Laughing, Weeping, Living

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

CPAP Plus Pressure Support

Agnes totally owned the switch to CPAP plus Pressure Support. There really wasn’t much difference for her compared to the previous setting, since she was breathing a lot on her own already. The big change is now the ventilator is not supplying even 5 breaths per minute for Agnes; she has ask for every breath she takes. The machine still supplies the base pressure (the CPAP part), and when Agnes takes a breath, the machine pressure increases a bit to support the breath (the pressure support part). There is a back up ready, if Agnes stops breathing for 20 seconds, the machine will give a few breaths. So far this has not happened, except Agnes can trigger this back up response by holding her breath in a fit of pique–which she did do today, just not for a full 20 seconds.

There were a couple good trials for Agnes after the switch, too. They did an echocardiogram which didn’t appear to be upsetting for Agnes, just long. She was awake for the whole thing, but as far as I could tell she was not agitated. They also “pricked” her heel for a blood gas test. They call it a “prick” but really it’s a strong jab followed by at least 7 to 10 minutes of squeezing, prodding, and poking with a thin little needlelike collection tube. As far as I could tell, Agnes was extremely agitated and she hated this whole experience. Her ire did cause the monitor to alarm because it looked like she was dying, but when she kicks a lot the sensor doesn’t pick up well, so I’m not sure how close to dying she actually got. I do know that she recovered from the blood draw very quickly after the lab person left. So, all in all, a good trial for the CPAP/pressure support.

I think the next step will be to take away the pressure support and leave plain old CPAP. Then take that away, and Agnes will be on her own! I’m pretty excited! I think Agnes will be able to come off the machine entirely, but it’s a big change to take away the pressure support, and another big change to take away the CPAP. It’s possible Agnes will not respond as readily as she has been; the next couple changes are much more dramatic than what we have been weaning. Here’s hoping!

No word on the echocardiogram yet, but hopefully tomorrow we will know whether they plan to treat Agnes’ pulmonary hypertension with medicine or not.

Agnes also had a blood draw this afternoon to send away for a genetic microarray test. This test will tell us which genes are involved in Agnes’ special extra chromosome material. That may give us clues about her future. This test takes a while: at least a few weeks and possibly longer. Our nurse told us she knew of one kid who submitted blood samples and had tests done for a year before they got answers. I don’t think the results of the test will make a huge difference in Agnes’ day-to-day care, so any information we can learn will be just for knowledge and insight.

So that’s what’s going on. If Agnes can manage to stick without the ventilator, we should be home in two weeks or so. That would be nice!


What I Wore Sunday: October 20

Hi there. Linking up with Fine Linen and Purple.


Stephen noticed we were taking pictures

Stephen noticed we were taking pictures

He wants to be in the picture.

He wants to be in the picture.

He wants to make sure you noticed Mommy's boots.

He wants to make sure you noticed Mommy’s boots.

My outfit today is a great example of “use what you have.”

The shirt is a Motherhood Maternity shirt I bought when pregnant with Agnes. I actually don’t recommend this shirt because the fabric is very thin, and the shirt shrank a lot in the wash. You would have to air dry, I think, because even low heat in the dryer was too much. The price was too much for that kind of shirt.

The sweater vest thingy was in a bag of free clothes someone gave me when pregnant with Stephen. I love to layer this over long sleeves in the fall and winter. It’s just enough of a layer to get through those days that aren’t quite cold, but still rather chilly.

The skirt is seriously something I have had in my closet for more than 10 years. It still fits (yay, stretchy!) and more miraculously, the elastic waistband is not trashed despite over 10 years of normal wear and wash. It is Merona from Target, so I guess I highly recommend. I believe I wore this skirt as my concert black and white in high school choir.

Also, today I got to wear my pretty new Clarks boots. Yay for fall!

Another Sunday without Agnes at church. She is doing much better the past couple days, so I did have a positive attitude when folks were like, “where’s your baby?” I also had the freedom to sing with the choir today and it was good that I was there. The lady who leads the choir is on vacation this week and next week! Anna let me start off the troparion and it went pretty well. The scary part was when one of the other ladies who kind of leads the sopranos had to run home in the middle of the liturgy! I’m still not totally comfortable with the music of the liturgy, so I was pretty nervous until she came back. We did pretty well, all things considered, and like I said it was good that I was there!

As for the rest of my day, it was pretty good. We hung out with Agnes for a while and Stephen played with all the PICU nurses. He’s a little charmer, and all the nurses and doctors think he is just adorable. Agnes’ nurse today said, “He is the cutest; I could just eat him up.” You better watch out, Stephen. I also spent a long time in the kitchen with Stephen, cooking a pot of chili for dinner with a pan of cornbread on the side. Stephen helped by standing on his little step stool and commenting that the pots are “hot.” He also stuck stickers to the kitchen floor. I asked him what he wanted for dinner because I knew he didn’t want chili, and his answer was, “macaroni.” I asked “macaroni with cheese, or with tomato sauce?” and he said, “cheese tomato sauce!” That’s just because he repeats everything. He doesn’t really understand about answering questions 100% of the time. So I assumed he meant like the blue box macaroni, and he was pretty happy to eat that for dinner. So, I cooked a pot of chili, a pan of cornbread, and a box of macaroni and cheese for myself and Stephen. Good thing we like leftovers up in here.

Anyway, thanks for reading, and if you’re in the mood for a real Agnes update, check in again tomorrow because her care is really going down tomorrow. She’s getting an echocardiogram and they may switch the ventilator to the CPAP plus pressure support setting tomorrow. Wooo. Big day. In the meantime, go here to see a great picture of me stuffed into the backseat of our tiny car with two car seats and an oxygen tank.

Check out Fine Linen and Purple for more Sunday fashions.


Four Months, Baby

Hi everyone, sorry I haven’t given a thorough Agnes update in a while. We’ve been at the hospital every day morning to afternoon, then I have been going back for a bit after Stephen is in bed. I used to write my blog after Stephen went to bed, but now I’m visiting Agnes during that time! Well, tonight she has been very stable for the past day or two, so I don’t feel bad staying home for a change. I’m pretty sure nothing will happen tonight that would require my presence at her bedside (knock on wood?). Anyway, they will call me if they need me.

100_1819So. Agnes is four months old today! Yay! It’s hard to believe she has been around in person for four months already. I guess all the days when she is in the hospital blend together for me. I figured out that she has spent 12 of her 16 weeks alive in the hospital; that’s 3/4 of her entire life! Holy Moly.

100_1821For this latest stay, she’s been pretty dramatic. Last week after the shunt placement surgery, she aspirated some “spit up” (gross) and she is still recovering from that event. Clinically they called it acute respiratory failure, and she has been on a ventilator ever since they transferred her to the Pediatric ICU (PICU). A couple attempts to wean the settings down failed, as did a trial run on the CPAP machine. Agnes needs the ventilator for now. The docs have even started warming us up to the possibility that Agnes will need to be on the ventilator at home, too. They don’t want that to happen, and we don’t want that to happen, but at the same time, we all recognize that Agnes needs what she needs whether it’s what we want for her or not.

Agnes has improved a lot in the past three days; on Monday she was still pretty much a mess, but yesterday and today she has been comfortable, sleeping, maintaining oxygen saturations, and overall being less “touchy.” When she came to the PICU, they started dosing her with a sedative since she was so irritated and touchy about everything, and the past few days have seen that medicine gradually reduced to the point where it may stop tomorrow, or become available just on an as-she-needs-it basis. Tomorrow they will also try again to reduce the ventilator settings. They will take very small steps, and carefully watch Agnes for cues that she doesn’t like something. Caution and carefulness will be the keys.

So we’re looking at another two weeks in the hospital, at least. Since we need to go so slowly with Agnes, it will be a while before we know whether or not she will need the ventilator at home. If she does end up needing the vent, that will add at least two more weeks to hospital stay since that’s how long it takes to transfer Agnes to the home vent and get the settings just right. Plus Jeremy and I will have to be trained on the vent, and we’ll have to line up additional hours of private-duty nursing, and we’ll have to complete a 24-hour care session at the hospital. Unfortunately, the 12-hour care we did for Agnes to come home with a trach won’t count toward this new requirement. Nuts.

But none of that is even a strong possibility yet! Not even one of her doctors is willing to say, “yes, she will probably need a vent at home.” They truly do not know what Agnes will do. It’s a mystery for everyone! Now would be a good time to pray that Agnes does well with the vent weaning so she won’t need a machine at home!

The tests that will help us determine her status during the next week or two are

  • a follow up x-ray tomorrow morning to look at her lungs: are they clear and open? has she totally recovered from aspiration pneumonia?
  • a follow up echo of her heart, on Monday: is her pulmonary hypertension improved or the same as last week? are there indications for the one available medication for this condition? this medicine is not technically approved for use in children, so the docs have to be sure Agnes really really needs it…
  • continued attempts to wean the settings down on the ventilator, and assessment of how Agnes tolerates these attempts.
Me: "Stephen keeps standing in front of Agnes." Stephen: "Stand in front of Agnes?"

Me: “Stephen keeps standing in front of Agnes.” Stephen: “Stand in front of Agnes?”

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The “T-Word”

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.


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