Waverly was discharged from the hospital yesterday, and we are settling back in at home! She is up to full feeds, but is on a continuous feed at 40mL/hour. She's now completely off the ketogenic diet and is on Pediasure Peptide. At some time in the future I am considering trying her on a different formula made from foods. But for now, this is the easiest for her to process. We are still being aggressive with breathing treatments, and are working on keeping her and the older children apart as they have been sick with coughing, snotty noses, and fevers. (The middle one is on antibiotics now for an ear infection too.) I am taking the next few days to "dig out" in the house, reorient, love on all my babies, and recoup from a busy, tiring few weeks. We are hopeful that she will continue to improve and be back to "normal" soon.
For now, prayer requests are that she will continue to tolerate her feeds and new formula, that her seizures would not increase as a result of being off of the ketogenic diet, and that our whole family would be restored to health.
Thursday, February 27, 2014
Monday, February 24, 2014
An update via Facebook statuses
Here is a series of updates from my Facebook statuses. More to come! :)
Wednesday evening:
Evening update: Waverly slept/rested much of the day. She's been on bipap all day. We tried her on nasal cannula but she was working too hard to breathe so quickly put her bipap pack on. Around 5:30 during a breathing treatment she threw up a ton. We deep auctioned right after and got a lot of formula out of her lungs
So she is now not getting feeds and is on iv fluids only. Definitely a setback. Hopefully tomorrow we can get GI docs in here to try to figure out why she's struggling so much with digestion (may be a stomach bug on top of it all).
If you can pray for me too I am feeling nauseous and not great tonight. Trying to decide if I should go home (which would mean leaving her overnight-we've never done that before) just in case I've got something starting or risk staying here and being sick here (ew and yuck). Pray for wisdom and clarity in what to do. Thanks!
Thursday:
Not much new to report from the day. I am feeling much better than I was last night, and although it broke my heart to leave her, I think my body recovered better by getting a full night's sleep. She was in great hands (and I texted whenever I woke up in the night to check!). She's still on the same amount of breathing support-bipap all day. She was getting backed up with her formula in her tummy again, so it looks like we may be changing her formula, which means taking her off the ketogenic diet (that helps with seizures) and back on regular formula. This could be good for her digestive issues, but we are unsure how it will affect her seizures. So the big prayer request would be for wisdom and guidance on if and how to do this switch, and that her body will accept it well and she won't begin to have an increase in seizure activity. Also pray for her lungs to continue to heal from the pneumonia. She's a tough girl!
Friday:
"Mama, I wish there were 2 mamas. And the real one could stay here with us, and the other one could be at the hospital with Waverly."
Today's update. She is doing well with weaning her oxygen thru the bipap. Hope to try heated high flow oxygen thru the cannula tomorrow. We tried to increase her continuous feeds today and this evening she threw up again so it's back to a slow drip. We may start to transition to a new formula tomorrow.
Saturday:
Kathryn woke up coughing and now has a fever. I'm struggling to understand it all and be ok with this.
Today's update: Waverly was on heated high flow cannula twice today and did well with it. (She was on bipap the rest of the day.) They are starting her transition to her new formula-slowly increasing it while decreasing the old formula. They are also working on sloooowly increasing her feeding rate (had it up to 15ml/hour this evening-slow!). She threw up early this morning at 6a.m. but hasn't since. Her lungs are sounding pretty good. I am back home again tonight and our wonderful therapist Laura is keeping her company tonight so we could put the big kids to bed as mommy and daddy and wake up with them in the morning before the week gets all crazy again. Also thankful to Krisha for coming this morning and helping to clean the house, as she knows how much it helps my anxiety to have the house at least a little in order. And thanks to Sandra for keeping the sick kiddos this evening so Johnny and I could spend some much-needed time together this evening. I've had plenty of tears today, but also more blessings than I deserve. We are so thankful for all the wonderful support we have when we are pulled in a hundred directions and going through a lot. Praise You, God, for your grace and mercy. Things to pray for: that Waverly would tolerate the increase in feeds and new formula, and that we would not see an increase in seizures. For Kathryn and Jackson-she still has a fever and coughing/sniffles, he's just got a drippy nose and some slight coughing so far. Strength for our bodies to stay healthy. Thanks everyone!
Wednesday evening:
Evening update: Waverly slept/rested much of the day. She's been on bipap all day. We tried her on nasal cannula but she was working too hard to breathe so quickly put her bipap pack on. Around 5:30 during a breathing treatment she threw up a ton. We deep auctioned right after and got a lot of formula out of her lungs
So she is now not getting feeds and is on iv fluids only. Definitely a setback. Hopefully tomorrow we can get GI docs in here to try to figure out why she's struggling so much with digestion (may be a stomach bug on top of it all).
If you can pray for me too I am feeling nauseous and not great tonight. Trying to decide if I should go home (which would mean leaving her overnight-we've never done that before) just in case I've got something starting or risk staying here and being sick here (ew and yuck). Pray for wisdom and clarity in what to do. Thanks!
Thursday:
Not much new to report from the day. I am feeling much better than I was last night, and although it broke my heart to leave her, I think my body recovered better by getting a full night's sleep. She was in great hands (and I texted whenever I woke up in the night to check!). She's still on the same amount of breathing support-bipap all day. She was getting backed up with her formula in her tummy again, so it looks like we may be changing her formula, which means taking her off the ketogenic diet (that helps with seizures) and back on regular formula. This could be good for her digestive issues, but we are unsure how it will affect her seizures. So the big prayer request would be for wisdom and guidance on if and how to do this switch, and that her body will accept it well and she won't begin to have an increase in seizure activity. Also pray for her lungs to continue to heal from the pneumonia. She's a tough girl!
Friday:
"Mama, I wish there were 2 mamas. And the real one could stay here with us, and the other one could be at the hospital with Waverly."
Today's update. She is doing well with weaning her oxygen thru the bipap. Hope to try heated high flow oxygen thru the cannula tomorrow. We tried to increase her continuous feeds today and this evening she threw up again so it's back to a slow drip. We may start to transition to a new formula tomorrow.
Saturday:
Kathryn woke up coughing and now has a fever. I'm struggling to understand it all and be ok with this.
Today's update: Waverly was on heated high flow cannula twice today and did well with it. (She was on bipap the rest of the day.) They are starting her transition to her new formula-slowly increasing it while decreasing the old formula. They are also working on sloooowly increasing her feeding rate (had it up to 15ml/hour this evening-slow!). She threw up early this morning at 6a.m. but hasn't since. Her lungs are sounding pretty good. I am back home again tonight and our wonderful therapist Laura is keeping her company tonight so we could put the big kids to bed as mommy and daddy and wake up with them in the morning before the week gets all crazy again. Also thankful to Krisha for coming this morning and helping to clean the house, as she knows how much it helps my anxiety to have the house at least a little in order. And thanks to Sandra for keeping the sick kiddos this evening so Johnny and I could spend some much-needed time together this evening. I've had plenty of tears today, but also more blessings than I deserve. We are so thankful for all the wonderful support we have when we are pulled in a hundred directions and going through a lot. Praise You, God, for your grace and mercy. Things to pray for: that Waverly would tolerate the increase in feeds and new formula, and that we would not see an increase in seizures. For Kathryn and Jackson-she still has a fever and coughing/sniffles, he's just got a drippy nose and some slight coughing so far. Strength for our bodies to stay healthy. Thanks everyone!
Wednesday, February 19, 2014
Aspiration pneumonia
Well we landed back in the PICU last night with aspiration pneumonia. She vomited on Monday (we aren't sure why yet-possible bowel issues or stomach upset/bug). Overnight Monday she had a rough night with lots of crying. I was up a lot with her trying to help her be comfortable. On Tuesday she was just acting very weird. Lots of seizure activity. High heartrate. But no fever or much congestion. She cried a lot during the day (very unlike her). Finally got her settled with medication around 6pm and then by 7 noticed her working hard to breathe and her temp started to spike.
The hospice nurse came over and we tried several things to help her but she was still extremely agitated and struggling so we brought her to the ER around 10:30 last night and they admitted her.
A couple of specific prayer concerns: we aren't sure what caused her to vomit in the first place. She's been having some bowel and digestive issues. Pray for clarity on what is going on and how to help her there. Of course pray for the pneumonia to clear up. Pray for protection for both her and I from other germs here. Pray for our other children. They were upset last night when we told them she was coming here. Pray for our health-Johnny is on an antibiotic right now after being sick last week. The older children both threw up last week (but just once) and the middle kiddo has had some diarrhea on and off. So something is off there. Waverly's day nurse went home after being with us all day and was sick with the stomach bug overnight. So we've all been struggling with random bugs and exposed to a lot. That coupled with lots of lost sleep isn't great. So prayer for strong healthy bodies is great (I worry what will happen if I get sick on top of all this!). Thanks for praying for us!
Thursday, February 13, 2014
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