Archie is doing well and as you can see he’s been extubated for a day or two now. He has been in a bit of pain what with the jaw stuff coming off again, so he’s got some meds for that and also probably as a consequence of that he didn’t fully cooperate with a swallow study yesterday. Slow but steady progress is the order of the day. For the moment he still has the NG tube in, but should be bottle feeding soon.
Archive for February, 2010
This morning was the last turn of the screws. They have reached the predetermined end of their travel. Archie’s scheduled to have the hardware removed on Tuesday. It’s made a huge difference to his jaw, as you can see from this photo taken a couple of days ago.
Otherwise everything is going well. He’s feeding well (35ml a time and increasing) and he’s on a small amount of Fentanyl for pain.
I sometimes play Boggle at work. I usually lose to the resident Boggle players who are more experienced (at least lately) and have the 4-and-5-letter-words in L1 cache.
But sometimes I get to pull out a good word. Often a Britishism which sometimes passes muster with Merriam-Webster, our official arbiter. The other day I spotted monad which scored, and prompted quizzical looks from my competitors. When they said, “What’s a monad?” I of course said matter-of-factly, “A monad is a monoid in the category of endofunctors.”
This is Archie’s ventilator. As you can see it’s on very low settings because his lungs are working just fine. The 21 in the lower right is the percentage of oxygen he’s on – i.e. normal air. (He’s actually on a slightly higher setting now post-op because he’s on narcotics for pain which can depress his breathing). The 11 and 5 on the bottom row are pressures, again very low. Don’t ask me to explain everything here; I’m a games programmer Jim, not a doctor! Actually, I was impressed with the touch-screen UI. All those dial-looking things are real dials that you just touch and turn to where you want them.
This one is his monitor for various vital signs. The right half of the screen is his (you can see his name at the very top right), the left is another patient. It’s all configurable, but I think the nurses usually display two because it’s one nurse per two patients.
The top chart is his ECG. The next one down is his breathing. These two both vary all the time according to his mood and whether the nurses are doing anything he considers uncomfortable (like suctioning his airway). As you can see, he was pretty relaxed when I took this pic. Third reading down is the pulse ox(imeter). This sets off an alarm when he “desats” i.e. the oxygen saturation of his blood drops below 88. This can happen momentarily when he gets suctioned or when perhaps he is working hard on a diaper and holding his breath! Fourth and fifth lines are CO2 partial pressure and blood pressure. These don’t vary much at all. And at the bottom is the alarm history. Generally there are alarms going off all over the NICU all the time but they are just transient issues as I mentioned. Half the time I think the kids pull the leads off too!
Archie’s mandibular distraction went very well. We went with him to the OR at about 1.30pm and met some of the operative team which included anaesthesiologist, ENT doc, plastic surgeon and nurses. Although we left him there about 1.45pm, surgery didn’t start until 3.30pm owing to a scheduling backup and the fact that they didn’t give him a central line but administered all the drugs through IV.
In the meantime, we took a walk around Westwood Village and came back to wait in one of the NICU waiting rooms. At about 5.45pm he was wheeled back to the NICU and we met with Dr James Bradley again, who told us that everything went well, that the pre-op bronchoscopy/laryngoscopy showed that everything was fine from the ENT point of view and that the distraction device was in place.
The anaesthesiologist also told us that everything went fine and Archie was a particularly easy case for her as he was on no other meds. She didn’t even give him a paralytic, just the anaesthetic and pain meds. So now he is on Fentanyl to control the post-op pain. He’s still on an IV tonight and into tomorrow, although the attending paediatrician told us he’ll be feeding again tomorrow (through his NG tube).
I’ll spare you the post-op pics, although it is a pretty neat job with minimal swelling. He has suture lines under each side of his jaw and screws that come out behind his ears. Over the next 10 days or so, those screws will be turned every morning and evening for a total travel of 2mm per day. Osteogenesis is very fast in newborns! After the 10 days, he’ll have the external hardware removed and the internal supports will stay in for another couple of months until the bone mineralises, at which point they can be removed in a simple outpatient procedure.
Archie’s mandibular distraction is scheduled for tomorrow (Friday) at 12.30 PST. Should take a couple of hours. Here’s hoping for a great outcome and recovery.
We visited this morning and for the first time measured the reflected wavelength from v2.1’s optical sensors at about 475nm. For now, his eyes are blue. We also met with Dr Tcheng, one of the paediatric fellows currently on rotation, and she told us that he has been scheduled for jaw distraction surgery on Friday. So that is good news as all indications are that this is the best technique for treating his PRS. I have to wonder what would have happened were we not in Los Angeles – perhaps a tracheostomy.
This morning Archie was also off the IV, getting all needed nourishment through the feeding tube. Dr Tcheng also told us that his bilirubin levels were good – he’s a lot less yellow than v2.0 was, anyway – and that his kidney function was a little “high” at the last test, but that she expected that to come down at next test, as that was consistent with adult function and for the first day or two neonates are still functioning with their mother’s blood as much as their own.
We came home at lunchtime to collect v2.0 from school and then Mrs Elbeno went back to visit this afternoon/evening. Dr Tcheng called me to report continued good news; that his blood gas test was very good and they have turned down the ventilator even more. And the memsahib got to hold him for an hour sitting in a chair. Tubes obviously were still attached but contact is good!
Almost forgot to mention that as of this morning he was moved to a new bay. He is now closer to the entrance which indirectly means he is improving, since NICU policy is for milder cases to be near the entrance and more serious or critical cases to be deeper into the ward. So with him going into the OR on Friday, we are expecting his total stay in the NICU to be maybe 3.5 weeks.
v2.1 had a CT scan this evening to assess candidacy for a jaw distraction. We’ll discuss more with Dr Bradley and the UCLA craniofacial doctors etc tomorrow. One thing’s for sure – v2.1 is getting about the best care he could get anywhere in the world.
In the meantime Mrs Elbeno is home and pumping. We have rented a Medela Symphony. v2.0 is glad to have Mummy and Daddy back in the house.
Archie Oliver Gryffin Deane, born 7th February at 2.41pm. 2835g or 6lbs 4oz, 48.5cm or 19in long. 4 weeks early!
Mrs Elbeno is doing great after a short labour (only 8 hours this time!) and an all natural VBAC delivery. She can come home in a day or two which is quite a change from Elbeno v2.0’s c-section. Everything went according to plan and Archie’s medical issues are no surprise. He is doing fine. He was diagnosed with Pierre Robin Sequence in utero. If you click through to the flickr image, I have marked it up with notes explaining all the things connected to him. Basically he has an ET (endotracheal) tube to keep his airway clear, he’s on a ventilator at minimal setting because his lungs are fine, and he has a feeding tube because obviously he can’t eat with the ET tube in. The other connections are just routine stuff for the NICU.
So we are waiting to consult with doctors about the possibility of mandibular distraction surgery as a treatment for the PRS. This would mean a more extended NICU stay of probably 3-4 weeks.