After a wonderfully normal (chaotic) evening with Alyssa and Jackson, I came back to TCH this morning to Katie and Matthew. Katie headed home this afternoon to get some normal chaos at the Hoy House.
Given a second chance to pass his hearing test, Matthew laid completely still ... movement screws up the test, and I'm thinking, "how in the world do they ever get a good test?" Anyway, his right ear failed again. False failures (wrap your head around that one) are quite common; this failed test just means that he'll need to have another test. Of course. The results of the follow up test aren't crucial so we can be discharged and have a diagnostic ABR done as outpatient.
Matthew was determined not to give the vampires any more of his blood so they finally relented and got it a different way ... through his belly button. They catheterized him for only a few minutes to draw a ridiculous 13.5cc, and then put back 10cc of saline to offset the volume drawn.
Urology and audiology have said that they can see him outpatient, so we're not waiting on them to be discharged. If they show up, *GREAT*, but let's just say that I'm not holding my breath. Renal, on the other hand, wants to see him, but don't do rounds until between 7 and 9 pm ... so we wait. Again.
Matthew has decreased muscle tone, in comparison to standard. Compared to what he was when he got here, he's getting better. Physical therapy folks are s'posed to come by tomorrow. I'm eager to learn some techniques for helping Matthew become the incredible child we all expect him to be.
One of our challenges, of course, has been getting Matthew enough milk into his belly. The occupational therapy folks (OT, for short) came by yesterday, and other than using an odd bottle/nipple, I really didn't get a lot out of what good they were. Nothing against these nice people, but having had a horrible eating infant in the recent past (Alyssa), I know most of the tricks to get a baby to eat. They came back by today for Matthew's 3pm feeding, but we were a little bit preoccupied by the Great Blood Letting of 2010 around that time, and they disappeared. Fine by me actually because as Katie already mentioned, Nicole, our incredible nurse from Wednesday night, tried feeding Matthew more like a premee (sp?). He apparently doesn't know yet that he has to stop sucking and actually swallow what is in his mouth. So every third suck we pull the bottle a bit to let him catch his breath and swallow the milk he has already. I'm interested to see what the OT folks will have to say when they stop by tomorrow. "Thanks for figuring this out for us; we had no clue what to do." hehehe
I've been procrastinating on this last part trying to make sure I wrote all of the positives. Looks like we may not be able to go home before this weekend. Our attending physician, Dr. Cox, feels that Matthew is making good progress on his bottle feeding, but he's still relying on the NG tube to finish feedings and for entire feedings when he's exhausted from procedures. She said that she would rather he shed the NG tube here at TCH prior to going home to avoid regressing on the wonderful strides that we've made. She sends kids home with NG tubes when it looks like it'll be weeks before they shed the tube, so I took that as a positive. *shrug*
So it looks like we're going to "hunk'er down" here at TCH for the weekend. I want to thank Harris County Judge Ed Emmit and Hurricane Ike for that horrible hick phrase. We're still processing what that means for us (parents) and all three of our kids. We're getting so close, it's hard to watch the goal (of getting home before the weekend) slip away. Matthew can take the time to figure out the whole bottle thing, and I'm sure at some point Alyssa and Jackson will get to visit "Baby Maa-few", and enjoy more time with their grandparents.
We keep saying it, but huge thank yous to everyone who has reached out to us this week. We would have been in a much different place mentally without your kinds words and effective prayers. Please continue your prayers for Matthew, his doctors and nurses, our family, and the wonderful friends who have been supporting us this week.