He Fought the Nap, and the Nap Won (this time)

Gratuitous cute bear-hat photo. The hat is soon to be retired, as it is being transformed into a skull cap. So, the good news is the delayed post is due to my illness and not Bo's. I had a raging fever and was half dead all weekend (lucky me), and am finally feeling human late this Monday afternoon.

More good news, we think the nephrologist's theory is right. She said she had seen a small handful of babies on TPN with kidney stones, and it was because the Aluminium (Al) was too high. So when we were in to see her last Wednesday, they drew a huge volume of blood to test for his Al level and viola. The norm is 0-6, his level was 52! Just shy of the cut-off lower limit that requires dialysis. Yikes. Apparently this is one of the few non-regulated components in the bag. So hopefully the pharmacist will be able to find a way to compound his bag with less Al.

Other than that, he fought the nap, and, indeed, the nap won. Well, at least this morning. The afternoon nap was another story. Early bed time tonight, buddy!

Not So Fast!

The PDN is funded from Medicaid, which we only have until August 1st. I'm not sure how or if we can extend our Medicaid. Once that goes away, so too does the PDN. Sigh.

And, Bo had a rough night, nauseated and finally vomiting the spinach and potato dinner he had. Although, he did wake up very cheerfully. What an optimistic fellow!

The Worm Has Turned: More Miracles!

Good, amazing news! The state of Michigan has approved us for PDN (private duty nursing). That means they will pay for a nurse to come help with Bo, 8 hours a day, 7 days a week! This is truly a miracle. If you recall the post called 24-hour Plan of Care; that long list of what it takes to keep Bo going (a day in the life), and how intimidating it looked? The longness of the list, and the intimidatingness of it were by design, and it appears that design has worked.

And, drum roll please... he laughed today! Yesterday was the turn around we were looking for. Of course, we couldn't show his doctors what we meant by fussy and inconsolable because he was full of smiles and giggles today for his appointments. He's like that singing and dancing frog on Bugs Bunny. The nephrologist thinks the extra day and a half of discomfort were a result of the stone passing causing some lacerations and residual pain, which has apparently finally resolved. Amen!

Every Morning Alone Time

The one thing about Bo's behavior that hasn't changed during this trying time is his satisfaction playing by himself in the mornings. And every morning I watch him playing, hoping that we have reached a turning point, only to be disappointed by his distress in the evenings.

Last night I was so distraught, I found myself wondering about palliative care. Again, revisiting those UM doctors in my head. I just felt so crazed and desperate. What if his kidneys were failing and we just didn't know it? Could we do a live organ transplant? Would DeVos do it? What the hell am I thinking? I am going mad. He is teething, probably. Or has the flu. ...But then, the Tordol didn't work last week...

Then, tonight, I nursed him after getting home, and no gagging. Not even spit up. He wanted more, so I warmed up a bottle, and he devoured that. Still no vomiting. And another bottle. And even a little more nursing. Seriously, praise the Lord. And Buddha. Kwan Yin the Merciful. All my ancestors. The kind and gentle spirits of the trees Bo loves so much. This is the most he's eaten all week combined. Please let this be the turning point.

No end in sight

I am past frantic, beyond anxious. I am frustrated and worried. Bo has been fussy for over a week, with loss of appetite, nausea and increased stool output. He gets so uncomfortable he can't take a second nap and then has problems falling asleep at then end of the day being over fatigued on top of the nausea. He hardly smiles. But he has no fever, his WBC dropped from last week, and his CVL site looks great.

Theories range from flu to teething. I don't much care what the problem is, I just want a way to make him more comfortable.

More Kidney Stones

Bo loves reading.

On a separate note, the ultrasound revealed a completely clear right kidney, and a left kidney with still some sediment and a stone. The previously seen stone in that kidney had either moved or has been expelled. The technician wouldn't tell us any more, and I didn't get to hear the analysis myself. Jose did find another stone in Bo's diaper at midnight, but he was still uncomfortable through the night and nothing seems to help. We will see the nephologist and his GI specialist on Wednesday, so hope they have some insight into what to expect, how to mitigate further stone formation, and better pain management.

Church, God and Miracles

I figured since I had my own personal miracle, I would start exploring the various institutions that are founded on mircacles. The church I went to yesterday had an especially funny (to me, uninitiated into the realm of organized religion) call and response. One that I found both amusing, relevent and profound. Especially that this call and response has to be constructed so it makes sense backwards as well as forwards. Would it be incorrect to liken to a palendrome?

Call: God is good.
Response: All the time.
Call: All the time.
Response: God is good.

Because it was a mass commemorating the Last Supper, the elders of the church washed and kissed the feet of the congregants; an extremely intimate and unexpected (to me) gesture that really did seem to embody the lesson that we should honor and take care of one another. It was all done so lovingly, it didn't even strike me as the least bit corny. I had to cry.

Although Bo was nauseaus again at bedtime last night, he woke up this morning full of joy and happiness. We will see if this nausea diminishes tonight or not. I'm hoping it finally does, but we will also have an ultrasound this afternoon to confirm the status of the last kidney stone. I'll post new pix later tonight.

Still No New Pix

Jose left the jump-drive converter at our friend's house. We won't get it back till tomorrow night. Jose's at his model-making class tonight. I was getting a stomach ache anticipating a repeat of last night, as Bo started up again right after his second (last) nap. I was putting together his TPN and Omegaven infusions for the night and sat him up in the middle of our queen sized bed. He just sat there looking so miserable. His eyes were glazed over, and I swear he had bags under his eyes. He would gag every few minutes, but nothing came up. Then, 20 minutes after hooking him up, I put him down in his crib and no coughing, gagging, or retching for the last hour! There is the occasional clatter of the crib toy, but he's not awake enough to retch, cry or play. This is all good. What a blessing!

First Full-time Monday

I'm greasy and need a shower. I haven't groomed my face in, it feels like weeks. And now, after hooking the baby up on my own and trying to get him to sleep, I am bone tired. That feeling you get after sleeping in and forgetting your morning coffee? Like a vice is gripping the top of your skull? That's what my head feels like right now. It's not like this every day, but the gagging/retching/choking routine has returned, and with it that vice-grip on my brain. At this moment, I have an inkling of empathy for how substance abuse starts.

Bo is lying in his crib, an hour after his bedtime, silent but for a few soft moans punctuated by this loud, hair-raising retching. I've already spent an hour holding him, shifting to one shoulder, then the other, down to the crook of my arm and back up, chasing the pacifier with the bend in my elbow or my chin. We have this theory that if he's nauseaus and teething that maybe the pacifier will allow him to feel soothed without quite so much retching. A poorly studied theory. My back muscles instinctively grip my bottom ribs and my neck first flushes then grows cold.

New mothers everywhere are weary. I know this. But right now I am feeling sorry for myself, and wondering if any of them really feel as tired as I do. Then, immediatly, I know that they do. Duh. But when I hear the retching I simultaneously want to scream and pick him up to make it go away. I would cry, but that would definitely not be soothing. And then I quickly remind myself that his existence is a miracle. He is proof that miracles do happen. Then I hear him gag on the baby monitor and the whole cycle of emotions repeats itself.

Jose is at painting class, a time that is sacred to me. I want him to keep doing his work, too. And while my current work may not be as fulfilling as I had hoped, it is still a way to be in contact with the outside world, and earn our keep.

Gagging. PLEASE fall asleep. Fury at Jose. He calls and asks if he should come home. I practically scream, NO! I am sitting, but my mind is a frenzy. I can't even take a shower until I know he is asleep. What if he really starts vomiting and I have to run to the nursery all soapy? What if I'm too late? Or slip and hurt myself? So here I am, greasy, tired, anxious.

Gagging. PLEASE, please, if there is a God, if he is a miracle, why does he have to continue suffering?

More gagging. My eyes are welling and stinging with fresh tears. Please just fall asleep. I want to kill myself, momentarily. Then I wonder if maybe the U of M people were right. Then my fury and revulsion at that thought and that institution sober me back up, and I creep into the nursery to reposition the pacifier. Three beautiful, restful minutes of silence from the nursery. I check the blog of another short gut baby and feel like such an ass. This momma has entries that are all so positive. They are not forced cheerful, but genuinely, inspiringly positive. Even with her child much more severly affected than Bo (her daughter has some brain damage, requires a ventilator to help her breathe, and lots of OT/PT/ST). I am a jackass. They say that we should not compare suffering. But what if it reminds me to be better? Be more forgiving? Be more grateful? Ten amazingly silent minutes. I will never again take forgranted a quick and silent bedtime.

The vice around my head loosens up. I'm starting to feel human again. Almost jubilant. There is a God. Thank you. Thank you, Bo for being such a good boy. Thank you, God, for giving him some peace tonight. Thank you for giving us another day to witness this miracle, to kiss his fat cheeks, to tote him around to each window in the house, to hear him screech with joy, to nurse him at lunch, to feel his warm hand on my face... I am grateful for every day.

Is it greedy to hope for years? Is it morbid not to? Is it presumptuous to relax? Is my medical anxiety the answer to my professional ennui? Who really cares, if the baby is finally sleeping? Maybe I can finally take a shower? Or is that pushing my luck? It is St. Patrick's Day, and Bo is part Irish...

Weekend Teething

Sorry no photo today. I'm updating from one of my dad's laptops. Just wanted to let you know that we haven't seen any actual teeth, but not only do I feel their corners pushing up under the gums, but he is chewing on his pacifier like crazy. This is significant because he lost interest in those things months ago. We had to scramble around looking for them when all this teething started. And the worst part is that at the end of the day, he gets quite uncomfortable and has difficulty falling asleep because he feels so lousy. Poor Boo-Boo. Would Tordol for teething be going overboard?

Well-Baby Bonus Round!

Up till today, Bo was clinging to the bottom of the growth curve, @ the 3rd percentile. As of today, he's been promoted to the 5th percentile for both height and weight! Of course, it is no optical illusion that he has a big noggin; ringing in at a stupendous 25th percentile, which, relatively speaking, is huge. Big head, big brain, right? Bonus: no shots!

Cousins!

This is Bo and his next older cousin, Violet. She came over to play a few weeks ago.

Bo has his next well-baby (get vaccinated) appointment today. I hope I can find his vaccine card. It's always sliding around some pile of documents or other.

Two Cats, A Dog and A Baby- this is not the opening line of a joke

Murray officially has Feline Lower Urinary Tract Disease. It's as painful and annoying and impossible to understand as infant kidney stones. So now she needs more fluid in her diet. At least this is an easy one; give her soft food. And Prozac? We'll see...

Ming, Mom and Bumper are here. Maybe Bumper set it off.

Bo is so excited to see my mom and sister!

Milky, milky... right?

Aside from an hour's episode before bed last night, Bo has been in high spirits. We may never know if it was the yogurt, or teething (when will this kid ever get his teeth?) or residual kidney stuff? But I'm just grateful that it passed.

We had a lovely visit from good friends in town who brought Bo some new books (hooray, and thank you!) which makes reading with Bo so much better. I've memorized the first 30 board books already. AND we went to the new independent kids' book store next to our neighborhood grocer. I love our neighborhood.

What a great weekend we are having. And we somehow squeaked by without a blizzard landing on us this week! Have a great weekend!!

Three's a Charm

We think Bo passed his last of 3 kidney stones last night. He was pretty upset, but we were prepared. A small dose of Tordol and extra fluids seemed to hasten the process from several days to one. So, he had his IV nutrition (aka TPN), his lipids (the Omegaven that saved his life), and the lactated ringers (extra fluids) which meant that we had a triple splitter (Y-connector) hooked up to his catheter. The triple splitters we have are pretty cheap; made of thin plastic, so whenever he rolled over, it would clamp itself off and all three pumps would start alarming.

So we didn't get very good quality sleep last night. But it was still a hundred times better than waking up to him gagging, choking and retching. And we only had one night of this, rather than the 4-6 days the other two stones took.

Bo actually slept through all those pumps beeping. I guess he's used to it from all the nights he's spent in the hospital. He woke up in great spirits today and was so happy and cheerful all day. He is such a great guy!

Happy 9 Month Birthday!

We are officially out of the literature. Since there aren't that many recorded cases of MID, we're already working with a limited knowledge-base. But of those recorded cases, most of those stories tragically end by nine months. As of today, we have even less literature to reference for Bo. I won't say that we beat the odds, but that there are no numbers available to even calculate them now.

I went out and bought both size 3 and 4 overnight diapers, giddy with optimism.