Wednesday, September 11, 2013

PulseOx and Speech update

The pulse OX machine and oxygen equipment arrived last Friday.

A PulseOx machine sensor (the part you adhere to your body) is sort of like a long band aid that wraps around Will's thumb with two sensors inside. One of the sensors is a small red light, so we have nicknamed our PulseOx machine Rudolph.

It connects to a machine which reads Will's heart rate and his oxygen saturation levels in his blood. If his oxygen levels are below 96, that's not ideal.

The machine

The sensor, you wrap the long tan strip around your pointer finger. The sensors are included on the strip.

We hooked Will up to the finger monitor for heart rate (HR) and Oxygen saturations (OX) on Saturday and Monday nights.

It seemed to stress him out so we did it alternating nights to try and get decent sleep the other nights. He woke up in the middle of both nights upset and wanted to remove the monitor about 1 a.m. and 4 a.m. respectively.

We monitored his HR and OX as best as we could during the night. Essentially his OX never went below 98, but mostly stayed at 99 or 100. His HR wavered between high 60s and low 90s. Consistent with some of the sleep study results, his HR was higher at the beginning of the night then as he settled into sleep it dropped. I would say that it mostly hovered in the 80s.
Our plan as discussed with the doctor is to monitor his HR and OX levels to assess when or if to actually start oxygen during the night.
I am hesitant to start the OX because his OX saturations levels seem fine. Per Dr. Jon's comments - we want Will to be in the sweet spot of 96 - 99. If we use oxygen and his OX saturation levels hit 100 WHILE USING the oxygen, then we won't know how far over 100 he is going. So it could be 101 or 501. The machine doesn't measure after 100. We want to avoid oxygen overdose, hence why the sweet spot is 96 - 99.
So we continue to monitor his heart rate and are not starting the oxygen until we have more data. Frankly this is pretty stressful on him and I'm not going to do it unless we have absolute proof that it theoretically could be helpful.

So, Rudolph and Will are slowly becoming friends.

However, this really doesn't answer the question about what to do with higher than normal resting heart rates as indicated in the sleep study.

Not sure we'll ever really have an answer, but for now I am happy with where we are at and what our trial is showing at home.

Speech milestone!
This is Will's first full week back at school since August 15 ish. He seems pretty happy to be back. He hit a HUGE milestone in speech on Tuesday. We have been working on the "s" sound. He can say s without blending it, for example, sun, so, sit. But he can't do an "s" blend such as smile or slide.

We finally got him to start "adding his s" in front so it was SSS   Lide. On Tuesday, without a lot of prompting he said SLIDE - all one word and he did this pretty consistently during the session. Words such as SLED, SLEEP etc.

We cut the session short because his speech therapist was sick so we opted out for germ exposure. We are ALL so proud of Will. It was a huge moment. 3 days a week for at least 4 months of working on S blends and here we are. FINALLY!

We have a road to go with speech, but I am just so proud of him! Basking in the glow of all his hard work.


  1. Reagan also has a higher than normal resting heart rate (usually in the 100-120s while calm or asleep). When she's tense, it's in the 130-140s. And when she's crying it's in the 150s-200 range!! Rarely is she below 100.

  2. Good job Will!!
    We have Jagger on Pulse ox anywhere between 18 to 24 hours a day depending on how he is doing!
    We put it on his toe as his movement disorder will not allow us to use his fingers or he will knock himself silly!
    We nickname ours ET!! lol
    It seems you have the masino machine, so make sure to switch the sensor so often, they do heat up and can cause small burns!
    That might also be why he is fighting the sensor after a few hours!!