AshLieAxAndIke

Welcome to Our Craziness!

Sept. 30th September 30, 2007

Filed under: Uncategorized — ashlieaxandike @ 7:45 pm

Andy is doing better today. They didn’t drain his lungs(we are thinking it has something to do with it being the weekend…) so we are going to have to start over with that process. They put him back on blood thinners today. He isn’t feeling as nauseas as he was, and hardly as cruddy, but he still just stayed in bed. I had told him to try and be in his chair at 10am and I would be there to help him finish getting ready. We got there shortly after 10(after a stressful morning of getting 3 kids and self ready for church by 9:30. I don’t know how I’ll ever do it with 3 kids and self and Andy if we have church at 9am!) but Andy was still in bed and they were working on getting ready to cath. I guess all those iv fluids are starting to come out and he is really full really often. We cathed and got him dressed, but by then it was 10:30. Church is only a half hour and by the time we got his boots on and him in the chair…and down to church it would be over. So we just hung out in the room.

The boys brought up their game boys and Charlie wasn’t feeling really well, so he just cuddled and slept and we were in the awesome private room, so we stayed a long time-till 3:30! It was great. I had a lot of fun. Aprill came with to help-she also helped get us ready in the morning. She is over so much, it’s great. We brought our own lunch and everything. Andy cuddled Charlie for a lot of the time, it was really cute. 🙂

I’m nervous that he won’t be coming home this week. I really want him to, but it is pretty important that he is healthy too. I don’t know what would have happened if he had been at home when his oxygen dropped on friday, so that makes me really nervous! I just hope that he gets better fast.

Advertisements
 

Saturday September 29, 2007

Filed under: Uncategorized — ashlieaxandike @ 7:45 pm

It was a rough night. We went to bed at 10:30 but the pillows are rock hard and I couldn’t get to sleep till 11pm. Close to midnight the nurses came in the change the plasma iv, then at midnight we woke up to cath. I swear the iv machines were beeping so often, but probably only a few times-it just felt like more since it’s the middle of the night and I was having a hard time falling back to sleep each time I woke up. At almost 4am we woke up to move andy’s position. It was suppossed to be at 3am, but they didn’t come in to wake us and I hadn’t even thought about bringing an alarm. A few more times of them messing with the iv’s, then at 6am we woke to cath again and roll. Slept till 8am. He had OT at 8:30 so I got up and got dressed. OT comes in the morning to do ADL’s (Activities of Daily Living). Andy pretty much dresses himself. He can’t do his boots, and he has a tool he uses to pull up his pants once you have them over his feet. So the joke has become the Josh, his OT just comes to watch him get dressed every morning-implying that Josh gets kicks out of it….they joke that Josh is taking pictures to put on the website “menindiapers.com”…I don’t dare look to see if that really is a website. eek! (Andy is very much like that-tends to be ‘inappropriate’ with everyone. It’s pretty funny most of the time though…He must be rubbing off on me.)

Then we did some PT in bed-leg exercises. He is definetly getting stronger. Adam says that he can tell that if they were to clear Andy to walk Andy could do it-he has the strength there for it. We got him up in his chair and went to OT again. Saturdays are half schedule, and today Andy had everything in the morning. He did the arm bike. Then PT again-he got on the mat and laid on his tummy. I guess that if you aren’t using certain parts of your body/skin it becomes super sensitized so you have to try and make sure to touch and put pressure on parts of your body you regularly do-like laying on your stomach. Last time they did this, over a week ago, Andy had a hard time with it. He said it felt like his stomach scar was wanting to rip open, but today he didn’t have any problems at all.

We got back to bed-that was a lot of work(even though maybe it doesn’t sound like it), and he napped for awhile. The nurses were getting spaghetti factory today for lunch and asked if we wanted any, so we ordered some. They are super cool. I’m glad we got on their good side. 🙂 Gretchen was there again today. She is hilarious. Andy has been feeling mostly better today-not hurting like yesterday and not as nauseas. It’s amazing what a little oxygen can do for your body. lol They also were giving him IV fluids all day, but he still isn’t having much output. The Dr. said that it could be normal-that if he was really dehydrated his body could just be absorbing the fluid, but since he wasn’t swelling it wasn’t a problem, yet.

No one heard from the surgeons about draining fluid off his lungs today. They were able to get his blood thickened up enough to do it, but no one came…Weird.

I think the nurses have fun with Andy. He needed a new IV put in and he had 3 nurses in there for it. Gretchen came in like 5 minutes before and just hung out in our room. We are having a lot of fun. lol

I did get to do shower today with Andy. We did it at 4pm so I could help. (Thanks Leslie for making that happen!) It went really well. I ended up doing it myself. Karen came to help, but I got andy ready and got him in his chair and we went to the shower room. They got the padded shower bench that Josh showed us we could use and that was a lot more sucessful. Andy wore his boots to transfer into the shower then I got them off. Karen just left-she asked if we needed help, that we seemed to be able to do it ourselves, and we could. So, i helped wash and all that then we dried off and got the boots back on and transfered back the the wheelchair. Josh recommended using the boots to transfer. It was such a great idea. With the boots on he can weight bear some, and it makes it so much easier to transfer. Andy said it was the best shower yet. Yay! I needed to leave right after, so Karen got him back to bed. I’m confident we can do that at home. I don’t really feel like I need to do it again up there. After all, I did it all myself. 🙂

It’s so nice having the private room with so much space. I’m loving that. It just feels so different than the shared room. I’m really glad that Andy is feeling better some. I hope that after taking this fluid off his lungs he will be back to normal.

 

Friday

Filed under: Uncategorized — ashlieaxandike @ 12:24 pm

I had another appt today with Alex. He is doing well. We set up bi-weekly appts for him though. Pretty soon my life will only consist of going and coming from appts. I really have turned into the medical soccer mom. Lol

I got to the hospital around noon. Andy was just sitting in the dining area. Just sitting not feeling good. Today he is having pain and is really nauseas. He did his therapies this morning in bed and was waiting for the afternoon therapy. He didn’t eat any lunch cause he was feeling so sick. We went in with Adam and Andy barely started moving over to the mat and just couldn’t do it. He was crying-he just has a lot of emotion. He hates being so sick, its stressful not knowing what’s going on, and he hates not being able to do what they ask of him. He said he feels like a failure. He has had a really hard couple days. I feel so bad for him.

We stopped therapy and went back to bed. We both napped for a couple hours. It felt really good. I love having a bed in here. We didn’t go to Gateway – they rescheduled to Monday. What’s up with him getting sick on Fridays?!? Lol

One of the surgeons from yesterday came in and talked to us. Andy wasn’t really talking back, but we basically decided it isn’t acid reflux. They are going the ‘fluid around the lungs’ route now. They are probably going to drain more fluid in a couple days. She said its normal to have some fluid, and its normal to have extra fluid when you’ve been the hospital for so long, and they don’t usually do anything about it, but he is having symptoms from that possibly so they try and do something about it.

Some old family friends of Andy’s came by to visit. The nurse came in and I wasn’t really paying attention to her since we had visitors, but she said Andy was white as a ghost and she was having trouble getting him to talk to her-so she out a pulse ox on him and his blood oxygen level was down to low 70’s. (Normal is 90 or above.) So she called in the forces. Dr. Ryser came in, a respiratory therapist came in, like 3 nurses-big deal. Asking questions about today. They put him back on oxygen and his level went back up and he ‘woke up’. Within minutes someone came to do a chest x-ray (stat!) and then someone came to draw 4 vials of blood-to check everything. We really need to figure out what is going on! This is stressing us out!

They are giving him vitamin k and some plasma to thicken up his blood so tomorrow they can draw the fluid from his lungs, then they will start him back on the blood thinners. They are giving him iv fluid-he has been peeing hardly anything. After a nap after he was put on oxygen he is feeling better-he is interacting and not feeling so gross. He even ate part of a whopper so that’s good.

We aren’t doing bath tonight. They do it every other day but yesterday he told them not to so we could do it tonight together…but he is feeling yucky and we had that scare, so we aren’t doing it tonight. Bah. I guess in the end I’m not as nervous about bath as bowel care, but I still want to figure out how to do bath.

Andy’s family came up and watched TV. i should have told them that they didn’t need to come tonight. I really just want it to be like home (except for those 3 kids…) But eh, can’t do anything about it now.

We did bowel care-it seems super simple. I just watched her, so next time I’ll do it. He has to turn every 3 hours through the night and cath at midnught and 6 am. This is going to be rough to get used to I think!

 

Thursday September 27, 2007

Filed under: Uncategorized — ashlieaxandike @ 7:22 pm

Andy was feeling better today. Not all the way, but he didn’t have an ‘episode’ today. A couple dr.s came in and talked to him about it. Dr. White(the trauma surgeon) wasn’t sure what is going on with the chest pain, but they are thinking maybe acid reflux. It doesn’t fit everything that we are saying, but it’s something simple they can try first. We will know pretty fast if it is or not since once he takes the medicine he shouldn’t have another ‘episode’.

He did PT with Adam. (Yay for Adam-I like him the best) Andy did really good. Adam was really impressed with the progress Andy has made-the strength in his legs specifically. He seems to not be having as much hip/nerve pain when he moves his right leg. He can move it a lot farther than he could. He had OT with Josh-they worked on triceps using a weight lifting machine that andy pushes down with his arms while he is sitting in the wheelchair. Josh really pushed him. He had him do a few sets normal, just up and down, then a few sets where when andy was coming back up he had to stop at 25% 50% and 75% and hold each for 10 seconds. Andy did great. He is going to be so buff after all this!

He moved to the new room today. It’s going to be awesome. I didn’t have any time there to enjoy it though. We moved, and of course Andy isn’t much helping putting stuff away and organizing, so I did all that(and I was stressing having everything out-we have a ton of stuff up there!). Then Andy needed help doing something and that took about a half hour. I was rushing so much-I should have left at 4pm to get home in case we needed to go to visit today, but I didn’t get out till 4:30 since I was helping Andy. I should have just had his nurse do it, but I really want to do all I can and not rely on them so much. (but even on that I go back and forth-the things I know how to do already I’m tempted to just sit and let the nurses do it since I will be doing it myself for a long time, why not just take advantage of the help we have now?)  Oh, and visit didn’t happen, so it is frustrating I rushed out of there, but it’s also a good thing since I would NOT have been home in time to make it like I should have. That would have been really embarrassing.

Dr. White did tell us that they did find a small blood clot in a small vein in the back of one leg, but it’s nothing to worry about. Whew-that is good to know. The new room is going to be awesome. His hospital bed is there, plus a queen bed and a few chairs. Lots of storage, a tv, a sink and bathroom with shower. The bathroom has a “for patient use only” sign on it, but if I’ve learned anything yet at the hospital it is the bathrooms that say patient use only I CAN use them and if they don’t have that sign, I’m not supposed to use them….So I’m excited once again to be able to shower there. lol I’m planning on sleeping over tomorrow(friday) night and again Sunday night to help with shower and bowel program, and to know what needs to happen throughout the night. That will be fun, but hard on my boys probably. I think in the new room will be better for the boys to visit-it’s bigger and private so hopefully we can stay longer on Sunday. That would be good.

I’m getting really excited for him to come home. I don’t know how to get my boys ready though. I think they don’t get it-that daddy isn’t going to be back to normal and he is going to need a lot of help and he isn’t going to be able to play like he used to. I need to talk more about it, but I really don’t think they get it when I have talked about it. It will be an interesting few days/weeks while we all adjust to our new routine.

 

today September 26, 2007

Filed under: Uncategorized — ashlieaxandike @ 5:29 pm

Two posts at once-how exciting! Lol

andy was doing ok this morning. His chest was still hurting but not as bad.
We hung out and had lunch then went to PT. They are teaching him to do
wheelies. Its helpful, and important when going over bumps or wide cracks.
He is nervous about it-just really scared about the pain-so its hard for
him to force himself to do it. He is getting better, but not there yet.

then we did OT-they have a real bathtub so we took andy down and tried out
the bench and see if we can make it work. He did ok-so the one we are
getting will be good he thinks.

On the way back out of the tub andy started having the chest pains again.
We got him back to bed. Pulmonology was supposed to come today but they
didn’t. I’m stressing about the pain-i guess I feel like it can’t be the
blod clot since they say the blood  clot has been in there a couple
days-why would he have pain just now?

We didn’t change rooms-they had a lot of people going home today and not
enough time to clean the rooms, so probably tomorrow. Tomorrow adam will be
back too.

Someone came up later and did ultrasound on his legs to check for bloodclots-but of course he can’t say anything, we have to wait for the Dr., so we will hear about that tomorrow. Nothing much more than that today. I’m excited for tomorrow to move rooms.

 

Yesterday

Filed under: Uncategorized — ashlieaxandike @ 5:23 pm

I can’t believe how tired I was last night! Sorry about no update!

All was fine till about
noonish-we went to go to PT and half way there andy started having some
chest pain in the middle of his chest. They were worried about a blood clot
and we got him back to bed fast as we could. They said they ordered a test
‘stat’ but it didn’t happen till 5pm. That was a hard wait-im
thinking-people die of blood clots in their lungs. Andy’s grandpa died of a
blood clot a long time ago. And we just waited. And waited.

he does have a blood clot in his lungs, but its a small one in the bottom
depths and it looks like its been there a couple days, so they aren’t
worried about it at all. They aren’t putting him on bedrest, they aren’t
upping his blood thinner or anything. I still wonder what the chest pain is
about.

The meeting happened-he isn’t coming home till probably next week friday.
We won’t have the machine to get in and out for awhile and other things in
the house aren’t ready, and nursing says they have things they can do with
him still. They said we will move him into a ‘transitional room’. Its more
like home-it has a regular queen bed, carpet, its pretty big, I’m assuming
it has its own bathroom(maybe I can shower here), and while I’m here ill be
in charge of his care. They want me to take over so its more realistic. I
wil sleep over a couple times.

I stayed later last night to do bath and the bowel program with him. We
ended up not doing the bowel program-when we were moving him to the shower
chair(first time in the chair) something happened to his bum and he was
dripping blood, and he was in a lot of pain from the hard shower chair. We
washed as fast as possible and got him back to bed. It really was a total
mess. I was down holding his legs off the ground and I was getting totally
wet.

Once in bed we were able to see that there is a little cut/tear in his anus
that was bleeding. So we didn’t do bowel care.

I left soon after that-it was a really long day.

 

September 24, 2007

Filed under: Uncategorized — ashlieaxandike @ 8:36 pm

Today ended up being a crazy day. I was thinking it was going to be a relaxing morning, and we could just hang out and not have to rush to the hospital or anything. I remembered, in bed last night, that I had court for the boys this morning. I went to that(nothing happened again-but we are getting closer and closer to stuff actually happening. lol). The caseworker has to do a home visit once a month so she asked if she could come over after court. Sure! (I immediately called Aprill at home with my kids and asked her to make sure they were dressed!) On the way home I got a call from Susan, the lady from workers comp, and she said that she, and a guy for a lift and a guy for the other machine could come over this morning to evaluate. Sure! I’ll be home. lol

The caseworker came and went(and didn’t have any problem with Alex’s hair-hopefully ‘mom’ doesn’t either!)

The guy from Magic rest, Susan, and a couple guys from paramed(The president actually…it’s a local company and a really new product) Their product-I can’t remember what it’s exactly called, but we can call it the paratrans-is awesome! I love love love it. It’s super easy to use and not attached to the house. It’s pretty cool. He would transfer to it’s chair, then it just climbs the stairs. so hard to explain-you have to just see it. The magic rest guy stayed and we talked about a lift. I think Susan is thinking of getting the para trans then if this becomes long term installing a lift. He is also the guy who they ordered the bath bench and toilet chair and slide board from. He walked around the house, looked at the bathroom, etc. Nothing new, but everything is getting a bit closer to coming. He will be delivering the stuff later this week.

I got the kids off and my car gassed up and off to the hospital. I didn’t get there till 1pm. He is having more nerve pain today. He is feeling more and more of that. I wonder if that means that the nerves are healing and starting to ‘feel’ again. I hope that it’s not permanant. He isn’t liking it-it’s shooting pain, and burning, etc. you can’t touch his right toes right now or it causes him too much sensation. He wasn’t liking his nurse today at all. the guy didn’t seem like he knew how to do anything. So between the 2, Andy didn’t seem to be having the best day. Time goes so fast while I’m there, but nothing much happens and that doesn’t make sense to me, but it always seems like it’s time to go so fast.

I got my kids and went to do a couple errands. I went to lowes to find the special door hinges to make the door open wider and after waiting for like 20 minutes they told me they don’t have them. grrr! I can’t do that with 3 kids, so I’m going to just tell Susan tomorrow I can pick them up if she needs, but she has to tell me where to go that has them. I don’t have the time or energy for that. It was frustating.

I’m exhausted. It’s been a long day for me. I’m not sure how I’ll do it when Andy is home and I’m home all day with the kids and him and….it’s just going to be a lot of work. ‘Can we do it?” “Yes we can!”