So I just found out from looking at the lab values from our visit to the ER that Adahlia’s liver enzymes are elevated, which indicates liver damage, and there is glucose in her urine, well above normal, which means the iron is getting overloaded into her system and is causing pancreas damage also. There are no ways to measure how much iron is being stored in and damaging her heart.

My surgery is scheduled for this Friday and I really, really don’t want to do it. Getting laid up and risking more inflammation is the last thing I need. It might be foolish, but I want to postpone it. Adahlia just got out of the ER, after all. I am seeing a great practitioner tomorrow who specializes in release work and trying to make an appointment for visceral manipulation with an expert in Seattle. Both of those appointments are for myself, but my hope is that we are so tied together that healing myself will heal her.

The question is, do I risk further kidney damage or do I have time to make this happen naturally?

Adahlia and I are both running out of time. We need a miracle.

In the meantime, she naps, so I will do qigong and energy work.

And I leave you with this prayer:

God, grant us courage, joy and the strength to trust in your plan for us.

I await my consult with cardiology (in 10 minutes) with curiosity.

My heart has felt increasingly better since the latest formula adjustment on Wedsneday (prior to that, since Saturday, I was supplementing my individualized Kidney supporting and Qi-moving formula with a couple known cardio-supportive herbal combinations to nourish the yin of my upper body, heart and lungs.) The latest adjustment was geared to match my body’s needs exactly.

Well, the ECG I just walked out of said my heart had bradycardia, with a marked sinus arrhythmia, which translates to “it beats slower than average folks, and has an uneven rhythm, which becomes more pronounced as I breathe.”

Such findings are considered within the bounds of healthy and normal and they are nothing new to me- its been like that at least the last 10 years.

In other words, my heart’s rhythm no longer looks like that of a 60 year old man prior to a heart attack.

Meanwhile, overall, my kidneys feel pretty great. There was some fairly strong pain in them this morning, but I realized I had forgotten to take my formula last night before bed, and I drank a lot of water and didn’t use the restroom all night, so maybe there was just some natural backup.

In general my energy and vitality is markedly improved since Wednesday, though my chest still feels a little tight and my lower abdomen has some very tight, tender points. My right kidney hurts only a little.

Did I mention I no longer tested positive in response to needing the extraordinarily kidney supportive herbs (Two Solstice Formula) on Weds? In other words, the fire has been reignited.

Also, I’m still encouraged about Adahlia. She looks like hell, and cries when set down for even an instant, and her poop is very unhealthy-looking, but I’m fairly certain she’s working out some sort of newly activated, hidden virus, and I’m hopeful that it is the mysterious source of her anemia.

I also don’t think it’s any coincidence that her vitality has improved enough to launch a full blown fever (for the first time ever) since we invited the medicine man send the dark spirit in our house back to God. She may be sicker, but she is more vital.

Please keep the prayers, love and light flowing. We feel it; we are healing; this story will be a triumph of love and integrative medicine.

Her Hb turned out to be 6.9, which means we needed to transfuse her.

The good news is that her neutrophils were up, and at normal level. She had been showing a slight neutropenia since about Oct, which is low white fighter cells, and that’s why we were told to come to the hospital when she had a fever of 101/102. They worry that if she doesn’t have enough neutrophils, that a bacteria or blood infection could become meningitis.

But, happily, her neutrophils were up, higher than they’d ever been, to a healthy person’s level, meaning that “when she needs them, she’s got them.” The bacterial cultures have all come back negative so far, so it could be viral (they dont typically test for viruses.). The doctor said that her neutrophils “must be hiding somewhere.” Currently, she is diagnosed with a FOUO – Fever Of Unknown Origin… Which of course, means absolutely nothing.

Now that doesn’t make a lot of sense to me. What does make sense to me is that we have been giving her herbs to flush out a latent virus in her bone marrow. That most potent herb in her formula, she no longer needs. Now the virus is out in her system, causing fevers. (She had a fever of up to 103.6 last night). Her diapers look like viral poo diapers. She looks sick. (Plus, she’s cutting teeth again – her top front teeth are cutting through.)

Now, with my knowledge of natural and oriental medicine, I know how important fevers are. They are the vital energy response of the body towards flushing out pathogens. It’s really not a good thing to suppress vitality. There have been thoughts that Tylenol and antibiotics in my generation, as children, have led to people with an overall lower body temperature, and less vital force when it comes to getting sick.

So, since we know that her neutrophils are good, and she had plenty of red blood cells now, and she got a hefty dose of IV antibiotics at the hospital at 3 am yesterday, I felt less concerned about her high fever last night around 9 pm. I knew that fevers peak at night and that it can happen for several days in a row, and its nothing to be alarmed at in the healthy person until its over 104 or even 105. She was still drinking milk and was sleeping, albeit fitfully.

So I called the hospital to let them know the situation, just in case, and they agreed with my plan. We put her in cooler pajamas and bathed her head in a tepid moist washcloth, and I slept next to her, of course, like always, keeping a eye on her. We only veered from the hospitals recommendation in that I chose not to suppress her fever with Tylenol. I decided to let it run its course and keep an eye on her. I want the higher temp, after all, to help her clear out the virus.

It wasn’t our most restful night, but she’s up and smiling, though she still looks a bit ill. Her am temp was between 98-99.5.

This morning, we forced her to take her Chinese herbs. We hated doing it; its so hard. Especially because she was violated repeatedly yesterday, temperatures rectally and tylenol forced orally, and her limbs twisted and veins punctured repeatedly, fighting, crying, and alternating between what sounded like babbled screams and pleading. I swear, every time we go in for the last few months it has just gotten more and more traumatic for her. Its so incredibly hard.

Anyway, though we cringe at being yet another group of people violating her body and wishes, we are renewed in our belief that it is flushing something out of her, and that it may help her heal. So though I am sure she is starting to feel friendless in this cruel world, we have to do it. We need to make these transfusions unnecessary, before they start talking about giving her a port, or steroids, again. We want her to have a better quality of life than that, and while we are grateful for the technology, such options are our last resort.

Anyway, I will write again soon with better stories, stories about how amazing she is, about her silliness and progress.

And in my corner, I am happy to report that my echo looked normal. This means that my arrhythmia is still something non-physical in cause. It is the realm of Chinese and energy medicine. We can fix it; I know it.

…Doesn’t have quite the same ring as “back to the future” and while it involves high tech equipment and scientists, a delorian is no where to be found and unfortunately, none of these scientists are white-haired and mad.

Well, actually, after meeting another attending today, they might be wonky after all.

Adahlia wasn’t sleeping well. Irritable, tossing and turning. Was very warm. Too warm, for a baby we expect to need a transfusion today. Hot.

Ok, all joking and storytelling aside, she was 101.6 at home and admitted to the ER with a 102.9. She’s been given IV antibiotics and fluids and they have lab tests pending. Her temperature dropped to 100.2 last time they checked. It took them 7 – yes SEVEN – needle sticks to get a working IV and labs drawn. One on each hand, one each elbow crease, and twice on the same foot, and then again in the elbow crease.

When we know more, so will you.

Our love and light.

Tomorrow, Thursday:

7:30 am – I am having an echo of my heart
8:00 – Adahlia has an abdominal ultrasound to check her kidneys.
9:00 – 3 pm – IV and likely blood transfusion for Adahlia

Friday, I have labs and repeat EKG from last week and a cardio consult. (Another glorious afternoon in a hospital!) Adahlia will likely spend the day recovering from her transfusion.

The good news is that I feel better. My left arm still throbs, but mostly in the lung and pericardium channel, not the heart itself. The heart fluttering and pounding has greatly diminished. The pain is less. The sensation of squeezing or tightness in the chest is still there, but less intense.

Kidney pains come and go, ebb and flow. Mostly, though, they are less than they were on Monday, too. I work consciously at breathing into them.

The surgeon called today, wanting to cheerlead me into sticking with the plan to have surgery to drain my right kidney next Friday, under mild sedation, or even just under Vicodin, if my heart turns out to be a legit concern and anesthesia is too risky. She also said that the CT showed no left hydronephrosis, so that changes the differential diagnosis considerably, and that the situation is not nearly as serious as she made it out to be after the last ultrasound. She said that they think I have a vessel crossing in front of my right ureter – they couldn’t see it, but if its there, they think pregnancy caused it to put pressure on my ureter, causing swelling of my right kidney, and that it didn’t go down after delivery because the pressure kept the ureter swollen. Her plan remains to drain the kidney, place a stent to keep it open, remove the stent after a month, and then all my problems should be over (unless I get pregnant again, and then I should probably have surgery to move the vessel behind the ureter.)

It’s a great theory but it doesn’t explain why the right, severe hydronephrosis that had me in the ER suddenly dropped to mild status 3 weeks later, on its own, and then increased to severe again in april, or now, moderate-severe. Nor does it explain the milder fluctuation hydro (now absent) on the left.

The Chinese medical explanation (which isn’t very Chinese actually) is that a subclinical infection was triggered during pregnancy, came out of latency, began to wreck havoc in my kidneys and triggered inflammation processes, which created a sort of auto-immune situation as my body struggled to fight it.

The problem with this theory, of course, is that my urine remains clear and I am not showing clinical signs of autoimmune disease.

Yet it is possible, actually, that both theories are right, in that I may have a structural problem that didn’t become a problem until pregnancy, and it created conditions for a subclinical pathogen to grow in my kidneys, wrecking havoc in both my kidneys and now also my heart, as the organs are closely connected as part of a shared conformation.

While neither theory may be perfect, I favor the Chinese medicine explanation because it offers an explanation for all my symptoms as well as Adahlia’s, tying them together, and offers treatment that doesn’t involve surgery or drugs with serious side effects, where the other model sees each of our cases and even aspects of our individual cases as discrete and confounding issues that require rather invasive intervention.

I wish the two models talked together better, because my well intended surgeon is clearly concerned that the herbs Ive been taking for the kidneys are causing the heart issues, when I believe it is quite possible that the herbs are rooting out a toxin from my system, and that the formula simply needed some more balancing, nourishing herbs to support the heart. Besides, from the Chinese medicine perspective, my heart wasnt exactly strong going into pregnancy to begin with, and even western medicine had documented what they determined to be a benign sinus arrhythmia.

The surgeon also said that her concern is that in western medicine they understand which herbs are cardio toxic, and that herbal toxicity is not fully identified in Chinese medicine, and I’m not entirely sure that’s an accurate statement. The toxicity (and relative safety) of herbs is pretty well understood by experienced practitioners.

But, time will tell.

The great news is that Adahlia was reevaluated and doesn’t need to take the Qing Dai herb as part of her formula anymore, which means she’s subtly improving, that there’s less pathogen or toxin in her body than before. She’s been sleeping more and wanted to be held all day today, cried easily, but her color wasn’t the worst it’s ever been, and she was lively enough to play a little bit.

Anyway, its a big next few days for us. The countdowns have begun. Big decisions and bold moves must be made. Morale is higher than it was yesterday; I am not nearly as fatigued or in as much pain. And we’re still praying for divine assistance, trusting that we are being led through something extraordinary.

Oh wait. But of course we are:

Life!

Drafted yesterday

I’m not sure how I’m supposed to do this.

Left arm hurts.
Chest hurts.
Back hurts.
Belly hurts.
Pulses weak.
Breathing shallow.
Trying to breathe deep.
So tired.

Drinking soup. Drinking juice. Drinking protein milk. Eating what can. Sleeping when can. So tired.

Love joe so much. Helping what can. Doing what can. Cooking, playing, singing, driving, carrying, cleaning, loving.

Love Adahlia so much. Still drinking milk. Sleeps close. Wakes laughing.

Babbling. Dancing. Side-stepping. Climbing. Crawling under legs. Looking at picture books. Looking up at me.

Trust.

Hundred-yard stare. Slumped in her chair. So tired of being tired. Doesn’t want to play.

Heartbreak.

… Building blocks of proteins, and therefore, our bodies.

One child with DBA found a cure through leucine (an amino acid) supplementation.

Earlier today, breastfeeding her, it struck me again how much we’ve struggled with keeping Adahlia breastfed. We’ve entered another final stretch before transfusion- it is clear she is very low in blood. She looks like a beautiful little vampire child, she is very easily upset, she’s a bit wobbler than normal on her feet, the last two nights shes awoken fitfully several times, much more frequently than normal, and just this morning I noted a remarkable decline in her desire and energy to breastfeed. After trying for a bit, she gives up, and frustrated and squirming, angrily tries to get out of my arms. At this point, knowing she hasn’t eaten enough, I hold her close to my heart til she settles and begins naturally to root around again with her mouth. This morning, we had to repeat this dance eight or nine times. It took over a hour, maybe two, to feed her what I’m gueestimating would be a single 15-20 minute normal feeding session, and I’m still not sure she really drank enough.

The time between naps is shortening; the length of each nap stretches.

I also just got her lab values in from last week: her neutrophils had gone down to below normal, as well as her red cells, which means that everything basically plummeted this past month. Even more discouraging, her reticulocyte count was only 7. (Normal is 10-90ish). Since November, she has almost always at least had a retic count in the low-normal range… I think last month it was 24. (Now, given her anemia, her retic count should actually be above normal, in the 100s, as her body should be getting itself back on track, making a bunch of her own RBCs as the transfused cells die. For whatever reason, that simply isn’t happening. So in her case, normal actually isn’t good enough. Below normal? Well…)

Sigh.

Anyway, amino acids. It’s occurred to me, that since cutting back my protein a bit due to my kidney issues, I haven’t really been careful to keep my protein intake up high enough, which is especially important since I’m breastfeeding. Its tricky because the appetite just isnt the same when the kidneys are struggling. Getting adequate nutrition has become a delicate balance. And, its occurred to me, it may be a balance I may not be doing very well, given that my heart is now having trouble too.

Since whey is so easily digestible, I’ve started doing whey supplementation. A couple scoops in milk, and it has the added bonus of being high in amino acids, of note, leucine, which might help Adahlia. So I drink a serving or two a day, which gives me 20-40 grams of protein. That, combined with more or less normal meals, should give us what we need.

I am also drinking Hawthorne berry tea, which is good for the heart, and taking fish oils again. We’ve added a couple herbs to my Chinese formula, too, to help stabilize and ground the heart. I think its working. I’m not really taking prenatal vitamins regularly anymore, which I possibly should, since I’m breastfeeding, because, well, I feel like I take so darn much already.

Adahlia took her Chinese herbs today, this evening, for the first time since the last post (sat afternoon). That’s not the sort of regularity necessary for healing with herbs, so I will see if maybe I can find ways to get her to be more willing. (Earlier I tried masking the herbs in puréed pear-blueberry-purplecarrot, but she saw through my subterfuge and waved away further offerings with a sweep of her hand.)

Today I walked with her to the park. It was gorgeous, sunny, with trees in bloom all around us. She puts her fist in her mouth and moves it back and forth to make higher and lower pitch babbling sounds. If I do it, she’ll echo me. We also screech at each other, like birds. 🙂 Its phenomenally wonderful.

She can climb up the full set of stairs now, and likes to practice walking by holding onto whatever’s nearby. She enjoys pulling herself up on my leg. Today, she actually stepped up onto the bottom drawer of the dishwasher and pulled herself up, holding onto the top rack. I swear, she’s a little mountain goat.

She likes to feed herself her baby food purée now… Making a big mess that then I carry her to the bathtub to remove. Sitting in the water in front of me, half in and half out of my lap, she reaches up to the faucet to let the water cascade off her fingers and palm. She leans backwards onto my chest and tilts her head back to look up at me with big eyes and a smile as I rinse her head and hair. I wrap her in a terry cloth towel and cover her in coconut oil before putting on her cloth diaper. I lie down with her and pull out her favorite book, “llama llama red pajama” — earning big smiles, chirps, and excited kicks.

You just never know with her. I’m guessing her Hb must be around 8, but this evening, when we got back from the park, she was full of energy. Her cheeks and lips even had a little color in them. And I breastfed her, and she drank fully and well, without problem. I marveled at that moment, at how lucky I am to still be breastfeeding her. To still have that relationship; to be able to give her that health benefit. It means the world to me. It is worth all the late nights and pumping it took to get us to this point, to have these moments of sweet connection.

When she drinks now, usually, like this evening, she relaxes. She kicks her leg around a little or plays absently with her tors or lays splayed out like a comfortable cat. It is enjoyable.

It didn’t use to be this way. She used to be tense the entire time, struggling as though fighting something. It was so stressful for both of us. And heartbreaking, for me, because i knew breastfeeding wasn’t supposed to be that hard for her. Really, she’s come so far emotionally– she is a vastly more relaxed, happy baby. When I think of how far she’s come in the past several months, slowly but surely unwinding, I know she must be healing.

For example, she used to never let me clean her armpits. She clenched and kept her arms close to her sides, as though protecting herself (Heart 1, a very important acu-point, is located in the center of the armpit.). Now, she lets me lift her arms and clean her armpits. I know it might sound silly amd not like a big deal, but it is. There are countless little improvements I’ve observed like that, things that let me know she is healing.

Tonight, I hope she sleeps well. I can hear her soft breathing; her right hand rests lightly against my arm, a buoy reassuring herself of her connection to my presence.

Do not be afraid little one. I am not giving up on you. And I will not leave you.

Point:

My heart has been pounding, my chest squeezing all morning. I self-needled PC6 on my left arm, just belowdecks wrist. Instantly the pressure evaporated, pain gone. After resting a couple minutes, I removed the single needle and my chest feels much more open, my heart more relaxed.

Herb:

I just got back from the herbal dispensary with Adahlia’s adjusted formula – I reduced the Qing Dai (indigo) from 4.5 g to 3 g, leaving all the other herbs in the formula the same. We just gave it to her and she sucked it down herself, holding the dropper herself, without a fuss. I was right- it was too strong this last time- and that’s why she was refusing it. It should still be strong enough to work; it might work a little slower, or maybe now its jore balanced and will work better– but it wouldn’t have worked at all if she wasn’t taking it!! It’s too bad we lost the continuity of taking a formula over the last several days, but we should be able to regain lost time now. It’s amazing what 1 gram of an herb will do.

Tests, tests, tests. So many people seeking the needle in the haystack.

Adahlia’s hemoglobin was 8.6 yesterday, 3 weeks after her last transfusion. It’s not as good as we had hoped, being that she went 5 weeks between transfusions last time. She is slated for a transfusion next week (4weeks).

We still have hope that she is getting better. It has been a tumultuous month, and primarily my health took a downturn during it. Rudolph Steiner, amongst other things, says that a baby’s etheric body is tied to its mothers until it is 7 years old, and that the connection is especially strong as an infant, to the point that they really aren’t separate entities, and what happens to one will affect the other.

Considering my kidneys and the latest development regarding my health, i have to wonder: Am I (my health) causing the blood problems for her?

My pregnancy was so healthy.

Yet I have always had concerns for my heart; my heart and kidneys (bones), or the Shaoyin network in Chinese medicine, has always been the chink in my armor, my weakness, so to speak. (And of course, then, naturally, also my strength .) To describe how and give examples isn’t really my point, here, so you will have to accept it as truth for me, the same way some people might describe having a weak digestion, or weak lungs.

Anyway, what is going in with her is so clearly Shaoyin. Heart (blood) in Kidney (bones).

If she is tapping into my energies, then I do have more reason to hope that she will outgrow this, as she comes more into her own being.

I also have hope because she hasn’t been taking her Chinese herbal formula. It is too strong, not sweet enough, and I don’t have the heart to force it on her. So I adjusted it slightly and will pick it up tomorrow. Hopefully, then, she’ll take it. I really believe it helped last month.

Plus, our home is full of light spirits. The shaman says they stick around for 28 days post clearing, to keep an eye on us and help if we need them. I’ve been asking for their help in healing as much as thanking them for their help thus far. There is definitely a change in atmosphere of this house. It’s really pretty cool.

Today, I learned that maybe I am not a good candidate for the ureter stent surgery to help drain my kidneys because the pre-op ECG showed a T-wave indicative of a heart having a difficult recovery between beats. They had an ECG from 2011 to compare it to (I’ve had arrhythmia and palpitations for some time now) and its clearly a troublesome development. So they’ve ordered a chest x-ray and echo. They want to do a cardiology consult before surgery because they have concerns about giving me anesthesia now. It stresses the heart; my heart apparently doesn’t need any more stress.

Supposedly: “if you were a 60-year-old male, and this was your ECG, I’d say this was the pattern of a heart right before the heart attack.”

I couldn’t make this stuff up if I tried.

It is not super surprising because at my last acu appointment, the doc treating me said that my pulses made him more concerned about my heart than my kidneys.

It’s also not super surprising because of all the stress and anxiety related to Adahlia. (Stress-kidneys; anxiety-heart in Chinese medicine.) Plus, there’s a saying in Chinese medicine: “too much sorrow injures the heart.”

And our little family has certainly had its share of sorrow.

Its also not surprising because the warmth and energy of the heart must get down to the kidneys to warm and move the water, in Chinese medicine. This is a clue that maybe the kidney problem is actually more of a heart problem; so we need to treat the heart to treat the kidneys.

This might make sense because I didn’t test positive for kidney draining herbs. But I did test positive for herbs to help the heart and lung (the lung is necessary to distribute qi down to the kidneys).

And my heart and lung pulses are weakest, along with my blood pulses (left side.)

Isn’t all that super fascinating? Chinese medicine is wonderful.

Anyway, the good news is that Adahlia’s echo was yesterday and it is completely normal. There’s no heart defect (VSD) anymore. I’m very happy about that.

….

….

“I don’t want to scare you, but…”

I’ve heard that phrase so often in the last 10 months, related to either my daughter or myself, that today, it just made me grin and shake my head.

Nothing scares me anymore. (Though I always took the bad news well, I must say. I’m somewhat hard to shock or panic.)

Except when I walk in into the dark bedroom to join Adahlia in bed, thinking she’s alone in there, and a low voice drifts towards me in a whisper that’s almost a growl:

“I’m right here.”

…before I can place it as Joe’s voice, yes, that usually gets my neck hairs to straighten right up!