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!

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.

**I wrote this for myself and for my dear friends Dee, Sue, and Clarke who are suffering a great deal at the moment, I am sharing it because they felt people need to hear it. I am dedicating this to them and to all the people out there who are suffering silently and alone. Not just people who have chronically ill children, but people who suffer the after effects of rape, or alcoholism in their family, or have an “uninteresting” or “unpopular” disease that no one wants to have a telethon about or even sit down and talk about. It is the loneliness place to be.**

In Buddhism, compassion and empathy are central tenets in a philosophy that calls for Bodhisattvas to rise up and have such great compassion for the world that they give up all hope for moving out of the cycle of life and death because they are willing to stay to help others find enlightenment. In Christianity, Christ becomes the pinnacle that changes a faith from “eye for an eye” to “love thy neighbor as thyself” and his life is a demonstration that compassion and love for yourself and others is a great gift both to give and to receive. While the word empathy doesn’t appear in the Bible, the idea of “fellow feeling” is highlighted which is from a Greek word that means to suffer with another. It is apparent, since two such ancient and revered ways of living are calling for greater compassion and empathy in the world, that humanity tends to be lacking in that area. I personally believe that the instinct for empathy and compassion is innate in all of humanity and that it is something that is either learned out (the great American individualist mentality or “honey, don’t look at him, there’s something wrong with him”) or the instinct is buried by a life that is so busy and overwhelming that we don’t have time to be compassionate unless there is an immediate, specific, and interesting need to rally behind. It’s the long term, drudging call for compassion that is so hard to sustain. So organizations feel the need to produce uncomfortable commercials showing starving children digging in garbage dumps, commercials that are quickly changed by the viewers, including myself. So we send our check out, or in my case, it is automatically deducted from my checking account, to send nets to Africa and to support a child in the Philippines and we go on with our lives. According to my wise brother, in a discussion about Russian literature, Americans have forgotten how to suffer together and while I wouldn’t say it is strictly an American issue, I have to agree.

However, and this is a big however, so perhaps I should go back and capitalize it…HOWEVER, I am not in a position to be neutral about this topic. I am suffering at such a deep level that just writing this sentence literally makes my stomach churn and I am suffering in a silence that feels like a gag order has been placed on me. It is not good etiquette to stand out in the streets (or on the internet) and yell–HEY WORLD, I KNOW YOUR LIFE IS MOVING ON BUT…I AM IN AGONY. It’s considered bad manners to not respond to “how are you” with a smile and a “I’m fine, thank you, and how are you?” And the truth is, if it was only myself, I probably couldn’t break all these social restrictions as they are so deeply imbedded, but I know of other people who are also in agony and who are also feeling silenced by the weight of a world who really, really do not want to know the answer to “how are you” (I love you Sue and Dee). I am not advocating for a world in which every time a person asks the question they cringe as they prepare themselves to hear about how crappy each and every person’s life is, there is a place for social conventions and a place for sharing of agony. Well, I don’t know about the last, is there a place for that? I don’t know where it is. We create “grief support groups” so that grief can be contained in a circle that doesn’t leak out into society, think of the AIDs support circle in the movie Rent with people standing in a circle singing, “Will I lose my dignity? Will someone care? Will I wake tomorrow from this nightmare?” but without the camera wielded by a friend, no one would hear their suffering except those also suffering their same fate. Even among grief support groups we are segmented, cancer support, rape support, AIDs support, multiple sclerosis, adult children loosing parents, and etc., keeping our suffering neatly compartmentalized and contained. I was given a flyer at the hospital as being the perfect support group for me, but when I called, it wasn’t for me because my son doesn’t have cancer. What happens when your private agony doesn’t have an allotted place to grieve, where do we go then?

See a therapist, some would counsel, let’s further contain the suffering in a one on one closed room where we can fix it in anonymity and no one even needs to know. Some might say another option is to the doctor’s to get medication, and I am a great advocate of using both therapy and medication to help where it is needed, but let me be blunt here, and I do not speak only for myself–all the medication in the world is not going to change the reality that my son has a disease that not only cannot be cured, but due to other complications (like a twisting spine and closed off airway) cannot even be treated effectively. All the medication in the world isn’t going to change the fact that he needs oxygen to breathe, that he needs a permanent IV, that he needs nutrition pumped into his veins to support his body and he is STILL loosing weight, that his legs ache and his back hurts and he needs a wheel chair to go to Toys R Us. Medication will not change the fact that the world is celebrating spring and my heart feels squeezed under the pressure of nearly a year since surgery was ruled out and that a ticking clock drowns out the sound of my own heartbeat. Strangely, though, the silence is almost more nauseating than the sound of that clock.

Michael’s PICC line (semi-permanent IV) has held out fine since the beginning of December when we replaced it. The Sorbaview patches that were generously given to us by the company despite not being for sale to individuals have kept Michael’s skin in really good condition. It is still irritating and itchy for him, but his skin is not breaking down and we are very thankful for that!

We were able to meet with Michael’s local pulmonologist whom we haven’t seen since just before the cancelled surgery date. There really wasn’t anything new to learn about that, we all understand the issues of his respiratory status, they upped his oxygen to 3 litres and said it was fine to go up to 4 litres if needed, the next option will be a forced air oxygen that, if I understand correctly, will force a deeper breath when he breathes to get more oxygen. Now in the middle of February he tends to fluctuate between 3 and 4, going to 4 more and more often. Sometimes his sats stay fairly decent, but he has trouble catching his breath between words [especially after being in a particularily hectic video game event ].

Platelets are the other bane of our existence. His G-CSF shots do a decent enough job keeping his white cells in a low but acceptable range, but his platelets just keep creeping downward. When we put the PICC in at the beginning of December he needed a transfusion as they were at 22,000. They popped up to 37,000 for a bit but have been on a downward pattern since of: 37, 37, 30, 30, 27, 27, 17, and 17,000 again this week (the average platelet count is 150-440,000). We have started to see increased bleeding on little nicks and in giving him his shots, but for now we are, as ever, just watching. The problem with platelets are that giving him a transfusion only improves his counts for a short time, the more transfusions you give, you run the risk of making him immune to the effects of the transfusion as well as up his chances of getting a reaction from them–which he has already had in July. The guideline seems to be 20-50,000 transfusion only with bleeding issue or surgical procedure, below 10,000 requires it regardless of secondary issues.

Weight has still been a battle since the third PICC line was placed. Before we lost the 2nd line due to the blood infection, he had found a zone and we maintained it with TPN (IV nutrition) 10 hours a day, every other day. He lost a good deal of weight in the 6 weeks we waited for the more permanent line to be placed (which was cancelled as too great a risk to put him under) and the new PICC line placed. Since an initial weight jump,  we’ve played a walk two steps forward, slide back 2.5 steps game until we are back to his early December weight. Yesterday he was down another pound, but we have a bit of hope as that is down only a pound in two weeks we think because he is finally getting more rest.

Sleep has been a bad and started snowballing into a nightmare the last two months for a combination of reasons, back pain from his back twisting more, leg pain/nerves twitching, probably due to pinched nerves, and the TPN keeping him up going to the bathroom and throwing in some ear ringing to round it off. We tried all kinds of medication combinations, position tries, ice packs, and etc. and we’d get a night of sleep and then back to no sleep for days. It truly was the most frustrating aspect of this whole journey. We can deal with a lot of things, but the cumulative effect of no sleep for Michael and I creates so many problems and makes every aspect of his illness 100x worse to deal with. Thankfully his coordinating doctor, and Liz in particular, never gave up on us showing up week after week exhausted and frustrated and we finally came up with a pill combination that worked the best it could in controlling the back and nerve pain–but we still couldn’t get more than one night in a row of sleep as the TPN kept him up and more aware of the pain and irritation.

The thought of putting his TPN on during the day did come up repeatedly, but it was something that Michael was against. When it is just the oxygen, we can deal with it and get around pretty much as we like, strapping it to his wheelchair. If it was just the TPN, we could deal with that the same way. Having to deal with both the oxygen and the rolling suitcase of IV nutrition just seemed like more frustration that it was worth to him. Over a week ago, I pulled the mom card and we tried it during the day and have done so since then–and he has slept! The combination of the medications at night and not being kept in a light sleep by the TPN has worked wonders–not perfection–but we’ll take it!!

Last week after a few nights in a row of sleep and a new interest in a computer game we are playing together, he was up and walking around whistling and chattering up a storm until I had to tell him to take a breathing treatment. It nearly broke my heart to see him unabashedly happy for the first time in a very long time–I can take a lot, but seeing him beaten down by exhaustion and getting little joy out of life was crushing and left me with a new level of feeling hopeless. I guess the moral of the story, if there needs to be one, is to keep trying and trying and trying and trying–giving up can’t be an option.

We have been very much blessed in Michael’s life with people who have gone above and beyond their jobs–his pulmonologists never flagged in their stance of taking each issue and dealing with it as it came and keeping him alive despite all the odds when he was young. His hematologist came in the picture when he was eight and not only saved his life, but gave him a better life for the next 10 years, and today has taken on all the responsibility of coordinating his care and working to make his quality of life as high as possible. My mother has been  unflagging in her support of Michael, myself, and my family. When I think of the hours she has spent in doctor’s offices even back when she had young children of her own, I am overwhelmed by her love and support. She gives Michael the space to just be and forget about his issues. These are big gifts, and there are many more friends and family who have stood by for years in good and in bad.

Sometimes, however, its a little thing that can go unnoticed in the middle of the big things. The first PICC that Michael had was a nightmare, not because of the PICC itself, but because all of the dressings we tried irritated his skin so badly that just before they pulled it due to skin breakdown, the whole patch would just fall off as another layer of his skin fell off. As a mother, it was painful and frustrating to watch. Just before they pulled it, our nurse brought a different type of patch that another of her patients gave us to try–it stopped the inflammation but it was too late for the skin on that arm, it needed to heal up. PICC number two we started right off with the Sorbaview patch that our supply company was finally able to get a hold of in a small form that we had to piggy back, but it was worth it to keep his skin in better condition.

PICC #3 came and we had two Sorbaviews left to use for the initial placement but due to strange and irritating “rules” we couldn’t even manage to buy them off the supply company due to the fact that a) he wasn’t a patient b) they didn’t have orders c) even if they had orders they couldn’t dispense to someone in a hospital. It’s a PATCH, not something you can sell on the street corner or black market! After a round about frustrating conversation I hit the web, perfectly willing to buy them but again frustrated at being unable to do so. They are being trialed by hospitals at the moment. I really wanted to get my hands on the newer Sorbaview Shield which would let us ditch one more object with adhesive on it (statlock to hold it in place). We didn’t need the statlock as they had stitched it on his skin, but that meant I wanted it VERY secure–I want this PICC to last as long as possible. We HAD to change his patch in the hospital as it was full of blood from the placement and pooled blood breaks down skin but I so did not want to put anything with tegaderm on it and start the breakdown as well–frustrating! Anyway, no luck, couldn’t even buy them. I finally called the company directly and fell in love with Martha.

At first I was told that they couldn’t sell them to the public because they were on trial with hospitals but that she could see about possibly donating some, she was very sweet and gracious and asked some questions about Michael, his health, his reaction to all the other brands we tried and said she would contact someone. Within fifteen minutes she called back saying they would be sending us some! Yesterday we got a box of 100 Sorbaview Shields that will give us almost two years of patch changes! Thank you Martha and Centurian!!!!!!!!!

It seems like such a little thing to write such a long post about, but Michael needs a PICC line, which needs to be kept sterile and safe as possible from infection, which needs to not destroy his skin and cause him pain and frustration. It made my week!

And the nurse just came in and we can do the paperwork and get out of here!

The PICC insertion was pretty rough, and by pretty rough, I mean very rough–he felt like he was in a torture chamber. His first two went quite well, so I’m not entirely sure why this one went so badly. They used the Emla cream (numbs the skin) and were quite generous in using local pain killers but it just wasn’t cutting it and the poking for the pain killers bothered him more than the pain in some ways. To top it off, they sewed it in place and he wasn’t prepared for that–very upsetting to him. His other two were held in place with a thing called a stat-lock that was like a clamp that stuck to his skin and was changed with each dressing change. I see the advantages to sewing it in place as putting it in and out of new stat-locks always resulted in the PICC line coming out little by little–not to mention less things sticking to his skin. SIGH, all in all a very exhausting and terrible day.

Today his spirits have been much improved and he has benefited from the Benedryl IV being out of his system and no more Tylenol 3–not to mention great company and supportive notes and bribes (Craig, you know who you are). It’s difficult to see how the PICC site is doing as it’s a pretty big mess as he bled a bit more than usual due to his platelets being low. We’ll be changing it tomorrow and will see how it looks.

We’re hoping to go home by Thursday, things are looking good for that so far!

Along with his local hematologist we decided to watch his weight and see if we could try to manage without the TPN and if nothing else give him a break without the PICC line. It’s been over 6 weeks now and he has lost an average of a pound a week–a pound in a half in the last week. We saw Dr. P last week and he strongly felt that the PICC should be replaced (PICC lines do not require anesthesia so we can keep putting new ones in when needed every 4-6 months) and the TPN restarted. He felt that the poor nutrition was impacting his respiratory, his ability to fight off and recover from illness, energy, and etc. Michael was very upset about having to have to PICC put back on and understanding that this is something that he will need for the rest of his life. He’s had time to get more comfortable with the idea, but it is difficult for him to accept that this is a long term issue.

Tomorrow we’ll be having the PICC line put in again here in town and then will be admitted to the hospital to ease up to the amount he needs of TPN (we can’t just throw him back on what he was on before, the glucose and etc. can shock the system unless slowly increased). He could be in for up to five days from what we understand.

I know this is all pretty informational, I’ll post a more personal update soon!