It literally dropped from .1 to 0
So we looked into another plan. Neupogen. heres what it does:
http://a4.sphotos.ak.fbcdn.net/hphotos-ak-ash4/s320x320/426732_10150592683688757_17877463756_9175455_1485620104_n.jpg
We have not had to use this as an option before but working w absolutely (and literally) 0 infection fighters it was worth a shot.
Depending on how well it works would determine how soon we go home, on or off antibiotics and so forth. More waiting.
When he was about to receive the Neupogen and another dose of cefapime (the antibiotic he has been receiving intravenously every eight hours since Sunday) soon after we ran into a problem. His port was flushing (going in one way, into his body) but not showing a blood return (this is when they pull back on the syringe that is attached to the tube attached to the needle in his port and that force pulls blood out of his body to show that fluid is flowing both ways like a two way street indicating no clogs or blockage). We couldn't understand it bc there was no sign of swelling or redness near the port site and he had blood draws done earlier that day. And when this has happened for a split sec in clinic we just lie him down or reposition his chest to get the blood flowing in the right direction. These tricks werent working this time. He was getting pissed too. He had complained of his port hurting the night before but we checked into that twice with two separate occasions of blood return checks. He was fine. The only thing that explained that complaint was that when we come to the floor they use a different gauge needle to access him. Clinic uses the precise sized needle for his port perimeters. The one on the floor protrudes quite a bit and we have had to come up w solutions to pad it or the needle moves around on his port site. Picture a nail on a chalkboard effect but without the sound. So we are thinking that after almost 6 days of being accessed he is so much more aware of things at this age that he is feeling every little nudge that needle makes and the tegaderm (huge clear sticker that goes over the site to protect from breathing on, germs, liquids, etc)
does start to loosen up. This dressing is def beat up today. You gotta remember, this is the first time we have had a long stay in which within the 24 hours he was back to his old self and then some and we are waiting for his angry blood to catch up to that. This kid is jumping from the couch to the bed, running back and forth, playing hide and seek behind the curtains and so much more.So the dressings are loosening, additional tape is coming undone. We fixed that by adding another tegaderm over that. So I can imagine w all the activity he has he may have jerked the needle to cause some probs. But we had an option before even thinking about removing the current needle and reaccessing him.
Alteplase http://www.drugs.com/cdi/alteplase.html
Never had to resort to this either but it worked. It came in a syringe, nurse pushed it into his tubie and waited 30+ min. Came back and wallah, no more clog. The neupogen was underway and the cefapime followed. Now we wait to see what counts are tomorrow.
I know this sounds like alot and it is. No doubt stressful but minor compared to other things/reasons our fellow cancer patients are here on this floor with us for this week. Some have been through various surgeries, here for more than 3 weeks and still suffering through alot of unknowns this evening. Scary stuff. Gives me perspective for sure. And as always, I appreciate all your prayers, thoughts, jokes, mini drop bys outside the main doors to give me my fix of meds (thank you K, the mucinex is already working!) or a treat for G. We may be in isolation but some of you have found one way or another to help in anyway you can and we appreciate it. I cannot deny someone the opportunity to give or help when I know it heals your heart just as much as mine along the journey. I understand that now. Countless meals, cleaning and laundry assistance, hugs, shared tears, gifts for not only G but his bros and one unforgettable benefit taught me that more than a year ago! We are blessed, I know I say it alot but it is oh so true.
Other ramblings-
I want something nasty and greasy. Portillos is calling my name. Or Mcds. And after that some sushi and some crazy dessert table. Yes, I emotionally eat-- it is yummy therapy.
I NEED a massage and pedicure. I NEED NEED NEED to shave my armpits, gross! I want a really HOT shower. I want my bed, my boys, my man and a sloppy kiss from Bry. I miss the smell of each of them, You know how no matter how old your kids get they each have their own unique smell that you never forget!? I miss driving. I needed an energy boost so bad today I wished I was outside during that pretty rainy snow tonight letting it whip me in the face no matter how bad it may have hurt. It would have felt so nice and cool on my face. When I ran downstairs really quick to pickup my care package from a friend ( the first or second time in a year n half I felt comfy enough to leave him w a random stranger hospital volunteer , but only bc he was napping) I took a step into the gift shop for peek. I saw two necklaces I really liked ( some talented lady must be renting a spot in the store to get her name out there) and I regretted I didnt have my wallet w me. Tomorrow I just may buy them for myself. I love them chunky unique pieces, especially the ones that catch your eye and pull you in bc of the mood or situation you are currently absorbed in. It is like you are acknowledging in that moment that yes through that item "I guess that is how I am feeling, or accepting of this moment". You know those wierd a ha moments right? Or am I just crazy like The Shining right now, psychopath hallucination like cabin fever?! Talk to me people! It is not time for Red Rum is it?!! Peggy help me out here!
I cannot tell you how many times G thinks of G and c and daddy. He sees a commercial for some toy or game and asks me if he can buy it for T. He also adds that c doesnt need anything bc he is still a baby. He ends his rant (after I have tried to convince him to just put it on his list or that it may be too expensive) with a n interception of my excuses with this beauty , "because you know mom, sharing is caring!" Thank you My Little Pony and Strawberry Shortcake episodes. How can I say no to that logic?! If I could drag that kid into a public place on our way home this weekend I would let him buy whatever for himself and his bros. His heart is huge for such a pint.
I miss going through Ts folder and reviewing his schoolwork. The way Caden pats my back like he's calming me, protecting me when I sing our goodnite song. He pats right in rhythm with my words. I miss alot.
But being here alone with G has had so many great moments. This kid continues to amaze me. The alone time has given me the chance to see more of his talents and interests that get muffled in the demands for attention of 3 boys. So often they are each shrieking to be heard and seen that alone time is so limited, especially when all they seem to crave is time together. A vicious circle. His puzzle skills continue to soar. He is locating apps on the ipad for these magic 75 piece puzzles that he zips through. Im talking like classic artpiece scenes from Davinci, complex pics. He is showing me how strong his memory is. Through conversations it is clear he is an abstract thinker. Thinking outside of the box and needing results and if not at least coming up w his own predictions. There are always options to him, not just one answer is enough. He likes things his way that is for sure. Today he had a coughing fit after running around this room that led to his asthma acting up. He coughed up a wad of spit bc he coughed so hard and it landed on his shirt. I didnt have anymore clean shirts in our bag so I told him he could wear one of my tshirts. You could tell he really didnt like the idea. Our nurse offered to place our clothes in the wash to help out his dilemma. He was over the moon. While the wash was being done he napped but low and behold the first thing he mentioned when he woke was if Nurse C had fixed his laundry. He wanted his Thomas shirt on. He is so lucky he has girlfriends here. I had to laugh inside bc T loves wearing my too small tshirts, its a piece of mama to him.
Even through tantrums and his demands for immediate satisfaction he remains kind, polite and compassionate to the core. I love my guy.
Let you all know how tomorrow goes in the am. Im off to bed. Wild boy finally passed out 20 min ago!
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