Abby's central line came out last night. The infectious disease doctors all got together and decided that the yeast in the line was too dangerous to continue with. In the end, I was fine with it. She wasn't going to be ready to get rid of it in two weeks, so there wasn't really any point in hanging on to a line that was making her sick.
She did great in the OR, and surprisingly, the biggest complication was getting a peripheral line in. It took them 6 tries to finally get an IV in her wrist that infiltrated this morning. The nurse here got one in her hand, but she's a hard stick. Hopefully this one holds until Monday. She's on the schedule for another broviac then.
She had a small bowel follow through study today. I'm anxious to see exactly what the problem is with feeding her. Immediately, we noticed the food backing up toward the stomach. She also has abnormal anatomy because of the malrotation. We hope GI will help us to figure out what to do next. It might just take more time.
I continue to feel peaceful and praise the Lord for his provision. I had high hopes of writing tonight, but I'm exhausted, so I'm heading to bed. :)
Friday, September 30, 2011
Wednesday, September 28, 2011
Still breathing
I'm so glad I named my blog Just Hang On. I couldn't have know how perfectly it would reflect our family. Hanging on to our faith, our hopes and dreams and each other.
I'm writing tonight from my own house. Jeff spent the night with Abby at the hospital and I came home to Emily and Sarah. Sarah had a tummy bug last night and stayed home from school today, but she's fine now. Emily is doing well. She's happy that I'm here, but she's also happy that Jeff is here every night with her. Being together makes it so much easier for us when Abby is is sick.
She's doing remarkably well considering all that's going on in her little body. It is truly amazing how sick someone can get and still recover. She's fighting this and responding well to antibiotics. She actually didn't have gram + rods like we thought with the second culture, so that was good. As the bacteria grew out they realized it was the same bacteria they originally found. She had it in her urine too. The yeast was really there and will likely be our biggest problem. The infectious disease doctors told us there is only a 10% chance that we can get that infection under control with the line still in.
We are trying though. She's handling her feedings rather abysmally, making hopes of not needing the line slim. We are repeating blood cultures daily. If she has two negative cultures we can keep the line and go home on antibiotics for a few weeks. Because the chance of the yeast infection recurring in the line after stopping treatment, we are only buying the amount of time she's on antibiotics to work on feed rates. Then the line has to come out.
If we can't get negative cultures by the weekend, they have to pull the line. Apparently sepsis with fungus (hate the word) can be more serious than bacteria because it's so difficult to treat. There is also a very real possibility that it could infect future lines. There is much to think about and pray about. We need answers and wisdom as we move forward.
I feel peaceful right now. There's not good reason for it, other than a gift from God. I really needed it, even for a few hours. We're all still breathing, and remarkably, still hanging on.
I'm writing tonight from my own house. Jeff spent the night with Abby at the hospital and I came home to Emily and Sarah. Sarah had a tummy bug last night and stayed home from school today, but she's fine now. Emily is doing well. She's happy that I'm here, but she's also happy that Jeff is here every night with her. Being together makes it so much easier for us when Abby is is sick.
She's doing remarkably well considering all that's going on in her little body. It is truly amazing how sick someone can get and still recover. She's fighting this and responding well to antibiotics. She actually didn't have gram + rods like we thought with the second culture, so that was good. As the bacteria grew out they realized it was the same bacteria they originally found. She had it in her urine too. The yeast was really there and will likely be our biggest problem. The infectious disease doctors told us there is only a 10% chance that we can get that infection under control with the line still in.
We are trying though. She's handling her feedings rather abysmally, making hopes of not needing the line slim. We are repeating blood cultures daily. If she has two negative cultures we can keep the line and go home on antibiotics for a few weeks. Because the chance of the yeast infection recurring in the line after stopping treatment, we are only buying the amount of time she's on antibiotics to work on feed rates. Then the line has to come out.
If we can't get negative cultures by the weekend, they have to pull the line. Apparently sepsis with fungus (hate the word) can be more serious than bacteria because it's so difficult to treat. There is also a very real possibility that it could infect future lines. There is much to think about and pray about. We need answers and wisdom as we move forward.
I feel peaceful right now. There's not good reason for it, other than a gift from God. I really needed it, even for a few hours. We're all still breathing, and remarkably, still hanging on.
Tuesday, September 27, 2011
devastated
Did I say I would be devastated if her line culture was positive? Well, I am.
Her line was positive for a different bacteria (gram + rods) and yeast. We are repeating the culture, but will certainly loose the line.
Will update more later. Abby still looks good, so thank God for that.
I am...I don't even know.
I feel like devastated is too strong of a word. It should be reserved for tornado victims, but it's the only word I can come up with for what I feel. It's devastating to go through this again.
Monday, September 26, 2011
:))))
Okay, better day.
Abby's still pale, but no fever. She's more alert today, which always helps with feeling better (I mean me).
I think I have good news. She definitely has a line infection. She grew enterococcus--which is responsible for 1/3 of all line infections. At least it's not a weirdo-no-one-ever-gets-that infection. In true Abby fashion, her white count is down below 3 today. So, the good news part! She seems to be responding well to the antibiotics. The infectious disease docs think that as long as the repeat line culture (they drew today) is negative, we can keep the line.
Let me repeat those words please...WE CAN KEEP THE LINE! No surgeries scheduled to stop the belly. No access issues or rushing a sick child through another illness to try to get rid of the line. Don't get me wrong, we need to get rid of it, but we may have bought some more time.
She'll need at least 3 more weeks of IV antibiotics, maybe as much as 6, but we can do that at home.
As long as the line culture is negative and she remains fever-free we could go as soon as Wednesday or Thursday. I am so excited about that :)) Finally, a turn in our favor. I'm not saying that this is a good situation, I'm only saying that it's finally not so horribly complicated. We admitted her with a serious problem; we are treating a serious problem--but that's all.
I am praying that this goes exactly the way we think it will. I'm trying to maintain a reasonable sense of expectations given Abby's history, but I just don't want to be reasonable. I want to be happy and excited that we might actually spend less than a week in the hospital with a line infection. I will be crushed if that changes, so sorry for that post if it comes. Tonight, I am incredibly grateful and outright relieved... and completely :)))))!!
Abby's still pale, but no fever. She's more alert today, which always helps with feeling better (I mean me).
I think I have good news. She definitely has a line infection. She grew enterococcus--which is responsible for 1/3 of all line infections. At least it's not a weirdo-no-one-ever-gets-that infection. In true Abby fashion, her white count is down below 3 today. So, the good news part! She seems to be responding well to the antibiotics. The infectious disease docs think that as long as the repeat line culture (they drew today) is negative, we can keep the line.
Let me repeat those words please...WE CAN KEEP THE LINE! No surgeries scheduled to stop the belly. No access issues or rushing a sick child through another illness to try to get rid of the line. Don't get me wrong, we need to get rid of it, but we may have bought some more time.
She'll need at least 3 more weeks of IV antibiotics, maybe as much as 6, but we can do that at home.
As long as the line culture is negative and she remains fever-free we could go as soon as Wednesday or Thursday. I am so excited about that :)) Finally, a turn in our favor. I'm not saying that this is a good situation, I'm only saying that it's finally not so horribly complicated. We admitted her with a serious problem; we are treating a serious problem--but that's all.
I am praying that this goes exactly the way we think it will. I'm trying to maintain a reasonable sense of expectations given Abby's history, but I just don't want to be reasonable. I want to be happy and excited that we might actually spend less than a week in the hospital with a line infection. I will be crushed if that changes, so sorry for that post if it comes. Tonight, I am incredibly grateful and outright relieved... and completely :)))))!!
Sunday, September 25, 2011
Here I am again
Her temp spiked to 103.7 and again had the freezing cold hands and feet. That just freaks me out! She looked bad all day Saturday and knew our time at home was dwindling. I finished packing the bag I'd started. Jeff's cousin came over to stay with Em and Sarah so we could take Abby together.
We took her to Brenner Children's Hospital which is about 35 minutes from our new house. They've been great. Very comprehensive in the ER, and no wait--a pale shivering child with nearly104 fever might have helped with that. I knew it had to be the line, but still hoped it wasn't.
They began treating her with antibiotics in the ER, and continued when we got to her room around 4am. Jeff went back to Em around 1am when we knew they were keeping her. For about 2 hours in the early morning she shook like I've never seen anyone shake before. Her temp was only 100.4, so they think the violent shaking was just from the infection. I was so thankful we brought her here, because if I had seen that at home, I probably would have called 911.
Her white count was 5.7 again (same as the last time she had a line infection). Apparently that's high for Abby. We were told we would stay at least 48 hours to rule out the line infection, and started her on the dreaded Vancomycin. She immediately broke out in hives on her neck, chest and back--even with benadryl. She looked so horrible though, it was worth the nasty antibiotic.
She's run a fever all day today, although lower than before. Her high today was 101.8, but not less than 100. This evening we got word that the initial line culture is positive. NOT positive news. Tomorrow the barrage of infectious disease docs, and residents, GI, and attending's begins. Oh my, I miss our regular Dr.'s so much right now.
I can't begin to see where this is all heading (mostly because of my head stuck down deep in the sand), but we're here. Again.
Friday, September 23, 2011
thinking
As previously discussed, leaving Abby was really hard.
Little did I know that coming home would be equally as hard. Not because I didn't want to come home, but because after being with her for 8 solid months, I didn't realize what a shock it would be to see her.
It literally aches to see my little girl like this. I wasn't prepared for it. If anyone should know what to expect, it would be me, but it's like it happened all over again.
I rubbed her sick little tummy and let silent tears fall as the scarred, swollen surface rose under my hand. I remember looking at her belly before her baclofen pump surgery thinking how perfect it was. 2 years ago, she had never had anything wrong with her, other than CP--which was plenty. I think it's good to have some perspective. It helped me to be able to see her more clearly, even if it made me sad.
She's had a difficult week. She ran a low grade fever the whole time. 99.9 on Monday. 100.2 on Tuesday. 100.5 all day Wednesday. 100.8 after her nap on Thursday. Today 102.2. Forget the natural progression today. She just didn't feel good. I prayed all day. I did not want to take her back to the hospital. Oh my goodness, I don't want to be there. I know she needs so much and I'm not sure what to do with her. Her weight is down to where she was in February when we started TPN for the first time. Maybe that's what's going on with the fever. Who knows.
I feel like I should be panicking about the line, but I just don't have the energy. I'm worried, but her temp did go down to 100.8 this evening without Motrin. I am thanking God for that and counting my blessings. I did start getting a hospital bag together, but I didn't finish it.
Abby's been out of the hospital much longer than I thought she would, so Thank you Lord! Now I'm praying that when we go back, it will be the last time. I'm not sure how much longer we can all go through this. This time, I pray that God would let her finally be well. I'm anxious to write about something (anything) other than sick kids. I guess tomorrow we'll know more...I'm cringing a little with the words. I don't always want to know. :)
Little did I know that coming home would be equally as hard. Not because I didn't want to come home, but because after being with her for 8 solid months, I didn't realize what a shock it would be to see her.
It literally aches to see my little girl like this. I wasn't prepared for it. If anyone should know what to expect, it would be me, but it's like it happened all over again.
I rubbed her sick little tummy and let silent tears fall as the scarred, swollen surface rose under my hand. I remember looking at her belly before her baclofen pump surgery thinking how perfect it was. 2 years ago, she had never had anything wrong with her, other than CP--which was plenty. I think it's good to have some perspective. It helped me to be able to see her more clearly, even if it made me sad.
She's had a difficult week. She ran a low grade fever the whole time. 99.9 on Monday. 100.2 on Tuesday. 100.5 all day Wednesday. 100.8 after her nap on Thursday. Today 102.2. Forget the natural progression today. She just didn't feel good. I prayed all day. I did not want to take her back to the hospital. Oh my goodness, I don't want to be there. I know she needs so much and I'm not sure what to do with her. Her weight is down to where she was in February when we started TPN for the first time. Maybe that's what's going on with the fever. Who knows.
I feel like I should be panicking about the line, but I just don't have the energy. I'm worried, but her temp did go down to 100.8 this evening without Motrin. I am thanking God for that and counting my blessings. I did start getting a hospital bag together, but I didn't finish it.
Abby's been out of the hospital much longer than I thought she would, so Thank you Lord! Now I'm praying that when we go back, it will be the last time. I'm not sure how much longer we can all go through this. This time, I pray that God would let her finally be well. I'm anxious to write about something (anything) other than sick kids. I guess tomorrow we'll know more...I'm cringing a little with the words. I don't always want to know. :)
Tuesday, September 20, 2011
Mountains and valley's
Do you ever wonder if mountains exist simply to prove that there are valley's below?
Why does it seem that each awesome, amazing, exactly perfect experience is followed by the polar opposite?
I had an amazing time at the women's retreat. I loved spending time with the ladies and the speaker really spoke to me. It was one of those times when I would have a conversation with someone, trying to explain what I was going through and sit in the next session and there it was.
She broke down the verse about loving the Lord your God with all you heart, with all your soul, with all your strength, and with all your mind.
I've been trying to explain what it feels like to go through what we have and still trust God's plan, even though I don't love the road we've traveled.
In breaking down the Greek translations of the words love, soul, mind, and strength (which ya'll can be grateful I won't try to do), I was struck by the completeness of the way God wants to be loved. Not just our idea of a feeling, but with action and motivation. What I loved most, was understanding that one may not always be able to love the Lord in all of those areas all the time well. But, in striving to love Him and others that way, sometimes one of those areas of love can carry us through.
I don't know if I explained it well, but she did. In my mind I trust the sovereignty of God and know that He loves in all ways well. I KNOW that we are in his hands. My heart is heavy with the burden of a sick girl and it's hard for me to love Him emotionally well now. I am hurt, and sad and I don't feel that warm fuzzy love I wish I could. That is why loving Him well with my mind and my strength pulls me through each day. I can choose to love, even when I don't necessarily feel it. She went on to explain that the level of intimacy we have with God extends to others.
It was exactly what I needed to hear. That combined with awesome worship music, walks on the beach, and laughing with friends made my time away from Abby well spent.
I rented a car to drive back from Jacksonville for two reasons. 1. To have time to decompress before jumping back in to life. 2. It was cheaper.
The first part of the trip was perfect. I had time in prayer and with my thoughts. The second part was why I needed the trip to begin with.
My family called me more and more frequently as I got closer to home. I smiled at this the first half dozen times. Then I hit traffic on a Sunday afternoon. The second I hit the NC line, I was in bumper to bumper traffic--and the phone didn't seem to stop ringing. What should have taken 90 minutes took more than three hours. I got lost coming in to Greensboro, called my husband for directions and just ended up mad with his "just read the signs keep driving, you'll find something you know" comment. Ugh!! Then I drove all around the city feeling myself fall further away from the mountain top.
I came home to a nauseated, sweaty Abby. Her broviac site is red. The house is nowhere near the way I left it. My husband was frustrated and needed to work. Sarah's bed had broken, Hannah came home from the weekend and ransacked my closet, and my poor Emily had a nasty cold, which she told me about by repeatedly blowing her nose on me. Hannah and her friend had gone back to Pfeiffer, and I couldn't get her by phone to be sure they made it in ok. By 10 pm, Jeff was at work, Abby asleep, Sarah's mattress on the floor so she could sleep, the dog out and back in, a single load of laundry started, and Hannah freaking me out! I finally called campus police to check on her which she did not appreciate. A few words of advice Hannah---PICK UP YOUR PHONE!!
I rocked Em and gave her some cold medicine which I'm not supposed to do with her seizure meds, but she needed a break from the constant nose blowing. She slept on me for about an hour and I finally dragged my battle scarred self into bed around midnight.
Yesterday Emily was home with her cold and Abby ran a bit of a fever all day. Her feedings are going awful and I am left wondering. What?
Why must I drive (literally) directly from the mountain top with good intentions and full heart into the valley with a bad attitude and an insane life? I have no real answers other than this is life. It's real and it's hard. I have to choose to love Him and my family even greater with my mind and my strength, because I'm not feeling fuzzy.
I'll get more into scary Abby soon. And I'm sure I'll get back into the swing of things too. One thing's for sure, I definitely live in the valley. Not 90210, but the one the Lord has led us to, so I'm trusting Him with everything I have to give.
Why does it seem that each awesome, amazing, exactly perfect experience is followed by the polar opposite?
I had an amazing time at the women's retreat. I loved spending time with the ladies and the speaker really spoke to me. It was one of those times when I would have a conversation with someone, trying to explain what I was going through and sit in the next session and there it was.
She broke down the verse about loving the Lord your God with all you heart, with all your soul, with all your strength, and with all your mind.
I've been trying to explain what it feels like to go through what we have and still trust God's plan, even though I don't love the road we've traveled.
In breaking down the Greek translations of the words love, soul, mind, and strength (which ya'll can be grateful I won't try to do), I was struck by the completeness of the way God wants to be loved. Not just our idea of a feeling, but with action and motivation. What I loved most, was understanding that one may not always be able to love the Lord in all of those areas all the time well. But, in striving to love Him and others that way, sometimes one of those areas of love can carry us through.
I don't know if I explained it well, but she did. In my mind I trust the sovereignty of God and know that He loves in all ways well. I KNOW that we are in his hands. My heart is heavy with the burden of a sick girl and it's hard for me to love Him emotionally well now. I am hurt, and sad and I don't feel that warm fuzzy love I wish I could. That is why loving Him well with my mind and my strength pulls me through each day. I can choose to love, even when I don't necessarily feel it. She went on to explain that the level of intimacy we have with God extends to others.
It was exactly what I needed to hear. That combined with awesome worship music, walks on the beach, and laughing with friends made my time away from Abby well spent.
I rented a car to drive back from Jacksonville for two reasons. 1. To have time to decompress before jumping back in to life. 2. It was cheaper.
The first part of the trip was perfect. I had time in prayer and with my thoughts. The second part was why I needed the trip to begin with.
My family called me more and more frequently as I got closer to home. I smiled at this the first half dozen times. Then I hit traffic on a Sunday afternoon. The second I hit the NC line, I was in bumper to bumper traffic--and the phone didn't seem to stop ringing. What should have taken 90 minutes took more than three hours. I got lost coming in to Greensboro, called my husband for directions and just ended up mad with his "just read the signs keep driving, you'll find something you know" comment. Ugh!! Then I drove all around the city feeling myself fall further away from the mountain top.
I came home to a nauseated, sweaty Abby. Her broviac site is red. The house is nowhere near the way I left it. My husband was frustrated and needed to work. Sarah's bed had broken, Hannah came home from the weekend and ransacked my closet, and my poor Emily had a nasty cold, which she told me about by repeatedly blowing her nose on me. Hannah and her friend had gone back to Pfeiffer, and I couldn't get her by phone to be sure they made it in ok. By 10 pm, Jeff was at work, Abby asleep, Sarah's mattress on the floor so she could sleep, the dog out and back in, a single load of laundry started, and Hannah freaking me out! I finally called campus police to check on her which she did not appreciate. A few words of advice Hannah---PICK UP YOUR PHONE!!
I rocked Em and gave her some cold medicine which I'm not supposed to do with her seizure meds, but she needed a break from the constant nose blowing. She slept on me for about an hour and I finally dragged my battle scarred self into bed around midnight.
Yesterday Emily was home with her cold and Abby ran a bit of a fever all day. Her feedings are going awful and I am left wondering. What?
Why must I drive (literally) directly from the mountain top with good intentions and full heart into the valley with a bad attitude and an insane life? I have no real answers other than this is life. It's real and it's hard. I have to choose to love Him and my family even greater with my mind and my strength, because I'm not feeling fuzzy.
I'll get more into scary Abby soon. And I'm sure I'll get back into the swing of things too. One thing's for sure, I definitely live in the valley. Not 90210, but the one the Lord has led us to, so I'm trusting Him with everything I have to give.
Wednesday, September 14, 2011
Shakin' in my boots...
..Or flip flops as the case may be.
Abby has had an awful day. She's so nauseated and just overall sick today. I had to stop her feedings. I never stop her feeds. Her broviac site is red and she is completely "off".
Em looked a little icky after school, making me panic about pulling the J-line. Could it have been helping to support the mesenteric artery so that her small bowel was open? I have no good reason to think that, so I'm literally making stuff up as I go along.
I'm supposed to be on a plane in 8 hours.
8 little hours and so many things could happen. It has never been so hard to leave. I know I need the break and I'll be better for it, but leaving Abby so sick is awful. I know how long she's been this sick, but it doesn't change the way it feels. There are so many things I do everyday that I can't tell someone else to do. I look at her and evaluate constantly. I try to stay one step ahead, but how do you put that down on paper for someone else to do? It's not that I don't think anyone else can take care of her, but I know no one else knows what each and every look on her face means.
I'm shaking. I have to trust that she's safe out of my site. I had no idea it would be this hard to leave. Every single night I put her to bed wondering if she'll wake up in the morning. For a while I was choosing her night clothes thinking "no, not that one, I wouldn't want her to die wearing that ugly shirt". I had to make myself stop that. I have to care for my living child, not a dying one. As I prepare to leave tomorrow, I have to do the same. Stop myself from wondering if she'll be alright and trust that she is exactly where she's supposed to be. Her daddy loves her and can take care of her. Her grandma completed IV therapy 101 today and the Lord has her in His hands.
Oh how very shaky mine are as I let her go, even for a weekend.
Abby has had an awful day. She's so nauseated and just overall sick today. I had to stop her feedings. I never stop her feeds. Her broviac site is red and she is completely "off".
Em looked a little icky after school, making me panic about pulling the J-line. Could it have been helping to support the mesenteric artery so that her small bowel was open? I have no good reason to think that, so I'm literally making stuff up as I go along.
I'm supposed to be on a plane in 8 hours.
8 little hours and so many things could happen. It has never been so hard to leave. I know I need the break and I'll be better for it, but leaving Abby so sick is awful. I know how long she's been this sick, but it doesn't change the way it feels. There are so many things I do everyday that I can't tell someone else to do. I look at her and evaluate constantly. I try to stay one step ahead, but how do you put that down on paper for someone else to do? It's not that I don't think anyone else can take care of her, but I know no one else knows what each and every look on her face means.
I'm shaking. I have to trust that she's safe out of my site. I had no idea it would be this hard to leave. Every single night I put her to bed wondering if she'll wake up in the morning. For a while I was choosing her night clothes thinking "no, not that one, I wouldn't want her to die wearing that ugly shirt". I had to make myself stop that. I have to care for my living child, not a dying one. As I prepare to leave tomorrow, I have to do the same. Stop myself from wondering if she'll be alright and trust that she is exactly where she's supposed to be. Her daddy loves her and can take care of her. Her grandma completed IV therapy 101 today and the Lord has her in His hands.
Oh how very shaky mine are as I let her go, even for a weekend.
Tuesday, September 13, 2011
trying
I'm really trying to be back, but I don't exactly know where back is. I feel like I'm looking for a way back to something that feels familiar, but it's just not there. I'm doing alright here in NC. My days are as carefully controlled as I can make them. We all walk around on eggshells because we know Abby is still so sick and we're just not sure what she needs.
We took her to the GI specialist here on Friday. I was so thankful to get her in so quickly and it seems like it'll be good for her. They have a motility clinic with doctors that specialize in GI dysfunction. I hope when we go to clinic next month we'll get more answers. The doctor we saw on Friday wanted to put her in the hospital, but I managed to talk her out of it, at least through the weekend. We got IV fluids delivered to the house, so I thought we could last a while longer.
We are just struggling through feedings and horrible nausea most days. I wish it was possible for her to not eat at all. I just dread hooking up her feeds everyday. I know she needs it, but like I've been saying for months, I wish she didn't. I want her off of IV fluids. The broviac is like a ticking time bomb. This one is much more difficult to maintain. It was red around the site last week, but we got some bactroban on it and it seems better.
We still ended up in the ER with her on Sunday anyway (because what else would we do?). She hit her hand on a display desk at Walmart on Saturday and it bruised so badly, I thought it was broken. Thankfully it wasn't, but it looks awful. Her low platelets and maybe the heparin she's on for the line are making her bleed a little more than normal, so it looks much worse than the injury is.
Emily has started school and is doing well. So far, I am much more impressed with the schools here than in Florida. They seemed excited to get her in and working and they had no problem putting her in the gen ed. She's been really happy. She's gaining weight and overall doing great. We started feeding her by mouth again and bolus feeding through the G-tube (not the J she got for the SMA syndrome). Tonight her G-tube clogged and I could not get it moving. I tried everything but it just wouldn't work. Since we were feeding through the G-tube anyway, I decided to pull the g-j tube and put in a regular old g-tube. I was nervous about it because of the length of the tube, but it was fine. I'm glad it's out and we're back to normal with her.
Sarah is adjusting to middle school fairly well. It's a transition for her, but she's starting to catch on. She's not loving all the homework and I'm not either, but we're handling it.
Hannah is extremely happy and doing great at Pfeiffer. I hope she's studying and doing well, but we'll see ;)
Overall, I just want off this train. I am so tired of going through so much. I'm leaving Abby this weekend for the first time since last October. I'm going to our annual women's retreat at our church. I really need this time, but leaving is hard. Abby is precarious at best. I don't really feel safe leaving her, but I need to go. I need to spend some quiet time with the Lord and hear what He is trying to speak to my heart.
Our journey in the last year has been unbelievable. I've got to somehow come to grips with where we are now and try to live in this moment. Sometimes when Abby is having a really hard day, I pick up that long 13 year old girl and hold her in my lap in the recliner. We rock and talk and I look at her long, sweet fingers and kiss her face. Being able to climb up into her mommas lap and be held takes just a little of her hurt away for minute.
I really believe that our faith should be able to provide that same sense of security and relieving of burdens that Abby gets from me. I should be able to climb up into the Father's lap and find peace. I should be able to snuggle into His word and find comfort. I haven't found that lately and I feel more lost. I'm praying this weekend will be that time for me. A time to renew and refill.
Please pray that Abby would hang on through the weekend out of the hospital and fever free. Pray she would have a great time with her dad and grandma and that they would be strengthened as they care for her. It's not an easy job. :)
We took her to the GI specialist here on Friday. I was so thankful to get her in so quickly and it seems like it'll be good for her. They have a motility clinic with doctors that specialize in GI dysfunction. I hope when we go to clinic next month we'll get more answers. The doctor we saw on Friday wanted to put her in the hospital, but I managed to talk her out of it, at least through the weekend. We got IV fluids delivered to the house, so I thought we could last a while longer.
We are just struggling through feedings and horrible nausea most days. I wish it was possible for her to not eat at all. I just dread hooking up her feeds everyday. I know she needs it, but like I've been saying for months, I wish she didn't. I want her off of IV fluids. The broviac is like a ticking time bomb. This one is much more difficult to maintain. It was red around the site last week, but we got some bactroban on it and it seems better.
We still ended up in the ER with her on Sunday anyway (because what else would we do?). She hit her hand on a display desk at Walmart on Saturday and it bruised so badly, I thought it was broken. Thankfully it wasn't, but it looks awful. Her low platelets and maybe the heparin she's on for the line are making her bleed a little more than normal, so it looks much worse than the injury is.
Emily has started school and is doing well. So far, I am much more impressed with the schools here than in Florida. They seemed excited to get her in and working and they had no problem putting her in the gen ed. She's been really happy. She's gaining weight and overall doing great. We started feeding her by mouth again and bolus feeding through the G-tube (not the J she got for the SMA syndrome). Tonight her G-tube clogged and I could not get it moving. I tried everything but it just wouldn't work. Since we were feeding through the G-tube anyway, I decided to pull the g-j tube and put in a regular old g-tube. I was nervous about it because of the length of the tube, but it was fine. I'm glad it's out and we're back to normal with her.
Sarah is adjusting to middle school fairly well. It's a transition for her, but she's starting to catch on. She's not loving all the homework and I'm not either, but we're handling it.
Hannah is extremely happy and doing great at Pfeiffer. I hope she's studying and doing well, but we'll see ;)
Overall, I just want off this train. I am so tired of going through so much. I'm leaving Abby this weekend for the first time since last October. I'm going to our annual women's retreat at our church. I really need this time, but leaving is hard. Abby is precarious at best. I don't really feel safe leaving her, but I need to go. I need to spend some quiet time with the Lord and hear what He is trying to speak to my heart.
Our journey in the last year has been unbelievable. I've got to somehow come to grips with where we are now and try to live in this moment. Sometimes when Abby is having a really hard day, I pick up that long 13 year old girl and hold her in my lap in the recliner. We rock and talk and I look at her long, sweet fingers and kiss her face. Being able to climb up into her mommas lap and be held takes just a little of her hurt away for minute.
I really believe that our faith should be able to provide that same sense of security and relieving of burdens that Abby gets from me. I should be able to climb up into the Father's lap and find peace. I should be able to snuggle into His word and find comfort. I haven't found that lately and I feel more lost. I'm praying this weekend will be that time for me. A time to renew and refill.
Please pray that Abby would hang on through the weekend out of the hospital and fever free. Pray she would have a great time with her dad and grandma and that they would be strengthened as they care for her. It's not an easy job. :)
Sunday, September 4, 2011
Zofran
We have had a Zofran filled 36 hours. With constant anti-nausea meds, we've been able to get Abby through what I think is a tummy bug.
Emily started gagging and seeming sick last night. I won't say I was relieved that she felt bad, but it was more comforting to not continuously rack my brain for possible causes of Abby's illness. She ran a low constant fever on Saturday, but today she seems better.
The nausea is ever present, but I think I've gotten enough of the feedings in her to get her through. I ran IV fluids last night too, which seemed to help.
After Emily getting sick last night, she's seemed fine most of today. Just a little more tired than usual.
The panic is beginning to subside and I think we are over the worst of it. Whew!!
I was able to enjoy Hannah being home this weekend and we even got some stuff done around here! I am thanking the Lord for answered prayers and unbelievably grateful that my child is home where she belongs :)
Emily started gagging and seeming sick last night. I won't say I was relieved that she felt bad, but it was more comforting to not continuously rack my brain for possible causes of Abby's illness. She ran a low constant fever on Saturday, but today she seems better.
The nausea is ever present, but I think I've gotten enough of the feedings in her to get her through. I ran IV fluids last night too, which seemed to help.
After Emily getting sick last night, she's seemed fine most of today. Just a little more tired than usual.
The panic is beginning to subside and I think we are over the worst of it. Whew!!
I was able to enjoy Hannah being home this weekend and we even got some stuff done around here! I am thanking the Lord for answered prayers and unbelievably grateful that my child is home where she belongs :)
Saturday, September 3, 2011
Panic
Abby woke up retching this morning. Gagging and trying desperately to throw up past her NISSEN (reflux repair).
Panic. That's all I feel is cold, numb, sweaty panic. I recognize that this is not a normal response to a pukey kid, but she's not a normal-response type of child.
She's kind-of pale. She looks thin. I vented her g-tube. Nothing.
More panic. She's always nauseated when her tummy's full or we're feeding her. This is first thing in the morning and she's empty.
No fever--that's good.
Run for the Zofran and give it slowly. More gagging.
What's wrong? Why is she so sick. Just one weekend out of the hospital is what I was looking forward to. Hannah's home for a visit and I just couldn't wait for our first weekend all together again.
It doesn't matter what's wrong with Abby. If I can't feed her, I can't keep her home. Even if it's just a little tummy bug. I'm trying so hard to transition her off of IV fluids; I'm giving her a liter every other night. Last night was her off night. I hoped to stop completely this week.
It feels like my whole world just stops spinning for a second and then starts again in a different direction.
I've only known she was sick for an hour. So maybe this is just a crazy fluke and she'll be fine. Even as I type the words my momma-instincts tighten my chest. I know this isn't okay for her. I'm praying I'm wrong and at the same time preparing for another trip to the hospital.
Last week I almost defiantly--maybe faithfully---put my hospital duffel bag at the very top of the closet where I could barely reach it. I didn't want it sitting out in my room as it has been waiting to be filled. I am praying...no, begging God for a break. No more hospitals for a while.
Panic. That's all I feel is cold, numb, sweaty panic. I recognize that this is not a normal response to a pukey kid, but she's not a normal-response type of child.
She's kind-of pale. She looks thin. I vented her g-tube. Nothing.
More panic. She's always nauseated when her tummy's full or we're feeding her. This is first thing in the morning and she's empty.
No fever--that's good.
Run for the Zofran and give it slowly. More gagging.
What's wrong? Why is she so sick. Just one weekend out of the hospital is what I was looking forward to. Hannah's home for a visit and I just couldn't wait for our first weekend all together again.
It doesn't matter what's wrong with Abby. If I can't feed her, I can't keep her home. Even if it's just a little tummy bug. I'm trying so hard to transition her off of IV fluids; I'm giving her a liter every other night. Last night was her off night. I hoped to stop completely this week.
It feels like my whole world just stops spinning for a second and then starts again in a different direction.
I've only known she was sick for an hour. So maybe this is just a crazy fluke and she'll be fine. Even as I type the words my momma-instincts tighten my chest. I know this isn't okay for her. I'm praying I'm wrong and at the same time preparing for another trip to the hospital.
Last week I almost defiantly--maybe faithfully---put my hospital duffel bag at the very top of the closet where I could barely reach it. I didn't want it sitting out in my room as it has been waiting to be filled. I am praying...no, begging God for a break. No more hospitals for a while.
Thursday, September 1, 2011
I'm back
Sorry for the long break, but it wasn't really a break. I've worked harder than I've ever worked in my life in the last few weeks.
As soon as Abby got out of the hospital we made plans to move. I packed non-stop in between caring for the kids. Jeff came in, we got the truck the next day, loaded it for two straight days and then hit the road with the kids. The trip went remarkably well and was honestly much easier with Emily and Abby not needing to eat. The running tube feedings all day made a much faster trip. I always feel guilty when I say that. I still feel like they should eat, even if it's not happening.
We pulled in Friday night and first thing Saturday morning Jeff and I took Hannah to Pfeiffer. I would have probably had tons of tears if I hadn't been so exhausted. As it was, getting her there was a MAJOR accomplishment and all I felt was grateful. I teared up a little as I thought of my tiny 4 pound baby who made me a mother, challenged and taught me. But then I did what every mom should do who gets her child to that place in life. I smiled and patted myself on the back for a minute. She's a good kid. She loves the Lord and sending a child into the world with a love for her Jesus is a blessing.
When we came home from Pfeiffer, Jessica (our helper) was sick, sick, sick. We had an entire house to unpack and someone else to take care of. We took her to the hospital where they discovered she had a large kidney stone. She went to surgery that night. I sat in a surgical waiting room barely 24 hours after crossing that state line. Surreal doesn't even touch it. She was sick until she able to hop a plane back to Fl. Somewhere in the middle of all of that--I'm not even sure where now, I broke my toe. It's not that big of a deal, except it hurts and it's another thing to think about.
Our new house is sweet. It has lots of North Carolina charm. We are pretty well settled. There's always something to do, but that's okay because I need to fill my days with something, right?
Speaking of Abby, she doing alright. She spent the weekend in the hospital because she ran a fever Thursday night and then started having diarrhea. She has C-diff. which is a nasty bacterial infection of the colon. It's common after long hospitalizations and antibiotic courses. Thankfully her central line is doing fine. That is always the concern with any fever. We are treating the infection, but oh my goodness---this is a yucky problem to have. Bleach is the only thing that kills the bacteria on surfaces, so we are constantly bleaching everything and washing hands all the time. Beyond the inconvenience of it, Abby needs her calories and fluids. So far, she's handling it. I've pushed her pretty hard with rate. We're trying to take her off of IV fluids. I don't know if it will work, but I want her back in school and our lives back to normal, so I'm going to try until there is absolutely no other choice.
Sarah started school on time here, Emily should start next week. All of that it's going well. The girls have been pretty good and uncharacteristically cooperative. There are no words for how grateful I am for that. We have no helpers here and I am exhausted most days, so the girls helping me is unexpected and awesome.
God has certainly been good to us through this transition. I wish I could say I've been so good through it all. It's been a struggle for me. I wish I had a great attitude through the whole thing. But Jeff and I loading that truck together...man we might as well have been packing nuclear bombs. Thankfully we are settling in together too. I forgot how hard marriage is. Silly me. Grace, grace, grace is all I can say. Thankful for grace that I am in such desperate need of --both from my husband and the Lord.
The more settled in we are the better I feel. The constant possibility of Abby going into the hospital made this so much more difficult. And then she did go in the hospital. And we got through it. And we will continue to.
This is the verse I am clinging to right now. I love what is says and how it speaks to my heart and my situation.
“Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland." Isaiah 43:18-19
As soon as Abby got out of the hospital we made plans to move. I packed non-stop in between caring for the kids. Jeff came in, we got the truck the next day, loaded it for two straight days and then hit the road with the kids. The trip went remarkably well and was honestly much easier with Emily and Abby not needing to eat. The running tube feedings all day made a much faster trip. I always feel guilty when I say that. I still feel like they should eat, even if it's not happening.
We pulled in Friday night and first thing Saturday morning Jeff and I took Hannah to Pfeiffer. I would have probably had tons of tears if I hadn't been so exhausted. As it was, getting her there was a MAJOR accomplishment and all I felt was grateful. I teared up a little as I thought of my tiny 4 pound baby who made me a mother, challenged and taught me. But then I did what every mom should do who gets her child to that place in life. I smiled and patted myself on the back for a minute. She's a good kid. She loves the Lord and sending a child into the world with a love for her Jesus is a blessing.
When we came home from Pfeiffer, Jessica (our helper) was sick, sick, sick. We had an entire house to unpack and someone else to take care of. We took her to the hospital where they discovered she had a large kidney stone. She went to surgery that night. I sat in a surgical waiting room barely 24 hours after crossing that state line. Surreal doesn't even touch it. She was sick until she able to hop a plane back to Fl. Somewhere in the middle of all of that--I'm not even sure where now, I broke my toe. It's not that big of a deal, except it hurts and it's another thing to think about.
Our new house is sweet. It has lots of North Carolina charm. We are pretty well settled. There's always something to do, but that's okay because I need to fill my days with something, right?
 |
| I love this view outside of the window |
 |
| wood burning fire place in my dining room |
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| Gas fireplace in the den. |
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| Emily's room--still needs work, but love the size :) |
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| Our little kitchen, this was the hardest to get used to! |
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| LOVE that my van fits in the car port. No more running in the rain with wheelchairs~ |
Speaking of Abby, she doing alright. She spent the weekend in the hospital because she ran a fever Thursday night and then started having diarrhea. She has C-diff. which is a nasty bacterial infection of the colon. It's common after long hospitalizations and antibiotic courses. Thankfully her central line is doing fine. That is always the concern with any fever. We are treating the infection, but oh my goodness---this is a yucky problem to have. Bleach is the only thing that kills the bacteria on surfaces, so we are constantly bleaching everything and washing hands all the time. Beyond the inconvenience of it, Abby needs her calories and fluids. So far, she's handling it. I've pushed her pretty hard with rate. We're trying to take her off of IV fluids. I don't know if it will work, but I want her back in school and our lives back to normal, so I'm going to try until there is absolutely no other choice.
Sarah started school on time here, Emily should start next week. All of that it's going well. The girls have been pretty good and uncharacteristically cooperative. There are no words for how grateful I am for that. We have no helpers here and I am exhausted most days, so the girls helping me is unexpected and awesome.
God has certainly been good to us through this transition. I wish I could say I've been so good through it all. It's been a struggle for me. I wish I had a great attitude through the whole thing. But Jeff and I loading that truck together...man we might as well have been packing nuclear bombs. Thankfully we are settling in together too. I forgot how hard marriage is. Silly me. Grace, grace, grace is all I can say. Thankful for grace that I am in such desperate need of --both from my husband and the Lord.
The more settled in we are the better I feel. The constant possibility of Abby going into the hospital made this so much more difficult. And then she did go in the hospital. And we got through it. And we will continue to.
This is the verse I am clinging to right now. I love what is says and how it speaks to my heart and my situation.
“Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland." Isaiah 43:18-19
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