Happy 10 Month Birthday!

Bo's back up to the weight he was before that last stone, and finally, for the first time since, hasn't been so nauseated that he's woken up in the middle of the night. So he slept soundly through the night, through a diaper change, and everything. I'm hoping that this is the turning point where he starts eating and keeping things down. He gets along with Miss Colleen, and so do Jose and I. Sunday, we train/interview Miss Judy.

Bringing Back the Appetite

This picture was taken before he passed his last stone. While his appetite is coming back, his ability to keep anything down has not. So, while this photo wrongly implies that Bo is eating, I had to post it, because, who doesn't want to see a kid covered in yogurt?

Today is day 2 of nursing support!

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.