Friday, March 5, 2010

A Call From Dr. B

I've never had a doctor care so deeply about Nolan's medical situation as our new neurologist. She called me this morning, to reassure us about Nolan's breathing and to go over the game plan with the tonsillectomy.

We were (obviously) concerned with the apneas and the oxygen desaturations to 79%, and had asked about obtaining some sort of monitor. There are several reasons why a monitor is not feasible right now:

  • We have no way to treat the apneas at the moment, so having an alarm without a treatment option is fairly useless*.
  • Nolan's arousal mechanism is working perfectly, so he WILL wake up and start breathing again on his own, after each apnea.
  • Nolan's apneas are approximately 10-13 seconds long. By the time an alarm went off, he would have started breathing again on his own.
  • Nolan has 20 apneas per hour that result in oxygen desaturations of less than 90%. Having an alarm go off every 3 minutes throughout the night would simply leave us exhausted, and would not benefit Nolan in any way.
  • The apnea monitors they use on infants with central apnea (prematurity or central apnea of infancy) will not work for a very mobile and active toddler.
She discussed our concerns about the Tylenol with Codeine with our ENT. She also contacted pulmonology to discuss the monitoring situation. Our ENT feels very strongly that Nolan should receive the Tylenol with Codeine, because children often refuse to eat or drink after a tonsillectomy. The pain often peaks 5-7 days after the procedure, when the scabs fall off the back of the throat. Nolan is already "low on the charts" to begin with, and the danger of dehydration and repeat hospitalization without the hydrocodone is high. So we will be treating him with the codeine for about two weeks. The main priority now is to keep him safely breathing while on that codeine.

Pulmonology does have some apnea monitors, but they do not work for mobile toddlers of Nolan's age and size. At-home monitoring isn't really an option in our case, so we need a different game plan. That game plan is:

  • After the tonsillectomy/adenoidectomy/PE tube placement, Nolan will be placed in the pediatric intensive care unit.
  • The post-operative/post-anesthesia time period is the most vulnerable for children with central apnea. If we are going to see a problem with oxygen desaturation, we will see it soon after the surgery.
  • Tylenol with codeine will be trialed in the PICU, while he is fully monitored. We will trial the Tylenol with codeine during this 24 hour period. If he desaturates, he will be kept in the hospital until he is completely recovered and stable. If he remains stable, then we know the codeine isn't affecting his respiratory center and he'll be safe to take home.
I really appreciated the fact that this doctor took the time to immediately look into our concerns to keep our little guy as comfortable and safe as possible.

*We are not treating the central apnea until after we receive the results of the MRI and second sleep study. We need to confirm the absence of the obstructive component, the severity of the central component, and verify the CSA is not caused by a Chiari malformation. If the CSA is caused by a Chiari, then surgery will be required. If the CSA is "idiopathic," then we will treat the apneas with a V-Pap (a specialized Bi-PAP machine used for central apnea) and will be referred to pulmonology.


Julia said...

Wow -- I *heart* this doctor, too!So glad you found someone who is taking everything into consideration and doing the legwork, rather than just looking at one little part of him and leaving it to you to try to tie all the pieces together. (Sometimes I think you should hire an agent for Nolan, or maybe a "posse" like celebrities have trailing around behind them taking care of all the details. Have his people call my people!)

susannah said...

i was going to say the same thing as julia- how great to have a doctor who cares enough to follow up and to actually talk to you about your concerns! what a small gift in the midst of so many concerns.

Kimmy K said...

My eyes teared up a little at the thought of Nolan in the PICU, but I think it is a brilliant plan. Hooray for Dr. B! You will be able to rest a little easier (and maybe even get a little sleep!) knowing that the night owl ICU nurses are watching over him every minute.

Herding Grasshoppers said...

Wow. Hurray for the new doc! And - while hospital stays are no fun - it will take away a load of worry and "what if.."

Did you say when the tonsillectomy is? I've lost track.


leah said...

The surgery is on April 13- they wanted it far enough away from the MRI so that we would have the MRI scans prior to the surgery (just in case there is something in the scan that would contraindicate surgery).

Drew's Mom said...

Wow, I am really impressed by this doctor! I'm so happy that you've finally found the right person to help you all through this.

xraevision said...

Leah, this new doctor sounds amazing and just what you all need to create a plan and get some answers. Feeling that your child is in competent, caring hands can ease some of the worry.

We've had amazing PICU experiences with X, and I like the idea of Nolan's breathing being carefully monitored after surgery. It may turn out that he will do just fine on the codeine. (I had my tonsils out at age 5 and do not remember any serious pain, but perhaps I was adequately drugged!)

Re. monitors: In some cases, they can be more of a nuisance than an aid. We were warned about false positives before X came home from the hospital at 5 months old with a Oxygen sat monitor. Although he actually did stop breathing many times (due to tracheomalacia/severe GERD), the alarms were only set off when he wriggled his foot out of the velcro monitor strap . . . which was ALL THE TIME! We ended up returning the monitor and using our eyes and ears in round the clock shifts instead - very exhausting, but not forever.

Big hugs to you and your sweet Nolan!

Emily said...

Sounds like a great doctor! :) Noah had an apnea monitor until he was about 17 or 18 months old and towards the end there were only the false alarms, which is no fun. Since Noah couldn't hear them, it didn't affect his sleep at all, but the adrenaline rush after being woken up by the monitor, made sleep hard to come by for us. We've had much better luck with our pulse ox now that Noah's older, although even that can get messed up with movement. All in all it sounds like a good plan. I know the PICU can be scary, but in my experience it's much cushier for mom & dad because they get more long term parents then the regular Ped ward.