We've had a busy couple of days. Sorry for the delay in posting. Allan and I are hanging out in the PICU. Griff and Flora are hanging out at home. Another day older and deeper in debt.
Allan seems to be doing better since Saturday. His color is good, he's very alert, and he's been maintaining his sats very well. He's had a couple of times when he's dropped them, but very low and not for very long. They've tweaked a number of things and run a number of tests -- echocardiogram, EKG, upper GI. They tried to do a bronchoscopy (putting a flexible tube down his airway to see whether there is something constricting the airway) but he dropped his heartrate when they started the sedation so they stopped. They don't really think he has an airway problem, but they were trying to rule it out. They were also hoping to suck some stuff out of his lung so they could look at it to see if he is aspirating. The upper GI showed that he isn't refluxing and that, as far as they can tell, what he sucks down is going in the right places. The heart studies show that he has a thickening of the walls of the right ventricle which is the part of the heart that pushes blood in to the lungs. Since his lungs are crappy, the heart has to work harder to push the blood through. So they have started him on Viagra (no joke) to help lower the pressure necessary to push the blood through. What else have they done? He's had steroids and antibiotics and no one knows which tweak or which combinations of tweaks have helped, but long may it last. He has established himself as a very popular fellow in the PICU and is collecting new girlfriends left, right and center.
Griffith is doing great. He eats at least 3 ounces at a go and sometimes more. We haven't weighed him lately, but he is certainly a more than 8 pound baby. Eight pounds of pure contrary. Yesterday he was so tired, and so was I, but he would not go to sleep. Every time I put him down, his eyes would fly open and he would fuss. So I decided to take advantage of the sunny day and we went for a stroll -- he lasted about 20 minutes and passed out. When I was too far from home to zip back and catch my own nap. Oh well. Then Rosa came over for a visit and we all sat out on the deck and watched the birds and listened to the yippy dogs next door. Good times. He's getting to be a very big boy -- he slept from 10 until 2 and then from 2:30 or so until 6. We had a good time this morning. When he finished breakfast, he was all wide awake and smiley. We laid in bed for 45 minutes listening to the rain on the roof and watching the ceiling fan.

Griffith - Quite a catch

Griffith in his new t-shirt from Cheryl.

Griffith

griffith snuggled down and working on sucking his thumb.

Sorry for the delay...

Let's start off with the idea that "it is all okay." We have had an up-and-down kind of weekend. Followed closely by an up-an-down sort of Monday. ANY-hoodle......so, where did we leave off? Oh, yes, Jay came home for dinner on Thursday leaving our very small, very medically fragile child in the sophisticated medical care provided by the high-level children's hospital. In the (no joke) two hours that neither parent is there, our child manages to desat. In such a significant way that there are nurses (several), resp techs (ditto) and residents responding to the room. By the time Jay gets there to spend the night, the dust is settling and all is well (ish). So Friday, they start our pride and joy on steroids (inhaled and oral) in order to cure up his lungs. Friday and Saturday (A.M.), he is just fine. Saturday afternoon, his girlfriend Rosa comes to hang out for a while (I came back to find him with his hand down the front of her shirt. He and his brother are very similar in many ways.) By the time I arrive on Saturday, though, things are not going in the right direction -- he's very tired and desating alot. Long story short, his blood gases (think how much oxygen and how much carbon dioxide) are all wrong and they end up putting him in the pediatric ICU to monitor him. Which is where we still are at the moment. Of course, we have, once again, a new attending with a new approach. Once again, Jay and I have to establish that we are not crack heads and don't have a meth lab in the basement and that we actually are concerned and involved in the care of our children. The upshot of the situation is that Allan is doing fine again and that he is beautiful and sweet and wonderful.
Don't even begin to get me started on the bureaucratic b.s. that envelopes the care of our precious baby. We have endured much in the past 6 months. We have responded to misguided, callous and just plan repetitive questions. Still and all, the suggestion that we should be glad if our child was on the peds floor (where the care is not, IMHO, equal to that demanded by my child's condition) because it gave us the opportunity to become familiar with his care -- You. Must. Be.Kidding.Me. (Someone should have told him to buy a lottery ticket because it was, apparently, his lucky day. Even odds are the next time he makes such an asinine observation, I will take him apart with my bare hands.) What I did manage to convey, which was somewhat less satisfying than making his head explode with the power of my mind, was that we have returned to the hospital twice thinking that our child needed more care than we could give him. And we were right. Twice. They, on the other hand, have managed to allow him to crash -- twice -- with 24-hour professional medical care. Thirty-love. Send me home with a baby who is medically stable and we won't be back. Still and all, we don't (yet) have a coherent plan with respect to his care. We believe, however, that we have managed to put the kibosh on the suggestion that there is any "parental care" issue. The truth of the matter is that we were sent home in the "hope" that Allan's lung and feeding issues would resolve themselves. (I don't remember who said it, but there is a quote to the effect that hope is not a plan of action. Perhaps should stitch that in to a sampler. ) Regardless, that doesn't change where we are. We have a new attending who is revisiting all previous determinations regarding care and a pediatrician who descended upon the PICU like an avenging angel. So we got that going for us. Which is nice. We'll see how things go in the next few days.

Momma and the boys (III)

Momma and the boys boyss (II)

Allan on the left and Griffith on the right.

Griffith and the crawl through aquarium

Griff and his new favorite toy.

Beach blanket bingo

Griffith preparing for when the nurses (and student nurses) come over for volleyball.