This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Monday, September 14, 2009

Love/Hate Relationship With Pulse-Ox

So last night (this morning, really), I couldn't stand it any more so I put the O2 back on her. It was worrying me that her oxygen levels were wavering in the 65 arena. I woke up my nice, peaceful, warm, cozy, sleeping baby to put back on the cheek stickers and shove the nasal tubes up her nose. SHE WAS EXTREMELY PERTURBED. She screamed, and started crying loudly...which of course woke up my 2 year old (Violet), who also started crying. I kept apologizing to both of them patiently trying to explain that Scarlett needed the oxygen because her levels were too low.

She kept fighting me and fighting me, she refused to cooperate and used her hands and head to struggle with me to do anything in her power from keeping me from putting those darn tubes back up her poor little nose. But I finally got the stickers and tubes back on and I turned the O2 tank back on. Her sats went from 63 to 70, then 69.....then 90! , Then 87, 85, 84 then 71, then 83, 82, 80, 79, 77, then right back down to 67, 66, 68, 69. I am so CONFUSED! Pick a number already?! Does she really need the oxygen? Or is the probe just old, or out of place? Ahhhhh!

Then of course Scarlett didn't want to go back to bed. So now it's 3am, 3:15am, 3:30am, 4:00am. I'm exhausted, but she's wide awake and upset with me. So her O2 levels are now hanging in the 75-85 arena and she's wimpering from being so upset. Plus she's 'mouth breathing', because the nasal cannula is pushed up against her nostrils to the point that she can't breathe out of her nose, so she has to breathe out of her mouth! (thereby defeating the purpose of sending oxygen up her nose which she's not able to breathe in/out of). So finally, I surrender... I take off the cannula, turn off the O2, unplug her from the pulse-ox and put her in her crib and she almost instantly falls asleep (tube free).

In the morning (well 3 hrs later...), I plug her in again. She's 75. I think to myself... I knew it, she's fine. I tortured her for nothing. Now her poor little cheeks are bright red from irritation from putting on/taking off the tape, and her nose is dry and sore (and practically bloody) from the O2 tubes.

I have decided I have a love / hate relationship with Scarlett's pulse-ox machine...which by the way seems to be waaay bulkier than other pulse-ox machines I've seen posted on other heart mom blogs. Now I know why Beth says to spot check instead of keeping her plugged in 24/7.

So I've decided that Scarlett is officially OFF the oxygen (again). Which is great news! Tomorrow is the 'meeting-of-the-minds' also called the cardiac conference where Scarlett's team of cardiologists, nurse practitioners, and surgeons will meet to discuss the next course of action for her treatment. ( i.e. What are they going to do and When are they going to do it). I'm fully expecting her next surgery to be the first week in October, and I am also 90% sure it will be the 'full repair' as opposed to just another shunt, but I'll know more tomorrow (or Wednesday at the latest).

Update on Todd's dad... he is doing stable. He is still in the ICU, but Todd was able to go see him today and what he has appears to be treatable, he will hopefully be home before long. Thanks for everyones prayers for Scarlett's grandpa.

BTW: I left my camera at grandma Elva's house yesterday which is why I haven't posted any new pics, but here is one of Scarlett's 6 month photos.


  1. We have the same love/hate relationship with Zach's Pulse Oximeter. I know it's so frustrating. I now just look at his color and demeaner and then cross check with the pulse ox. Praying for the surgery repair!

  2. Aww im sorry for all the frustration!! I hope all goes well and I hope she can get better soon!! thank you for the updates.. Shes soo strong!! <3 Santi's mommy <3

  3. As a nurse I completely understand your frustration with Pulse Ox. It can be very temperamental. I can only imagine the frustrations associated with trying to manage it at home on your own little one. If only this technology could improve.