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
Thursday, January 30, 2014
Thursday, January 23, 2014
Tummy issues?
Waverly was having a hard time gaining weight, so we have had to increase the strength of her formula yet again (we increased it once back in September). As you may recall, at that time she struggled with bowel blockage issues, and it seems to be back again. She will do fine sometimes, and then other times when we check her stomach before her next feed, she's still got as much as 1/3 of her formula still in there and undigested. The good news is that she does seem to be gaining some weight, so that's good! Please pray that she would begin to digest and accept this new change, and if not, that it would be clear that we need to make some changes (and for clarity on what changes to make).
Along with this has come a few random times of vomiting. One such time occurred this past Monday evening. We were getting ready to head to a friend's house a few blocks away for dinner. Johnny and the big kids had already left (they were walking/riding bikes) and I was going to drive over with Waverly. Johnny had already loaded her stuff in the car, and I was in the kitchen getting something ready when I heard her cough in the next room. Her pulse ox alarmed that her oxygen was low, but we don't normally go running, since that happens frequently enough. Then it alarmed again, and I figured I should go check on her. She was laying on the couch gagging and struggling to breathe. I immediately grabbed her and got her to the ground on her side. She began to vomit, and I was hitting her back to try to help, while trying to look around for the suction. I realized it was out in the van, so I ran out to get it, then realized it didn't have the tip on it. I ran down to the basement and grabbed one, tore the paper off of it, and threw it on as soon as I could and started suctioning. It was a very scary moment because her oxygen was getting very low, and she was laying there blue and gagging. I couldn't help but wonder as I tried to comfort her if this was "it". "Could it really happen like this? She coughs then vomits and chokes, and she's gone in a matter of minutes?" The rest of my family was clueless, on their way to our friend's house. So close but so far away. I felt very alone in those few brief moments, wondering if I was watching her take her last breaths. Then what? Call them to come back home to our lifeless baby? It was a sobering and chilling evening.
She spent the rest of the evening laying on her side coughing up the vomit that had gotten into her lungs, with me right there suctioning it out every time. I held her very tight that night (I do most nights), grateful that God had spared her once again.
It's so surreal to me that we go through these moments with her on a far-too-often basis. Even though it's really not all that often, most parents would be scarred for a long time to have seen their child like that, yet that is our reality more often than we'd like. But once again, God was merciful, and we are thankful.
Along with this has come a few random times of vomiting. One such time occurred this past Monday evening. We were getting ready to head to a friend's house a few blocks away for dinner. Johnny and the big kids had already left (they were walking/riding bikes) and I was going to drive over with Waverly. Johnny had already loaded her stuff in the car, and I was in the kitchen getting something ready when I heard her cough in the next room. Her pulse ox alarmed that her oxygen was low, but we don't normally go running, since that happens frequently enough. Then it alarmed again, and I figured I should go check on her. She was laying on the couch gagging and struggling to breathe. I immediately grabbed her and got her to the ground on her side. She began to vomit, and I was hitting her back to try to help, while trying to look around for the suction. I realized it was out in the van, so I ran out to get it, then realized it didn't have the tip on it. I ran down to the basement and grabbed one, tore the paper off of it, and threw it on as soon as I could and started suctioning. It was a very scary moment because her oxygen was getting very low, and she was laying there blue and gagging. I couldn't help but wonder as I tried to comfort her if this was "it". "Could it really happen like this? She coughs then vomits and chokes, and she's gone in a matter of minutes?" The rest of my family was clueless, on their way to our friend's house. So close but so far away. I felt very alone in those few brief moments, wondering if I was watching her take her last breaths. Then what? Call them to come back home to our lifeless baby? It was a sobering and chilling evening.
She spent the rest of the evening laying on her side coughing up the vomit that had gotten into her lungs, with me right there suctioning it out every time. I held her very tight that night (I do most nights), grateful that God had spared her once again.
It's so surreal to me that we go through these moments with her on a far-too-often basis. Even though it's really not all that often, most parents would be scarred for a long time to have seen their child like that, yet that is our reality more often than we'd like. But once again, God was merciful, and we are thankful.
Wednesday, January 15, 2014
Christmas reflections ad pictures
Oh Christmas Day. Such a magical and exciting time for children (and exhausting time for parents!). Such a wonderful time to enjoy life. To indulge in good food. To spend extra time and attention on others. To savor time together. And savor we did.
Earlier in the year, we had several instances where Waverly was very sick and things were uncertain. If I'm being honest, I wasn't sure that she would make it to Christmas. She was very sick and things could have gone either way.
But obviously she did make it. And she was healthy this year! And, well, as you can probably tell from the lack of blog posts (even more than usual!), we thoroughly enjoyed the season.
Holidays can be difficult for me. Any times of transition or memory are hard actually. It's hard not to think the "what ifs". To wonder if this will be our lady Christmas all together. To wonder what this new year will hold for Waverly and our family. But it's also a reminder of the many many blessings we have. Not just in another year and another holiday with our girl. But with all of our family and friends. Of all that God had been faithful in this past year. Even when things have been hard. And then I can look ahead to this new year and know that no matter what it brings, God's goodness and love will carry us once again.
I love how Christmas is a celebration of Jesus. In a way, it brings everything to a culmination, all of life both past and present and future. No matter what happens, the pain and trials and struggle, Jesus came to bring salvation and redemption. He will make it all right again. Even in His coming all those years ago, there was a tainting of sadness as His coming was ultimately to die. But in that death comes life, True Life. Oh that we would each grasp that truth and hold on to it dearly through the whole year.
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