Update on Teddy

I kept meaning to update after our last Cincinnati trip in August, but I kept waiting for more… things. But there aren’t more things. Just more questions. More unanswered puzzles.

I’m left rather unsettled and disappointed by our whole trip, to be honest.

Teddy had a sleep study. Yes, in Ohio. The local sleep centers, though initially all “oh, sure, we’ll do a sleep study on a 7 year old” changed their tune after the doctors called in the orders for the study, specifying what they wanted. And though I was pissed about it, ultimately I think it’s ok. I’d rather drive out there and get good, useful, accurate information than do it here and risk that something got missed. Also the sleep center at UI is smelly.

Anyway, so he had a sleep study. It was awful. So awful. That child has trauma issues that we need to address regarding people coming at his face with stuff. We kept having to retape the things because he couldn’t stop crying and his tears were making the tape lose its stick. And they don’t get the NASA channel and they don’t want you to use devices after x time, so we couldn’t stream the NASA channel, and without NASA, there’s really no sleeping. Sometimes there’s no sleeping WITH NASA, but it goes much better with NASA.

The results were not bad, not great. The ENT said that basically, there’s no emergency here, but it is concerning, we should do something about it, and we can’t drop the ball on this. He seems to have both obstructive apnea and central apnea. He was going to talk to the neurologist more and then we’ll chat at our next clinic about the central apnea component (essentially – his brain isn’t keeping him breathing at night).

The obstructive component – you know, he hadn’t had a sleep study before his tonsillectomy in 2013, but everyone knew he was having apnea episodes, and his tonsils were GIANT. (The tonsillectomy was because of really high EBV levels, which can cause PTLD, the cancer of nightmares, and PTLD often starts developing in tonsils, and you can search this blog for more info about that.) It was assumed that the tonsillectomy would help the apnea. It did. Some. But not completely.

The lingual tonsillectiomy in November last year was both an attempt to help stop all the croup episodes (or croup-like episodes) as well as help the snoring/apnea. I’d say the results were mixed. The doctor, being a doctor, is very certain that the reduction in the croup like episodes was entirely his doing. Because sometimes it’s hard for doctors to realize the actual size of their heads. But the fact is, he did also start the IVIG around the same time. It could be either or both.

Anyway. He still has obstructive sleep apnea and they want to see what’s going on in there now. We’re going to go back later this month for another set of scopes, see how things are now, and they’re having the surgeon remain handy in case they decide that they think they can do anything with the laryngomalacia. We’ll see how it goes.

Then they’re going to want us to do another sleep study in the spring, and another round of clinic appointments. My understanding is that we’re in for years of sleep studies, which is the opposite of fun. And probably will need a CPAP, especially depending on what the neurologist says. Which, again, is the opposite of fun.

(Teddy has trauma issues related to masks. We are going to need a professional to help us get him to be ok with sleeping with a mask. It’s really, really bad. Just sheer panic. Even when he’s really sick and needs the medicine at the ER and he can barely sit up, that child can fight the terrifying mask.)

We also saw genetics, which was a really interesting discussion, but yielded, again, tons of questions but zero additional answers. Just… maybe additional perspectives.

And then we saw immunology. Immunology was pretty sure that he does NOT have NK Cell Dysfunction because I guess it gets overdiagnosed, despite it being diagnosed really so rarely. So they wanted their own labs. Their own labs showed that his NK cells are few in number and the ones he has don’t work (golly, I’m so surprised), but they think it’s caused by some over-arching issue. But they also discovered high EBV levels, so they want to repeat labs when his EBV is zero.

But they need to repeat the labs at THEIR lab.

They were unable to tell me how they anticipate this working, because I want accurate answers and a better idea of what’s going on with his immune system, but I don’t want it enough to drive 20 hours round trip for labs. To drive 20 hours round trip for labs, on the off chance his EBV level is zero when we arrive.

They had zero ideas on that.

The rest of the appointment was interesting. They had some interesting things to say. Some interesting thoughts to share on immune suppression and innate immune function. They’re either insanely smart, or they’re insane, and that’s really the task now for me. Which one are they? They want us to see the nephrology team in Cincinnati, and we were able to add on an appointment when we’re there later this month. They want us to talk about his immune suppression.

Which leaves me with a quandary. If they recommend another course of action with regard to his immune suppression…. what do we do with that? Do I come back to UI and say, “hey, so…” Because I’m not super comfortable with asking UI to manage a medication regimen that they’re not comfortable with. Do we switch to letting Cincy be his primary nephrology team for a while? Golly, THAT wouldn’t be awkward at all. And I’m not sure I am super comfortable messing with his suppression. His (current/former – she’s on maternity now and then is moving to Ohio, but to Columbus) nephrologist had considered a few different changes in an attempt to finally get rid of the CMV, but ultimately, we kept coming back to the fact that this particular drug regimen has been *REALLY* successful. We’re six years in with NO rejection episodes, and function still amazingly good – hanging in there at stage 2. That’s really, really above average for babies with kidney transplants. Nobody wants to rock that boat.

And us transplant moms talk about how nephrologists are sometimes pretty famously against boat rocking, but in this case… it’s really hard to argue with success. Would other meds be even better? Maybe. But maybe they’d be so much worse.

I don’t know.

We’ll see what they say. And we’ll see what research studies they have to back up whatever they recommend. Hope they’re prepared, lol.


New Diagnoses and Grief

Recently, my kiddo’s picked up a fair number of new diagnoses. Three were not surprises, one was. Sort of.

Well, ok. Two were things his doctors had already penciled in, but we needed a certain number of lab results for final confirmation and everyone would have been really surprised if the labs didn’t bear out those diagnoses. I’ve already dealt with those things, back when we first penciled them in.

One was a thing that most people who work with Teddy have suggested, enough times over the years that, though I wanted the answer to be “no,” I wasn’t at all surprised that the answer was “yes.”

The last one was a thing I asked about, fully expecting the answer to be “no, it’s just from these old things.” The answer was “yes, and extremely so.”

That’s the one that threw me.

And I’m full on going through the five stages of grief over this.

And it’s ok.

I think, too many times, special needs and/or medical needs parents feel like the process we go through when we get a new diagnosis is weird or unacceptable or weak. But it isn’t.

It’s grief.

We get to grieve over this stuff. Every new diagnosis, even if expected, even if we cognitively recognize that NOTHING about our child has changed just because there’s a new word on the list of diagnoses, requires some mental adjusting. That mental adjusting is grief.


The first thing I did was DENIAL. I was sad but kind of ignored it the rest of the day, and the whole next day. I danced around the edges a bit. Asked for resources, joined some groups. But I didn’t type the word into Google. I didn’t check the library for resources. I didn’t follow up on any of the recommendations. I just kind of ignored it.

Next? ANGER. I was mad. Not mad because of the diagnoses. Not mad at him. Mad at unfairness. For the love of all things holy, the child has so much to deal with, why does he have to ALSO deal with MORE THINGS? Can’t this one thing just be easy? Not even easy, can’t it just be the same level of hard we were already expecting?

I think I skipped BARGAINING, unless the “can we seriously NOT?” questioning counts.

But I did not skip DEPRESSION. Not, certainly, the can’t-get-out-of-bed, life-isnt-worth-going-on type of depression, no. But the I-don’t-want-to-do-anything, permanent-wrinkles-in-my-forehead, why-is-it-so-much-effort-to-feed-myself depression. Yep. Had that.

And I’m going to pause here again to say that it’s OK. That was ok. That was NORMAL.

Parents – we need to be kinder to ourselves. The world certainly is not. I can hear it already, dear readers. Some of you saying things like “my goodness, woman, put on your big girl panties, it’s just a new diagnosis. It isn’t even life threatening! What a whiner! What a weakling! Life isn’t about what happens to you, it’s about how you react to what happens, or whatever that meme says. What a wuss!!” This is how (some of) the world responds to this VERY NATURAL process of grief. Even in people who’ve experienced the death of a loved one, but ESPECIALLY in people who are grieving the loss of something less tangible. The world won’t be gentle on you.

You need to be gentle on yourself.

This process is normal! Grief after a new diagnosis is normal. (Not having grief after a new diagnosis is also normal – I certainly haven’t grieved every new thing.)

Give yourself this. Don’t beat yourself up. Don’t necessarily expect lots of empathy from others, but give yourself empathy.

Eventually, of course, we move on to ACCEPTANCE. I’m not there yet with this one, but I’ve certainly gone through this process enough times to know it’ll happen eventually. Want to get there faster? Let yourself experience the other stages if you need to. Let yourself be in denial. Let yourself be angry. Let yourself be depressed. Let yourself make bargains with God, the Universe, or whomever you’d try to bargain with. (I’m halfway through some ancient Roman literature, so I’m imagining talking to Jove or Neptune here.) Let yourself go through the steps that you need to take to get to acceptance.

You’re not going to need to experience this process every time, with every new thing. Sometimes you can skip right to acceptance and move on. But sometimes you can’t. Sometimes your psyche or your body says to you, “nope, not this time.” Pay attention. If your body or your spirit is grieving, you need to let it.

And it’s OK.


Yeah, it’s been a while since I updated. Mostly, things have been the same. We started the weekly subcutaneous infusions of IG (immune globulins) back in August. He’s been INCREDIBLY healthy. It’s like we flipped a switch. We haven’t been to the ER since September. SEPTEMBER. That’s 8 months. It’s been YEARS since we went more than a month or two.

Everything’s going pretty OK. Except for the CMV.

You can find previous blog posts on CMV. It’s a virus that most people have been exposed to. They have no symptoms, or they have a cold, and then it stays dormant in their system forever. It’s actually an interesting virus if you care to do any reading about it. Anyway. In immune suppressed people, it can cause issues. It’s most likely to be an issue immediately after transplant. It’s fairly rare to get it over a year post. Rarer still to have it several times over a year post.

BUT. CMV is largely defeated in your body by… yes, you guessed it. NK cells. Do you remember NK cells? Those things Teddy doesn’t really have, and the ones he has are really lazy? Yeah. So you might see the issue here. We’re actually still waiting for a final decision on whether he has NK Cell Dysfunction – you have to have three consecutive tests with dysfunctional results to qualify for the diagnosis, and I *think* we’ll be at that when last week’s labs come back. But it would really explain the difficulty with the CMV.

The first time I mentioned CMV here on this blog was January 2014. It’s come up several times. We treat with an anti viral. It goes back down. We teat for another 3 months, then stop treating. Then it comes back at some point. Lately, it’s been coming back more quickly than previous, to the extent that this last time, we’ve only been off treatment for a month and it’s back.

But Infectious Diseases (ID) and Transplant decided to try NOT treating with the antiviral. Making his CMV resistant to the drug that treats it is a real possibility, and would be absolutely devastating. So, we’re – or, they’re – trying to come up with other plans.

Right now, it’s just viremia – just the CMV actively circulating in his blood, multiplying and active. It’s not CMV syndrome or disease, which would mean that he has symptoms of CMV infection. We’re supposed to watch for symptoms. CMV can attack nearly any body system or organ. So symptoms include a fever, general feeling icky, GI issues, mouth sores, enlarged lymph nodes, sore throat, tiredness, low appetite, elevated liver enzymes, rejection, or a billion other things. Basically, everything is a symptom, and actual symptoms would be very serious. Hello, hyper-vigilance. Remember me? We were making great strides in dissolving our friendship, but guess what? BEST BUDS.

IDEALLY, we want his body to learn about CMV – to adapt to it and learn to keep it under control on its own – without learning about that kidney. So, how can we help it do that? Without antivirals?

Well, we’re lowering immune suppression for starters. We are considering changing immune suppression medication. We’re going to switch to IVIG (instead of subcutaneous), to hit his body with a higher/more effective dose of IG.

It’s a little like House MD. We’re kind of just trying some things to see if they work. Maybe they will. Who knows?

I don’t know. CMV is scary. The morbidity/mortality rates with symptomatic CMV aren’t great (again, we’re not there yet). And that’s with regular transplant people without PID (Primary Immune Dysfunction). I’ve searched and searched, but there’s really nothing out there on NKD + CMV + SOT (solid organ transplant). There’s nothing out there on NKD + CMV. So there’s just nothing to go on here. I don’t like it.

We’ll check labs again after Memorial Day. Hopefully will be starting the IVIG before then.


Guide to Surviving The Holidays With Your Special Needs (OR ANY) Child

Last year, I talked to so many special needs parents who were experiencing frustrating, disappointing holiday seasons. I’m willing to bet that their children weren’t any happier.

So how can we avoid this?

Let’s discuss.

Rethink your expectations.

Your holiday isn’t going to fit your mental ideals. Yes, you may dream of re-creating the Christmases of your childhood – or of creating the Christmas you wish you had as a child – but, especially if your child isn’t a typical child, that might not be very realistic. Create a holiday celebration for the child you DO have, not for the typical child you WISH you had.

Perhaps having wrapped presents under the tree in the days leading up to Christmas is your ideal, but you have a child with ADHD and major impulsiveness issues. If not “ruining the surprise” is important to you, keep those presents well hidden until the children are asleep on Christmas Eve.

Or perhaps your child with anxiety just really falls apart over the idea of having surprises. My youngest doesn’t prefer to be surprised by presents, especially when he knows far in advance that there will be gifts. For his birthday this last year, I just ended up telling him what some of his presents were – he was surprisingly fine with waiting to see them on his birthday, and knowing what was waiting for him helped him be excited instead of anxious.

How can you change your expectations, or what new traditions can you create, that truly help your special needs child enjoy him or herself?

Rethink Social and Family Obligations

Raise your hand if your special needs child LOVES holiday get-togethers and exhibits perfect behavior? Have your hand up? Skip this section. And yay. Truly.

For the rest of us, whose children get overstimulated, whose children hate crowds and noise, etc. – rethink those holiday obligations. All of them. The school party, the church service, the work parties, the friend gatherings, the family gatherings. How many do you really HAVE to go to? For family things can you consolidate or alternate? (We’ll go to the Smith family for Thanksgiving and the Jones family for Christmas, or We’ll go to the Big Family Thing this year, but next year we’re staying home.)

Or, how can you make those gatherings better? Can you limit the time you spend? Is it better for your child if you go somewhere, so you can leave as needed, or is it better for you to host so that your child can be in familiar surroundings?

And, of course, the perennial “my family knows my child is immune suppressed but showed up obviously sick anyway.” Don’t be afraid to leave. You aren’t obligated to stay at a gathering where the other attendants can’t respect your needs, assuming you’ve made them clear.

Get Family To Rethink Their Expectations

Yeah, this is tricky. Because many families prefer to pretend that they have only typical children in their family, and don’t want to acknowledge whatever difficulties your child or children may have. If you can get family on board, great. Explain your child’s difficulties (not their diagnosis, but their struggles) and how family can help. “Johnny really struggles with physical contact – you can really help with this by giving him space. He may not want to hug you, or sit next to you. It’s not personal, he just isn’t comfortable with touch.”   “Rose gets overstimulated easily with all the lights, noise, and goings-on. We’re going to bring her headphones and she might need to take quiet breaks in another room – if you notice she’s stepped away, just let her have her space. She’ll rejoin us when she’s ready.”

Good communication in advance is usually helpful here.

What if Family Doesn’t Care?

But let’s say your family is like many, and they don’t care. (Or don’t seem to care.) The good news is, you don’t have to get your family on board to still take care of your child. Pack a bag of coping skills – physical and mental. Bring whatever helps your kid. Playdough. Weighted lap pad or blanket. Headphones. Electronic Device. Books. Toys. And when you notice your kid is ready for a break, or starting to lose it, just whisk him or her off to your pre-scouted quiet area for a little one on one time until he or she is ready to rejoin the group. No explanations necessary.

Your kid not going to eat what everyone else is eating? Bring food for them. Your kid not going to eat, period? Whatever. Don’t sweat it. (I have kids who just couldn’t eat when they were hyped up with excitement, quite apart from the tube feeder.)

You don’t need anyone else’s buy-in to take care of your kids.

“But!” you say. “BUT!! The mean looks, the rude comments!”  Whose children are these? Not Aunt Susie’s. Yours. Mean looks, you can ignore. Rude comments, you can ignore or address. You’re going to have to play that one by ear. I don’t engage. I ignore, I purposefully misunderstand, I deflect with humor, I change the subject, or I leave the area. Experience has shown me that engaging isn’t worth the effort. But some people have great luck engaging in polite, educational conversation.

If you think your relative/relatives might actually be interested, chat away!

Inappropriate Presents

This can be tricky. Bear in mind that nobody HAS to buy you or your kid a present. Ever. In advance, if your child has particular needs, you can lay the groundwork for good gift ideas. “Hey, you might have noticed that Sam struggles with gross motor skills. I know you bought a bike for the other kids at this age, but Sam is still probably a few years away from being able to pedal successfully – he would, however, really have a lot of fun with .”    One year, I just let family know that Teddy was developmentally still several years behind peers, and in particular with fine motor skills, so he wouldn’t be able to use things like puzzles that require fine motor skills, and if they had any questions about the appropriateness of a gift, just to ask and I’d be happy to help.

But what if your kids get gifts that just don’t work? They can’t eat much orally, and they were given candy. They can’t hold a pencil and they were given coloring books. In general, the only appropriate response to a gift is “thank you.” Even if, even if, even if.  You may disagree, that’s fine. But in my opinion, being rude doesn’t solve anything. Say thank you and move on.

What if the gift giver asked for ideas and then got something else? Say thank you and move on.

What if the gift giver knows that the recipient literally cannot use whatever the gift is? This appears trickier than I think it really is. Think about the gift giver. Are they clueless, do they have difficulties themselves, or are they just mean? Clueless and difficulties can be forgiven – it really is the thought that counts, even with our special kids. Meanness – well, that’s really up to the individual to decide how to handle, and how you handle it will depend on your long term goals for that relationship.


Dear Family and Friends of Medical Parents

Dear Friends and Families of Medical Parents Everywhere,

You might not realize it, but it’s likely that your friends who are parents of medically intense and/or special needs kids are lonely. This life is a lonely one. Most of us feel as though our friends who parent only more or less typical kids just don’t understand our lives. We often face misunderstanding or denial of our children’s diagnoses by family, we receive criticism of the way we parent by basically everybody who’s never parented a kid like ours, and we spend inordinate amounts of energy on calling doctors, therapists, insurance, and pharmacies.

And yet we sometimes act in a way that makes you think we don’t want your company. You might sense that we find some conversations awkward, for example. Or we might consistently decline invitations. Or accept invitations and then cancel. Sometimes at the last minute.

I totally get it that, eventually, you might decide to just stop inviting us.

After all, we almost never show up.

And you know we’re busy. And you know we’re tired.

And it feels like you’re helping. Like you’re doing us a favor. Saving us from having to decline yet another invitation.

But, to us, it feels like we’re being excluded. Yes, we may almost never show up to things that you invite us to, but we still like being included. For one, we like being treated like adults who are capable of deciding for ourselves what we can or can’t make work in our lives. We know you don’t mean it like this, but when you decide for us whether we can or can’t come to something, it feels… discriminatory? infantalizing? insulting? like a thinly veiled way to tell us you just didn’t want us there?

But also, we just plain like knowing we haven’t been forgotten, that our friends or family still want us around. That we still have the option of hanging out with regular people if our crazy lives allow the opportunity. We already feel pretty lonely, but seeing pictures of all of our friends except us going to a movie together just really drives that home. Seeing that your family had a big thing and you didn’t even know about it just plain hurts. In this age of social media, the previous polite understanding of “don’t talk about an event in front of people who weren’t invited” doesn’t seem to apply any more. Inevitably, selfies are taken and shared, and our lives feel just a little bit more lonely, more isolated.

I’m bringing this up today because, yes, we had a situation or two like this in the recent past in our own family, but also because I see this come up time and time again in special needs groups. I’m almost certain that, for the most part, the hurt is very unintentional. But it’s still real.

I have some fellow SN friend parents who I invite to things like my kids’ birthday parties. I invite them and then I say “I know this won’t work with your schedule, but I wanted  you to know we’d love to have you if you can work it out!” or “I know this might be hard to make work, but let me know if there’s something I can do to make it easier.”

You can do this, too, if you feel you need to. Or you can just keep inviting your friends/family who are parents of Medical/Special needs kids to things. Maybe some day, they’ll actually show up, but in the meantime, chances are good that you made their day a little brighter just by including them – just by letting them know you haven’t forgotten them.

Dear Doctors, About Self Care

Dear Doctors,

Do me a favor. Either really believe in caregiver self-care, or just stop talking about it.

And by “really believe in” it, I mean “actually help it happen.”

I feel like it’s important to note at this juncture that you might THINK that you’re helping. You might feel like a friendly reminder “don’t forget to take care of yourself!” is helping. You might feel like “use some of that respite time for a date night!” is helping. But these things aren’t helping. These things are nagging. Or, alternatively, these things are about as useful as saying “hey, why don’t you move to Mars?”

Oftentimes, the end result of these types of comments is the parent/caregiver just feels even crappier, because they KNOW they should be taking better care of themselves, and you’ve just reminded them that YOU KNOW they’re failing at this. And parents don’t like to think their child’s doctors see them as a failure at anything.

So either help, or just shut up.

How can you actually help? Well, for starters, if you know you don’t plan to actually offer practical help, then don’t bring it up. Do you plan to find me a trustworthy babysitter or respite person who is comfortable with Gtube feeds and medications and severe ADHD and developmental delays? And the money to pay for both them as well as the evening out? No? Then why bring it up? When you bring it up, it makes me feel like I have to justify myself to you. “Oh, well, it isn’t really that easy…” and then it turns into a conversation of me trying to convince you that it’s actually not that easy. But the thing is, this is really actually NONE of your business. I actually shouldn’t HAVE TO try to talk you into understanding that the real life, on the ground experiences of your patients are different from your own personal experiences.

Secondly, if you really have a commitment to caregiver self-care, take a minute to assess all the things you’re asking your patients’ caregivers to do. And then think through the things that all the child’s other doctors are asking them to do. And then look at that list. Really look at it. And then consider if, in exchange for a bit of sanity, or some time to eat lunch every day, you could let something go. Nothing you can let go? How can you get community supports in place to help?

Thirdly, listen to the parents of your patients. If they’ve made a well thought out decision to drop something from their radar, LISTEN TO THEM. Why did they decide to let that thing go? Are they overlooking important information that they need to know to make a better decision? Are there compromises to be reached here? Is there something ELSE you could back down on so the parent feels able to bring increased focus to the area they had previously dropped? If the thing the parent has dropped feels vitally important to you, the doctor, then it’s time for a conversation, but the conversation needs to be more than just “this is important, so do it.” You need to look at the child and parents as whole people.

Your patients’ parents are more than just unskilled labor existing solely to support your patient.

Immunology, also titled Weekly Home Infusions Until the End of Time

This update isn’t going to be as clear as most of them. Because Immunology is super hard, turns out, and I don’t fully understand all of it.

So we saw immunology at the request of Transplant. We’ve seen Immunology in the past – when he was having all those blood infections from his central lines, and then right before and right after transplant – and they said he had some immune deficiencies but some IVIG should take care of it, get him through the post-transplant period, and he should be fine.

And he was, for the most part. In fact, he had low IgG at that time, and now he doesn’t.

But then the CMV kept coming back. All the respiratory infections. Bunch of other infections. All mild, nothing super big, but just constant. Which I had assumed was just… normal. But when you make a list of all the infections, it’s a really big list. Big enough that Transplant was shocked when we really listed them all out. And then include the mystery fevers and the UTIs that aren’t UTIs… it’s a big list.

So back to Immunology.

They ran some labs. And I don’t understand most of them. I mean, they’re all numbers and random letters. And Google is absolutely no help. I can Google the individual things, for the most part, but putting them together to make some sort of picture that makes sense…. nope. Can’t do that.

The one thing I could definitely tell on my own (and later was explained by Immunology) was that he has issues with his NK Cells. To call it NK Cell Deficiency, this has to be the person’s only immune issue, and that’s not the case here, but I’m still hiding in the NKD groups anyway, because I don’t know where else to go. Regardless, as of the present time, it seems evident that not only does he have too few NK cells, but the ones that he does have do NOTHING. The actual result was “virtually no activity.”

NK Cells are the cells that are supposed to respond quickly to viral infections and cancerous cells. Teddy’s just can’t be bothered. I’ve been looking for a link to put here of what happens when your NK cells don’t work, but I could find basically nothing. Because basically nobody really knows much. Whoohoo. In fact, most articles start by acknowledging that, essentially, we don’t know much about NK cells but we know they’re important based on looking at people whose NK cells are either too few or too lazy. There’s this, but it’s just a lot of long words to say, “well, who the heck knows, anyway…” and then a bunch of majorly depressing shorter words about all the things that destroy the people who have this.

He also has impaired T-cell function. That is from the immune suppression, probably. The “probably” part makes me giggle a little. Like I said, immunology is hard. (A study published in 2015 says, “But the immunoregulatory mechanism of FK506 is still largely unknown.” (FK506 = Tacrolimus, one of the two immune suppressants T takes.) So we’re doing this to him on purpose. Probably.

Then he has antibody deficiency. To determine this, they look at whether he responds to and maintains a response to the immunizations he’s gotten. He hasn’t. We’d previously determined that the MMR was essentially a waste of time (man, remember all the bellyaching I did over that one? Those two, really? So close together like that to squeeze them in before transplant? Shoulda skipped it.). I can’t remember which other ones we’ve checked, either around transplant time or more recently, but every one we’ve checked has come back as not immune. Not immune despite, in some cases, extra doses. More reading here.

And then there’s the rest of the effects of immune suppression.

So I don’t think this is the end of the story for T immunologically. I don’t know if having two or three things wrong with his immune system means there’s one over-arching immunologic diagnosis… it’s certainly not specified in the clinic notes and is one of my questions for our next immunology appointment. It’s also possible (I want to say likely, but we’re not going there) that the results from Genetics will shed some light on this.

So. Treatment.

Teddy started SCIG and will continue it until the end of time.

Subcutaneous Immunoglobulin. It’s an infusion of immunoglobulins that goes in under your skin. Once a week, Teddy’s going to get an infusion that will last for an hour or so. The medicine goes under his skin in a big lump and then is slowly absorbed over the next 24 hours or so. We did the first one last week at UI and it was fine. We’ll either go back again this week or we’ll start doing them at home this week. We’re still waiting to hear one way or the other. (Because, you know, we don’t have anything ELSE on our schedule, right?) This is what he’s getting. We’ll do this every week for all time.

And it’s fine. I hate it. I hate it a lot. I super hate it. I hate it. We may not see any improvement in infections for SIX MONTHS!! I hate that, too. We have to do this every week. EVERY WEEK. But it’s fine. I mean, I’ve given him injections. Daily and weekly injections. This is better than that. Right?

It’s better than dialysis. Dialysis was nightly. And it was awful. This should be OK. But it’s just one more thing, you know? One more thing. One more thing for us to have to do at home. One more hour and a half of his life every week that we have to devote to medical things.  78 hours a year. One more thing I have to do to him. One more thing I have to force on him. One more time I get to be his nurse AND his mom all at the same time. One more thing.

I don’t want to be misunderstood here. I’m happy to do it. I would do anything he needed. Gladly.

But I’m so tired of one more thing.