During
Benji's 9 years in and out of the hospital I kept a journal on
Caringbridge. Many of you followed our story there, but not all of you
may be aware of the context of my writings. I decided to post my
journal entries of his last days and about his memorial service on here, for those
who would like to know more. It gives you a window into what its like to
see your child's life slipping away before your very eyes. If you want to know
even more, all of my journal entries can be found at http://caringbridgeclassic.org/in/benji/history.html
Two Nights Before His Death
Sunday, March 10, 2013
It
feels more and more as if we’re running out of time and in fact, we had a
meeting with the docs today where they told us they’re nearly out of options.
If a liver doesn’t come quickly, he may not stay well enough or live long
enough to get one. Again tonight, I had to release Benji to God. I told him we
are so grateful and have been so blessed to have had the opportunity to care
for Benji for the last 15 years, but that I know ultimately he loves Benji even
more than we do and wants only the best for him. At the same time, I told God
we would really like him to entrust Benji to us for a longer period of time.
And we would really like to see him enjoy those new lungs here on earth before
God takes him. We sure don’t want to give Benji up, but for us, there is no
other choice but to trust God and accept his perfect plan for Benji’s life,
whatever that is.
We had another ammonia scare today (which at this point has improved somewhat but we still don’t feel like he’s out of the woods.) I don’t know if you know about the January 25th “ammonia incident” we had with Benji but that time was very different from this one. (If you’re not familiar with what happened at that time, you may want to read my journal entry from January 27.) That time Benji’s ammonia level reached 214 (normal levels range between 10 and 50). The way it affected him was this: he would have loved to sleep but couldn’t; he was UNBELIEVABLY restless and as the day wore on, he became more and more disoriented to his surroundings, to the point of not even recognizing Allen or I. It was an indescribably horrible time!
Last night (Saturday night), Benji’s ammonia level reached 241! However, his symptoms were very different this time. We don’t know what his ammonia levels were during the day yesterday because they had only been checking them once/day, but he was calm and very tired all day yesterday; he slept most of the day. When his brothers (Aaron and Cory) were here, he sat up with them for a little bit but that didn’t last very long until he wanted to sleep again. We kept checking him all day to make sure he was still oriented to time and place and both yesterday and today he was always sharp as a tack on that. He “complained”, (if you can call it that), of just feeling crappy all day and had some backache and nausea. On Thursday he had lost a lot of blood and had had surgery because of the bleeding so there was some thought that he was simply worn out from a rough couple days; but as the day wore on, I became somewhat concerned. Something didn’t seem right; he seemed sleepier than he typically does. His ammonia that morning had been 136, which was a concern, but it had been that high for a few days and he had seemed to be doing okay. Before I left last evening, I began asking questions about his blood gases and ammonia levels. When I discovered labs weren’t due for a while, I asked if they could do it right away, so I could feel better about leaving. (Sylvan stayed with Benji overnight). The result was not great. His CO2 levels were in the 80s (normal is 35-45) and his acids were out of balance. The CO2 was a good explanation of the sleepiness, which they were working on bringing down. I left, feeling uneasy about going, but told Sylvan I want to know if anything changes for the worse. Again, I don’t know if his ammonia levels had been climbing all day or not, but the 2:00 labs came back with an ammonia level of 241. During this time, he was extremely sleepy but he was always rousable and still very coherent. This was a huge comfort because we have been told numerous times since the first episode that it’s more about how he appears clinically then what the actual numbers are. However, there is no other way to slice it, this was not good! They stopped the proteins he’s getting through his TPN right away and by later this morning the level had dropped to 151. By early afternoon, it had dropped to 128. This is what I posted on FB at that time.
“Oh praise the lord!!! While Allen & I were on our knees begging God to spare Benji's life once again, we got the news his ammonia is now 128! When we heard, I began praising God and Allen just began shaking with sobs. When he composed himself & blew his nose, he said his nose was again burning with the smell of ammonia! (This very thing happened the last time we had the ammonia scare, after Allen had prayed and asked God to give Benji's ammonia to him!) Thank you Lord for having mercy on us right now and we continue to ask you to bring glory to yourself through Benji's healing!”
It was such a relief and gave us some hope. We really believed God had again given Benji’s ammonia to Allen and so we were quite surprised and disappointed when the next test came back in the 150s again. I can’t explain to you why, after Allen again smelled the ammonia, that the levels went back up. We can’t understand the mind of God- (or I guess we would be God); all we know is what we experienced and we’ll have to leave the explaining up to God.☺ Anyway, after being in the 150s(ish) range for most of the afternoon, the midnight level suddenly dropped to 112. We are so grateful and thanking God for the drop, but we certainly haven’t relaxed. I’ll see what the 2:00 a.m. one is before relaxing too much.☺
Benji continued to sleep deeply- in his near-comatose state most of the day; however, frequently there was someone trying to wake him to see if he was still rousable and coherent. Thankfully he always was. We had one good scare when Sylvan and Connie were ready to leave; I tried to wake Benji to tell them goodbye and for a little bit, I didn’t know if he was going to wake up. His mind was fuzzy for a little bit when I finally did get him to wake up, and we weren’t sure if he was coherent or not. However, once the fuzz cleared a little, it was obvious he was still very “with us”. HUGE sigh of relief!! He went back to sleep and all of a sudden around 6:00 p.m. he woke up. He seemed some better; he was sitting up in bed and even asked for his glasses and the TV remote. What a relief! He actually stayed completely awake for about 3 hours without any prompting. Around 9:00 – 10:00 he again wanted to sleep, but even though his CO2, ph and ammonia levels have been improving, he has become more and more restless as the night wears on. At this time, it is nearly 2:00 a.m. and he’s really struggling to relax. About every 20 minutes to ½ hour he wants to sit up for about 5 minutes then he wants to lie down again. He just seems to feel miserable; he feels nauseous and his back has been hurting him.
I’ve been sitting by his bed most of the evening and night. For a while, I read to him and later, after I thought he had gone to sleep, I sat on my chairbed to start writing this but it wasn’t long till he awoke and asked if I would sit by him. Of course I would!☺ So, I’ve been sitting beside his bed stroking his head and holding his hand while he tries to sleep. He is currently getting a treatment so I’m using this time to try to finish this. While his numbers are comparable to previous times when he was doing fairly well, at this point, there is no question he is not back to where he was a week ago, or even five days ago. He is very, VERY sick and I don’t know how much longer he can hang on. I cannot describe to you how hard it is to watch my child waste away because we don’t have a donor liver.
I keep going through everything in my mind; all the miracles we experienced at the beginning of this journey. The Ronald McDonald House apartment opening up, when nothing was supposed to open up until March. The insurance fiasco, which got straightened out in time for us move early like we had planned to do. And because of being able to move early, Benji was able to get the lung transplant on the day we were originally supposed to have moved here. The lungs fit so perfectly- even the different sized bronchi match; the surgeon says, “It was meant to be.” Benji does SO incredibly well immediately after transplant, surprising everyone. There were a number of other things during that time, which we felt were only because of God’s intervention and we couldn’t believe how God was blessing us! Way more than we deserved!
And then the liver went nuts. Since that point, God has continued to (we believe miraculously) pull Benji through situation after situation when we thought we were going to lose him. And then twice, the opportunity for him to get listed for liver transplant came within a hair of being denied. Again, we believe God intervened in Benji’s behalf. The approval process went so smoothly for listing; especially with insurance, which they said is typically the most difficult. We are quite certain the insurance fiasco we had prior to us moving down was what made that go so smoothly. Because of that, the top management at Indiana Medicaid knew Benji by name. Once again, wasn’t it obvious God had designed it so when it came time to do the liver transplant, there wouldn’t be any issues with insurance? So, Benji gets listed and we’re told a couple days to a week till he gets a liver. It’s now going on four weeks, and to be honest, it feels like God has suddenly turned his face away and is no longer hearing our prayers. What was the point of taking us through all those amazing, miraculous experiences if now, it may end with Benji not even being able to get the liver transplant? It simply doesn’t make sense. To my mind. If Benji isn’t able to get the liver transplant and doesn’t pull through, I don’t think any of this will ever make sense to me. So once again, this is where trust comes in. When NOTHING makes sense to my mind and things are beginning to look very bleak. When I’m losing hope that Benji’s going to get a liver on time; this is when the only thing I can do is trust that God knows and it all makes sense to him. I can’t say it feels good. It doesn’t. It’s heart breaking to think that I may be experiencing the last days with my youngest son, here on earth. I just know that no matter how discouraging this may yet get and how much more heartbreaking this may become, I serve a God who loves us and is trustworthy. If his will is not to prolong Benji’s life here on earth, he will be the one who will carry me through that most painful time, just the same as he has carried me over and over the last 2 plus months. And I do not believe my God only loves me and is a good God when things go the way I think they should. My source of peace, my source of joy will come from no other place or person than him, so how do I have a choice but to continue to trust?
In the meantime, we continue to plead for Benji’s life. We believe God has received much glory through this whole process and we believe he will receive even more honor and glory if Benji lives through this, to tell of all the miraculous ways God intervened in his life. We want to be able to see Benji get at least a little enjoyment out of those perfect-fitting lungs and so we continue to ask God for all of these things and for a new liver. All while understanding the painful reality that our desires may not be in line with God’s desires. We continue to covet your prayers for whatever lies before us.
Until next time….
Just got the 2:00 ammonia results- 156 :(
We had another ammonia scare today (which at this point has improved somewhat but we still don’t feel like he’s out of the woods.) I don’t know if you know about the January 25th “ammonia incident” we had with Benji but that time was very different from this one. (If you’re not familiar with what happened at that time, you may want to read my journal entry from January 27.) That time Benji’s ammonia level reached 214 (normal levels range between 10 and 50). The way it affected him was this: he would have loved to sleep but couldn’t; he was UNBELIEVABLY restless and as the day wore on, he became more and more disoriented to his surroundings, to the point of not even recognizing Allen or I. It was an indescribably horrible time!
Last night (Saturday night), Benji’s ammonia level reached 241! However, his symptoms were very different this time. We don’t know what his ammonia levels were during the day yesterday because they had only been checking them once/day, but he was calm and very tired all day yesterday; he slept most of the day. When his brothers (Aaron and Cory) were here, he sat up with them for a little bit but that didn’t last very long until he wanted to sleep again. We kept checking him all day to make sure he was still oriented to time and place and both yesterday and today he was always sharp as a tack on that. He “complained”, (if you can call it that), of just feeling crappy all day and had some backache and nausea. On Thursday he had lost a lot of blood and had had surgery because of the bleeding so there was some thought that he was simply worn out from a rough couple days; but as the day wore on, I became somewhat concerned. Something didn’t seem right; he seemed sleepier than he typically does. His ammonia that morning had been 136, which was a concern, but it had been that high for a few days and he had seemed to be doing okay. Before I left last evening, I began asking questions about his blood gases and ammonia levels. When I discovered labs weren’t due for a while, I asked if they could do it right away, so I could feel better about leaving. (Sylvan stayed with Benji overnight). The result was not great. His CO2 levels were in the 80s (normal is 35-45) and his acids were out of balance. The CO2 was a good explanation of the sleepiness, which they were working on bringing down. I left, feeling uneasy about going, but told Sylvan I want to know if anything changes for the worse. Again, I don’t know if his ammonia levels had been climbing all day or not, but the 2:00 labs came back with an ammonia level of 241. During this time, he was extremely sleepy but he was always rousable and still very coherent. This was a huge comfort because we have been told numerous times since the first episode that it’s more about how he appears clinically then what the actual numbers are. However, there is no other way to slice it, this was not good! They stopped the proteins he’s getting through his TPN right away and by later this morning the level had dropped to 151. By early afternoon, it had dropped to 128. This is what I posted on FB at that time.
“Oh praise the lord!!! While Allen & I were on our knees begging God to spare Benji's life once again, we got the news his ammonia is now 128! When we heard, I began praising God and Allen just began shaking with sobs. When he composed himself & blew his nose, he said his nose was again burning with the smell of ammonia! (This very thing happened the last time we had the ammonia scare, after Allen had prayed and asked God to give Benji's ammonia to him!) Thank you Lord for having mercy on us right now and we continue to ask you to bring glory to yourself through Benji's healing!”
It was such a relief and gave us some hope. We really believed God had again given Benji’s ammonia to Allen and so we were quite surprised and disappointed when the next test came back in the 150s again. I can’t explain to you why, after Allen again smelled the ammonia, that the levels went back up. We can’t understand the mind of God- (or I guess we would be God); all we know is what we experienced and we’ll have to leave the explaining up to God.☺ Anyway, after being in the 150s(ish) range for most of the afternoon, the midnight level suddenly dropped to 112. We are so grateful and thanking God for the drop, but we certainly haven’t relaxed. I’ll see what the 2:00 a.m. one is before relaxing too much.☺
Benji continued to sleep deeply- in his near-comatose state most of the day; however, frequently there was someone trying to wake him to see if he was still rousable and coherent. Thankfully he always was. We had one good scare when Sylvan and Connie were ready to leave; I tried to wake Benji to tell them goodbye and for a little bit, I didn’t know if he was going to wake up. His mind was fuzzy for a little bit when I finally did get him to wake up, and we weren’t sure if he was coherent or not. However, once the fuzz cleared a little, it was obvious he was still very “with us”. HUGE sigh of relief!! He went back to sleep and all of a sudden around 6:00 p.m. he woke up. He seemed some better; he was sitting up in bed and even asked for his glasses and the TV remote. What a relief! He actually stayed completely awake for about 3 hours without any prompting. Around 9:00 – 10:00 he again wanted to sleep, but even though his CO2, ph and ammonia levels have been improving, he has become more and more restless as the night wears on. At this time, it is nearly 2:00 a.m. and he’s really struggling to relax. About every 20 minutes to ½ hour he wants to sit up for about 5 minutes then he wants to lie down again. He just seems to feel miserable; he feels nauseous and his back has been hurting him.
I’ve been sitting by his bed most of the evening and night. For a while, I read to him and later, after I thought he had gone to sleep, I sat on my chairbed to start writing this but it wasn’t long till he awoke and asked if I would sit by him. Of course I would!☺ So, I’ve been sitting beside his bed stroking his head and holding his hand while he tries to sleep. He is currently getting a treatment so I’m using this time to try to finish this. While his numbers are comparable to previous times when he was doing fairly well, at this point, there is no question he is not back to where he was a week ago, or even five days ago. He is very, VERY sick and I don’t know how much longer he can hang on. I cannot describe to you how hard it is to watch my child waste away because we don’t have a donor liver.
I keep going through everything in my mind; all the miracles we experienced at the beginning of this journey. The Ronald McDonald House apartment opening up, when nothing was supposed to open up until March. The insurance fiasco, which got straightened out in time for us move early like we had planned to do. And because of being able to move early, Benji was able to get the lung transplant on the day we were originally supposed to have moved here. The lungs fit so perfectly- even the different sized bronchi match; the surgeon says, “It was meant to be.” Benji does SO incredibly well immediately after transplant, surprising everyone. There were a number of other things during that time, which we felt were only because of God’s intervention and we couldn’t believe how God was blessing us! Way more than we deserved!
And then the liver went nuts. Since that point, God has continued to (we believe miraculously) pull Benji through situation after situation when we thought we were going to lose him. And then twice, the opportunity for him to get listed for liver transplant came within a hair of being denied. Again, we believe God intervened in Benji’s behalf. The approval process went so smoothly for listing; especially with insurance, which they said is typically the most difficult. We are quite certain the insurance fiasco we had prior to us moving down was what made that go so smoothly. Because of that, the top management at Indiana Medicaid knew Benji by name. Once again, wasn’t it obvious God had designed it so when it came time to do the liver transplant, there wouldn’t be any issues with insurance? So, Benji gets listed and we’re told a couple days to a week till he gets a liver. It’s now going on four weeks, and to be honest, it feels like God has suddenly turned his face away and is no longer hearing our prayers. What was the point of taking us through all those amazing, miraculous experiences if now, it may end with Benji not even being able to get the liver transplant? It simply doesn’t make sense. To my mind. If Benji isn’t able to get the liver transplant and doesn’t pull through, I don’t think any of this will ever make sense to me. So once again, this is where trust comes in. When NOTHING makes sense to my mind and things are beginning to look very bleak. When I’m losing hope that Benji’s going to get a liver on time; this is when the only thing I can do is trust that God knows and it all makes sense to him. I can’t say it feels good. It doesn’t. It’s heart breaking to think that I may be experiencing the last days with my youngest son, here on earth. I just know that no matter how discouraging this may yet get and how much more heartbreaking this may become, I serve a God who loves us and is trustworthy. If his will is not to prolong Benji’s life here on earth, he will be the one who will carry me through that most painful time, just the same as he has carried me over and over the last 2 plus months. And I do not believe my God only loves me and is a good God when things go the way I think they should. My source of peace, my source of joy will come from no other place or person than him, so how do I have a choice but to continue to trust?
In the meantime, we continue to plead for Benji’s life. We believe God has received much glory through this whole process and we believe he will receive even more honor and glory if Benji lives through this, to tell of all the miraculous ways God intervened in his life. We want to be able to see Benji get at least a little enjoyment out of those perfect-fitting lungs and so we continue to ask God for all of these things and for a new liver. All while understanding the painful reality that our desires may not be in line with God’s desires. We continue to covet your prayers for whatever lies before us.
Until next time….
Just got the 2:00 ammonia results- 156 :(
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