Tuesday, January 17, 2017

At the PICU

This morning I woke up and couldn't shake the feeling that I needed to call Tessie's pediatrician.

Her neurologist had told me I could give her until Thursday, but if she hadn't called by then not to wait any longer, but I found myself watching the clock and when it hit eight I called and spoke to the receptionist and then left a message on the nurse's line.

Half an hour later the pulmonary office called and told me they would like to see Tessie today.  By then the appointment was only an hour away, and a short while later Paul dropped us off and picked Patch up from school.

The pulmonologist went over Tessie's history, and our family history and then brought out the sleep study.  I had not had a chance to see it up until that point.  I really hadn't seen it, he asked.  He was shocked.  The report was written on the thirtieth of December.

It said that Tessie has severe central apnea and that she had had severe oxygen problems over the course of the test, with her oxygen levels dropping as low as 79%.

"You know," I said, "I was pretty scared when I left the neurologist's office yesterday and he said that if she hadn't looked so good when he saw her he had planned on admitting her."

"That's what I want to do right now."  He replied.

He called her primary care doctor and then the hospital and the next thing I knew we were being sent to the hospital where she would be admitted to the PICU.  It wasn't, he explained, because she's so sick she needs the PICU (she's not, at least not during the day), but because they have the equipment and ability to monitor her the way that she needs to be monitored while she's being tested.

So Tessie and I went to the hospital and up to the PICU and we went over what's been going on with her again.  The doctor at the PICU said that by looking at her information he had, he thought they would have to ventilate her when we arrived and that the baby sitting before him just doesn't match the baby who has the test results and history that we're seeing.

Tessie, for her part, has smiled at everyone who's come into the room and thinks that this whole thing is a huge party.  Everyone she sees is her best friend and it took some convincing to get her to fall asleep.

But she is finally asleep and the alarm parameters have all been turned down so low that they aren't dinging every thirty seconds, which is helping her stay asleep.

Prayers are hugely appreciated.  I'm thankful we may be getting closer to some answers, and I'm extremely thankful for the care she's receiving (and that nothing has gone horribly wrong before this, with her oxygen levels getting so low) but this day has been stressful at best.


  1. I don't know what to say, I'm just sending you my love.
    Lucía in Spain

  2. As a mum of a boy who was on home o2 for a very long time, check your house and car insurances cover o2 cylinders in the house/car. I had to get a special note written on my insurances (but that was 17yrs ago & in the UK)
    Good luck for Tessie and best wishes to you all. Saffron

  3. As a mum of a boy on o2 for a very long time, check that your home and car insurances cover o2 cylinders in the house/car. I had to get a special note added to mine. (Although this was 17 yrs ago & in the UK)
    Good luck and best wishes to you all.

  4. Praying right now. I can only imagine how stressful this is for you.

  5. By all those bandages and wires she looks like she just came back from WWIII. !!! Seriously, though, I am so glad someone is finally taking this very seriously and urgently. After a few days they will have a good picture of what is going on and she will be exactly where she needs to be until they figure this out. Always remember the Providence of God --- this may be very concerning and stressful, but at least there will not be an at home medical emergency with them doing all this as the result of a severe crises.

    I am continuing to pray to St. John Neumann and St. Philomena for her and for you and your husband too to alleviate the stress, fear and anxiety so you will retain your energy.

    God bless. ~ Bonnie

  6. Oh my.... I will be thinking of you!
    Please keep us updated.

  7. I am so sorry about what little Tessing is going through. Praying for little Tessie and for you.


  8. 💕from michelle and rich


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