Navigating the Medical System: Words & Numbers

I sort of laugh at myself that I am still writing stuff here which I think I'm naively thinking will help someone else. Because so much of it you will likely learn pretty fast if you are involved with the medical system for any length of time, and I wouldn't be surprised if you learn it a lot faster than I did.

But here, again, are my meager "offerings" and maybe they'll be helpful. Or maybe interesting for people who are like I used to be, unfamiliar with all things medical.

First of all, words. I have learned the usefulness of learning to speak "doctor-ese." It might take awhile, and you might feel a bit uncomfortable, but I highly recommend learning the terms you hear your doctors and nurses tossing around. I mean, as much as you possibly can.

You already know one of my favorite words, though it isn't technically a "medical" word. Still, I now ask far more often "Would it be reasonable....?" than "Would it be possible...?" And I smile almost every time I do it, but seriously. Want to amuse yourself amidst the drudgery of hospital life? Play a game. See how many times you can count a word like "reasonable" or whatever it happens to be. Makes me smile (really, in a nice way, I don't mean any harm by it.)

And a new favorite word is now "atypical." Yup. Because it really does make a difference, using this word when I discuss Joel. I was often finding myself saying "Joel's disease is weird, it reacts in weird ways." Or "I find that Joel reacts differently than you'd expect other kids too." Etc.

Then I finally wised up. Now I say something like this: "Joel's symptoms are often atypical because of his PBD." And know what? Doctors take that a lot more seriously. I mean, I can even just hear the difference myself between the sentences. I doubt very much that doctors are even aware of this, but using a word like "weird" does not garner the same respect as saying "atypical." Because atypical means something to a doctor whereas weird is just what the neighbour kid insults your child with. Ya know what I mean? So I swear I see a difference in how they react to what I'm saying depending on how I describe it.

I highly recommend you become quite conversant in medical language. Yes, doctors should speak regular English to you, nurses too. But they are used to doctor-ese. It's their native language, so it's only to be expected that they feel more comfortable with it, and pay more attention and respect to it.

I will also say that to do this effectively, you must NOT be afraid to stop them and ask em what something means. Particularly because the more you speak "doctor-ese" the more they may feel comfortable using it, which means you'll need more explanation. That's not a bad thing though. I find I somehow learn more when I ask them to define something. Makes me feel better about clarifying what they have said and asking further questions, where when I'm getting a "dumbed down" version, I tend to sit quietly and take it in.

The other thing I'd like to mention, is numbers. Yup. Now I am not naturally a numbers person. So when the doctors would come to me and say that some test was "a little high." I'd leave it at that. Accept those words, as opposed to scary and hard to remember numbers. Now, more and more, I ask for the actual numbers that go along with it. Several reasons for this.

First one goes with what I mentioned about words. If you know the numbers to pass along to the next professional, it is just better. It does give them a much better idea if you can say the actually number of the last INR, instead of saying "it was a bit above normal." And, again, you get more respect, for example, if you say "His INR is usually around 1.4, so I feel a bit concerned when you tell me it is now 1.7."

Which leads me to my next point. Numbers are important. Doctors also use them to figure out TRENDS. (Here is another useful medical term. Trending. I use it a lot now too. As in, "It seems to be his INR is trending upward.") And you'll be a better advocate if you know the actually stats. Maybe most of you are already on to that, maybe it is a no brainer, but for a words and not numbers gal like me, it was a bit of a revelation.

Here is an example: When Joel had his second last ACTH tested, the doctors came and told me that "His ACTH was slightly high, but not concerning." I let them go with that. Then I thought better of it, and asked the nurses for his exact number. Which was 30. And tells me nothing. So I then asked the nurses what the normal range was. And they looked it up and told me (because nurses don't know this stuff off-hand, either, but they'd get the info for you.) that normal was 1- 10.

Doctors obviously look at these numbers and stats differently than we do, and sure, they do know more about particular tests. However, when I'm told that my son's reading was "slightly" higher than normal, and normal is 1-10, I'm thinking he's at 12 or 14. Imagine my surprise to find out that he is actually 3 times the upper number of normal!

So I spoke to the endocrinologist. She assured me that she didn't even blink when she numbers upward of 50, and that she barely blinked at 80! She obviously knew something about the test that I didn't. Why would the normal range not be from 1-50, if FIVE times what the normal number is doesn't make you blink??? The world of doctors is a strange, strange place.

Thing is, SHE was satisfied with the numbers she got. Once I knew what they truly were, I was not. I was wondering if the numbers might be TRENDING upwards, for one thing. I was also wondering if the test were still affected by the meds they had given him, and well, to be honest, three times the "normal" might sit well with the endo, but it didn't really sit well with me. I thought that it would have at least been "reasonable" to say we should watch it, maybe retest in a couple of weeks, that sort of thing. So I asked her if it would be reasonable to retest him to make sure if everything really were ok, and to her credit, she was ok with that. It was, apparently, a "reasonable" request.

Which is how the day after Joel's low blood pressure scare, we put him on permanent cortisol replacement, as that ACTH test came back at 118, and 11 times the normal amount is definitely too high.

I still wish that right from the beginning I had paid attention to all Joel's liver tests. Then I'd know more about when his liver numbers were just fluctuating normally, or when they were TRENDING up or down over time. At that time, though, I barely knew my own name and the mere thought of all those incomprehensible number blew me away.

And the last thing I'll say, depends totally on what sort of person you are. Do you (like me) want to know absolutely everything, or would you just rather know things on a "need to know" basis. Because you might naively (as I did) think that doctors will automatically tell you if what they are testing is a fairly serious thing or not, but they won't. Trust me.

When Joel had an ultrasound this spring, to check out his abdomen, I had a vague idea it was to see how his liver was doing, but no one explained to me about varices and the seriousness of the problems in the liver if they were discovered. Not tell much later did I find out.

Also, I knew that Joel's blood was tested for ammonia from time to time, but I hadn't a clue about it. Until I looked it up on the internet and discovered that high levels of ammonia were a very serious condition that would damage the brain and was related to liver function. THAT got my attention. Some people don't want to know. But I DO. I really do.

So now I ask a lot more questions about what even something as innocent as "blood work" is. I mean, I ask em exactly what they are testing for, even when they say its a "general" work up. I want DETAILS, people!

Ok, that was a lot of detail for you, I hope you didn't fall asleep on me! If nothing else, I hope you have learned some useful words to use with your doctor: reasonable, atypical, and trending. You'd be surprised when info like this comes in handy!

Table Talk

A few days back I had an interesting dinner table conversation with Caeden. I wanted to write it down right away, before the details got fuzzy, but that didn't work. So I'll just do the best I can.

I was explaining his memory verse from Sunday School, telling him that Jesus, and God, were our King and that meant we showed Them respect, which is what we meant when we said we "bowed" before them. Caeden replied by informing me that Jesus didn't have a crown and he couldn't see God. So I told him how kings don't have to were their crowns ALL THE TIME, sometimes they could take them off, but they were still the king. I said that one day he'd be able to see Jesus wearing His crown.

And somehow from there we got to him saying how it was too bad we couldn't visit God because we didn't have a space ship. Maybe we should build a space ship, he said, and then we could fly up to visit God. Ah, I explained, that one is really tricky to understand. God isn't in outer space. Or rather, God was everywhere, even here, but we just couldn't see Him, because the way He was here was through another dimension.

Yeah. I said that to my boy. How else are you gonna be able to understand abstract concepts unless you spend a lot of time getting a sense and being familiar with them? So I said that a dimension was really hard to explain, but it meant that God could be right here with us, but we couldn't see Him because He was with us in a different kind of way, called a dimension, or some people might say a spiritual dimension. And he seemed to accept that as a good enough explanation for now, though I'm pretty sure it was way beyond him. Heck, it's really quite a bit beyond me, though I like to ponder on it from time to time.

I also told him that one day we'd all see God, because we'd go to be with Him, just like Joel was going to, only Joel would go before us and meet us there. This made him quite upset, because he didn't want to live somewhere else, he'd miss his house too much. I don't know how he is ever going to handle it when one day we are financially able to move into a house of our own. He's going to be devastated.

Of course, when Joel does actually leave us, he might be pretty devastated too. I can never tell how much Joel is a person that he is attached to, or how much Joel is just a familiar piece of furniture to him. Lately I have sensed a bit of a change in how he relates to Joel, as Caeden is maturing more and more. So it seems that Joel is less a familiar part of the background, and more of a person to him. Either way, it's going to be difficult for him. Even just on the level of that familiar face disappearing suddenly.

And it's going to be hard to know how much comfort it can really give him, the thought that Joel is with God. It brings me comfort, because I've known God for years now, on a much different level than my son, and I know that the God who keeps the angels of little children ever before His face, will take good care of my Joel. But how will Caeden understand Joel leaving the only home he's ever known, and the family who loves him, for an unseen place and a Person he is only vaguely familiar with?

So as these moments arise in the "normal" everyday conversation, I'm trying to talk it over with Caeden a little bit more. The good thing about children is that they are curious about everything and have not yet learnt to be afraid their questions are "stupid."

Good thing. Because there are going to be a lot of difficult situations and concepts to deal with ahead of us. Like how much should we "allow" Caeden to see Joel after he is dead? Should we take him to the funeral? Let him see us put the coffin in the ground? I'm going to take a lot of cues on this from Caeden himself. I don't want to push him into something he's not ready for, but I also don't want to exclude him, or make him feel that what will happen is "taboo" for him, either. That Joel's death was an "adult" thing.

I wish so much that I could give Caeden Joel's health restored to him. So that he could talk with his brother, play with him and fight with him. Mostly just that he wouldn't have to say good bye to that sweet little face that he's gotten used to being around. The little face that smiles when he hears Caeden's voice.

The Dreaded Questions

Ok, take everything I say from this point on with a grain of salt. Yes, starting now, go get your biggest salt shaker and start liberally sprinkling. I'm NOT writing it to make anyone feel bad. There are two questions I hate, and it's not any one's fault for asking them. Because I don't know how else people could be friendly without using them.

I hate being asked "How are you?" And I hate being asked "How is Joel?" Sounds unreasonable, no? I mean, what is a normal person supposed to say who genuinely cares and wants to know. And believe me, I appreciate people who care enough to ask these questions. I'm not sure how they can get the information they want and deserve any other way.

Still, I find them questions that require me to draw in a deep breath. When someone asks how Joel is, it's really hard to answer. Because I'm not sure I know. I mean, it is really hard to assess, generally, how he is. I can say that he's having a good day. I can say that he's having a bad day. Or maybe even make that week, or month. But I'm not really sure at any given time how he IS. I mean, the disease is degenerative. And we have already seen that he is no longer making much by way of advance, things seem a bit heavier in the decline area.

So I'm not sure if they are asking me if he is feeling happy on that particular day. Or if they are asking if there have been any big changes in his health. Are they asking me if I think he's in a stage of decline? Are they asking me for an idea of if he is in the "final stages" of life? Seriously, I don't know. I mean, I'm not sure that I know what you are asking, and I'm not sure if I would know the answer even if I understood the question.

I'd really like to answer your questions about Joel. It's just that asking how he is doing is too general for me. I think people likely like the question for that very reason. Maybe that way they think they are leaving it open for me to tell them as much or as little as I'd like. Personally, I'd just prefer a more specific question. Is Joel having a happy day? Has he been smiling today? Does his health seem stable right now? Any new health concerns? This are all questions I feel that I can answer. But don't feel badly if you don't remember to ask them, or if you are just going to keep asking how Joel is. I know. I understand why you are asking. And I very much appreciate the WHY part of your asking. I just don't understand what you want to know, so if you get a long rambling, confusing answer, or a short brief "good," you know why. I'm confused. :)

And the other question I hate is "How are you doing?" I think I have a better idea of what the answer to the question is, as far as I can assess my own mental, emotional, and physical state much more easily than that of Joel at any given time. But once again, the question is a bit vague. I'm not always sure what the person really wants to know. Are you asking how I'm FEELING, as in my emotional state? Are you asking how I'm COPING, as in am I still keeping my head about water, or am I about to drowned? Is it more like "What have you been up to lately?" Are you asking me how hard it feels right now? (somewhere between a bit tough, somewhat difficult, really hard, and I'm clawing my way up a mountain) Are you asking me if my day has had happy moments?(most days, yes) Are you asking if I'm depressed? (not clinically, but my child is dying so I'm sure sometimes I get a bit down) Are you asking if I have cried today? (yes. I cry at least once every day, but it ranges between a few silent tears all the way up to full out night time or shower time sobbing)

You see, I'm just not sure where to start with that question. I hate to just say "fine." What does that even mean, other than I'm just giving a polite answer? On the other hand, if you are truly asking if I'm about to go nuts, then most days I'd have to say I AM doing fine. By which I mean, no, I'm not having a breakdown today.

I think I might have to implement the good ole scale from one to ten. And then make you qualify it by asking if you what a physical, emotional, mental, or spiritual assessment. So, here is how my scale works. One is the worst and the bottom. Ten is the best, at the top.

So I can tell you that today, emotionally I was at about an 8. It was a good day. Joel was happy and several friends came over for visits. Nothing bad happened. Physically, I would be more like a 5, because I've been pretty tired and I have a cold. Mentally, I think I would also be a 7 or so. I managed my day ok, and my thought life was not unduly morbid or stressful. And spiritually, you also caught me on a good day. I'd say an 8. Because I had a good talk with God. You see? (You really did catch me on a pretty good day. They are not all this good. ;) )That means something, huh? Much more than if I just say "fine?"

Plus, for some reason it is easier to give a number. How am I involves so many things that I am. I mean, in any given day at any given time I might be angry, depressed, happy, confused, wistful, annoyed, sad, ... you get the idea? And it could be a percentage. Like 10% depressed, 20% happy, 30 % sad, and 40% confused (of course, confused, who wouldn't be, feeling so many different things!) It's much easier to give you an averaged number based on the balance of positive and negative emotions, with 5 being a median line.

So, if you ask me how I am doing, you'll understand if I take a deep breath and then just say "ok." It really means I'm doing ok. But if you would like some better information, you just have to get a bit more specific. You can ask, scale of one to ten, how am I feeling emotionally? Or how am I doing spiritually? I promise I will give the number value that best approximates my current state.

I hope you understand I'm writing this in good humour and love. I appreciate people who take the time to talk with me. I'm just trying to let you know why it often seems, when you ask me a simple question, why I'm just floundering around in confusion. I really am. That. Confused. Scale of one to ten, how confused am I? Hmmm. About a 9. ;)

Joy

I am afraid that after my husband reads this blog, he's going to tell me it was confusing. That he didn't really get my point. I think it is just going to be that kind of blog. But maybe, just maybe, something I write here will ring true for you. Maybe you'll recognize what I'm talking about. Or maybe you will just be encouraged. Or even maybe it will make you a bit more curious about God, if you are in a place where curiosity is your first emotion about God. That's what I'm hoping. If it merely leaves you shaking your head in confusion, or wondering if I'm drunk, I apologize for the confusion and can assure you I've had nothing to drink and am still reasonably sane.

C.S. Lewis wrote a book titled "Surprised by Joy." It is one of the few books of his that I have never read. One day I'd like to. I do know that in it he describes how he came to believe in God, how he was "converted" to Christianity.

In it he writes about a longing he calls "joy" in the book, because that is the closest emotion he could find to describe it. It is this feeling, this "longing joy" that eventually leads him to rediscover God (Lewis was at one time a staunch atheist.) I've never read "Surprised by Joy," but I have seen it mentioned in some of his other books as well, in his prologue to "The Pilgrim's Regress" he tries to explain it and calls it "sweet desire."

I know what he is speaking of. I have felt it too. Like tonight. Steve and I were driving into the sunset, on our way to a movie for our date night. A song I really like came on to the radio. I'm not going to bother writing out all the lyrics for you, but some of the lines of the song were like fingertips gently brushing my heart. "Sing a song of Hope... God of heaven come down... just to know that You are near is enough... just to know You and be loved is enough."

And it wells up in my heart, like a cup filling up from an opening at the bottom, until it's pouring over the edges and spilling out of my eyes, running down my face. That feeling. It's so hard to describe. Something so cuttingly beautiful. As sharp and glittering as a diamond saw, but there is no pain, it's a different feeling. Like the beauty and wonder, maybe even holiness, of it just slices through the covering of the soul and lets this wonderful sweet incense perfume liquid well up and out, permeating everything. It's a feeling full of light, music, hope, joy, longing ... such an indescribable mixture. It is so beautiful, it always brings me to tears, and always, I feel the presence of God so strongly in it.

Maybe because in those moments I'm truest in my longing for all that is Truth, Beauty, Holiness... Like my desire for God Himself, my longing for all that is Him is in the purest form my imperfection can make, and so it is that I can best feel He is here, right here with me.

These moments of what Lewis calls "joy" are indeed most often a surprise to me, coming when I'm neither seeking nor longing for them. They are like a much beloved face long absent who suddenly appears before you while you sweep the floor, or stand in a supermarket line.

Though they also are sometimes "called" to me. When I listen to music about God and sing along the truth in the words. Or sometimes just when I sit and think about God and all the truths that flow from Him.

I'm not sure why I am writing this here, except to say that tonight, in the car, the feeling swept over me again. The song of hope. Just to know that He is near, is enough. And I wanted to write about it. Because these moments are one of the things that gets me through. That gets me through all the sorrow, sadness, longing. The drudgery of fighting to slow down death. The pain and anger of seeing one you love suffer. All of that and more. These are the moments, the moments where I am somehow on top of a vast mountain and below a world of beauty and majesty, and joy, yes, joy, is spread out below my feet. A promise. This feeling is a promise, a vast, soaring promise.

These moments are a gift from God. They give me the hope to carry on through it all. The joy which is my strength.

It feels oddly disloyal to Joel to say that I still can feel joy, in spite of what is happening to him. The way he is slowly being lessened. Like a radio frequency slowly being driven out of range. The way his health and his body are slowly carved into fragility. I know that is not the case, but still, in admitting to this joy, I feel like I am being a horrible mother, even though pain and sadness and tears are also my daily diet.

But that is a falseness, maybe a very bad kind of falseness. I want to be true. So I am telling you now that in spite of all the pain, the suffering, the sadness. All the ugliness and dreariness. I still feel joy. Or maybe I still feel "Joy" would be a better way to say it. God is in His universe. Hope lives in my heart. A promise sings through my world. All will be well. Just to know Him and be loved is enough.

Dandelion

On Sunday, we had respite, so Steve and I took Caeden to the park for some end of the season sunshine. On the way there, Caeden gave me his favorite gift: a dandelion. This one had turned from flower to head of fluffy seeds. It was, as he informed me, Perfect. I have received many, many dandelion gifts, sometimes yellow and sunny, sometimes fluffy and delicate. Always presents me with the difficulty of how to later rid myself of it. I usually manage to get it in the garbage furtively and with a lot of guilt,though what on earth I'd ever do with a collection of 152 dandelions in various stages of decay...??

And this dandelion, I was promptly informed, was SPECIAL. It was Perfect! And very beautiful. So I was admonished: keep it carefully, Mommy. Don't blow it, and don't let the wind blow it. This one I was supposed to keep forever.

For my son was applying the lesson I had tried (unsuccessfully, I might add) to teach him over and over again. Treat your things CAREFULLY. Be GENTLE. If you take good care of things, they will last for a long time. If this applies to toys and other household items, why not a dandelion?

Three year olds have no frame of reference, no knowledge or experience that informs them in the sorting of items into the more permanent and the more transitory. They can not differentiate between what is lasting and what is just for the moment.

So my heart sank a bit in me. A sadder sort of lesson to teach my child. I tried to explain to him that some things do not last. We must just enjoy them for the moment we have them. We can not keep them, no matter how careful or gentle we are. No matter how hard we try, we can not keep them long. A difficult and distressing lesson, when applied to dandelions or that other ephemeral childhood object, balloons.

It also made me think of the one thing I desperately wish to keep, but no matter how careful or gentle, no matter how hard I will try, we will not be able to keep for long. My precious, delicate little Joel.

Of course, I tried to put a positive "spin" on the dandelion for Caeden. The seeds that blow off would result in hundreds more dandelion flowers for next summer. (positive only for Caeden, sure the neighbours would see it different!) The age-old truth from the Bible. The wheat plant must die first, to bring forth a great harvest from the seeds.

Yes, true. In this world, at any rate, death is the door to new life, in many different ways. I'm not knocking that. It did comfort Caeden, (key phrase here) a little. And when I think of Joel, it does comfort me a little too. Key phrase: a little.

Some people embrace change wholeheartedly. They can toss out the old furniture and put in new, no problem. Old letters, file em under "G." Moving to a new place? Exciting and stimulating. And why on earth would you leave the wilted roses standing a vase a moment longer? Meet some new people? Let me at em! Can't wait to meet a new face.

Now I'm NOT saying that there is anything wrong with loving new things. It's a good attitude to have. And I'm really not saying that these people don't grieve a loss! Of course they do!

Some of us just seem to love changes more and some of us just seem to cherish the familiar. Both of these are a strength and a weakness. There is also something very good about loving what you have. About holding something dear and doing what you can to cherish it as long as possible.

Like a perfect Thanksgiving Day with Joel. (Not that I was perfect. Put me in a kitchen bustling around and I get pretty bossy. And cranky. Bossy and cranky. I prefer to say I'm feisty.) Joel's day was perfect. He laughed and smiled all day long. He went for a little walk, in his stroller. First one in weeks and weeks and weeks. And he smiled and cooed the whole way. He loved the sounds of his family's voices. He loved all the people and being passed around. It was Perfect.

And I felt the same about the day as I did about the dandelion. I wished I could keep it forever and it would all never end. Sometimes people say that it's better these things don't last. That way we appreciate them more. Don't take them for granted. And we'd get bored or tired of them eventually. There is some truth in that, for there is that human, flawed part of us.

But like I said, some of us embrace the new and even crave it, more than others. Some of us (confession here) will keep an old graying stuffed bear and sleep with it year after year after year until only marriage will make us let it go. Otherwise, I'm pretty sure I'd still be sleeping with that teddy. Seriously.

I don't think that is a bad thing. It's good to embrace the new. That is fearlessness and enthusiasm. But it's good (and I'm gonna argue, even somewhat possible) to love and cherish the same thing for a very, very long time. That is faithfulness and gratitude.

It's a fallen world and we are fallen people. We can not consistently demonstrate fearlessness, enthusiasm, faithfulness or gratitude.

But I'm looking for the day when the imperfect is perfected. When all these things will be possible for always.

Now I am losing precious moment after precious moment. A time that will soon be lost to me forever, the time of loving my son in person and delighting in his joy, in his life. It will be blown away like dandelion fluff in a breeze and there is nothing I can do about that, no matter how much I cherish it, appreciate it, am thankful for it. I can hold every second gently and reverently, but they will still pass and not come back. This is a deep, deep sorrow.

And I'll not apologize for that, of course. One day, the lovely, the comfortable, the precious, the good, one day this will all be found in a place we call eternity. All we have lost, in Christ, will be found many times over. And we will never grow tired or bored. We will remain grateful and faithful. Maybe I'll even find a perfect dandelion there, one with a stem squished by child-like hands. And hear Joel's laughter ringing out.

Less Than Pristine

Wow. Some days I come home from the hospital and need to shower my emotional self, instead of my physical self. A nice, hot, cleansing stream to rain over me and wash off all the emotional garbage I come home with. Have I mentioned (complained) how yucky living at the hospital is?

Today I got pretty angry/annoyed twice. The first time was when I was in the Ronald McDonald house, waiting for a turn on the computers. There was a lady there who was BOTH watching TV AND using the computer. Yup. Seriously. She left her coat on the computer chair and her site up on the screen while she went and sat on the couch as watched TV. When I asked her if she was done with the computer, she said no, and went back. She then proceed to sit on the couch and watch TV until a commerical came on, then she'd return to the computer to use it during the commericals. My blood was boiling, but I restrained myself from making a scene.

Then I got pretty annoyed/angry when I realized that Joel had a pressure sore UNDERNEATH his Tagaderm patch. I removed the Tagaderm to see a huge welt, with a blistered section, just waiting to burst. My blood pressure was going up, but I thought I'd try and be "REASONABLE" (Ha! Favorite word, people!). So I let Elm service know (that's the group of docs and residents that Joel is under the care of) and I let the respirologist who came by know. I asked both of them if we could discontinue CPAP for a night or two until the pressure sore healed a bit. Both groups agreed. Then I had a HUGE second blood pressure spike when the head respirologist spoke to the nurse on the phone and said no way could the CPAP be discontinued. I was starting to get somewhat peeved. I told the nurse that if the pressure sore had broken down by tomorrow morning, I'd be mighty steamed and have some choice words to impart to those in charge.

At the same time Joel was transferred to another ward to make room for someone else in the monitored room. The new nurse and charge nurse took a look at Joel's forehead and said the respirologist shouldn't have made the call without at least looking at his sore. YOU THINK?? (ok, I didn't say this, I just thought it) So they re-checked into it, and by the time we left we had gotten the ok for one night without CPAP to see if that would help. Situation resolved.

But I came home smeared in irritation, dripping annoyance. Bits of anger clung to me and I smelled an aroma of guilt, worry and frustration just rolling off me in waves. I think I stepped in some attitude that had gone a little bad. Then there was this gloppy mix of feeling stuck to me, composed of the feelings I felt others had reflected back on me.

You can imagine being coated in this mess made me feel in bad need of cleansing and refreshing. I just want to wash em all away, until I smell sweetly of relaxation, peace, and warm caring. Aaaah. Sounds good, no?

I think I should sit down and read my Bible, talk to God a bit. Like taking a nice warm shower. Get clean again. And that makes me think of a few verses I ran across a few days back.

Psalm 126:5&6
Those who sow in tears
Shall reap in joy.
He who continually goes forth weeping,
Bearing seed for sowing,
Shall doubtless come again with rejoicing,
Bringing his sheaves with him.

So, I think I have the part about continual weeping down pat. Now let me not forget to take the seeds for sowing. Because I'm really looking forward to the day I come home loaded down with a harvest, but light of heart with rejoicing.

A Recap of the Last Five Days

So much has happened since I last wrote a blog, though I've been updating people via my facebook and my support group. So now I don't even know where to start with it all. So really, I'm going to make a Herculean effort to keep it all to a minimum as I give a brief recap.

Joel was discharged from the hospital at 5:30 on Thursday.

The next morning he developed poops that appeared to be made up of blood. Not bright red blood. Digested, dark blackish blood. I also found blood in his tummy via his gastrostomy tube later in the day.

So I rushed with him to emerg. Steve joined us later. We were admitted late that night.

He had no further poops as they discontinued his food. So on Saturday afternoon they started up feeds again.

Later that night (11pm) Steve and I got a call to say that Joel had another bloody stool. We agreed with the Doc on call that a transfusion might be a good idea, even though Joel was in stable condition, as his hemoglobin was getting a bit low.

At 3am on Sunday morning we got a call saying that Joel's blood pressure had dropped, even with the transfusion, and they had ended up also giving him a couple bags of saline to bring it up to an acceptable level. He was now stable, though his blood pressure was still on the low side.

So Steve and I left Caeden with a wonderful friend, and rushed to the hospital. Joel remained stable, but with a low bp until later in the morning when I convinced the head doc to give him some hydro cortisol. An hour later his blood pressure was really good, square in the middle of ok.

Then later in the day the endocrinologist came to speak with me to tell me that Joel's ACTH from Sept 25th was indeed high enough to indicate adrenal insufficiency and to warrant treatment with hydro cortisol. So permanent treatment with hc was started.

Joel seemed stable, so I went home for the night. And the phone rang again at 3am to say that now Joel's heart rate was very low. Friends, let me just interject for the first time something more that strictly the facts. Let me say that I was now petrified, after a second middle of the night call in a row.

I had a little chat with God, then phoned the hospital back for a further chat with the doctor. They decided that since Joel looked great in every other way (pink skin, good O2 sats, regular breathing, good blood pressure, etc) that the low heart rate was likely due to the hydro cortisol relieving his body of so much stress that for the first time in a while he could really relax and rest, thus his heart rate dipped much, much lower, but his vitals were all still great. He assured me that I didn't need to come in, and Joel was fine.

Today I went in and found Joel to be much, much improved over how he has been for the past few weeks. By which I mean that he was much more playful and a lot less irritable. He didn't' even fuss for his Meckle scan, though he had to lie wrapped up on his back for 45 minutes. I could be wrong, but it seemed to me that the hydro cort had really done something great for him. And though his heart rate had gone up when he woke up, it still was on average about 20 beats lower than I was used to seeing it, but he looked GREAT! And today for the first time in a long time, I felt WONDERFUL. It is such a relief of stress to me, not when Joel is healthy, because he never is, but when Joel is HAPPY!

We still have to clear up the blood in his GI tract. And that might not be something easy to fix. But I can not tell you my relief when we started Joel on the hydro cort. Odd, hey? I'm SO happy and grateful to find out my son has an adrenal insufficiency.

Well, sometimes I do worry about things needlessly. But for awhile now I have really felt like things were not well with Joel. That little mommy spidey sense. And when we brought Joel in two and half weeks ago, I really thought perhaps an adrenal insufficiency was the culprit for some of the things I was seeing.

And even though they kept telling me his cortisol was fine, and even though they told me his ACTH was fine, I just didn't feel reassured. I realize now how much that was stressing me out all this time, the niggling feeling that Joel had an undiagnosed adrenal insufficiency. I am so glad the endocrinologist did not hassle me about checking it one more time to make sure the Dex had not interfered with the results. Because I'd rather be told there is an easily manageable adrenal insufficiency than worry constantly that there is an undiagnosed one that is not being treated.

It's been tough. All these problems, especially when they involved 3am phone calls, sort of force you to glance down into the abyss that is the loss of your child. And it is hard when you feel so much how you don't want your last memories of your child to be him uncomfortable and inconsolable. That he is in so much discomfort that he just wants you to put him down and leave him alone. That you barely saw the ghost of a smile for days and days, or even weeks. That is not how I want my baby to leave this world. But I don't get to choose. And for almost every one of these kids with a PBD, that is the reality. Sickness eventually takes over the good stuff.

If only I could choose, Joel's last day would be spent being held and cuddled and played with, with lots of smiles and laughs. I can not choose. I can only pray that God in His mercy gives Joel as many good days as possible, and that He takes over and takes Joel home without too much suffering.

I'm hoping that one day soon, I feel less tired and stressed out. Because I want to be able to write some things, other than just constant hospital updates. I'm really tired of hospital updates! I'm not sure if it is too much to ask, but I'm still hoping that Joel can come home for Thanksgiving, though when I mentally count up possible hospital days, it looks a bit dicey. One or two more days for a scan. Maybe they can fix the leak then, maybe it will need another day for surgery. (if the leak can't be fixed by surgery, then we get an day to figure out how to cope) I'm guessing after surgery they'll want to monitor him for at least 48 hours, and I don't know how long it would take to get back on a feeding schedule. By my best calculations, it's gotta all take at least 4 days. And let's not get into "worst case scenarios." A friend from the support group was once in hospital for FIVE weeks while they tried to fix a GI bleed.

So, please, everyone - PRAY! I'd really, really, really be so THANKFUL to have Thanksgiving home with my boy!