Abby had a HORRIBLE day. The NG tube was a disaster. She violently wretched for hours with it in. We tried to begin the gastric emptying study, but after only 15cc in her stomach she began to vomit in the machine lying flat on her back. I've mentioned before that she has to be physically held forward so she doesn't choke. The nurse and I pulled her out from under the scanner as her face turned beet-red. It was awful for all of us. It just wasn't safe to continue the test. She stayed sick all day, even with nausea medicine. She certainly had gastric emptying, just the wrong way.
Which brings us to theory number...I'm not even sure where we are there. The surgeon that we saw originally (and I didn't particularly care for) walked back in to my life today. He was better today, although still a surgeon. They are trying to decide if Abby has developed an intestinal blockage while here in the hospital even though it was originally ruled out. The other possibility is she has been without food so long that the intestinal motility has slowed down so much that her belly just isn't moving. Apparently food takes the path of least resistance which for Abby might be up and out at this point.
This much is clear, we probably will not leave the hospital without some sort of surgery. If she has an intestinal blockage, it would need to be resolved. She will almost certainly need a g-tube, reflux and hernia repairs. If this is a motility problem from the virus we will just have to make her system begin to work correctly. We would start with very slow feeds through the g-tube and keep the TPN going until she could tolerate feeds.
She'll have an upper GI in the morning to check for blockage if she can tolerate the barium she'd need. Absolutely nothing happened today to makes me think that's possible. We aren't putting the NG tube down tomorrow right before the test and taking it our immediately after the barium is in. She's still refusing all food.
Today is 2 weeks since she got sick. I was trying to remember what I fed her the last time she ate. What was for dinner Monday evening as she began to feel bad? I know she didn't want to eat, but I pushed as usual. Now everything has changed and I'll bring my girl home, but not the same. I miss her already.
I know you are all praying and God is in control. I'm taking a deep breath and waiting for tomorrow to come.
Oh and I have a huge praise to...man I wish I would begin with praise! Our AC went out and we thought is was the compressor ($5200). OUCH! Turned out to be...I can't remember what. All I remember is $150. Thank you Lord for removing that huge stress and cooling my Emily down. My northern friends may not know that it is hot in Florida and we need our AC in February.
Monday, February 28, 2011
What's next?
Well it's been a difficult few days for us, but as always a mix of good and bad.
I'll start with some good, we retested for flu and it was negative, so she was able to come off of precautions! Yay, the masks and gowns are gone! She never had any respiratory flu symptoms for which we are ecstatic.
The PICC line we hoped to get in Abby just didn't work. After nine x-rays and 3 attempts to reposition the line, it infiltrated into her arm causing a large, still painful hematoma. The two days that process took were days 10 and 11 without food. Not having the line in meant no IV nutrition. It was very tearful and frustrating for me.
We decided a femoral line was the way to go at that point. It's quick, and it either goes in or it doesn't. It has it's limits in that it's only good for about 7-10 days and she had to be put to sleep for it. A central line would have been more stable, but it would have required general anesthesia and another day without nutrition to get it scheduled. The femoral line went in without a hitch and we were able to start TPN within the hour. It still feels strangely wrong to be so happy about a plastic catheter in our child's femoral vein that runs to her inferior vena cava. Ya, just writing it...wrong.
A huge, heavy weight in my heart lifted as that bag of fluids began to drip into her. She was literally starving and physically couldn't eat.
Getting that line in had so totally been my focus for days that I haven't thought much about what would come next. I thought that getting nutrition in her would turn everything around. It helps for sure. Her kidneys are functioning better, her muscle tone is improving and she's more bright eyed. But she doesn't miraculously feel like eating (yet).
For me, this is the hardest part of raising special needs children. Every decision I make or don't make shapes the life of another person with no ability to reverse such decisions themselves.
She absolutely does not want to eat. Maybe she just can't. When her tray comes in I try to keep it very positive and just show it to her without forcing her to eat. She gets a sticker for trying a bite. She generally is happy with one. Tonight she got her sticker for simply looking at the food. Sometimes she seems excited about it, but when it comes to eating she won't. I let her play with bread today, biting and spitting it out. She didn't want to swallow but seemed to enjoy biting it. I was just happy she was interested in it at all.
I'm smiling and being excited for her, but cringing inside. Why won't she eat? Her belly should be healed enough to tolerate some food after a few days on the meds for it. We are at the place where we could spend a month here and still leave with a kid who doesn't want to eat. We are considering a G-tube, which in itself isn't bad. She would have a surgery for her reflux and hernia repairs at the same time though. It would be a big surgery for a weak girl and I still really want her to eat.
When Emily went through this, the reflux surgery was the hardest part. She couldn't throw up or burp because they sort "wrap" the tummy to keep food in. She was nauseated all the time. It took me a labor intensive year to get her eating meals again. She still struggles with it. There is no way I would want Abby or our family to go through that.
It's much harder than I ever realized it would be to deal with this a second time. I couldn't have imagined Abby sick like she is. The bottom line is we have big decisions to make. Abby will have a test in the morning to see how well she is able to tolerate food in her tummy. They are planning on putting an NG tube in followed by 8 ounces of glowy liquid that they will follow on a scanner. I'm assuming they will follow it to the floor based on how she's been today. It's worth a shot because it won't matter how she gets food in if her tummy's not working right. The NG tube will also stay in so we can try slow feeds.
I wish Jeff were here or our move was finished or Emily hadn't just finished being so sick or Hannah had graduated from high school or my air conditioner hadn't broken or the dog didn't get diarrhea this week (probably from getting in to cat food when I'm not there to watch). I wish that Abby were better and I wish I didn't feel so overwhelmed.
We aren't created for wishes, are we? We are created for faith. Hard, dirty, teary, faith that holds on and believes when everything presses in on every side. Faith that He is faithful. Faith that he loves me and Abby even as we are allowed to walk this road. Faith that there are reasons that I may never understand on this earth. And praise. Praise because I am sad for my daughter and I miss my children, but this could very well be provision that I can't see.
Praise doesn't necessarily mean that I'm excited about this. I'm not. I just believe the life of my child matters to God. I trust that He is in control because I certainly am not.
I can't begin to say what a comfort my church family has been through prayer, meals and being willing to do anything I needed. It has blessed (that doesn't sound significant enough) our family immeasurably. There's no way I could do this without their love and support. I have definitely seen the hands of Jesus this week.
Our families have been awesome too. They are all so concerned and pray faithfully for my sweet Abby.
As she sleeps next to me, my prayer is that our next steps would be abundantly clear. I pray that God would not allow me to choose to put a tube in her, if it's needed I pray there are no other options. I pray that He would direct our path and clearly guide Jeff and I. I pray that we would make no decisions that bring our child more pain than necessary and that my hopes or desires for her life would not for one minute be greater than God's plan at work in her.
I would be honored if you all would stand in prayer with me for those things.
I'll start with some good, we retested for flu and it was negative, so she was able to come off of precautions! Yay, the masks and gowns are gone! She never had any respiratory flu symptoms for which we are ecstatic.
 |
| Abby with Jessica...all protected from the flu germy's |
The PICC line we hoped to get in Abby just didn't work. After nine x-rays and 3 attempts to reposition the line, it infiltrated into her arm causing a large, still painful hematoma. The two days that process took were days 10 and 11 without food. Not having the line in meant no IV nutrition. It was very tearful and frustrating for me.
We decided a femoral line was the way to go at that point. It's quick, and it either goes in or it doesn't. It has it's limits in that it's only good for about 7-10 days and she had to be put to sleep for it. A central line would have been more stable, but it would have required general anesthesia and another day without nutrition to get it scheduled. The femoral line went in without a hitch and we were able to start TPN within the hour. It still feels strangely wrong to be so happy about a plastic catheter in our child's femoral vein that runs to her inferior vena cava. Ya, just writing it...wrong.
A huge, heavy weight in my heart lifted as that bag of fluids began to drip into her. She was literally starving and physically couldn't eat.
 |
| TPN hanging---and check out the cool Disney lights over her bed. She can change the colors or have them all! |
For me, this is the hardest part of raising special needs children. Every decision I make or don't make shapes the life of another person with no ability to reverse such decisions themselves.
 |
| Abby and Daddy |
I'm smiling and being excited for her, but cringing inside. Why won't she eat? Her belly should be healed enough to tolerate some food after a few days on the meds for it. We are at the place where we could spend a month here and still leave with a kid who doesn't want to eat. We are considering a G-tube, which in itself isn't bad. She would have a surgery for her reflux and hernia repairs at the same time though. It would be a big surgery for a weak girl and I still really want her to eat.
When Emily went through this, the reflux surgery was the hardest part. She couldn't throw up or burp because they sort "wrap" the tummy to keep food in. She was nauseated all the time. It took me a labor intensive year to get her eating meals again. She still struggles with it. There is no way I would want Abby or our family to go through that.
It's much harder than I ever realized it would be to deal with this a second time. I couldn't have imagined Abby sick like she is. The bottom line is we have big decisions to make. Abby will have a test in the morning to see how well she is able to tolerate food in her tummy. They are planning on putting an NG tube in followed by 8 ounces of glowy liquid that they will follow on a scanner. I'm assuming they will follow it to the floor based on how she's been today. It's worth a shot because it won't matter how she gets food in if her tummy's not working right. The NG tube will also stay in so we can try slow feeds.
I wish Jeff were here or our move was finished or Emily hadn't just finished being so sick or Hannah had graduated from high school or my air conditioner hadn't broken or the dog didn't get diarrhea this week (probably from getting in to cat food when I'm not there to watch). I wish that Abby were better and I wish I didn't feel so overwhelmed.
We aren't created for wishes, are we? We are created for faith. Hard, dirty, teary, faith that holds on and believes when everything presses in on every side. Faith that He is faithful. Faith that he loves me and Abby even as we are allowed to walk this road. Faith that there are reasons that I may never understand on this earth. And praise. Praise because I am sad for my daughter and I miss my children, but this could very well be provision that I can't see.
Praise doesn't necessarily mean that I'm excited about this. I'm not. I just believe the life of my child matters to God. I trust that He is in control because I certainly am not.
I can't begin to say what a comfort my church family has been through prayer, meals and being willing to do anything I needed. It has blessed (that doesn't sound significant enough) our family immeasurably. There's no way I could do this without their love and support. I have definitely seen the hands of Jesus this week.
Our families have been awesome too. They are all so concerned and pray faithfully for my sweet Abby.
As she sleeps next to me, my prayer is that our next steps would be abundantly clear. I pray that God would not allow me to choose to put a tube in her, if it's needed I pray there are no other options. I pray that He would direct our path and clearly guide Jeff and I. I pray that we would make no decisions that bring our child more pain than necessary and that my hopes or desires for her life would not for one minute be greater than God's plan at work in her.
I would be honored if you all would stand in prayer with me for those things.
Thursday, February 24, 2011
What's a need?
After he had spent everything, there was a severe famine in that whole country, and he began to be in need. Luke 15:14 (NIV)
I'm thinking a whole lot this week about the word need. I use it so carelessly. I need a coffee (OK, I might give myself that one). I need a paper. I need a break. I need, need, need.
I don't need. Not really. My daughter needs. She needs access to her tiny veins so we can feed her. She needs this or she will get sicker--she already is. She has to get nutrition so she'll be strong enough for her belly to heal so she can eat. I need this for her because I can't stand to watch her go through this. I want to be home with my family, but I need to be here with Abby.
Her PICC went up the jugular as it enters the skull behind her right ear. It never goes there. 3 times they've taken the sterile dressing off the site and pulled it out more and more. It now sits in her neck by the jaw line. It just doesn't seem to go where we need it to. I keep trying to feed her, she just won't eat. It's gone too far for too long. She has to have energy to get better. We need this to work for her.
The verse at the top references the prodigal son. He thought he needed money and worldly pleasures. He took all he had and squandered it on meaningless things. I wonder if he thought he needed those things. We all think we "need" the things we want in our lives. The prodigal son quickly learned after he used all of his ill gotten resources that what he needed was food. He needed to survive and got a job feeding pigs (v15). In that field he learned that family and home were not such a bad thing to want (vs16-17). He needed discipline and forgiveness (v24) and he found it--along with some perspective (v21). I'm feelin' ya brotha!
As I hold my daughters hand on her 10th day without more than bites of food, I am reassessing the word need. It's so much more than a whim. It's a longing; a deep desire to see my child thrive. I am desperate for it with every thought. I watch her normally strong head flop back as she sits up. She dozes during the day after nearly every activity, no matter how small. She needs.
I hope I remember what this feels like when I'm out of this situation. I hope I recognize true need and true provision when I see it--for me and my girls. I pray that I would always be mindful of how truly simple the Lord created our needs to be. When this is over, I pray that I would see others in need in a different light. I want to remember that I do not provide for my child, even as I lift a spoon to her mouth. God makes a way for her and pray He does just that tonight.
I'm thinking a whole lot this week about the word need. I use it so carelessly. I need a coffee (OK, I might give myself that one). I need a paper. I need a break. I need, need, need.
I don't need. Not really. My daughter needs. She needs access to her tiny veins so we can feed her. She needs this or she will get sicker--she already is. She has to get nutrition so she'll be strong enough for her belly to heal so she can eat. I need this for her because I can't stand to watch her go through this. I want to be home with my family, but I need to be here with Abby.
Her PICC went up the jugular as it enters the skull behind her right ear. It never goes there. 3 times they've taken the sterile dressing off the site and pulled it out more and more. It now sits in her neck by the jaw line. It just doesn't seem to go where we need it to. I keep trying to feed her, she just won't eat. It's gone too far for too long. She has to have energy to get better. We need this to work for her.
The verse at the top references the prodigal son. He thought he needed money and worldly pleasures. He took all he had and squandered it on meaningless things. I wonder if he thought he needed those things. We all think we "need" the things we want in our lives. The prodigal son quickly learned after he used all of his ill gotten resources that what he needed was food. He needed to survive and got a job feeding pigs (v15). In that field he learned that family and home were not such a bad thing to want (vs16-17). He needed discipline and forgiveness (v24) and he found it--along with some perspective (v21). I'm feelin' ya brotha!
As I hold my daughters hand on her 10th day without more than bites of food, I am reassessing the word need. It's so much more than a whim. It's a longing; a deep desire to see my child thrive. I am desperate for it with every thought. I watch her normally strong head flop back as she sits up. She dozes during the day after nearly every activity, no matter how small. She needs.
I hope I remember what this feels like when I'm out of this situation. I hope I recognize true need and true provision when I see it--for me and my girls. I pray that I would always be mindful of how truly simple the Lord created our needs to be. When this is over, I pray that I would see others in need in a different light. I want to remember that I do not provide for my child, even as I lift a spoon to her mouth. God makes a way for her and pray He does just that tonight.
Tuesday, February 22, 2011
Endoscopy results
Well the good news is that the Endoscopy tube isn't that long. I think that's all that kept us from finding more wrong with poor Abby.
Her esophagus was very inflamed with several small sores on it from the inflammation process. She has a big ol' hiatal hernia, obvious reflux (the muscle that should close to keep food in was completely open), and gastritis. The stomach and intestines were very red and inflamed with more sores.
No wonder the precious girl has been in so much pain. They still think the virus just wreaked havoc on her little system with the hernia and reflux being underlying and complicating issues. She probably has a second hernia, but they still have to get a good look at that.
So now what? I was almost afraid to ask that question today. I should have been.
Her belly needs time to rest and heal. She was started on a new medicine to help her heal and control the stomach acid better. They don't want to do an NG tube and further irritate the stomach, so that's out. It's been 8 days since she's eaten more than a bite of food so we have to do something.
That something is a PICC line being inserted tomorrow and TPN started.
TPN is IV nutrition. The PICC line is because a big vessel is needed for the TPN. They will keep it going for a few days and see if her tummy gets well enough to tolerate food and meds. Who knows how long we will be in the hospital now. It will be several days if everything goes perfectly before we even attempt to feed her again. It feels like a huge, very necessary step backwards. I know this is what we need to do to get Abby well, but I don't like it.
She's lost 4 pounds in eight days. I am grieving the loss of those pounds. Every single ounce on Emily and Abby are hard won. I wish I knew how many pounds of food has been fed to them for every pound they get to keep. A spoon has been lifted to her mouth thousands of times to get those 62 pounds she had on her. Now 58. It won't be a typical "she'll eat when she's ready". It will take months to make this up. When it happened to Emily, she never did. She eventually gained the pounds back, but she's stayed littler than Abby and definitely smaller than she was. She was always my big eater, after the flu 7 years ago, that title went to Abby.
I know there are many, many things to be thankful for in this, but tonight I am tired. I have a sick child at home, a child in the hospital and a husband who absolutely had to go to NC today. If ever I needed two of me, it's now. I do appreciate having so many others to help stand in the gap, I just wish the gap wasn't so wide.
Emily is doing better, not too much of a temp and eating and drinking enough to make it through. I think that is how stomach flu is supposed to be. A little scary, a lot of work, but not weeks of difficult recovery.
I'm leaving Abby here at the hospital for the first time ever over night. She's become kind of comfortable with being here and with the nurses. Her nurse tonight has had her before and knows what to do for her. I am praying, praying, praying she does well. I just think Emily needs me more tonight. I'll be back before she wakes up. It's a very strange and terrifying feeling [leaving her]. I feel like a bad mama leaving my sick girl, but my other sick girl needs me too.
So as you can probably tell, I'm overwhelmed and still processing it all. I feel the prayers of His people and experience (miraculously) peace when I deeply desire to freak out!
Isn't it wonderful that tomorrow we have the opportunity to wake up and start a new day with all of the potential of an infinite God to be different than today?
Answer me, LORD, out of the goodness of your love; in your great mercy turn to me. Psalm 69:16
Her esophagus was very inflamed with several small sores on it from the inflammation process. She has a big ol' hiatal hernia, obvious reflux (the muscle that should close to keep food in was completely open), and gastritis. The stomach and intestines were very red and inflamed with more sores.
No wonder the precious girl has been in so much pain. They still think the virus just wreaked havoc on her little system with the hernia and reflux being underlying and complicating issues. She probably has a second hernia, but they still have to get a good look at that.
So now what? I was almost afraid to ask that question today. I should have been.
Her belly needs time to rest and heal. She was started on a new medicine to help her heal and control the stomach acid better. They don't want to do an NG tube and further irritate the stomach, so that's out. It's been 8 days since she's eaten more than a bite of food so we have to do something.
That something is a PICC line being inserted tomorrow and TPN started.
She's lost 4 pounds in eight days. I am grieving the loss of those pounds. Every single ounce on Emily and Abby are hard won. I wish I knew how many pounds of food has been fed to them for every pound they get to keep. A spoon has been lifted to her mouth thousands of times to get those 62 pounds she had on her. Now 58. It won't be a typical "she'll eat when she's ready". It will take months to make this up. When it happened to Emily, she never did. She eventually gained the pounds back, but she's stayed littler than Abby and definitely smaller than she was. She was always my big eater, after the flu 7 years ago, that title went to Abby.
I know there are many, many things to be thankful for in this, but tonight I am tired. I have a sick child at home, a child in the hospital and a husband who absolutely had to go to NC today. If ever I needed two of me, it's now. I do appreciate having so many others to help stand in the gap, I just wish the gap wasn't so wide.
Emily is doing better, not too much of a temp and eating and drinking enough to make it through. I think that is how stomach flu is supposed to be. A little scary, a lot of work, but not weeks of difficult recovery.
I'm leaving Abby here at the hospital for the first time ever over night. She's become kind of comfortable with being here and with the nurses. Her nurse tonight has had her before and knows what to do for her. I am praying, praying, praying she does well. I just think Emily needs me more tonight. I'll be back before she wakes up. It's a very strange and terrifying feeling [leaving her]. I feel like a bad mama leaving my sick girl, but my other sick girl needs me too.
So as you can probably tell, I'm overwhelmed and still processing it all. I feel the prayers of His people and experience (miraculously) peace when I deeply desire to freak out!
Isn't it wonderful that tomorrow we have the opportunity to wake up and start a new day with all of the potential of an infinite God to be different than today?
Answer me, LORD, out of the goodness of your love; in your great mercy turn to me. Psalm 69:16
Still hanging on
Long days here in the hospital. Sometimes long minutes.
So much has happened in a few days. Each minute feels different and confusing. Abby is very stable as far as vital signs go. She has no respiratory symptoms of the flu. She hasn't needed any oxygen, so for that I am thankful.
She just doesn't feel good this morning. She's cranky and achy. She's still taking Toradol for pain. She has an endoscopy scheduled for today to see if we can figure out why she feels so bad. She tested positive for a virus that causes stomach flu in addition to influenza A. Her biggest problem is the absolute refusal to eat or drink. We can't wean down her IV fluids until she can drink a little. She hasn't been able to keep food down for more than a week now. They are also pretty sure she has developed a rather large and painful hernia. We aren't sure how all of these issues fit together with her nausea and pain or if they do at all.
We're hoping for an answer and some course of action today. I think we are leaning towards and NG tube and starting some slow feeds to get her tummy going and then pulling it as she's able to take food by mouth.
Emily woke up sick yesterday and had a 103.4 fever. There are no words to described how overwhelmed and afraid I felt. She went to the doctor and tested negative for Flu and Strep. I went home last night for several hours and was relieved to see she was able to keep some fluids down and her temp came down with Motrin. I think she has the tummy bug that Abby had, but THANK GOD, not so bad so far. She is very fragile and we will be watching her closely. But so far with Motrin and Zofran (nausea med) she's hanging in there.
Jeff heads back to NC today and we are on our own with two sick kids in two different places. Thankfully, my wonderful church is stepping in with meals and help with the girls. I really don't have a clue about what the Lord is trying to teach me in this crazy mess, but I still trust Him.
So much has happened in a few days. Each minute feels different and confusing. Abby is very stable as far as vital signs go. She has no respiratory symptoms of the flu. She hasn't needed any oxygen, so for that I am thankful.
She just doesn't feel good this morning. She's cranky and achy. She's still taking Toradol for pain. She has an endoscopy scheduled for today to see if we can figure out why she feels so bad. She tested positive for a virus that causes stomach flu in addition to influenza A. Her biggest problem is the absolute refusal to eat or drink. We can't wean down her IV fluids until she can drink a little. She hasn't been able to keep food down for more than a week now. They are also pretty sure she has developed a rather large and painful hernia. We aren't sure how all of these issues fit together with her nausea and pain or if they do at all.
We're hoping for an answer and some course of action today. I think we are leaning towards and NG tube and starting some slow feeds to get her tummy going and then pulling it as she's able to take food by mouth.
Emily woke up sick yesterday and had a 103.4 fever. There are no words to described how overwhelmed and afraid I felt. She went to the doctor and tested negative for Flu and Strep. I went home last night for several hours and was relieved to see she was able to keep some fluids down and her temp came down with Motrin. I think she has the tummy bug that Abby had, but THANK GOD, not so bad so far. She is very fragile and we will be watching her closely. But so far with Motrin and Zofran (nausea med) she's hanging in there.
Jeff heads back to NC today and we are on our own with two sick kids in two different places. Thankfully, my wonderful church is stepping in with meals and help with the girls. I really don't have a clue about what the Lord is trying to teach me in this crazy mess, but I still trust Him.
Saturday, February 19, 2011
Neuro, GI, and Intensivist, Oh my
Started last night:
Abby has seen several Dr.'s today and has one more waiting in the wings for the morning.
Long day, short story. Negative for appendicitis, surgery consult says no surgery. Yeah! No blockage, no mass, what they can see of the appendix behind the pump is alright. She does have fluid, but they're Okay with that.
Neurosurgery will see her in the morning, just to be sure the Baclofen Pump isn't having any complications because the fluid is behind it.
GI docs will see her in the morning for the gastroenteritis that is most likely the problem, secondary to a virus.
She still needs consistent pain medication, but they control the pain well. We switched tonight from Morphine to Toradol, which is like and IV Motrin. So far, so good (2 hours).
The plan now is to finish seeing all of our Dr. friends and then to starting letting her eat something. She might go home Sunday, but certainly by Monday. She's a little harder than Em because she has to take everything by mouth. No G-tube to carry us through until we're better (not that I want that).
Overall she's tired and really doesn't want to eat, so tomorrow should be interesting.
The rest of the kids are good. As usual, Hannah and Sarah are troopers and just roll with it. It's harder for Emily, but she's doing well now that Daddy is home. Pray for her though because our caregiver showed up for work (because Abby was in the hospital) after having spent the night in the ER with flu symptoms. She cared for Em this morning and afternoon with a high fever. She was trying to help, but I am praying she didn't give Emily anything else---if I can find a way to make a blog cry, you will see it here if Emily gets sick again. The poor little girl is still recovering from flu herself (type A and B are going around--Em had A, our helper has B).
The winter of 2011 will go down in the books as... oh I don't know. What's a horrible, marginally appropriate word? You can insert your own adjective.
Finished this morning! --Abby woke up with flu-like symptoms this morning, sending the boogies for culture. YUCK!
Abby has seen several Dr.'s today and has one more waiting in the wings for the morning.
Long day, short story. Negative for appendicitis, surgery consult says no surgery. Yeah! No blockage, no mass, what they can see of the appendix behind the pump is alright. She does have fluid, but they're Okay with that.
Neurosurgery will see her in the morning, just to be sure the Baclofen Pump isn't having any complications because the fluid is behind it.
GI docs will see her in the morning for the gastroenteritis that is most likely the problem, secondary to a virus.
She still needs consistent pain medication, but they control the pain well. We switched tonight from Morphine to Toradol, which is like and IV Motrin. So far, so good (2 hours).
The plan now is to finish seeing all of our Dr. friends and then to starting letting her eat something. She might go home Sunday, but certainly by Monday. She's a little harder than Em because she has to take everything by mouth. No G-tube to carry us through until we're better (not that I want that).
Overall she's tired and really doesn't want to eat, so tomorrow should be interesting.
The rest of the kids are good. As usual, Hannah and Sarah are troopers and just roll with it. It's harder for Emily, but she's doing well now that Daddy is home. Pray for her though because our caregiver showed up for work (because Abby was in the hospital) after having spent the night in the ER with flu symptoms. She cared for Em this morning and afternoon with a high fever. She was trying to help, but I am praying she didn't give Emily anything else---if I can find a way to make a blog cry, you will see it here if Emily gets sick again. The poor little girl is still recovering from flu herself (type A and B are going around--Em had A, our helper has B).
The winter of 2011 will go down in the books as... oh I don't know. What's a horrible, marginally appropriate word? You can insert your own adjective.
Finished this morning! --Abby woke up with flu-like symptoms this morning, sending the boogies for culture. YUCK!
Friday, February 18, 2011
long nights..
...or are they days? Who knows anymore. It all sort of jams together when we're in the hospital.
Yes, that's what I said. In the hospital. With Abby (the same Abby I mentioned in the previous post followed by the line "I don't think she'd be admitted").
Turns out my girl was very dehydrated. She was hanging on like nothing was wrong and then flew off the cliff in one big jump. She also began having severe abdominal pain. It began to occur to me that it might not be a virus after all late Wednesday night. I still might be, but we'll see today.
Her CT scan last night showed a pocket of fluid in the intestines around the area where the appendix is, but her baclofen pump obscures the view. Her white blood count was up a little, but not so much that if it were her appendix it would rupture immediately. She's being treated for the dehydration and getting morphine for the pain. She's resting comfortably right now.
She'll have an ultrasound and x-rays this morning. If all looks clear, we'll go with the theory that it's a very nasty tummy bug. Tummy bug sounds WAY too cute for what we've been through, doesn't it?
She still has to eat and drink, and have manageable pain before she can go home. My hopes for an overnight stay may have been optimistic. If all looks good today as far as blood work/scans go, I'll still push for discharge this evening. Hospital life is very difficult on little ones.
Please pray that if there is ANYTHING I should be concerned about, they would be able to see it and we could deal with it. I don't want to miss anything. But if she's alright, I'd really love to go home.
Thank you for your prayer and concern, it is truly a comfort.
Yes, that's what I said. In the hospital. With Abby (the same Abby I mentioned in the previous post followed by the line "I don't think she'd be admitted").
Turns out my girl was very dehydrated. She was hanging on like nothing was wrong and then flew off the cliff in one big jump. She also began having severe abdominal pain. It began to occur to me that it might not be a virus after all late Wednesday night. I still might be, but we'll see today.
Her CT scan last night showed a pocket of fluid in the intestines around the area where the appendix is, but her baclofen pump obscures the view. Her white blood count was up a little, but not so much that if it were her appendix it would rupture immediately. She's being treated for the dehydration and getting morphine for the pain. She's resting comfortably right now.
She'll have an ultrasound and x-rays this morning. If all looks clear, we'll go with the theory that it's a very nasty tummy bug. Tummy bug sounds WAY too cute for what we've been through, doesn't it?
She still has to eat and drink, and have manageable pain before she can go home. My hopes for an overnight stay may have been optimistic. If all looks good today as far as blood work/scans go, I'll still push for discharge this evening. Hospital life is very difficult on little ones.
Please pray that if there is ANYTHING I should be concerned about, they would be able to see it and we could deal with it. I don't want to miss anything. But if she's alright, I'd really love to go home.
Thank you for your prayer and concern, it is truly a comfort.
Wednesday, February 16, 2011
Abby
Sick, sick, sick.
Does another word exist? Not lately. Not in my house.
Abby's been sick on her stomach since yesterday morning. Two days of a sick, fevery, pukey kid. Emily's still sick and congested too.
I'm just plain tired.
Abby's holding her own, so I guess that's good news. I'm not sure how she's not sicker with how little she's been able to take in. She has to turn around tomorrow, or I'm sure she'll need some IV fluids. I don't think she'd be admitted based on what I can see. But who knows?
This is when twins are sooooo hard. Oh my gosh, they are so hard. They need so much. Their lives depend on vigilance. My arms actually ache from holding Abby all day today. She chokes on throw up and I have to physically hold her head forward because she instinctively throws it back. Beyond physically needing me, she just needs me. She needs her Momma. I want to be there because she needs me, but I really want to put her down. She's 13 and 65 pounds. It makes for a long 48 hours.
This is just unglamorous motherhood. When it's 10:44 at night, I just finished the dishes, turned Emily and will check Abby's temp one more time before I try to get some sleep. The words to this song are fill my mind and as I sleep I pray they fill my heart.
Does another word exist? Not lately. Not in my house.
Abby's been sick on her stomach since yesterday morning. Two days of a sick, fevery, pukey kid. Emily's still sick and congested too.
I'm just plain tired.
Abby's holding her own, so I guess that's good news. I'm not sure how she's not sicker with how little she's been able to take in. She has to turn around tomorrow, or I'm sure she'll need some IV fluids. I don't think she'd be admitted based on what I can see. But who knows?
This is when twins are sooooo hard. Oh my gosh, they are so hard. They need so much. Their lives depend on vigilance. My arms actually ache from holding Abby all day today. She chokes on throw up and I have to physically hold her head forward because she instinctively throws it back. Beyond physically needing me, she just needs me. She needs her Momma. I want to be there because she needs me, but I really want to put her down. She's 13 and 65 pounds. It makes for a long 48 hours.
This is just unglamorous motherhood. When it's 10:44 at night, I just finished the dishes, turned Emily and will check Abby's temp one more time before I try to get some sleep. The words to this song are fill my mind and as I sleep I pray they fill my heart.
It is no secret
I can't imagine what tomorrow will bring.
The chimes of time ring out the news
Another day is through
Someone slipped and fell
Was that someone you?
You may have longed for added strength
Your courage to renew
Do not be disheartened
For I have news for you
It is no secret what God can do
What He's done for others, He'll do for you
With arms wide open, He'll pardon you
It is no secret what God can do
There is no night for in His light
You never walk alone
Always feel at home
Wherever you may go
There is no power can conquer you
While God is on your side
Take Him at His promise
Don't run away and hide
It is no secret what God can do
What He's done for others, He'll do for you
With arms wide open, He'll pardon you
It is no secret what God can do
Monday, February 14, 2011
13th Birthday
I had such big plans for the 13th birthday post. I'm still working on some of it, but I'm mostly just wondering why I still try to make it the way I want it to be.
I didn't even see Abby on her birthday and Emily was in the hospital way too sick to care. It was more than 3 weeks ago and I still haven't made them a cake or opened a gift with them. It doesn't seem right to celebrate our children without both Jeff and I here. So like their actual birthday, we will do our celebrating when we're all home together.
 |
| 2 little babies, 1 scared mommy |
"I thought they said this was going to get easier" my friend reminded me during our conversation. "They DID say that!" I replied.
It really doesn't. If you are a parent of a child younger than mine, I am so very sorry that it doesn't get easier. You get better at it, if that helps.
It really doesn't. If you are a parent of a child younger than mine, I am so very sorry that it doesn't get easier. You get better at it, if that helps.
My friend and I decided that "it gets easier" is a lie they tell parents so we won't leave our children on the doorstep of the neurologist that acted like a jerk or the nurse that wonders "what the big deal is".----(Just kidding ....sort of :)
Anyway, back to the point...we share the birthday week of our girls and the journey through the joy and struggles of living with disabilities. We've shared a Mama's breaking heart and laughed until we cried more times than I can count.
 |
| Four amazing princesses |
In those first months we spoke often of how "big" it all was. There was so much to face each day and so many decisions to be made. Things we had to deal with that we definitely didn't want to, and times when we were completely lost. New information came flying at us from all directions. We quickly learned to dread Doctor's appointments as they were often the catalyst for more doctors and even more unwanted information. We cried, grieved, laughed, and tried to dream new dreams.
On this the 13th Birthday of our girls, I am stunned at how little has changed. I still feel all of the same emotions as I did in the few first months of this life. There are still problems to deal with, if anything it's harder because we know so well what is happening or what we will experience in certain situations. We also understand fragility in a way that could not have made sense to me then. Even with those tiny NICU babies, I could not have understood how fragile my children could be. I know now how quickly things can change.
Even as the dreams of my children died, something new was born. New lives and experiences began to grow even as our old life faded. There are times, places, and moments when I look at the scenery of my life, knowing how desperately I didn't want to live here and think "Thank you. Thank you, Lord" If I had my way I would have walked through this cold, lonely world that holds so many things that I thought I wanted. Then I have a conversation with a 13 year old with only 5 words and know in my soul that I could have missed this incredible minute of life. I could have missed her laughing or that feeling of such overwhelming love that my eyes fill with tears. I could have missed the trust I have in a plan greater than my own.
 |
| Emily and Nola |
 |
| Abby Bowling |
Even though the world didn't change and it didn't stop spinning for my broken heart, I still appreciate the life I've had the opportunity to live, and I am so proud and thankful for these 13 year old girls!
Wednesday, February 9, 2011
Talkin' about Heaven
Since the day the twins were born, questions about their lives and deaths have entered my mind. I don't want such thoughts there, but they are. Nothing is less natural than considering the death of my child. I know that all of our days are numbered and I may never have to live through losing my daughters, but it would be unwise to think it couldn't happen.
The events of the last few weeks have brought it to the forefront again. Emily was so very sick. I wish I could describe what it felt like to hold her, not just her physical appearance, but the way her little body felt in my arms. So small, so far from herself. She just felt "away" from me, and falling further away by the minute.
Even though it seemed distant and hypothetical, I have talked with all of my children about Heaven before. Emily and Abby more than Hannah and Sarah for obvious reasons. It's a journey I can't take them on. I don't get to go and see that they are alright. When I think about the possibility of death, my greatest concern is that they would be afraid. What if they are scared or feel alone?
After such a scare with Em, I feel the need for a more concrete coversation with them.
What exactly is Heaven?
I tell my girls that it's a wonderful place where God lives. In heaven there is no sickness. You will be able to walk and talk. You can run and sing. You will never have pain or feel hunger. It will only seem like a moment to you before Mommy and Daddy are there. If you ever feel like it's time to go, don't be afraid. Run to Jesus. I want so badly for you to be here with me, but more than that, my prayer for you has always been that you would be free from pain and free from wheelchairs. My prayer is that you are never, ever afraid.
I want to prepare them in a way that I can not even prepare myself. Kid just rock, right?! I'm crying just writing the words, but children are wonderful at cutting to the heart of the matter.
In my talk with Sarah and Emily, as I'm describing the wonders of Heaven as I see it, I start asking Emily questions.
Me: Will there be throw up in Heaven? (strange question--I know, but Emily has a personal vendetta against puke. Throw up or sour cream in heaven would be a deal breaker for her)
"Uh-uh" Emily replies, quickly followed by "ewww".
Me: That's right Em, no ewww in Heaven.
Sarah pipes in with "maybe you shouldn't be talking about this is front of Emily".
mmmm, interesting. What's she worried about? I wonder to myself.
Me: Why not?
Sarah: Because if there's no throw up in heaven she'll definitely want to live there and she lives here with us.
Emily laughs out loud at that funny thought.
Ahhhh, my precious girl doesn't want to lose a sister. I understand Sarah, I don't want to lose her either.
Me: What about her wheelchair? It would be great for her to not need that.
Emily: Uh-uh (loudly)
Me: You want your chair with you in Heaven? I ask, completely shocked.
Emily: Yeah.
Me: But Em, you'll be able to walk, you won't need it baby.
Emily: Uh-uh.
She wants it, she can't even imagine what it's like to not need it. It's not a part of healing to her, it's just a part of her. Could I love her more than I do at this moment?
Me: What else should be there with you? (I'm laying in bed with her next to her face which prompts the next question) How about your toothbrush? You sure need it here. Do you need that there?
Emily: Uh-uh.
Giggles from both of them. That's enough for tonight. End with giggling about Heaven and toothbrushes.
She can imagine not needing to brush her teeth and decided food wasn't necessary there, but her chair is. She looks through such sweet child eyes and lets me see too.
My conversation made me think about God and what I see as healing. Do I limit God to my ideas of what I need? Emily can't imagine not needing her wheelchair; if I'm honest, I can't imagine it either. I'm so busy maintaining the status quo that I never open my mind to the infinite possibility that is God.
As I think about my children and our lives, deaths, and the moments in between I am amazed at God's unfailing love, especially in times when I feel so lost or afraid. The child He gave to me, that one day He may very well take back, teaches me everyday. Using her only 5 words she shows me that Heaven is beyond anything I can show her.
"For our dying bodies must be transformed into bodies that will never die; our mortal bodies must be transformed into immortal bodies. Then, when our dying bodies have been transformed into bodies that will never die..." 1 Corinthians 15:53-54
The events of the last few weeks have brought it to the forefront again. Emily was so very sick. I wish I could describe what it felt like to hold her, not just her physical appearance, but the way her little body felt in my arms. So small, so far from herself. She just felt "away" from me, and falling further away by the minute.
Even though it seemed distant and hypothetical, I have talked with all of my children about Heaven before. Emily and Abby more than Hannah and Sarah for obvious reasons. It's a journey I can't take them on. I don't get to go and see that they are alright. When I think about the possibility of death, my greatest concern is that they would be afraid. What if they are scared or feel alone?
After such a scare with Em, I feel the need for a more concrete coversation with them.
What exactly is Heaven?
I tell my girls that it's a wonderful place where God lives. In heaven there is no sickness. You will be able to walk and talk. You can run and sing. You will never have pain or feel hunger. It will only seem like a moment to you before Mommy and Daddy are there. If you ever feel like it's time to go, don't be afraid. Run to Jesus. I want so badly for you to be here with me, but more than that, my prayer for you has always been that you would be free from pain and free from wheelchairs. My prayer is that you are never, ever afraid.
I want to prepare them in a way that I can not even prepare myself. Kid just rock, right?! I'm crying just writing the words, but children are wonderful at cutting to the heart of the matter.
In my talk with Sarah and Emily, as I'm describing the wonders of Heaven as I see it, I start asking Emily questions.
Me: Will there be throw up in Heaven? (strange question--I know, but Emily has a personal vendetta against puke. Throw up or sour cream in heaven would be a deal breaker for her)
"Uh-uh" Emily replies, quickly followed by "ewww".
Me: That's right Em, no ewww in Heaven.
Sarah pipes in with "maybe you shouldn't be talking about this is front of Emily".
mmmm, interesting. What's she worried about? I wonder to myself.
Me: Why not?
Sarah: Because if there's no throw up in heaven she'll definitely want to live there and she lives here with us.
Emily laughs out loud at that funny thought.
Ahhhh, my precious girl doesn't want to lose a sister. I understand Sarah, I don't want to lose her either.
Me: What about her wheelchair? It would be great for her to not need that.
Emily: Uh-uh (loudly)
Me: You want your chair with you in Heaven? I ask, completely shocked.
Emily: Yeah.
Me: But Em, you'll be able to walk, you won't need it baby.
Emily: Uh-uh.
She wants it, she can't even imagine what it's like to not need it. It's not a part of healing to her, it's just a part of her. Could I love her more than I do at this moment?
Me: What else should be there with you? (I'm laying in bed with her next to her face which prompts the next question) How about your toothbrush? You sure need it here. Do you need that there?
Emily: Uh-uh.
Giggles from both of them. That's enough for tonight. End with giggling about Heaven and toothbrushes.
She can imagine not needing to brush her teeth and decided food wasn't necessary there, but her chair is. She looks through such sweet child eyes and lets me see too.
My conversation made me think about God and what I see as healing. Do I limit God to my ideas of what I need? Emily can't imagine not needing her wheelchair; if I'm honest, I can't imagine it either. I'm so busy maintaining the status quo that I never open my mind to the infinite possibility that is God.
As I think about my children and our lives, deaths, and the moments in between I am amazed at God's unfailing love, especially in times when I feel so lost or afraid. The child He gave to me, that one day He may very well take back, teaches me everyday. Using her only 5 words she shows me that Heaven is beyond anything I can show her.
"For our dying bodies must be transformed into bodies that will never die; our mortal bodies must be transformed into immortal bodies. Then, when our dying bodies have been transformed into bodies that will never die..." 1 Corinthians 15:53-54
Wednesday, February 2, 2011
Quick Emily Update:
I hope this is my last Flu 2011 update.
I was on target about Emily. She does have bronchitis (but the lungs sounded clear). She also has an infected toe, and her G-tube had some bleeding last night. That's a strange symptom that I don't see very often. She probably pulled it at some point, but in any case it's red and irritated now.
All of those things together add up to a 10 day course of antibiotics.
As far as the extreme weakness goes, he reminded me of what she's been through and said it would be at least a month before she was back to herself. What's strange is trying to remember what back to herself is. Is it Emily before she was having so many seizures? Or was that Emily when she having seizures I didn't know about?
My Emily is funny and smart. She loves school and jokes. She thinks boys are cute and puke is ewww. She loves her dog and her sisters and plays made up games with complicated (and sometimes gory) rules.
I find myself staring at her now to see if her eyes are focused and alert. I watch her body language for signs of illness. I feel her head, and listen to her chest with the stethoscope that is draped across her bed next to her favorite stuffed ferret, Leah. She is becoming a watched child instead my funny girl.
My watched child did get cleared to go back to school on Monday for 1/2 days until she is able to build her strength up. Then she can go full time again. So much better than last time she had the flu when she missed 4 months.
It amazes me that one week ago she was in the hospital after one of the most terrifying days of my life. When I carried her into that ER, I absolutely KNEW without a doubt that I was holding a child who would die without help--I'm not sure I've ever felt that before. Feared it, yes. Known it, no. She had nearly 105. fever, her heart rate was 150, her blood pressure 90/47. She was barely opening her eyes and unable to keep any fluids down. She would have made it another day, maybe two without intervention.
I'm not being morbid there. I'm being grateful. As I drove to the hospital, I couldn't help but feel overwhelmingly grateful-even through the fear--that a 20 minute drive to the hospital, an IV, antibiotics and lots of rest and my daughter would probably be alright. Then I thought of the countless mamas around the world who hold their sick and dying children with no where to go.
I'm praying for God's peace in the heavily burdened hearts of those mamas tonight. I pray he surrounds them with comfort that pours out like rain. It would truly be a peace that I do not understand because I can't fathom holding Emily so sick and feeling peace in my heart. I pray that if I ever am, I experience the true depth of His Grace.
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 (NIV)
I was on target about Emily. She does have bronchitis (but the lungs sounded clear). She also has an infected toe, and her G-tube had some bleeding last night. That's a strange symptom that I don't see very often. She probably pulled it at some point, but in any case it's red and irritated now.
All of those things together add up to a 10 day course of antibiotics.
As far as the extreme weakness goes, he reminded me of what she's been through and said it would be at least a month before she was back to herself. What's strange is trying to remember what back to herself is. Is it Emily before she was having so many seizures? Or was that Emily when she having seizures I didn't know about?
My Emily is funny and smart. She loves school and jokes. She thinks boys are cute and puke is ewww. She loves her dog and her sisters and plays made up games with complicated (and sometimes gory) rules.
I find myself staring at her now to see if her eyes are focused and alert. I watch her body language for signs of illness. I feel her head, and listen to her chest with the stethoscope that is draped across her bed next to her favorite stuffed ferret, Leah. She is becoming a watched child instead my funny girl.
My watched child did get cleared to go back to school on Monday for 1/2 days until she is able to build her strength up. Then she can go full time again. So much better than last time she had the flu when she missed 4 months.
It amazes me that one week ago she was in the hospital after one of the most terrifying days of my life. When I carried her into that ER, I absolutely KNEW without a doubt that I was holding a child who would die without help--I'm not sure I've ever felt that before. Feared it, yes. Known it, no. She had nearly 105. fever, her heart rate was 150, her blood pressure 90/47. She was barely opening her eyes and unable to keep any fluids down. She would have made it another day, maybe two without intervention.
I'm not being morbid there. I'm being grateful. As I drove to the hospital, I couldn't help but feel overwhelmingly grateful-even through the fear--that a 20 minute drive to the hospital, an IV, antibiotics and lots of rest and my daughter would probably be alright. Then I thought of the countless mamas around the world who hold their sick and dying children with no where to go.
I'm praying for God's peace in the heavily burdened hearts of those mamas tonight. I pray he surrounds them with comfort that pours out like rain. It would truly be a peace that I do not understand because I can't fathom holding Emily so sick and feeling peace in my heart. I pray that if I ever am, I experience the true depth of His Grace.
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 (NIV)
Tuesday, February 1, 2011
How's Emily?
Quick answer: not sure.
She's home from the hospital and doing alright. I brought a fairly sick little girl home, but she is improving (I think) although very, very slowly.
She's so weak. It's hard to see her like that. I keep calling her Granny. She thinks it's funny.
Come on Granny, time to eat. Let's go take a walk, Granny. Her little cackle fills the space where the breath I'm holding should be.
She reminds me of a tiny fragile Grandma. She has so little strength. She can be up 1-2 hours and then she exhausted. She falls asleep, wakes, and we're up again. She's coughing all the time and today she started running a low grade fever again. She goes to the doctor tomorrow, so I'll be thankful for a few minutes when I'm not the only one staring at her. Hopefully it's just going to take time for her to get past all of this.
Abby's still healthy. Thank God she hasn't shown any signs of being sick. Her being in school has been a blessing as Emily has really needed me.
Jeff was able to come home, which was great for Abby, but not an easy visit. It was stressful with so much going on.
Over all, I'm tired, concerned, and hopeful. I'm hoping my girls stay out of the hospital and things settle in to our normal before we have to uproot for a HUGE move.
I guess I'll just wait and see what tomorrow brings :)
She's home from the hospital and doing alright. I brought a fairly sick little girl home, but she is improving (I think) although very, very slowly.
 |
| Emily before she left the hospital |
She's so weak. It's hard to see her like that. I keep calling her Granny. She thinks it's funny.
Come on Granny, time to eat. Let's go take a walk, Granny. Her little cackle fills the space where the breath I'm holding should be.
She reminds me of a tiny fragile Grandma. She has so little strength. She can be up 1-2 hours and then she exhausted. She falls asleep, wakes, and we're up again. She's coughing all the time and today she started running a low grade fever again. She goes to the doctor tomorrow, so I'll be thankful for a few minutes when I'm not the only one staring at her. Hopefully it's just going to take time for her to get past all of this.
Abby's still healthy. Thank God she hasn't shown any signs of being sick. Her being in school has been a blessing as Emily has really needed me.
Jeff was able to come home, which was great for Abby, but not an easy visit. It was stressful with so much going on.
Over all, I'm tired, concerned, and hopeful. I'm hoping my girls stay out of the hospital and things settle in to our normal before we have to uproot for a HUGE move.
I guess I'll just wait and see what tomorrow brings :)
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