I know, I know -- incredibly boring title. Sorry, friends. I'm fresh out of anything creative or interesting.
For those of you who read this blog simply to keep up on Avery's progress, I'll not keep you in suspense. He is still in the hospital. Last time I posted, he had been readmitted only 12 hours after his discharge. After four days in the hospital, he was once again discharged. Phillip, Emerson, Avery, and I had almost 48 more hours before he once again spiked a fever, and Phillip made another midnight trip to the ER, where he was immediately admitted. That has been nearly a week ago. We're hoping that perhaps tomorrow he will be discharged once again. His temp was borderline this evening (it's not really considered a fever until 100.4...he was like 99.9), so I'm sure hoping and praying that he doesn't heat up. As far as an explanation for the fevers, the best we can figure is that his immune system is still so weak and being suppressed with anti-rejection drugs that any bug at all is causing him to run a fever. His blood counts have been a little lower than they had been, but that could be caused by whatever bug he is fighting. He also has a nasty rash that seems to be getting worse. It almost looks like chicken pox, but it isn't, but it's that kind of blister-y rash. And one of my most worrisome concerns is that he will NOT eat at all. The docs think that his esophagus has closed up again, but since his counts are too low to do a dilatation without putting him at risk for infection, it's just going to have to stay that way for awhile. They placed a new nj tube today to try to keep it open and help with oral meds. I'm just so worried that he's not going to eat again. You just have no idea how much effort we have put into getting him to eat as well as he was prior to BMT. I really hope that he is able to find his way back to where he was.
As you might imagine, life has been just crazy for us. My stress level seems to be almost as high as I possibly think it could be...and then it seems something happens to just increase it. I don't know how many times people have told me how strong that I am, and how they don't know how I do it. Honestly, I'm not strong, and I don't know how I do it either. But I do know that when I am weak, He is strong. Surely God is providing the grace to get through one day at a time because I just don't have the strength on my own.
I'm sure some have quit reading by now...I can't say I blame anyone. My blogs have got to be the most boring and depressing thing to read. Unfortunately, there aren't a lot of bright spots right now to focus on, but I'm hoping that that turns around soon.
Just when I think I've got it bad, I'm reminded of so many others who are hurting and facing their own trials. The other night in line for dinner at the Ronald McDonald House, a new mom standing behind me was talking about her one-week old baby who had almost died the night before. She said that they were giving the baby just a couple of hours to turn around, otherwise they were going to start comfort care. I see other kids come and go from the BMT unit, little bald heads and green masks just like my Avery, and I know that I'm not the only one hurting. There are hospital rooms filled with kids who are literally fighting for their lives and parents who are praying for a miracle.
But, something I must remind myself often of is that God is sovereign. He saw this coming long before I did, and he has a plan. He saw our beginning, and he knows our end. It's easy to feel like life has become a series of random events, but I recently found comfort in this passage of scripture.
Psalms 37: 23-26 The steps of a good man are ordered by the Lord, and he delighteth in his way. Though he fall, he shall not be utterly cast down, for the Lord upholdeth him with His hand. I have been young and am now old, yet I have not seen the righteous forsaken nor his seed begging bread. He is ever merciful and lendeth and his seed is blessed.
Not only does God see where I am, but he is ordering my steps. I'm so thankful for that!
Tonight we had a small Christmas get-together with my parents and Sarah and Rodney. It was strange with so many missing: Rebecca, Brandon, Ava, Phillip, Avery, and my grandparents. But, we wanted to do it for the kids more than anything. In the morning, the kids and I are heading down to Cincinnati. Since Bryson is out of school on break, we'll probably stay there for a couple of weeks.
This year, I'm not doing Christmas cards. I'm running short on time and Christmas cheer, but I want all of you to know that I'm thankful for each one of you. If anything, this year Phillip and I have learned what an amazing group of friends we have. We wish you all a Merry Christmas!!
Tuesday, December 20, 2011
Thursday, December 8, 2011
Back in the Hospital
So it was 8 weeks ago Dec. 8th exactly that we walked into the Bone Marrow Unit with so many emotions it would be impossible to describe. 8 weeks later we finally walked out those front doors and loaded all of our belongings and Avery into our van. I don't think I've ever been so glad to leave somewhere, and Avery looked around and smiled as we pulled out. The evening kind of went downhill from there. The home health nurse arrived to help us hook up his night iv meds and TPN. Avery wouldn't eat anything and wasn't acting like he felt great, so we turned in a little early. Around 1:30 a.m., he had some belly issues that required both Phillip and I to change him and strip the bed. I thought he felt a little warm, so I took his temp. I took it 5 times to be sure, and yes, he was running a fever. A phone call to the BMT doctor on call confirmed our fears; he had to go back to the hospital. So we made it outside of the hospital for a whole 12 hours!
He's back in the hospital with a fever going up and down and clearly uncomfortable. He's refusing to eat although he's got to be hungry. His little belly is just growling away. I think he knows if he eats, it's going to make him sick. He's just been curled up in a ball in his bed or sleeping as we rock him for the last two days.
I went home last night and got Bryson, so he and Emerson are staying here at the Ronald McDonald House, and Phillip and I are trading out with Avery. The plan was for us all to be together this weekend, and Bryson was so looking forward to that. It was the first thing out of his mouth the last few days, "Is today the day Avery gets out of the hospital?"
Right now, I'm just feeling really worried and stressed. I'm obviously worried about Avery. I feel like my happy little boy has been gone for so long, and I worry that he's not going to ever be the same. We worked so hard for a year and a half in feeding therapy, and I think we've just thrown all of that hard work out the window. He's just weak and lethargic, and I need him to start getting better. That sounds strange, I know. He probably wants to feel better more than anything, but I feel like I need it almost as badly. But I'm also worried about Bryson. Although I've had great support from my family and friends, and my sister has been keeping him a lot, I just feel like he has gotten neglected through all of this. That's one of the reasons I went home last night to get him. I just want him to know that we're all still a family. So after a lot of worrying, I think I"m going to meet my mom and send him to Indiana for a few days. He's going to have to miss school, but I know while he's there, he's the center of attention, he's not being exposed to germs like he is at school, and he has to behave.
My mind is just running in a lot of paths right now that I don't want it to. This post is probably full of grammatical errors and awkward sentences that I wouldn't otherwise use, but I am definitely a little stressed right now and pressed for time. Please keep my Avery in your prayers. This road has turned into a longer and more difficult one that I think either Phillip or I ever imagined. I knew it would be tough, but until you're here, there's just no way to comprehend it.
Thanks so much for your prayers. We're hanging on to every one of them!
Bethany
He's back in the hospital with a fever going up and down and clearly uncomfortable. He's refusing to eat although he's got to be hungry. His little belly is just growling away. I think he knows if he eats, it's going to make him sick. He's just been curled up in a ball in his bed or sleeping as we rock him for the last two days.
I went home last night and got Bryson, so he and Emerson are staying here at the Ronald McDonald House, and Phillip and I are trading out with Avery. The plan was for us all to be together this weekend, and Bryson was so looking forward to that. It was the first thing out of his mouth the last few days, "Is today the day Avery gets out of the hospital?"
Right now, I'm just feeling really worried and stressed. I'm obviously worried about Avery. I feel like my happy little boy has been gone for so long, and I worry that he's not going to ever be the same. We worked so hard for a year and a half in feeding therapy, and I think we've just thrown all of that hard work out the window. He's just weak and lethargic, and I need him to start getting better. That sounds strange, I know. He probably wants to feel better more than anything, but I feel like I need it almost as badly. But I'm also worried about Bryson. Although I've had great support from my family and friends, and my sister has been keeping him a lot, I just feel like he has gotten neglected through all of this. That's one of the reasons I went home last night to get him. I just want him to know that we're all still a family. So after a lot of worrying, I think I"m going to meet my mom and send him to Indiana for a few days. He's going to have to miss school, but I know while he's there, he's the center of attention, he's not being exposed to germs like he is at school, and he has to behave.
My mind is just running in a lot of paths right now that I don't want it to. This post is probably full of grammatical errors and awkward sentences that I wouldn't otherwise use, but I am definitely a little stressed right now and pressed for time. Please keep my Avery in your prayers. This road has turned into a longer and more difficult one that I think either Phillip or I ever imagined. I knew it would be tough, but until you're here, there's just no way to comprehend it.
Thanks so much for your prayers. We're hanging on to every one of them!
Bethany
Sunday, December 4, 2011
And the Journey Continues...
The past couple of weeks have continued to be quite an adventure, although calling it an adventure sounds too glamorous. I'm not sure what to call it exactly. Most days, I don't know whether I'm coming or going, whether I should be happy or sad, and what day of the week it even is.
We're now at day 38 post transplant and entering week 8 in the hospital. So far, Avery's blood counts are pretty stable...low, but stable. He has needed two red cell transfusions since his transplant but no platelet transfusions, which is pretty amazing! All of his labs are showing that the new cells have engrafted and that the cells being produced are still 100% donor cells. He had about a two week period with a high viral count (adeno virus), but at one point last week, that count was zero. It is back but much lower than it was. His biggest issue right now is eating and digesting food properly. The transplant process itself is hard on the digestive tract since the chemo destroys the lining of the intestine, and it takes some time for it to heal and get back to normal. Transplant patients also complain of changes in their tastes and their appetite. So when you take a kid like Avery who has been a reluctant eater all of his life, struggles with oral aversions, and has an esophageal stricture inhibiting swallowing, the normal eating issues become much worse. There are days when we even show him a bottle that he starts gagging or vomits. We have to be a little pushy with food but not so pushy that he gets sick. Of course, some days, his tummy issues result in a ridiculous amount of diaper changing as well. One day in particular I felt like I had been participating in an athletic event after I lifted him out of bed, wrestled him to change and clean him, put the proper barrier cream on his skin, rediapered him, changed his bed, and lifted him back in bed only to have to repeat the process 15-20 minutes later. One day he ruined all of my clothes, and I actually had to wear scrubs for awhile until I was able to get my clothes washed. The doctors have said that kids with DKC1 tend to take a little longer to heal. The tube feeds have been stopped completely since they were literally going straight through him. He's now getting TPN (total parenteral nutrition) through his central line. It's not the preferred method, but it works best for him. About a week ago, I got him to eat applesauce for the first time in weeks. I was so thrilled, and with each bite, I found myself saying, "Thank you, Jesus." His eating has been hit and miss depending on how he's feeling, and definitely below normal, but I'm glad that he's at least beginning to eat some.
He's off the pain pump and doing pain meds PRN now. He has been pretty grumpy and uncomfortable for the last few days, and then last night started with a low grade fever. He also has a rash that comes and goes, but the skin biopsy came back negative for Graft vs. Host disease, which is a common cause of rash in BMT patients. Despite his bad days, I am so thankful for his progress so far. A few days ago, a little 2 1/2 year old girl passed away following complications from her BMT. She had Diamond Blackfan Anemia, which is the same diagnosis Avery was given at 1 (which has since changed to Dyskeratosis Congenita). She developed Graft vs. Host in her liver and also had a severe adeno virus. This all has struck just too close to home, and my heart just aches for the grieving family.
Last week the team of doctors started talking about a discharge plan for the first time. They said possibly this Tuesday we could be moved across the street to the Ronald McDonald House, so we started the home health education on running his TPN and giving him his meds. I'm really not good with all of that; I prefer to let Phillip do it, but I have to know how to do it for when he's not around. I'm looking forward to getting out of the hospital, but I'm also really nervous about it. You might think that's weird, but I've always had the security of knowing I could push the nurse call button and have someone come check him out or bring additional medication when he's uncomfortable, or the security of knowing his vitals are being taken regularly and recorded. Not to mention the fact that on his high maintenance days when the laundry from multiple bedding changes piles up, the house keeping crew will come in and take care of that. With Avery's last few days being pretty rough, I'm not sure the doctors will feel comfortable discharging him to RMH or not.
Phillip started FMLA on the first of December, and he's off the entire month. I am so glad! It makes things so much easier with him available more. His sister spent the night with Avery last night, which made it possible to spend our 3rd night in nearly 8 weeks under the same roof. It was so cute how Emerson spent so much time just staring and smiling at Phillip like, "Who is this funny man who keeps talking to me?" She has changed a lot in the last two months, and I'm not sure she quite knows who all her family consists of right now! Speaking of Emerson, here are a few snapshots of her now at 4 months old.
Emerson and Ava
Now, to switch gears just a little, last night was the "Christmas for Avery" benefit dinner that some friends and church family planned on Avery's behalf. Phillip and I were really in the dark on most of the plans, and since we haven't been able to attend church regularly, we were even more out of touch. But we were so overwhelmed last night by the event. It was beautifully decorated for Christmas, and there was great food, some donated by local restaurants, and the beef and noodles were homemade by Lydia Duane. The In One Accord girls sang Christmas songs, the little kids sang some classics, and Rodney, Jeff Ward, Andrew Blevins, and Jeff Liette did a lip sync to the Chipmunks songs. There was an auction with donated items, and Richie Sutherland did a photo booth with a holiday background complete with a sleigh and lots of snow. It was truly spectacular! Clearly, much work went into the planning for the night. Phillip and I spent a lot of time talking about how undeserving we felt, and how we didn't even have a clue how to properly say "thank you" to everyone for what was done. To be honest, the last year has been extremely challenging for us in many ways, and it means so much to know that there are so many people who love us and just want to lighten the load a little. We are so touched by every single thing that has been done for our family, and as insignificant as it sounds, we still want to say thank you!!
In case you haven't seen it already, here is a video that my sister made for Avery's benefit. I think it does a good job of capturing his resilience and strength despite his difficult times.
God bless,
Bethany
We're now at day 38 post transplant and entering week 8 in the hospital. So far, Avery's blood counts are pretty stable...low, but stable. He has needed two red cell transfusions since his transplant but no platelet transfusions, which is pretty amazing! All of his labs are showing that the new cells have engrafted and that the cells being produced are still 100% donor cells. He had about a two week period with a high viral count (adeno virus), but at one point last week, that count was zero. It is back but much lower than it was. His biggest issue right now is eating and digesting food properly. The transplant process itself is hard on the digestive tract since the chemo destroys the lining of the intestine, and it takes some time for it to heal and get back to normal. Transplant patients also complain of changes in their tastes and their appetite. So when you take a kid like Avery who has been a reluctant eater all of his life, struggles with oral aversions, and has an esophageal stricture inhibiting swallowing, the normal eating issues become much worse. There are days when we even show him a bottle that he starts gagging or vomits. We have to be a little pushy with food but not so pushy that he gets sick. Of course, some days, his tummy issues result in a ridiculous amount of diaper changing as well. One day in particular I felt like I had been participating in an athletic event after I lifted him out of bed, wrestled him to change and clean him, put the proper barrier cream on his skin, rediapered him, changed his bed, and lifted him back in bed only to have to repeat the process 15-20 minutes later. One day he ruined all of my clothes, and I actually had to wear scrubs for awhile until I was able to get my clothes washed. The doctors have said that kids with DKC1 tend to take a little longer to heal. The tube feeds have been stopped completely since they were literally going straight through him. He's now getting TPN (total parenteral nutrition) through his central line. It's not the preferred method, but it works best for him. About a week ago, I got him to eat applesauce for the first time in weeks. I was so thrilled, and with each bite, I found myself saying, "Thank you, Jesus." His eating has been hit and miss depending on how he's feeling, and definitely below normal, but I'm glad that he's at least beginning to eat some.
He's off the pain pump and doing pain meds PRN now. He has been pretty grumpy and uncomfortable for the last few days, and then last night started with a low grade fever. He also has a rash that comes and goes, but the skin biopsy came back negative for Graft vs. Host disease, which is a common cause of rash in BMT patients. Despite his bad days, I am so thankful for his progress so far. A few days ago, a little 2 1/2 year old girl passed away following complications from her BMT. She had Diamond Blackfan Anemia, which is the same diagnosis Avery was given at 1 (which has since changed to Dyskeratosis Congenita). She developed Graft vs. Host in her liver and also had a severe adeno virus. This all has struck just too close to home, and my heart just aches for the grieving family.
Last week the team of doctors started talking about a discharge plan for the first time. They said possibly this Tuesday we could be moved across the street to the Ronald McDonald House, so we started the home health education on running his TPN and giving him his meds. I'm really not good with all of that; I prefer to let Phillip do it, but I have to know how to do it for when he's not around. I'm looking forward to getting out of the hospital, but I'm also really nervous about it. You might think that's weird, but I've always had the security of knowing I could push the nurse call button and have someone come check him out or bring additional medication when he's uncomfortable, or the security of knowing his vitals are being taken regularly and recorded. Not to mention the fact that on his high maintenance days when the laundry from multiple bedding changes piles up, the house keeping crew will come in and take care of that. With Avery's last few days being pretty rough, I'm not sure the doctors will feel comfortable discharging him to RMH or not.
Phillip started FMLA on the first of December, and he's off the entire month. I am so glad! It makes things so much easier with him available more. His sister spent the night with Avery last night, which made it possible to spend our 3rd night in nearly 8 weeks under the same roof. It was so cute how Emerson spent so much time just staring and smiling at Phillip like, "Who is this funny man who keeps talking to me?" She has changed a lot in the last two months, and I'm not sure she quite knows who all her family consists of right now! Speaking of Emerson, here are a few snapshots of her now at 4 months old.
Emerson and Ava
Now, to switch gears just a little, last night was the "Christmas for Avery" benefit dinner that some friends and church family planned on Avery's behalf. Phillip and I were really in the dark on most of the plans, and since we haven't been able to attend church regularly, we were even more out of touch. But we were so overwhelmed last night by the event. It was beautifully decorated for Christmas, and there was great food, some donated by local restaurants, and the beef and noodles were homemade by Lydia Duane. The In One Accord girls sang Christmas songs, the little kids sang some classics, and Rodney, Jeff Ward, Andrew Blevins, and Jeff Liette did a lip sync to the Chipmunks songs. There was an auction with donated items, and Richie Sutherland did a photo booth with a holiday background complete with a sleigh and lots of snow. It was truly spectacular! Clearly, much work went into the planning for the night. Phillip and I spent a lot of time talking about how undeserving we felt, and how we didn't even have a clue how to properly say "thank you" to everyone for what was done. To be honest, the last year has been extremely challenging for us in many ways, and it means so much to know that there are so many people who love us and just want to lighten the load a little. We are so touched by every single thing that has been done for our family, and as insignificant as it sounds, we still want to say thank you!!
In case you haven't seen it already, here is a video that my sister made for Avery's benefit. I think it does a good job of capturing his resilience and strength despite his difficult times.
God bless,
Bethany
Thursday, November 24, 2011
Thankful
This year, we're mostly ignoring the holiday season. If you know me, then you know that this is one of my favorite times of year. I'm one of those people who likes to blend the Thanksgiving and Christmas seasons by putting my tree up early and listening to Christmas music in November. There's not much I enjoy any better than having a nice, holiday scented candle burning, drinking hot chocolate, and planning family get-togethers. This year, I'm just not feeling too festive, and so there are no decorations or plans to put any up at the Hoskins' home, and today on Thanksgiving, my family members are scattered about rather than under one roof as I would like.
However, despite my lack of keeping up with traditions, I still have so much to be thankful for today! A lot has changed in one year; this time last year we only recently found out we had another baby on the way. Now, we have a beautiful, healthy baby girl who I just love to pieces! Last year, Avery's diagnosis and prognosis was completely different. And even though it was a tough year getting to this point, he now has new bone marrow that is starting to graft. I'm especially grateful to the young man who shared part of his healthy cells with Avery.
I've always been thankful for my husband, but each year seems to bring out something different in him that I appreciate. I feel like we have been through so much over the last few years and that our relationship has been put to the test! He has been a rock amidst chaos. Thank you, Lord, for blessing me with Phillip Douglas Hoskins!
I've been blessed with many material things, which in light of what has been going on in our life, I have realized mean so much less than I once thought. But I'm so glad that we have such a nice home...nothing fancy, but cozy and filled with love. We have plenty of food, my husband has a good, stable job, which means a lot in this economy! I'm even thankful for my not-so-cool minivan, but it is oh-so-practical and dependable! :)
I sat down a few days ago to write a thank you card to the young man who shared his healthy cells with Avery, and once I wrote "Dear Bone Marrow Donor," I was at a complete loss for words. Because of privacy laws, we're not allowed to know his name or location, and in my thank you card, I wasn't allowed to share any personal details that might compromise our or his anonymity. But I just kept thinking that simply saying, "thank you" for such a selfless, life-changing gift seemed so insignificant. I tried to express our gratitude to the young man as best as I could, but as I closed my note, I still felt like I had fallen so short. Then I started thinking about Jesus and the sacrifice He made for a fallen world full of sinful people who he didn't even know. He didn't just give his bone marrow; He gave his life. Saying "thank you" for that sacrifice seems insignificant as well, but I don't want to ever fail to try to let him know how thankful I am for the sacrifice He made and the gift of eternal life!
Happy Thanksgiving, Friends!
Bethany
However, despite my lack of keeping up with traditions, I still have so much to be thankful for today! A lot has changed in one year; this time last year we only recently found out we had another baby on the way. Now, we have a beautiful, healthy baby girl who I just love to pieces! Last year, Avery's diagnosis and prognosis was completely different. And even though it was a tough year getting to this point, he now has new bone marrow that is starting to graft. I'm especially grateful to the young man who shared part of his healthy cells with Avery.
I've always been thankful for my husband, but each year seems to bring out something different in him that I appreciate. I feel like we have been through so much over the last few years and that our relationship has been put to the test! He has been a rock amidst chaos. Thank you, Lord, for blessing me with Phillip Douglas Hoskins!
I've been blessed with many material things, which in light of what has been going on in our life, I have realized mean so much less than I once thought. But I'm so glad that we have such a nice home...nothing fancy, but cozy and filled with love. We have plenty of food, my husband has a good, stable job, which means a lot in this economy! I'm even thankful for my not-so-cool minivan, but it is oh-so-practical and dependable! :)
I sat down a few days ago to write a thank you card to the young man who shared his healthy cells with Avery, and once I wrote "Dear Bone Marrow Donor," I was at a complete loss for words. Because of privacy laws, we're not allowed to know his name or location, and in my thank you card, I wasn't allowed to share any personal details that might compromise our or his anonymity. But I just kept thinking that simply saying, "thank you" for such a selfless, life-changing gift seemed so insignificant. I tried to express our gratitude to the young man as best as I could, but as I closed my note, I still felt like I had fallen so short. Then I started thinking about Jesus and the sacrifice He made for a fallen world full of sinful people who he didn't even know. He didn't just give his bone marrow; He gave his life. Saying "thank you" for that sacrifice seems insignificant as well, but I don't want to ever fail to try to let him know how thankful I am for the sacrifice He made and the gift of eternal life!
Happy Thanksgiving, Friends!
Bethany
Friday, November 11, 2011
Day 13 and Counting
I know that some of you read my blog solely to follow Avery's progress and might be eager for an update. One would think that because I'm sitting in a hospital day after day that I'd have nothing but time to blog. Unfortunately, Avery has been VERY high maintenance lately, leaving very little time for blogging. The good news is things are looking up...at least I think so.
The last week has been difficult to say the least. Avery has been sick and in serious pain. It makes it hard that Avery doesn't talk and can't tell us exactly how he feels. It's really been a trial and error process to try to get him comfortable. His mouth and entire GI tract has been inflamed, so he went an entire week without taking anything by mouth. So, he's been getting tube feeds, but whenever they increase the rate of feeds, Avery gets more nauseated. He's had a few days of vomiting along the way, a couple of fevers, some seriously high blood pressures and heart rates that are just indicative of pain. He has rolled the bed literally moaning in pain for days. Or, possibly even more pitiful has been him sitting in his crib, rocking back and forth with his eyes shut moaning. The doctors have increased his morphine rate in his pain pump multiple times and tried other meds (nubane, ativan, dilaudid, phenergen, etc.) in addition to the other ten or twelve scheduled meds he's currently getting, but nothing seemed to really work.
Pretty much, the last week we have lived in the recliner. Avery has been a little more contented when he is being rocked, so Phillip and I have rocked him until our arms went numb. It has been mentally, physically, and emotionally exhausting. I have just had to lean on God for strength as well as my husband and family.
The bright spots have been that Avery's blood counts have been showing signs of engraftment, so they drew an engraftment study Tuesday. We should know in a couple of days whether or not the donor cells are working or not in a couple more days. The other positive is that Avery has been hinting at a smile a time or two in the last two days, and he ate 3 bites of applesauce yesterday.
I don't want to sound all gloom and doom; I'm so thankful that it appears Avery's cells are beginning to work. Avery's experience has been pretty normal...awful, but normal.
Our friends and family members have been so great through all of this! Everyday we get a phone call, text, or message of some sort letting us know that we're not forgotten and that we're being upheld in prayer. We've had so many people reach out in other ways to take off the extra financial stress of this time. Truly, our finances aren't our priority right now, but it is awesome to not be so worried about the toll Phillip's unpaid FMLA time is taking on our wallet. Saying "thank you" just doesn't seem enough.
Bethany
The last week has been difficult to say the least. Avery has been sick and in serious pain. It makes it hard that Avery doesn't talk and can't tell us exactly how he feels. It's really been a trial and error process to try to get him comfortable. His mouth and entire GI tract has been inflamed, so he went an entire week without taking anything by mouth. So, he's been getting tube feeds, but whenever they increase the rate of feeds, Avery gets more nauseated. He's had a few days of vomiting along the way, a couple of fevers, some seriously high blood pressures and heart rates that are just indicative of pain. He has rolled the bed literally moaning in pain for days. Or, possibly even more pitiful has been him sitting in his crib, rocking back and forth with his eyes shut moaning. The doctors have increased his morphine rate in his pain pump multiple times and tried other meds (nubane, ativan, dilaudid, phenergen, etc.) in addition to the other ten or twelve scheduled meds he's currently getting, but nothing seemed to really work.
Pretty much, the last week we have lived in the recliner. Avery has been a little more contented when he is being rocked, so Phillip and I have rocked him until our arms went numb. It has been mentally, physically, and emotionally exhausting. I have just had to lean on God for strength as well as my husband and family.
The bright spots have been that Avery's blood counts have been showing signs of engraftment, so they drew an engraftment study Tuesday. We should know in a couple of days whether or not the donor cells are working or not in a couple more days. The other positive is that Avery has been hinting at a smile a time or two in the last two days, and he ate 3 bites of applesauce yesterday.
I don't want to sound all gloom and doom; I'm so thankful that it appears Avery's cells are beginning to work. Avery's experience has been pretty normal...awful, but normal.
Our friends and family members have been so great through all of this! Everyday we get a phone call, text, or message of some sort letting us know that we're not forgotten and that we're being upheld in prayer. We've had so many people reach out in other ways to take off the extra financial stress of this time. Truly, our finances aren't our priority right now, but it is awesome to not be so worried about the toll Phillip's unpaid FMLA time is taking on our wallet. Saying "thank you" just doesn't seem enough.
Bethany
Wednesday, November 9, 2011
Friday, November 4, 2011
The Sad Days
Avery has now entered "the sad days" as the doctors refer to them. That would be day +6 through +12, give or take a few. There's not a lot to say about it except that it's heartbreaking to watch your child suffer day after day.
He has mucousitis, which is sores and inflammation in his mouth all the way through his GI tract. Avery is refusing to eat, because to do so is painful. He also isn't swallowing much at all, which means that all the saliva and mucous builds up in his mouth and throat, and he's had some pretty bad choking episodes and some low oxygen levels that have required a little bit of direct oxygen. They have started him on continuous tube feeds and extra fluids to compensate for the fact that he's not eating, and today at rounds, are going to discuss putting him on a pain pump. He's been getting morphine as needed, but Avery doesn't really express pain, so it's hard to tell sometimes if he's having pain until he's in a lot of pain. A pain pump would be a little simpler and consistent.
He did have a fever night before last, which the doctors said is normal. His body and the new cells are in a battle right now. I'm just hoping and praying everyday that the cells win the battle and start to graft....quickly!
The only thing keeping me sane right now is knowing that this is all part of the process, and it WILL pass. I'm struggling a little with juggling my 3 kids; I need a clone of myself! One thing I must say is that I'm married to an AMAZING guy. I can't imagine any man being more supportive and there for his family. He's on FMLA right now, and so he's been staying every night for the last week so that I can stay home with Bryson and Em. I've been making day trips this week. Tuesday, I brought Emerson with me, and while I spent the day with Avery, Phillip and Emerson had a father-daughter day in the Ronald McDonald House. Yesterday, I took Bryson out of school and took him with me, and he and Phillip had a fun day together. The Bengals' wives did pizza for lunch, and then Bryson played in the game rooms, and I think wore his daddy out!
Thank you so much for your prayers!! We need them more than ever.
Bethany
He has mucousitis, which is sores and inflammation in his mouth all the way through his GI tract. Avery is refusing to eat, because to do so is painful. He also isn't swallowing much at all, which means that all the saliva and mucous builds up in his mouth and throat, and he's had some pretty bad choking episodes and some low oxygen levels that have required a little bit of direct oxygen. They have started him on continuous tube feeds and extra fluids to compensate for the fact that he's not eating, and today at rounds, are going to discuss putting him on a pain pump. He's been getting morphine as needed, but Avery doesn't really express pain, so it's hard to tell sometimes if he's having pain until he's in a lot of pain. A pain pump would be a little simpler and consistent.
He did have a fever night before last, which the doctors said is normal. His body and the new cells are in a battle right now. I'm just hoping and praying everyday that the cells win the battle and start to graft....quickly!
The only thing keeping me sane right now is knowing that this is all part of the process, and it WILL pass. I'm struggling a little with juggling my 3 kids; I need a clone of myself! One thing I must say is that I'm married to an AMAZING guy. I can't imagine any man being more supportive and there for his family. He's on FMLA right now, and so he's been staying every night for the last week so that I can stay home with Bryson and Em. I've been making day trips this week. Tuesday, I brought Emerson with me, and while I spent the day with Avery, Phillip and Emerson had a father-daughter day in the Ronald McDonald House. Yesterday, I took Bryson out of school and took him with me, and he and Phillip had a fun day together. The Bengals' wives did pizza for lunch, and then Bryson played in the game rooms, and I think wore his daddy out!
Thank you so much for your prayers!! We need them more than ever.
Bethany
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