Weblog
Thursday, August 07, 2008
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And we're home! We got in last night around 8:00, and it's soooo good to be home! Aaron is so much more relaxed, and so happy to be out of the hospital. Thanks so much for your prayers while we were there, and thanks for continuing to pray now that we're home! Still need to watch his incisions for infection, especially the big one where they pulled some of the staples out. I get to be the lucky one to change the dressing on those twice a day, packing them with saline dampened gauze twice a day! I also need to figure out what to cook for Aaron that will work for him while his body adjusts (need to see if I remember how to cook after two weeks!
). Emily is still at my parent house - not sure when we will connect to get her home. She's been having a blast, but we miss her! And school starts soon, so we need to get her ready for that as well. Staying up late with cousins at Grammy and Papa's house is great, but not good for preparing to start school again! 
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Wednesday Afternoon - Finally!
We are out of here today!!! One of the docs just came in and said we can go home today for sure! Yay! There was some concern in that his white count on this morning's blood work was slightly elevated, but they think it's probably from his big incision, which has been a tad icky. They inspected it this morning and said there was literally maybe a drop of pus there, but they are not concerned as he hasn't had any fever at all, but we need to watch it.
So we are now waiting for paperwork, the nurse to teach me how to clean and pack his incision, to get that IV port out of his wrist, and we're gone!
Pray for safe & comfortable travel home for us, and for Aaron to remain free of infection while this wound heals! It will be so good to get home, even if it is HOT there!
Hoping to beat the afternoon traffic out of the bay area!
Amy
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Wednesday - 8/7
The plan is for Aaron to go home today, but the nurse said she hasn't seen the paperwork that says 'Go' just yet. The surgeon said his usual 'let's see how you do with breakfast and lunch and maybe you can go home', which he says every day.
Aaron managed to get through the night with some decent sleep and no IV pain meds, which is good, but he is still fighting some cramping. He's not feeling as well as he did yesterday morning, which is a bummer, but he's up walking the halls with his dad again, and his mom and I are keeping track of the laps as they pass by the door. Yesterday by this time he had already done 20 laps and been scolded by a nurse for walking too fast.
So we're just waiting. We all feel he needs to go home today no matter what - he will be more relaxed at home, in control of what and when he eats, and doesn't have to wait for a nurse to bring him his medication - he can take it right on time or as needed. The hardest part of being home will be the heat and still needing to get up and walk! And of course for me, the fact that I will have to get back to routine life, preparing meals, cleaning, shopping, laundry, getting Emily ready for school, rather than sitting around a hospital. I'm ready to be out of this hospital though!
So prayers for today - that the pain will subside either on it's own or with the pain medication, and that we'll be able to get home today without any problems. And that once we are home, he will just continue to improve, feeling better each day as he heals and his body adjusts to his new system.
I will let you know how the day goes. Thank you as always for praying for us!
Amy
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Tuesday Evening - 8/5
Hi everyone - sorry for the late update!
Aaron had a good day, and is off the IV meds once again. He met with the pain management specialists today, and they came up with some meds that should work for him, and he is supposed to be trying them tonight to see how he does.
He did pretty well with the soft foods diet today, but still had a little cramping. He was able to handle it through with just the oral medications they've had him on for the past day or so. He also walked a lot today - 35 laps! One nurse freaked out because he was moving so quickly - they aren't used to patients walking at such a fast pace.
The plan is for us to go home tomorrow (Wednesday). He needs to get through this night without the use of IV meds, and to continue doing well with the soft foods in the morning. I realize this is a late email, so many of you will not get this until morning, but if you do, please pray for these things!
I'm staying with Aaron's parents again tonight in the motor home. I talked to Aaron a little while ago - he said he was feeling some cramping, and hoped to be able to get out and walk some more if needed. He was still waiting for the new pain med that the specialists had ordered for him - not sure why sometimes it takes SO long to get things in a hospital. :)
Thanks for your prayers - I will update in the morning!
Amy
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Tuesday - 8/5
Aaron had a pretty good night, got some decent rest and only had to use the pain button a few times towards morning. The entourage of doctors has been through to see him, and all are wanting him to advance his diet again and get out of here - I think maybe they are tired of us being here.
The feeling is mutual!
So today's plan is to go from the full liquid diet to soft foods (and we wonder why no one offered us this soft foods diet before!?!?!) rather than a full diet, to get off the pain button again, to walk walk walk, and to keep everything moving right along. Since he's had such on and off issues with pain, they are sending the pain management specialists in today to see if they can't come up with a workable plan that doesn't include the pain button, so we can get that much closer to going home.
Please pray that they will find a good solution, and mostly for the usual - that the grouchy pouch will function and do well with the soft foods! Hoping that we will be going home by Wednesday!
Amy
Monday, August 04, 2008
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Is today the day? Day 12
Oops - I've been emailing updates but not posting them here, and it looks like I've missed a few. I will post them after this message in case you're wondering what's been happening up to this point!
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8/4 - Monday 1:30pm
Solid foods are still a problem.
Since breakfast, Aaron's been
in a lot of pain, and has since said that he doesn't think he's going
to be able to get out of here today after all. He is very
disappointed, and annoyed to be in so much pain again. It's
frustrating that his system is taking so long to handle the solids - he
does great with the full liquid diet - pureed soups, yogurt, pudding,
and the scrambled eggs on the regular diet seem to go through ok. But
he ate half a banana and some hashbrowns with breakfast this morning,
and he's been miserable ever since.
Please pray that he can get back to being comfortable again, and that the foods he gets and eats will pass through without causing so much pain. I read about people in similar circumstances, and how sometimes all it takes is an extra day and things just suddenly turn around and start working perfectly. We're praying that will be the case for us as well - today!
Please continue to pray for healing and for that pouch to work properly with all foods! Our goal is to get past this pain and walk walk walk today.
Amy
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8/4 - Monday
Good morning everyone!
Aaron had a good night last night with only a few hits on his pain button. He says he slept well, and this morning they disconnected his IV again and he got solid food for breakfast. He is having some crampy pain again, possibly from the half a banana he ate with breakfast, but after a few laps around the floor, he is still moving things along, which of course helps with the pain.
The good news is they ARE PLANNING ON RELEASING HIM TODAY! Not right away - they are still wanting to make sure his pain is under control with the oral meds. He is determined to be out of here today. :)
So - please pray for more and more improvement throughout the day, and that we will be able to go home this afternoon. I will keep you posted!
Amy
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Sunday afternoon
It's been a good day so far - Aaron is feeling pretty good with only periods of crampy pain, but is back on a full liquid diet with no problems. Hooray! He's walked quite a bit today, joked around with the nurse, watched TV, spent a little time online - things are looking good! His parents came back up today and surprised him (I knew, but his dad wanted to surprise him!), so we're visiting with them.
As long as things keep going well, we are hoping to be out of here by Tuesday. He's still got his IV in, but it may come out tonight or early tomorrow...we're not sure if they will want him eating solids before he can leave or not, but it seems likely that they will want to be sure he can handle it. After his first surgery in Feb, he got out while still on full liquids, but that was then and this is now, and his system is different. And with the problems he had last week, I'm guessing they'll want to be sure, which makes sense.
So, pray that he will just continue to improve!
Thank you!!!!
Amy
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Sunday - 8/3
Good morning everyone.
I made it back to SF last night around 10pm - a little later than I wanted to get back, but at least I got things done at home while I was there.
I spent the night here with Aaron again - he had a much better night! He is still having some pain, but not as bad as the night before, and he was able to get some rest. The 'done bug me' note on his door must be working!(It doesn't really say 'don't bug me' - it's much more politely worded than that!)
He was able to get up and walk yesterday, which is great, and things seem to be working better, so he dodged the tube yesterday. The doctor was in just now and asked if he was hungry, to which he responded yes! He wants to go back on a full liquid diet, and the dr. agreed that it was time. Not sure if he'll get breakfast since it's a late request (one bad thing about this hospital - the kitchen is on another campus and the food gets trucked over here each meal), but lunch for sure.
Pray that he continues to improve, and the he gets more and more bowel function and no complications.
Thank you!
Amy
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Saturday - 8/2
I am temporarily home from SF. I spent last night at the hospital with Aaron - he is doing slightly better than yesterday, but didn't sleep well at all, dealing with pain, and now the nausea is back because he's back on the IV meds. His blood work from yesterday also showed low potassium and phosphate levels, so those were added to his IV last night.
It was hard to do, but I decided this morning that I had to get back to Fresno for at least a few hours, to get clean clothes, pay some bills, etc. It was tough to leave him, but at least I'll be back with him tonight.
When I was getting ready to leave, the doctor was there and still talking about tubes. Aaron said not yet - he did start passing things through the night and thinks it feels like things are starting to work on their own. The doctor said ok and that she would check in later.
I got home safe and sound (boy is it hot! I think I have acclimated to the SF weather! it's also nice to see front yards with flowers and grass - so much cement in the SF!), and plan to get clothes washed, repacked, a few things taken care of, and head back to SF late this afternoon or evening. I will stay with Aaron tonight again, and depending on how he's doing, I may see if I can get a room at the hotel again for Sunday.
Please continue to pray that his pouch will function on it's own and that the tube won't be necessary. Please also pray that Aaron would be able to get some rest today - I called the hospital a few minutes ago to get an update - the nurse said he's resting, pain is under control (Aaron might disagree, but I haven't talked to him), and he asked to have a note put on his door to give him some privacy. I think he's trying to politely tell the staff to leave him alone unless he calls, because he needs some sleep!
As always, thanks for praying. I'll send another update tonight after I get back to UCSF.
Amy
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8/1 - Friday
This has been by far the longest and most traumatic day yet. It amazes me that we could go from being ready to walk out the door yesterday morning, to complete misery the following day. It's a good thing we didn't walk out the door when we felt like it.
We're not sure if the pouch has started functioning. It was another day of large, evil tubes not staying place and doing what they were supposed to do, followed by threats of another tube to replace the one that slipped. Aaron refused. If he hadn't, I probably would have.
He is finally somewhat comfortable, tubeless, and back on IV fluids and pain meds. I am staying with him at the hospital tonight. The dr. said she wants to try the tube again tomorrow. We are praying that this won't be necessary, and that his system would start functioning tonight.
Please pray for us.
Amy
Friday, August 01, 2008
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Pray hard
Aaron was looking and feeling good when I came in this morning. Last night's CT scan showed no leaks or problems with the j-pouch (for more info on what a j-pouch is, you can go to www.j-pouch.org), but they said it looked 'big'. The nurse this morning referred to it as being dilated...my best guess is that it's gotten too full since things aren't passing as they should. This morning the doctors actually drained the pouch which gave him great relief from the pain, and he was feeling great until breakfast.
So an urgent prayer request is that his pouch system would start to work, and that things would pass. He is in incredible pain now from gas and just not passing anything at all, even after walking.
The doctors said this morning he would probably have to stay a couple of more days, which is disappointing, but we sure don't want to get out too early if there are still problems that need to be addressed here.
Aaron is very discouraged that this pouch isn't going to work out for him, but I'm trying to reassure him that it takes time. He's got a whole new system in there that is being stubborn. We really need your prayers today. Pray for God to heal that pouch, and to cause it to work properly. I'll keep you posted.
Thursday, July 31, 2008
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Thursday eve prayer request
After a great morning, Aaron started having a lot of pain this afternoon, and the pain meds didn't seem to be helping. I finally told him that we hadn't really walked since the 12 laps we had done this morning, so maybe he just needed to get up and move again - this is his first day on solid food, after all! So he got out of bed even though he didn't feel like it, and started down the hall. After the first lap he said it definitely felt like the pain is being caused by trapped gas, which really is par for the course with this surgery.
Even so, the doctor has already ordered a CT scan this evening, just to double check that everything is ok in there. Aaron is discouraged and would rather not do the test (of course he has to drink some contrast fluid, and that stuff is never good), but the doc said we should do it just to be sure. Meanwhile, we'll just try to keep him walking, and drinking lots of water now that he's off the IV.
Please pray for Aaron as he's already anxious about the scan - he just said that it's not going to be easy - and for good results on the test. Also that whatever is causing the pain will work itself out quickly. We really feel he's so close to getting home, and I haven't lost hope that he might still be released tomorrow morning.
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Aaron had another long night and used his pain button quite a bit, but was doing ok when I arrived at 7:50. He's on a full diet today, and had scrambled eggs, bacon and oatmeal for breakfast - and I just asked him if he cramped up this time - he said no!
His nurse said the goal is to get him off the IV pain meds today, and to be taking all medications by mouth. They lowered his IV fluids again to the lowest dose, and if he's off the pain button, they can probably stop the IV altogether.
I asked the nurse if going home tomorrow was a realistic expectation, and he seemed to think so.
*Amy does a happy dance*
So we're very hopeful that going home tomorrow will become a reality. Goals for today are to get off the IV fluids and pain button, to continue to do well with eating and the whole digestion process, and to walk, walk, walk. Oh, and the leak seems to have slowed down over night as well - the little bulb on the drain seems to be catching more of the fluid and the leak wasn't even covered when I came in this morning. We're not sure if it's because he was in bed all night or not, but we'll find out when we go for walks today.
Thank you thank you thank you for your prayers! Please pray this if it's God's will, that we might be able to go home tomorrow - that is what we'd love to see happen.
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