Very thankful that we finally made it home this afternoon. It takes most of the day to get all the paperwork done at the hospital but by 4 we got home.
Thanks everyone for helping us through this with prayers, visits, and help with the kids. Many gave rides or came and spent time with the kids so Leann could be with me at the hospital. It is much appreciated.
Feeding is going okay right now. I just pray that I can get back on my schedule and the headaches go away. I made up another spreadsheet this afternoon so I can keep track of everything medicine wise.
Derek & Leann
Sunday, May 4, 2014
Sunday, blessed
I want to wish everyone a wonderful and blessed Lord's day. I'm looking forward to calling in for our church services. We have received much scripture encouragement from many of you, and we appreciate the daily reminders to keep our focus on things eternal.
On Friday, we saw a GI doctor who grew up near me, and I so appreciated his insight on Derek's stomach tube. By 3p that day, we had it tightened up correctly and began to use it. It has caused no trouble since. I believe what was happening is that when Derek had an empty stomach last Friday morning (when it first began to tighten/pop and cause trouble), the stomach was trying to process food which wasn't there. Instead, it tried to "process" the balloon which was there. So, as the balloon got sucked into the intestines, it would tighten. Then, because the disk on top of the skin did not allow it to go through, it would "pop" and release it. So, the answer to this was to put food into the stomach to give it something to process. Well, instead, he went two days without food as the infection process started. Then, the slow drip worked well, because it gave food, but we had loosened the disk on the top of the skin thinking it was too tight. Wrong answer. By loosening it, when the stomach wasn't full, it had even more give to pull that balloon towards the intestines again. So, in the end, by tightening the disk correctly and keeping food in Derek's stomach, the tube is working properly, and it did need time to heal up where it had been traumatized by pulling the prior tube out. Anyhow, that is probably too much detail for some of you, but my nurse friends/sisters appreciate knowing the "reasons" sometimes.
On Thursday this week, Derek had an unusual strong right-sided headache start. It has increased in pain, so he had to get a fentanyl patch (50 mg/hr) plus additional fentanyl and now dilaudid. I believe this is from being off of the pazoponib for a week, and the tumors had begun to think they should grow. It could also be a buildup of fluid around the tumor site. They give lots of IV fluids to him while here. Thankfully, Derek's counts were all up, the hematologist okayed him to start pazoponib Friday night. We declined a brain scan knowing that even if they found growing tumors, we didn't want to do any surgery or switch up the chemo right now. Getting the dexamethasome (to reduce swelling around tumor) at the right dose for Derek is tough. Too much = hiccups, too little = bad headache. Right now, he is on 1.5 mg/day which only caused about 5 hiccups last night.
We've been told he may go home today, and our hopes are high in that direction. We came in with infection and stomach tube trouble. Those have been resolved, and I think we can deal with the headache at home. Please pray the headache lessens either because of dexamethasome, pazoponib, or simply because God wills it to go away. Sometimes, we never know the causation, and I have to let my little mind rest not knowing.
The weather has been gorgeous this weekend, and I'm looking forward to seeing if Derek will sit outside a little to enjoy it. May your day be filled with Holy Spirit abundance.
Leann
On Friday, we saw a GI doctor who grew up near me, and I so appreciated his insight on Derek's stomach tube. By 3p that day, we had it tightened up correctly and began to use it. It has caused no trouble since. I believe what was happening is that when Derek had an empty stomach last Friday morning (when it first began to tighten/pop and cause trouble), the stomach was trying to process food which wasn't there. Instead, it tried to "process" the balloon which was there. So, as the balloon got sucked into the intestines, it would tighten. Then, because the disk on top of the skin did not allow it to go through, it would "pop" and release it. So, the answer to this was to put food into the stomach to give it something to process. Well, instead, he went two days without food as the infection process started. Then, the slow drip worked well, because it gave food, but we had loosened the disk on the top of the skin thinking it was too tight. Wrong answer. By loosening it, when the stomach wasn't full, it had even more give to pull that balloon towards the intestines again. So, in the end, by tightening the disk correctly and keeping food in Derek's stomach, the tube is working properly, and it did need time to heal up where it had been traumatized by pulling the prior tube out. Anyhow, that is probably too much detail for some of you, but my nurse friends/sisters appreciate knowing the "reasons" sometimes.
On Thursday this week, Derek had an unusual strong right-sided headache start. It has increased in pain, so he had to get a fentanyl patch (50 mg/hr) plus additional fentanyl and now dilaudid. I believe this is from being off of the pazoponib for a week, and the tumors had begun to think they should grow. It could also be a buildup of fluid around the tumor site. They give lots of IV fluids to him while here. Thankfully, Derek's counts were all up, the hematologist okayed him to start pazoponib Friday night. We declined a brain scan knowing that even if they found growing tumors, we didn't want to do any surgery or switch up the chemo right now. Getting the dexamethasome (to reduce swelling around tumor) at the right dose for Derek is tough. Too much = hiccups, too little = bad headache. Right now, he is on 1.5 mg/day which only caused about 5 hiccups last night.
We've been told he may go home today, and our hopes are high in that direction. We came in with infection and stomach tube trouble. Those have been resolved, and I think we can deal with the headache at home. Please pray the headache lessens either because of dexamethasome, pazoponib, or simply because God wills it to go away. Sometimes, we never know the causation, and I have to let my little mind rest not knowing.
The weather has been gorgeous this weekend, and I'm looking forward to seeing if Derek will sit outside a little to enjoy it. May your day be filled with Holy Spirit abundance.
Leann
Friday, May 2, 2014
And a not-so-good day
Yesterday, Derek had been approved to stop the drip feeding to his tube and wait a few hours and start a bolus feed (which is what he does at home by dumping in a can of food all at once). Also, his blood counts were all okay to restart the pazoponib. (Two days earlier when I thought we were going to, I learned we had to watch multiple counts, not just the one they had told me, so now they were all above what they wanted to see.) So, it was an exciting afternoon for a couple hours. Then, his head started hurting on just the right side and his right side of his face. The normal pain med he was ordered did not take it away, just lessened it. This morning they have upped that med, and hopefully he will have full relief from that pain. But new pain like that probably isn't a good sign.
Then, just before I was going to bring the chemo over from home last night, the nurse put some regular meds through the stomach tube, and it leaked all over. Thankfully, that was not the potent chemo drug dripping all down his skin. The tube had not been leaking much at all. Also, the contracting/popping he had experienced in the ICU with this tube started up again and was doing that constantly, much worse than earlier in the week. This causes pain, and he was pretty miserable late last night. Also discouraged, because of the setbacks.
So, this morning we are supposed to see a GI doctor or surgeon to look at this stomach tube and get it figured out. It's been a problem from the start, so I hope they just put him to sleep and replace it with the old style tube that he liked, but we will see. Also, they referred him for an appointment with hematology supposedly to determine "why" the blood counts dropped. This is somewhat frustrating for me. They dropped either because of the new chemo or because of infection, but I don't understand how they will know which caused it, and even if they know, what are we supposed to do about it? He can't reneg on the chemo they gave him (the 2-month dose one), and they can't keep him "infection-free". The only thing we could possibly do is withhold the chemo that WASN'T causing the counts to drop in the first place, and that doesn't make sense at all. It was working on the tumors and helping. So, it seems like an unnecessary delay to me on getting the other chemo going again. Pray for my patience and understanding.
I'm sorry to have this setback. Please pray for endurance and love love love.
Leann
Then, just before I was going to bring the chemo over from home last night, the nurse put some regular meds through the stomach tube, and it leaked all over. Thankfully, that was not the potent chemo drug dripping all down his skin. The tube had not been leaking much at all. Also, the contracting/popping he had experienced in the ICU with this tube started up again and was doing that constantly, much worse than earlier in the week. This causes pain, and he was pretty miserable late last night. Also discouraged, because of the setbacks.
So, this morning we are supposed to see a GI doctor or surgeon to look at this stomach tube and get it figured out. It's been a problem from the start, so I hope they just put him to sleep and replace it with the old style tube that he liked, but we will see. Also, they referred him for an appointment with hematology supposedly to determine "why" the blood counts dropped. This is somewhat frustrating for me. They dropped either because of the new chemo or because of infection, but I don't understand how they will know which caused it, and even if they know, what are we supposed to do about it? He can't reneg on the chemo they gave him (the 2-month dose one), and they can't keep him "infection-free". The only thing we could possibly do is withhold the chemo that WASN'T causing the counts to drop in the first place, and that doesn't make sense at all. It was working on the tumors and helping. So, it seems like an unnecessary delay to me on getting the other chemo going again. Pray for my patience and understanding.
I'm sorry to have this setback. Please pray for endurance and love love love.
Leann
Wednesday, April 30, 2014
A good day
Derek is doing better still. Oh, I have my moments when I wonder what's next and when, but he has walked down the hall halfway to the nurse desk and back, they have continued to increased his continuous tube feeding to 75 ml per hr. I don't know what the goal is for hospital release, but I'll ask in the morning.
He is also still on the IV antibiotic. Otherwise, he's been working on his laptop, enjoying visitors, and resting. He's smiling more, asking for me to read the Bible to him, and talking about business opportunities. These are all signs he is feeling better. I'm guarding myself from thinking about going home too soon, but he told me his hope is by this weekend.
Again, we can't thank you enough for praying us through this trial.
Love,
Leann
Praising the Lord!!
He is also still on the IV antibiotic. Otherwise, he's been working on his laptop, enjoying visitors, and resting. He's smiling more, asking for me to read the Bible to him, and talking about business opportunities. These are all signs he is feeling better. I'm guarding myself from thinking about going home too soon, but he told me his hope is by this weekend.
Again, we can't thank you enough for praying us through this trial.
Love,
Leann
Praising the Lord!!
Tuesday, April 29, 2014
Out of ICU
We've moved! The Forest Park Building is our new home, room 3704. Derek's been continuing to improve. Thanks be to God! He went for a short walk, is sitting up for a couple hours at a time, and has had the artery line and other monitors removed. They are doing his tube feeds as a slow drip which is currently only up to 35 ml / hr. (not enough to stay alive on) Hopefully, this can continue to increase as his stomach begins working again as it should. The leakage is very little at this rate.
Mayo Clinic has okayed him to restart the Pazoponib, and the hospital pharmacy here has okayed us to use the already mixed syringes we had at home, so tonight should be his first trial of that following the sepsis. I pray it goes well and doesn't drop his white blood cell count again.
God's blessings be poured on all of you who care so much for Derek!
Leann
Mayo Clinic has okayed him to restart the Pazoponib, and the hospital pharmacy here has okayed us to use the already mixed syringes we had at home, so tonight should be his first trial of that following the sepsis. I pray it goes well and doesn't drop his white blood cell count again.
God's blessings be poured on all of you who care so much for Derek!
Leann
Sunday, April 27, 2014
Improvement
I'm thankful to God that Derek's fever has broke, and his blood pressure continues to improve with less medicine to support it. He slept a lot today, had some pain, but one of the joys of the day was how alert he was at times and talkative. I saw some of his personality again, and even though the pain-relief drugs make him sleepy, he could have times of visiting.
I rejoice with the four young men baptized in our church today, and we listened in to as much of the sermons as we could catch without doctors interrupting. The main thought I gathered was nothing gets past God. He knows and plans it all. This lifted me up.
May you each be blessed for your care for us.
Leann
I rejoice with the four young men baptized in our church today, and we listened in to as much of the sermons as we could catch without doctors interrupting. The main thought I gathered was nothing gets past God. He knows and plans it all. This lifted me up.
May you each be blessed for your care for us.
Leann
Saturday, April 26, 2014
Saturday update
Hello family and friends,
I wanted to update today after I talked with the resident. The main doctor team is not here today. Some positives for Derek's healing are: the white blood cell count that was less than 1 yesterday is 8 today. They just want to make sure it doesn't climb too high too fast. The goal is 11. He was able to be weaned off one of the meds that raises blood pressure, and the second one was decreased by almost half. The goal is to get off of these meds as soon as he can hold his blood pressure up on his own. His fever is still wanting to rage, and we are keeping it in check with tylenol. He's had discomfort with so many tubes to try to arrange around him and find a good position. They changed a couple dressings that caused him to yell out in pain. That's hard to take! The outputs from his body are working, but he cannot eat by tube or mouth yet. The tube is still leaking enough, they don't want to risk putting anything in his stomach right now, so all meds are by IV. At times, he rests comfortably, but he starts to squirm and needs help readjusting. He's taking pain meds as needed. There is a lactic acid blood test that shows how bad the infection is. If it's over 4, that's bad. It was over 5 yesterday, and now it's 2. So, I think we are making headway, but as uncomfortable as he is and the fever makes me say we are not out of the woods yet.
I've appreciated the support and prayers expressed, and I thank each of you for caring so much for us. I'm overwhelmed and thankful. I'm heartsick to see him suffer, and I'm blessed to have a front row seat to observe his Walk of Faith.
"Be ye also ready, therefore be ye also ready. For in such an hour as ye think not, the Son of Man cometh."
Love,
Leann
I wanted to update today after I talked with the resident. The main doctor team is not here today. Some positives for Derek's healing are: the white blood cell count that was less than 1 yesterday is 8 today. They just want to make sure it doesn't climb too high too fast. The goal is 11. He was able to be weaned off one of the meds that raises blood pressure, and the second one was decreased by almost half. The goal is to get off of these meds as soon as he can hold his blood pressure up on his own. His fever is still wanting to rage, and we are keeping it in check with tylenol. He's had discomfort with so many tubes to try to arrange around him and find a good position. They changed a couple dressings that caused him to yell out in pain. That's hard to take! The outputs from his body are working, but he cannot eat by tube or mouth yet. The tube is still leaking enough, they don't want to risk putting anything in his stomach right now, so all meds are by IV. At times, he rests comfortably, but he starts to squirm and needs help readjusting. He's taking pain meds as needed. There is a lactic acid blood test that shows how bad the infection is. If it's over 4, that's bad. It was over 5 yesterday, and now it's 2. So, I think we are making headway, but as uncomfortable as he is and the fever makes me say we are not out of the woods yet.
I've appreciated the support and prayers expressed, and I thank each of you for caring so much for us. I'm overwhelmed and thankful. I'm heartsick to see him suffer, and I'm blessed to have a front row seat to observe his Walk of Faith.
"Be ye also ready, therefore be ye also ready. For in such an hour as ye think not, the Son of Man cometh."
Love,
Leann
Subscribe to:
Posts (Atom)