Laughing, Weeping, Living

Life happens. You laugh about it or cry about it, sometimes both.

The “T-Word”

on August 14, 2013

It’s been a long couple of days around here. Yesterday morning Agnes spit up a high volume for the third time in a fairly short time frame, so we decided to call the pediatrician. For some reason, the office was closed so the phone line forwarded to a 24/7 nurse help line. I told the nurse what had happened, and she recommended taking Agnes to the emergency room, in light of the increased spits and knowing her history of malrotated bowel. Grr. So we took Agnes to the ER at Akron Children’s Hospital. While we were there, they discovered that her oxygen levels were low and that she was having episodes of desaturation. So they ordered a bunch of tests. X-rays, blood cultures, surgery consults, yadda yadda. Of course everyone was freaked out by Agnes’ squeaking breathing, and they decided they had to keep her in the hospital because of her breathing and the oxygen desats. Grr.

So Agnes was admitted for monitoring respiration and oxygen levels, with a slew of tests to try to find out why she is having these episodes. No one seems terribly concerned about the spit ups, apart from the fact that she may have aspirated formula or spit up into her lungs and that is causing the increased trouble.

Today she had a laryngoscopy which detected a narrowing of the space between the vocal folds which the ENT doc is pretty sure is causing the noisy breathing and possibly even the low oxygen levels. Unfortunately there is nothing to do about that problem because any surgical intervention would probably cause more problems then solve, plus the issue may be neurologic, where her brain isn’t telling her vocal folds to open the right way.

Also she had a follow up echocardiogram to determine if her low oxygen problems are because of deoxygenated blood in her heart bypassing the lungs and going straight to the chamber which pumps back to the body. The test concluded that this is probably not the case, which I guess is good. She won’t need heart surgery.

However, that only leaves the upper respiratory obstruction and at this time there is really only one surefire solution for that issue:


This is where they put in an alternate airway below the obstruction. They cut a whole through the outside of the throat and create an opening into the trachea. I don’t know the whole story about what all is entailed in caring for this and maintaining the health of a child with a tracheostomy, but apparently it’s a big deal.

They aren’t saying Agnes should get one today. They do plan to keep her in the hospital over another night or two and run a couple more tests related to upper airway and swallowing reflex and things.

However, I am not clueless and I can tell the tracheostomy is in Agnes’ near future, unless she totally turns around and starts wowing everyone with her super-efficient breathing.

As a side note, I amused myself this afternoon in the hospital room by counting up all the doctors and nurse practitioners who have cared for Agnes. Including my OBs, the perinatologists, labor and delivery docs, geneticists, neonatologists, heart, brain, and endocrine specialists, surgeons, ER docs, nurse practitioners in every unit, and doctors on the floor where Agnes is now: over 50 people. That doesn’t even include the dozens of nurses, the therapists, or the techs who run the ultrasounds and other tests. Gosh, girl. Agnes is single-handedly keeping the medical profession in work.


4 responses to “The “T-Word”

  1. Mary says:

    Breathe deeply my friend and give your heart over to Our Lady. Tomorrow is a big feast for her so trust Agnes to her and let go. She will guide any decision you need to make for Agnes’s health. Hugs from VA!!

  2. Kathy Schwager says:

    Hugs and love to all of you! We will continue to keep you in our prayers.

  3. woodra01 says:

    Thinking of you and Agnes.

  4. Adrienne La Favre says:

    Hi Judy, I faithfully read your blog, even while on vacation when we were able to have internet. I think of you, your family and Agnes several times each day hoping things are better. I think it is great you have this blog. Agnes is lucky to be looked after by the health care system. All babies deserve the level of care she is getting but many do not get ti. Her needs exemplify America’s health care crisis. Maybe your sharing your person story will help people understand that decent hard working people have health care crises and everyone deserves care. Maybe Agnes’ story will change people’s attitude towards universal health care, something the Church considers crucial for social justice in America.

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