Tag Archives: Gage

I’m complaing again, sorry

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.

What I see

Gage came out of his port removal surgery just fine. Me I was a complete and utter fucking reck the whole time. We were told it was going to be a quick surgery like 30-40 minutes, thank God because I didn’t have enough Xanax with me to last all day and I was mayor of anxiety-ville. Seriously, I thought I was going to need to be seen by one of the many docs walking by. The third floor OR waiting room is my own personal hell. Oh! and let me tell you what the best part of the 30-40 minute surgery was; it lasted TWO HOURS!!! During that two hours I kept thinking, would they announce a code pink in the OR third floor? How would by tell us Gage didn’t make it? Why he didn’t make it? For some reason my mind didn’t gravitate to the positive, I didn’t see me kissing his cheeks as he woke up, of giving him his first bottle***yes, I know 17 months is too old to have a bottle; I don’t want to hear it*** I didn’t see Troy and I talking to Gagers in post OP. I saw scary things, dark things as each minute passed and nobody came out I saw in my minds the docs coming out telling us they were sorry, and they did all they could, I saw us collapsing on the floor not knowing what to do, I saw us kissing him one last time; I saw that night back in August. Then I saw the docs walk out and say he was doing fine and we could go back now, I almost did collapse on the floor, and then we were kissing his cheeks as he woke up, giving him a bottle, and talking to him.

The best news Gage made it out of surgery and he is doing fan-fucking-tastic, he had no complications with the removal of the port or anesthesia. He did have a problem with the PICC line, his veins are just to small and too deep, so they weren’t able to access him; even with a vein finder and an ultrasound machine. We may be transported to another hospital in the area to try to get the PICC line in or we may try to put it in a vein by his ankle***dry heave*** somehow it seems worse at the ankle. We are not sure what our oncologists want to do yet, all we know is since we have a standard IV in place we are stuck at the hospital, no Christmas parties at the San Diego zoo with the other oncology kids, no Ronald McDonald house party either; I guess I didn’t realize how the port really mobilized us.

Oh and to finish off our day, we were told the pancreatitis is back. No food or drink for Gage for Jeebus knows how long, fun shit; huh?


Gagers after surgery, not sure what the hell is on his arm; but refusing to give up his precious apple juice.

Right now

They are taking Gage in early, in fact we are just waiting for the transport nurse. His new surgery time is 11:00am Pacific Standard time please please please send your prayers, your love and your positive thoughts his way. We love you all thank you!!!

Guess what?

That’s what chicken butt! Ok on a more serious note Gagers is back in the hospital. Old news, you say? Well we are not still here because of his pancreatitis, we are here because of his Candida; so HA! Candida is a yeast infection in his blood, much better then other locations for yeast infections with cottage cheesy discharge ***shudder, gag*** This is not the first time Gage has dealt with candida, he first got it back in August, they wanted to take the port out then but we convinced the docs to give us time; which they did and we cleared his system of the candida. So we thought.
We weren’t so lucky this time the candida is back and we have no more time, they are removing the port on Tuesday December 7 at about 12:00pm pacific standard time. So please if you have a moment at that time tomorrow please stop and say a prayer, send Gagers positive thoughts and your love he will need it. Our oncologists want to leave the port out, and place a PICC line in his arm. It also means we may be in the hospital for a couple of weeks, on fact we it’s a strong possibility we will be here for Christmas. We hope not but if we have to have one Christmas in the hospital in order to have so many more at home with Gage we can accept that.
This morning one of the docs on staff attempted to put the PICC line in. Unfortunately Gage had tinky tiny veins that “float” so it was unsuccessful. Which means that they will have to try again during surgery tomorrow. They will make it an Iv in his arm then they will “thread” ***shudder. Gag*** the PICV line through his arm ***thud, I just passed out*** Gagers also had his first CT scan today, and he did crazy, awesome good on that; slept the whole time. Who cares if he was doped up on benadryl and fentanyl? Don’t judge.


That’s Gagers going into the CT machine, he looked so tiny. He also looked like he wasn’t breathing, ***he was totally fine, I swear*** but it did cause me to have quick flash backs of “that night.” Thank goodness our shift nurse, who I love was with us she was very reassuring, pointing to his chest which was rising and falling in steady rhythm. Kid is gonna kill me, I swear.

Deja-vu

I delivered Gage by emergency c-section, after he was born they whisked him away because his heart rate and blood pressure were dropping. I guess he has always been a fighter. The doctors briefly held him above the curtain, but I couldn’t see anything; so my first look at Gage was about an hour and a half later after post op in my room. The room was tinky tiny, especially considering I was doubling up, fun. So after all of the commotion of squeezing my bed in, The Hubs went to put his bag in the car, because there was no way we’d both fit in our small space tonight. So Gage and I were alone for like five minutes me in my bed he in his, as I sat staring at him the nurse walked in and I whispered; can I hold him?


This is how the Hubs found us. This is something I had completely forgotten until looking through my pictures the other day. After Gages first port surgery as he lay in post op and I sat staring at him, a nurse came by and I whispered; can I hold him?

33lbs

By the time we finally left the hospital the first time around Gage had been on steroids for 28 days, and let me tell you he was too OMG freaking adorable! See…

could you just die? Look at that double chin! Those roly poly arms! I loved it! He is back to his normal size now, but it was so fun to have a super chunk baby for a while.

Differences

When Gage was first diagnosed with leukemia, I had my family bring me clothes to stay in the hospital. Obviously I wanted to be comfortable so I asked for all my yoga pants, no I don’t do yoga; I’m not that bendy. I also asked for all my cute tank tops, makeup, blowdryer, and straightener. I looked totally cute that first week, all done up like I had a yoga class to teach; in La Jolla somewhere. After Gages first horrible port surgery failure, I didn’t give a crap how I looked: and slowly after I while I morphed into the bag lady. I swear to Jeebus I didn’t wear anything with a zipper or buttons the whole month of August and half of September and my yoga pants changed to baggy sweats and vomit stained t-shirts.
This trip to the hospital was again another surprise, but this time I was in town and had to have the Hubs bring me clothes. Noting matches, and I have no socks. Oh and makeup forget about that, but he did brig me my straightener, I can live with just that. But I noticed today on our 638th lap around the halls, that the moms here only for a few days are dresses in jeans, cute tops, and super cute impractical for the hospital type shoes , and I’m rocking baggy sweats, a red fight leukemia t-shirt, a blue sweater type thing the hospital gave me that has a poop stain from Gage but I’m cold so I just roll up that sleeve a little and green hospital hospital socks. Those are the differences between a veteran hospital mom and a novice.


One of the many times Gage puked on me, but the only time the Hubs caught it on film. Oh and yes Gage is looking for a tasty bit of vomit to try and eat.

Sleeping Cutie

So in the last 24 hours Gage has slept for maybe 20 of those hours. So why the hell have I been awake for the last two hours?! I’m tired! But the kid in the room next to us has not stopped screaming/crying since about 4:47am. She is autistic, so I’m sure this is hard on her; but please move us to another room. One with a double bed so I don’t have to sleep on this flippin’ pull out for another night also one that’s not so bright. The first few nights are always the worst for me, I’ll adjust; just let me complain for a bit.
So Gagers has pancreatitis, which the doctors are saying was caused by his asparaginase chemo medication, which we have also learned he is allergic to so definitely no more of that med. Poor kid, hasn’t eaten or had anything to drink since Wednesday night, yesterday doesn’t count he couldn’t keep it down. But with the pancreatitis no food or drink for a couple of days to try and get the inflammation down.
We also had an ultrasound done yesterday morning just to make sure nothing else was going on inside his little tummy that shouldn’t be, also to check out his pancreas to see how enflamed it was; and wouldn’t ya know it the damn ultrasound tech got pictures of everything BUT his pancreas. That’s freakin’ irritating because Gageiepoo did not like laying on that damn table, and I sure as hell hated having to hold his ass down. Lord have mercy, this kids gonna give me an ulcer, I swear. So we got most have Gages labs back, most everything was the same except for his lipase levels normal is around 60 and Gage was 280 so very high. I don’t have access to my laptop right now, or I’d have links for you to follow so you wouldn’t have to read this and have no idea what the fuck I was talking about. Sorry!! He also had ketones in his urine, I mean high quantities of ketone; I got him here “just in time” just in time?! Just in time for what?? We are fast discovering all the fucked up added benefits to leukemia and chemo; fun fun.
Jeebus! His machines just started going crazy, I swear I just died for a second, holy shit balls panic attack batman; I can’t breath. Stupid machines just turned off he is FINE, me I need a 1mg Xanax and a shot of Cazadores.
The good news to all of this is Boots drove down, with Baby to visit us yesterday. The bad news was I was so tired and had a headache I was suck ass company and like I said Gage was asleep all day. Sorry Boots, but thank you so much for keeping me company, I love seeing you both!! More good news, since Gage is sick, my family can’t guilt me into doing things. Trust me the women in my family can guilt like no other, my friends. We also can’t keep secrets, so don’t tell me anything you don’t way to read about on here. But anywho their inability to guilt me, has caused them to guilt the Twin into flying down for Christmas!!! Yeah!! I get to see my niece and nephew!!
I will post later on today, if anything changes for Gage!
XOXO

Thank you

Thank you for reading this blog. You have helped me more then my psychiatrist, two licensed clinical social workers, and an anxiety class put together. Thank you for your prayers, positive thinking and good wishes.You are the best and mean the world to me. Our family loves you more than you will ever know. XOXO


Pictures done by JennBee go check out her awesome website! www.jennbeephotography.wordpress.com

Hospital 12-1-10


I call him Pukey Leukie. Poor kid.