Hospital at Home

Hello everyone, just to let you know Michael is in the hospital….at home. Tuesday he came down with a bit of a cough, by Thursday morning he had a fever and a really bad cough. We took him in and they popped him on a steroid and two antibiotics and took blood cultures from his PICC line “just in case”. The hematology ward was full up and a lot of things were going around the main ward so they wanted to try to keep him home if at all possible as we could do aerosals around the clock, antibiotics, etc. but if we weren’t comfortable they would admit us. Michael was a little nervous as he had felt it was so hard to breathe that morning that it scared him, but we agreed to give it a go and if it got any worse we would come back. Friday morning they called and said his blood had come back positive and he needed the big gun antibiotic vancomycin through IV. Since he has the PICC they set up home nursing and IV treatment at home as it’s a rather long game of dosing and growing blood cultures and I can’t say I’ll miss the 9ish days at the hospital we’ve had before with it.

The only downside is that with his coughing so badly I missed being able to raise up the head of his hospital bed. Mike and Katie spent all evening Friday night shopping for a recliner for Michael so that he could sit comfortably in the living room propped up, but while he stayed in it until 5am dosing, he eventually went to his bed. Now we have discussed with Michael and doctors having a hospital bed in his room but Michael was always thrown off by that, so we use a wedge to raise the end of his bed but it could only get it so far. Yesterday morning I was texting my mom that it was rough hearing him cough after laying in the night and that I might need to reaadress the hospital bed or get the motorized bed I saw at Ikea. Well, a mini-texting fund raiser later instigated by my mom and family and friends had put together the money for the motorized bed insert that would fit in his current bed along with a new mattress for it….fast forward to afternoon and Mike ran up to Ikea and by yesterday evening we had it installed and it works beautifully! This morning his cough didn’t have that “drowning” sound that made me so sick yesterday morning and I went in to give him his aerosal and he had the head of the bed up pretty high, much higher than we could have gotten it with props so there is no question in my mind that it helped ease his breathing.

Michael wrote this last night and posted it on Facebook:

Thank you All Who have spent Thare Kind Hearts To buy me This bed.
I may feel Odd and not 100% Well looking.
(Sorry if i did not look Exited Grandma , but I was, just a tad slow) You all put your Money on me And im Very Thankful.
This Bed should make my Life a Lot Better to Be comfortable.
You all Care for Me and Im Happy To hear You All care.

I am not Alone in this world You all Seem to do your best To Help, an That Makes my life easier and safe. Once again Thank you for being all such Good Friends and Family. My Grandmas And Grandpa, Uncles and Aunts, as well as all my Cousins Liittle or big. Like a group of little Girls Who allways want to see me, and have fun and make me Grin and happy at times. You all care Even If i Do not see you Often no mater whare you are in The world. (like one Uncle who Is A Game buddy of mine as well as Perhaps an other Uncle to come.)

And don’t forget all you frainds That have helpd Me, like All you ladys that make my life intresting Yet Fun and Other things. They do call me a ladys man after all lol. my beast frainds And The ladys who seem to Be all over me lol. and at times the embarresseing Moments lol.
no mater How Hard my life Gets i will know that im not alone.

And thank you Mom and dad, You 2 Have Done So Much For me No mater What And Yet im still here, You would not Give up Even as The Others said I would not make it. Yet look at me now. Turning 21 soon And It makes me so proude that you did not Give up on me. If it wernt for you i would prob not make it. yet here I stand.  And you are all ways Close. I love you 2 with all my heart. No mater How painfull Or Miserable i am The Good Days and the Bad Days i just keep Movein On.
And thanks to my parents I got a sister Katie Who Has Cared for me So Much And like my parents She Cares with all her heart and Does her best to not let me Down she cares for me Like so Much others Yet Shes my Big Little Sister and loves me So.
oh and lets not forget my Gardean Angel.
That Cat has been So Close to me Every Time I feel Sick and Down. Hes A Fat Lazy Greedy Cat, But He Is My Fraind as well. Even if Hes just doing that for the food….lol. And My Adoped Birds who in a way i am thare dady.And even if im not Close To The Dog He Seems To Care for m as well. I Belive That Are pets Have A heart To worry and Make Us Happy when they Can.

I have A Throne i have A New Bed. I May not be feelin Grand I may be in a wheel chair and attached to a Machine.
But Im Alive And stand strong in Heart i may not be Perfect i have My Trubbles From these many Years and to think Im turning 21 This Year Shortly.  And Its all thanks To Every One Who Cares.

I echo what he said, thank you everyone who has cared and supported us over the years, we couldn’t have done it without you. Please keep him in your thoughts/prayers, his coughing is pretty bad right now and he is quite shaky, the steroids are agitating him but tomorrow will be his last dose of those and the x3 antibiotics are messing his stomach up but I can’t believe any infection will be able to withstand the onslaught of all of them!

The Good, The Bad, and the Warcraft

I know, bad title, it came to mind and stuck. People have asked for an update so here it goes as best as it can. In many ways its been a typical year, we have struggled with weight, we’ve struggled with pain management, we’ve struggled with sleep issues, and the orcs have been a definite problem all year long. It’s all just gotten bigger, Michael is on TPN which is nutrition that is administered through a permanent IV, but it’s been a struggle to keep weight on him even given this direct nutritional support. We’ve found a zone that we’ve been able to stay in but it’s up and down and we are maintaining a weight that is the lowest since we originally beefed (and I use that term jokingly) him up with the start of TPN. TPN days (every other day) have become a huge struggle as he has started to feel so terrible when on it, sick, shaky, unsteady, extremely tired and lately his face has been puffy by the time we end up tapering it down early. This week we’ve pulled all the lipids out (the fat and protein goodness) and lowered his hours down to what we’ve found he can tolerate (7 hours down from 12 hours), we start it early, drug him, and then get him off around when he wakes up in the afternoon. This is the best we can come up with but it means pushing shakes to buffer the calories he will be loosing. The puffiness they informed us this week is due to his capillaries breaking down, another reason for putting the TPN down and taking out the lipids.

Pain management has also gotten bigger although we have come up with a pill cycle that seems to do the best it can for pain management and not knock him out, we’re up to 15 pills a day and he still has pain breakthrough but on most days it is being…managed.

And the orcs, well, those are much more difficult to manage! We’ve been playing World of Warcraft for a year now, we both have 85 characters (his a rogue, mine as a healer), run a small guild and have slowly sucked a few friends and family into the mix. I wrote this a few months ago for a “post your story” on the Blizzard site:

Nearly a year and a half ago we woke up early in the morning, converged on the hospital with family and friends, and prepared for my son’s spine surgery. Due to years of ill health with a rare syndrome, low lung capacity had caused his spine to start to bow and twist until the spine had pinched his airway to his right lung nearly closed. For a year before was in a wheelchair for anything other than short walks, on O2, getting nutrition through an IV to bolster him for the surgery. Two bags of platelets later and we nearly lost him as his lungs filled with fluid and he struggled to breathe, the surgeons explained that surgery now or ever was not possible.

Five months later, on increasing oxygen, pain meds, and still getting nutrition through a semi-permanent IV now to keep him as healthy as possible to enjoy life as he could, more and more confined to his bed or the couch, my brother (who is living in Mongolia) emailed me with a request: find a game that he and my son could play together online and talk on headphones with. I started digging around and quickly zeroed in on World of Warcraft. After testing it out, I actually had to convince my son to give it a try, he was a console gamer through and through. He rolled a dwarf on my account and messed around with it a bit with some “encouragement” from me and started getting interested. My brother’s internet connection was spotty at best  so it was a bit of a process getting him set up but probably a month later and they were both online, on dwarfs, and running about with their headphones on. Ten months later and my son runs a small guild with a growing list of friends and family, has an 80 [now an 85] and a few alts, and they are still running their dwarves together with a croc as an enthusiastic side tank. My brother has a “batmobile” cellphone that we can text at any time when my son is having a bad day and jumps on day or night to distract him. Last night we ran the streets of Stormwind pushing back the invasion of the elementals and capped the night off with the three of us (and the trusty croc) sneaking our way through Blackrock Depths Prison for a quest.

I know it’s “just a game” to most people who enjoy it to varying degrees, and that people outside of the game cannot understand the draw, but for my son it has been a lifeline that keeps his mind active and his fingers flying. I sit in the living room sometimes when I’m not on with them and hear him yelling to Mongolia over the headset to run this way or run that way or grab that quest. I hear him laughing with his uncle after a bad day or even from a hospital bed and I know that I will always be grateful that the world of Azeroth exists.

Craig has been offline due to some computer issues for the last month and we hope the hiatus is soon to be up because we miss his presence, though it looks like Michael has sucked yet another uncle into Azeroth, this time possibly fighting on the side of the orcs, oh the betrayal!

So, it has been a long year, we do the best we can to cope,  which is sometimes good and sometimes not so good, but despite the pain, and the weight issues, and yes, the orc infestation, we have a great many people who love us and support us and we get by the best we can one day at a time.