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.
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.
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 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
I call him Pukey Leukie. Poor kid.
How quickly I have forgotten how loud the hospital is, the constant beeping of machines, doors opening and closing, laughing nurses (who the hell has the energy to find anything funny this late?) the Hubs, louder than usual snores, good God man roll over!! And the beds oy! How could I have forgotten about those? Either too hard or too soft but never just right to fall asleep before midnight.
Oh and if you haven’t already guessed, yes we are back in the hospital, for I don’t know how many more days anymore.
I just know this time it seems so much harder to be here. I have never cried in front of the pediatric nurses here(please don’t let there be a post saying I have, because at this moment I’m having a hard time remembering crying on the fourth floor, third floor yes, fourth floor no) but when the doctor told me Gage may have pancreatitis, and that it is a very scary thing and I brought him in at a good time; they are almost certain it is caused by his chemo vincristine. Which is rare but known to happen, all the nurses say Gage doesn’t know how to follow the leukemia handbook and at this point I couldn’t take it. The doctor gave me more information, and told me what would be going on in the next couple of days and left me to google everything he said. All I can say is damn you google with your easy access and cute google home page having to be different daily; you taunt me daily to see your changes. So when one of the nurses asked if I was OK and needed a hug, I said “no, I’m fine” but I promptly went I to our room called the Hubs and begged him to get down to the hospital I needed him, and sat there and cried with Gage on my lap. I never let Gage see me cry, in fact I try not to cry because I’m afraid I won’t stop.
Now add to my list of stuff to listen to I am straining to hear Gage to make sure he doesn’t start dry heaving or puking up bile. Poor baby, it is so sad. He doesn’t cry, or moan and groan he is such a strong, brave little boy and I cannot wait to see what type of man he is going to become.
****sorry for any of the misspellings or grammatical errors, I typed this on my iPhone.***
Ok so Cali would have sounded better, but since we are already in that state, and we are headed to the hospital I had to work with what I got. Sue me. Yup, Gage woke up super ass early 6:00am and would not go back down, so I bribed him with another bottle of almond milk, which worked for like five minutes, before he was screaming his head off for me to come and get him. Dammit. Ok so we were up for the day, no biggie, we had an appointment at Toyota of Escondido to get maintenance done on my car; a four hour appointment. Shoot me now. Gage intervened though and threw up again, in front of the service guy which had him totally grossed out, and promising two guys to work on my car and he’d have it ready in an hour. Score, Gage can puke all he likes if this is the kind of service we get, next stop DMV!! but anywho, I tried to give Gagers a rice cake maybe get something bland in his tummy, no go; more puke this time dry heaving as I rush to get him over a sink. Nobody should have to clean that shit up. So I called his oncologist, who told us since his ANC was so low this week bring him into the hospital, so here we are. Fun times, I will keep you posted.
After hours of waiting for the surgeons to come out they finally do, Gage survived the surgery to remove his port, I collapse in a pile of tears onto the floor as they tell us, it was close and that they had to preform chest compressions on him twice during the procedure, but he is alive and we can see him soon.
I am the first to see him. Outside of the PICU I hear “has anybody told mom about his teeth?” WTF? his teeth? At this point someone I don’t know who, comes up and tells me; “when we were intubating him his teeth were knocked out. The good news is we don’t think he swallowed them.” I swear to jeebus my first response was “do you know how expensive teeth are? I’m sending you the bill.” and then I’m laughing and crying because they could have knocked out all of his teeth and it would not have mattered as long as he is alive. I can’t hold him yet, but I sit and stare at him listening to the anestheoloist tell me how he let Gage come out of the anestisia by himself, and how he did so good, bla bla bla bla bla the rest is kind of a blur my mind was focused soley on my baby; who hours before was fighting for his life.
During his second surgery Gages body was so bloated and puffy they could not find an vein to get the IV in, so they ended up using the femoral artery in his leg for an IV. Gage also had a chest tube in place to drain the extra fuid from, yuck-o. I felt selfish, hogging Gage from his daddy so I finally left, and went back to Gages room where my sister, brother in law and father in law were waiting for me, (the twin had left to take care of her kids)they told me we would be moving closer to the nurses station, fine by me the closer to help the better.
Gage in the PICU see, do you his SINGAMAJIG?
I’m sorry if the picture is too graphic, but since I tell it like I see it and you keep coming back for more; you deserved to see it all.
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So Gage was supposed to get started on Standard Interim Maintenance, which is the third phase of chemotherapy. I say should have because his ANC (Absolute Neutrophil Count) was 170 and it needed to be 750, so in short we drove an hour just to be told, sorry we can’t start the next phase of chemo today; we’ll see you next monday. Damn.
On the upside two weeks ago when Gage needed a blood transfusion, how normal this has become in our life. Well they put us in the hospital for the transfusion and his pegaspargase(PEG), and of course he has an allergic reaction to the PEG, at first he started to cough, his little face turned bright lobster red, which promptly traveled to the rest of his body; and last but not least the welts all over! Poor kid, cannot catch a break. They dosed him with Benadryl and power flushed is IV with saline to get it out of his system faster.
I promise there is a plus side to this story, at our next doctors appointment they were able to determine that instead of being in the “high risk leukemia category” they dropped him into the standard category which is CRAZY AWESOME!! All it really means is they don’t do the last two PEGs, a vincristine, and the very best news is one less lumbar puncture!! It’s the little things like that we get excited for in this family.
These are Gages’ counts this week:
WBC’s AUTO: 1.0(A.A)
RBC, AUTO: 3.35(L)
HGB: 10.3(L)
HCT, AUTO: 30.1(L)
MCV: 89.9(H)
MCH: 30.7
MCHC: 34.1
RDW, BLOOD: 14.8(H)
PLATELETS, AUTOMATED COUNT: 211
MPV: 7.8
For the most part I have no idea what any of this information means, and my linking it to this page was the first time I have actually read into any leukemia related information; not because I don’t want to know but because I am terrified to know what can really happen or what it all means. As long as I know the basics I’m OK. If that makes me a bad mom so be it, I need to be this way to keep positive, to keep going, to not curl up in my bed and never get out again; besides the Hubs has read enough for the both of us.
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Love Heals Gage 