Nevan was assigned to room 15 this time, right next door to his special friend. Unfortunately, the fast friends have not played together since their first meeting, when the Drs advised against it because of their compromised immune systems. It has not stopped them from talking about each other constantly and just knowing that he was right next door made Nevan feel a bit better.
Nevan is feeling the effects of the chemo much more now. His moods are drastic and he sometimes gets very sad. He hardly smiles and at times makes no attempt to acknowledge anyone in the room including Craig and I. He spends most of the day eating or staring off into space. It is difficult to watch but we know that when the steroids stop, this temperament will also stop. Nevan has begun to get sores in his mouth as well as pains in his legs. He no longer travels more than a few steps at a time and needs to be held when standing or he will topple over like a toddler learning to walk.
Probably the most physically alarming change (for me anyway) is his weight loss. Anyone who knows Nevan, knows he is of slight build to begin with, but since getting sick has lost about 10% of his body weight. He looks gaunt and emaciated, his spine sticks out and I can count his ribs from the back. His thighs are bony, his hips stick out and he has absolutely no bum left. Nylah, at 2yrs old weighs 12kg and Nevan at 4 and almost a foot taller weighs 14kg. We were hopeful that he would be able to gain some weight because of the fact that the steroids are giving him the appetite of a bear and he literally eats all day and night. But with the stress of his illness and constantly having some sort of pain, he is still losing weight. We decided to give the NG tube another try, this time with a good dose of gravol and a huge reduction in the pace at which he scarfs down his food. Another thing that steroids does is cause food cravings. Nevan's is "Flat Cheese... " Or the processed cheese the cafeteria uses for their egg and cheese sandwiches to be exact. This is NOT a menu item! Nevan must not be the first kid to send their parents 2 floors down for crazy food requests because the ladies behind the counter didn't blink an eye when I ordered "an egg and cheese sandwich with extra cheese, hold the egg and English muffin". Served up with a wink and a smile! Back upstairs I walked with 4 slices of processed cheese on a paper plate.... The first of 4 trips Nevan sent me on in 24 hours! Thank goodness I had the good sense to save some and put it in the nurses fridge because at 3:00am, when the craving hit, all I had to do this time was push the call button!
As I write this, Nevan has tolerated his tube for a record 48hrs! Craig and I bought a stethoscope and the nurses showed us how to check for placement and how to administer meds and feeds. We have also requested that Nevan be put on high calorie night feeds. This is a combination of pediasure and water, pumped in at a very slow pace all night. We hooked him up as he was sleeping to try and avoid his ferocious gag reflex and he ended up tolerating it quite well. We weigh him everyday to see if his weight has fallen any more. So far holding steady....
Nevan was admitted with a fairly high heart rate and the drs and nurses were having some trouble bringing it down. They figured his body was in some sort of pain that they could not pinpoint, so they gave him some morphine to see if it would help. Voila... Down it came! With this last piece of safety in place, Nevan was offered another Day Pass for a few hours. We asked him what he wanted to do and he requested a trip to nana and nanima's house to bake cookies! He was very excited and we were just about to get ready to go, when he spiked another fever; blood cultures, antibiotics and tylenol.... We know the drill now.... and Nana's had to be cancelled. This broke Nevan's heart into a million pieces. Immuno-compromised with a fever is a difficult thing to deal with and he was again in isolation. Nevan became depressed and fell back into a barely responsive state. It took my craziest, silliest efforts to have him crack even the slightest smile after which he got very angry and told me he did not want to be happy! Fair enough.... He has every right to be just as sad, mad, frustrated, scared and nervous as everyone else... More so... and he needs to be allowed to feel this way and process through it. We can't distract the cancer away, so we have stopped trying. We let him be sad for the whole afternoon, allowed to grieve for his own illness, allowed the time he needs to come to terms with these crazy emotions...Many of them chemically induced. When we see even a glimmer of light, Craig and I will pounce on him again.... But until then.. It's his cancer and he can cry if he wants to.
Cute Story of the Day:
Nevan was just waking up from sedation after receiving his Intra-thecal Chemo.
Nevan: "Mommy, there is something strange going on with my Bum.."
Nurse looks at me funny because they didn't do anything to his bum
Me: "oh, he thinks his tailbone is part of his bum"
Nurse: "ahhhh.... Ok"
Nevan: "it must be the bugs crawling around down there"
Nurse: "bugs???"
Daddy: "we told him that he has bugs in his blood"
Nurse: " uh huh... Ok... Well I can't let him go until I am sure he isn't hallucinating. Most kids won't eat, but he needs to show me he can take a drink of water as well"
Me: "Nevan can you take a sip of water for the nurse?"
Nevan: "no, but I can eat some flat cheese!"
Nurse: "ummm ok, Not quite sure what to say here, so I'll just walk u back to your room"
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