably bitchy, as well.
His nick name from the hospital is back, we call him Ragin’ Gage. He screams and fusses all day long and as soon as Daddy comes home, he is all sunshine and lolly-pops. I have actually called the Hubs at work, in tears begging him to come home, because there is nothing I can do to fix Gages tantrums. I know it’s the medicines fault that he is acting this way, but after seven hours of screaming fits, all rationalization is out the window. Though the highlight to being at delayed intensification is once we are done with this round of chemotherapy we head into maintenance, which is kind of like the light at the end of the tunnel.
This is what Gage looked like last time he was on the dexamethasone. So cute and chubby! (sorry the picture is so blurry it was taken on my iPhone on zoom)
Posted in Uncategorized
Tagged broviac, cancer kids, candida, chemo, chmotherapy, Christmas, death, delayed intensification, failure, Gage, healing, hickman line, hope, hospital, leukemia, life, live, love, maintenance, pancreatitis, panic attacks, picc line, sick
There’s not much to do in the hospital, we walk laps. Ok, I walk laps Gage gets carried, it doesn’t matter that he has lost four pounds since we first checked in eight days ago this kid still weights twenty-five pounds and he is so heavy! My arms and back are killing me. So we walk laps, Gage rides in the little tykes car for laps, and gets pulled in the wagon for more laps. Laps, laps, laps. So why have I gained three pounds since checking in? I’m doing all the work! When we are in in our room, Gage wants to be held and I don’t mean sitting in a chair rocking him back and forth held, I mean standing and swaying being held. I need a back brace!
On our nightly walk yesterday, I heard a mom who every-time she passed by me should would complain about her daughter having to share a room and how unfair it was, blablabla. Gage has his own room. After our 327th lap I had enough listening to her complain and went back to our room, but left the door open only to hear the same mom say “look a private room, must be nice.” I felt like telling her, I wish we were able to share a room*** no I don’t*** but my kid and every other kid who has their own room all have a terminal diseases! We don’t have that option to share, your kid has a broken arm, not cancer. I know your daughter is in pain and I am truly sorry about her that, but you don’t know what you’re talking about; so shut up. Instead of telling her any of this, I just got up and shut the door.
I’m sorry for not posting anything yesterday, but my wireless card isn’t working, and the nurses took out the computer with Internet access; so I do everything on my iPhone. I fingers, hand, and wrist hurt. I feel like a twelve year old boy.
Gagers is still in the hospital, still no food, the good news is he has finally stopped asking for something to eat or drink. Though two days ago I did catch him just in time as he tried to stick a piece of food in his mouth, from the food cart “empties” ***gross*** Gage is also sleeping better during the night, he just happens to get up at six in the morning so I am exhausted!! No, that still does not give you the right to tell me that if I don’t know you.
As you know Gage had his port taken out on Monday, and it sucks because we our stuck in the hospital, no trips to the outside like I have said before. The absolute worst part? They pulled all of his labs from the port, it’s too hard and scary to try and get blood from the IV in his hand, it can collapse and go bad. Now they need to stick him in his little bruised arms, where the veins are so messed up from seven tries in one arm and six in the other of failed PICC lines. The lab refused to do it this morning, so our nurse ***love her*** took Gagers to the treatment room to use the vein finder, she found one in the top of his hand to use. His arms are safe, for now.
Gages left arm after seven attempts in the last few day to put a PICC line in. Poor kid.