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Thread: Independence Day: July CN Check In

  1. #21
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    Quote Originally Posted by Earth Mother 2 Angels View Post
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    ((((((funnylegs4)))))) ~

    Not too long ago, you were explaining to me how to use a DVD drive on my computer. What are the odds that I know how to record a Skype transmission? The odds are Zilch. I don't even know how to use Skype! Have never used it, although my friends are bugging me about doing it.

    What about a podcast? Any podcasters in New Mexico who might be interested in transmitting or podcasting your Q & A? (For the record, I have no idea how that works, either.)

    Interesting conversation you had with the gal from Syria. I would imagine there is a great deal of misconception about almost all disabling conditions world wide. I'm sure that paraolympic events and sporting events with disabled athletes are happening on a regular basis, but we don't hear about them or see them on our TVs. Mainstream media, including the internet, doesn't really promote these things. We don't have enough visibility in the disabled community.

    Looking forward to your report after the screening!

    ((((((Mary Grace)))))) ~

    On Thrs., Jim went to our favorite local restaurant and brought home delicious, fresh veggie meals, which have lasted until today! No cooking for me, and that has been a real treat! We were a week late, but we had an anniversary lunch.

    We have a seriously leaking faucet in Jon's bathroom, and Jim can't loosen the valves to turn off the water. We'll likely be calling a plumber on Monday. While he's here, we'll ask him about replacing the toilet, and then take him to our upstairs bath (the disaster) and get an estimate on remodeling with an accessible shower. Not the walk in tub. I've been reading about those, and the reviews are not favorable.

    We have to get a new garage door, and I have to contact the City to find out whether we're permitted to power wash our driveway. Our Association has issued us violations on both counts. We do need a new garage door and have for years. We haven't power washed our driveway for years, because of the drought. Lots of other driveways up here are in the same condition. Ours may be worse, since we have a large van, and it sits for a week or more without being moved. No oil, just an orange stain. We bought a power washer and Simple Green concrete soap. We just need to get permission to do it. It takes a gallon of water per minute to use this washer. That's a lot of water.

    It's too hot and humid to take on the termites. Once the orange oil is applied in our attics (we have two), we have to turn on our heater to 90 degrees for several hours to activate the oil. That project is on hold. Meanwhile, the termites are probably gnawing their way through our home. Aaagggghhhh!

    Jim still has tests, and I need to go to the dentist.

    Lots of smoothies, so we have plenty of 'em when we need 'em! It will keep the Cabana Boys busy. Plus, we always have extra smoothies for any of our old friends, should they decide to drop by. I live in hope!



    And plenty of

    Love & Light,

    Rose
    Hi Rose, LOL Sorry! Some people are better at certain tech things and not others. I know people who can't type but can use iTunes LOL. Just thought I would ask anyway. You should get Skype!!! It's a ton of fun! It breaks a lot of distance barriers. The podcast idea is actually a very good idea. I did an interview on a podcast once. I'm sure if I had notified the people at the screening a bit earlier it could have worked since I believe they do have the right tech for a podcast where we did the screening. Oh well. Maybe next time. Here's a blog post I wrote on the Braintalk blog that includes my screening report link and other reviews of my film. http://www.braintalkcommunities.org/...film-screening If that link doesn't work here are my latest tumblr blog post direct links
    http://cripvideoproductions.tumblr.c...or-inviting-me
    http://cripvideoproductions.tumblr.c...reening-report
    http://cripvideoproductions.tumblr.c...wn-to-earth-in
    Yes I agree disability is not visible enough at all which is why I made these films in the first place. Thanks for the suggestions and support!!! It's humid as heck where I am too.

    Lisa, I am praying that the surgery goes well!
    Last edited by funnylegs4; 07-31-2015 at 02:20 PM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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  3. #22
    Distinguished Community Member andromeda31's Avatar
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    Hello!

    Just had to come and update....things are going great! Much better than I had thought in my head....since I only got 2.5 hrs of sleep last night and could use a nap, I am going to copy & paste my facebook updates.

    0731150550.jpg0731151227.jpg0731151418.jpg

    Update #1: We arrived on time! Checked in at pre-op and were quickly taken back to a pre-op room. We met with all the doctors and nurses that were assigned to her operation and answered many questions. Caitlin was in pretty good spirits. She got a little crabby when she got out of her wheelchair and into the bed and couldn't have her kindle in the bed with her. They gave her meds to make her drowsy and they worked quickly though so then she was fine. She was taken back to the OR at 7:30. I checked into the waiting room and got a pager so I could take her wheelchair out to my van. We won't need that today so I didn't want to push it around empty all day. One good thing about coming so early is I have a parking spot right outside the skywalk doors! I gave her a big hug and a kiss when they came to get her and I had a tear in my eye but I am fine now. I felt like I was going to puke when I woke up this morning though....was stressing a little bit! Only had 2.5 hours of sleep. I am sure it will hit me later when the chocolate croissant I just ate wears off. Going to pop a movie into my laptop now and work on the tank tops I bought for Caitlin. I am going to cut the straps and sew ribbon so I can tie them on her so it can go over her IVs and she can wear something cuter than the hospital gown when she feels a little better. smile emoticon

    Update #2: They send me texts from the OR to update me....at 10:21am they started putting in the implants/hardware. At 11:42am, I got another text saying they are continuing to put in hardware and everything is going well. Glad to hear good news and it is really nice to get the little messages during it! Meanwhile, I watched the entire Hobbit 3 movie, which was over 2 hrs long. While watching, I made this cute tank top for Caitlin to wear while in the hospital. I cut the straps of a tank top and sewed ribbon ties and cute button accents. This will allow it to go around her IV tubes. I brought some jammie pants along that we already have that match the ribbon. She can wear this once she starts getting up out of bed and they take the drains out and stuff. She'll be the best dressed kid on the floor! smile emoticon

    Update #3: 1:18 text, they completed the correction and are working on closing the incision. 2:08pm text, they are finished with the surgery and heading to the ICU, Caitlin is doing well. We were in the ICU room by 3pm! I spoke to the surgeon and he said her back moved really well into position and it went quicker than they had estimated. We will see how straight her pelvis is once she is able to start working on sitting. She is drinking water and talking and watching tv. She just had her noon dose of felbatol (at 5:30pm), but she should be caught up on that by morning. Things are going really well! She spit up a little water, but she overdid that a bit, drank a whole glass and then after drinking almost all the refill, she had a little spit up. Glad we had cloths ready for it! This has been a LOT easier than I had planned for in my head....

    Lisa O.

    PS: she did just puke again, water (that she had been drinking) but it is because her tummy is not emptying yet so all that she kept drinking had no place to go but up. They just put another dose of Zofran in her iv too which should help. :) Hoping I can sneak a nap in soon!
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  4. #23
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Caitlin)))))) ~

    Thank you for these updates. So glad that all went well with surgery! So, from start to finish, it took about 6 hours?

    The tank top is darling, and she will be the cutest patient in the Unit that's for certain! Brilliant idea! As per usual for you, Lisa.

    I hope that the hospital is providing you with a comfortable cot or recliner, with pillow, sheets, and blanket, so that you can get some sleep.

    I can't recall now whether you're in Madison or Milwaukee, but that sure is a nice looking hospital.

    Sending healing prayers, and prayers for restful sleep for both of you, and that Caitlin's nausea subsides quickly. I'll look forward to your updates, all with great news!



    And both of you need a few of these ~



    (will add some veggie protein to them for you to give you extra strength!)

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  5. #24
    Distinguished Community Member andromeda31's Avatar
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    Hi Rose!

    She threw up a few more times, but is resting now. I brushed her teeth and that seemed to calm her down. She keeps asking for water but the nurse nor I wish to give her anything until her stomach stays calm for awhile. I think it helped her to have the wet toothbrush clean her teeth off a bit. We're in Milwaukee....the picture is the new tower and that is where we are. The rooms are super nice! Huge windows, lots of light, parent nook with mini closet, pullout loveseat and desk area for the laptop and even a curtain I can pull between Caitlin & I. Since she is in ICU, there is a window that looks right at her from the nurse's desk...2:1 ratio in the PICU so lots of good care. I brought my own pillow from home and my 1/2" thick yoga mat so I am set for the parent couch! I discovered this in April when we were here. I always leave my mats in my van and in April I had the thought, "hmmm wonder if I would sleep better if I laid the mat on top of the pullout?" The answer was yes! I couldn't feel the seams at all, it was great! I don't think I will get much rest tonight though with the puking and 'cares', not much rest time for either of us. RT was just in to do a breathing treatment. She tolerated it better this time...she cried the first time he came a few hours ago, but this time she was just mad about it. It is a step up, lol!

    Lisa O.

    Yes, veggie protein would probably be a good addition to my smoothie since my supper was 1/2 bag of Veggie Straws, lol! (they are a crunchy snack food supposedly made with vegetables) Didn't have time to sneak away to buy supper. I did eat lunch at the café so I wasn't starving though.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  6. #25
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Caitlin)))))) ~

    How about ice chips occasionally? She can suck on them like a popsicle, instead of swallowing the water in sips or gulps.

    I love the parent nook! We have something similar at our hospital in the newer (adult) ICU for families. Same thing, with a closet, a sofa, a curtain. No desk though. But we ended up in the old ICU the last time, and it is ultra cramped. Great idea bringing your yoga mat too!

    How are Caitlin's vitals? Her SATS (you mentioned breathing treatment ~ was she intubated for surgery?), her heart rate, and her blood pressure?

    About eating ~ I've heard many lectures from friends and loved ones (including my CN family) about how I should make sure that I'm eating 3 meals a day during a hospital stay.

    Check out the cafe for fruit, like apples, oranges, bananas, and bring some back to Caitlin's room, so you have them to snack on. Protein bars are helpful, with nuts and oats and fruit and so forth. Maybe Caitlin's nurse or aide could bring you some cottage cheese or something like that (since most ICUs have fridges with that kind of food in them for patients). Try to get to the cafe in the morning for some breakfast. When Caitlin is able to eat again, perhaps you could ask for a tray to be brought up for you as well.

    You need to be in good shape for Caitlin's homecoming, so try to step up the nutrition any way that you can. Okay, lecture over. Preaching to the choir ~

    Please give Caitlin a hug from me, Jim, and Jon all the way from Mexican Palm Land! And tell her that we are praying for her rapid and complete recovery.

    Praying for sleep for you and Caitlin tonight. I know it's very difficult to sleep in that setting. But any shut eye you can get will help.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. #26
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    I finally had a chance to look up Mexican palm trees....they are weeds where you live? I can remember when my sister lived in Houston, it was neat to see the palm trees in people's yards since we don't have them here in WI. I think of palm trees when I think of CA! :)

    I finally got some sleep, Caitlin not so much. Too many in/out for cares but she is sleeping now so I am glad for that.

    Her pain is not too bad, she has a patient controlled button for the morphine as needed. She can get some every 8 minutes through that. They are also giving valium and tordol. It is weird to see the IV pumps on the pole...it is like 3 feet wide with all those different things getting pushed in, lol!

    Her SATS have been good, her temp has gone up & down a bit but she is typically low (97ish) so I don't worry about that. She was 100 this morning but we had a heating pad on her leg and I think that pushed it up a bit. Plus with all the anesthesia wearing off her body is just trying to adjust.

    Her leg is bothering her more than the back incision. She was supposed to get botox in the right hams and both hips during the surgery, but something got screwed up and the doctor who was going to do that didn't get paged before they took her out of the OR so we have to wait until Monday to get that done. Her right leg is super tight! The heating pad is helping and we also have given valium to ease the spasms. She now will get the valium every 6 hrs to pre-emptively keep the spasms at bay. She also HATES the breathing treatments, it is just a round of albuterol and then this other machine that pushes/pulls using air to force mucus up and out. The machine is loud and they have to put a mask over nose/mouth and that makes her ANGRY! She just gets really worked up over it so then her heartrate goes really high (160s) and of course the machines start alarming then. This is every 6 hours so hopefully she is better about it today after getting some rest.

    I am doing good....just ate breakfast. :) I brought a whole bag of groceries along with me! Apples and a box of cereal to eat at breakfast. Cliff bars for snacks. Some Campbell's microwave soups for lunches if I'm not able to get out of the room for those. And some snacks for stress eating, lol! :) Also some nuts for a healthier snack option. Trying not to eat to poorly while I am here. I always remember the time she had a shunt infection and we were here for 3 weeks and I put on 20 lbs, yes 20!, during the 3 week stay. I figure if I eat my usual cereal & apple in the room and not a purchased meal that will help keep me on track. Also with bringing my own snacks I can better avoid the rich desserts they offer in the cafes. I don't need those extra calories while just sitting around all day. I did get 7000 steps somehow yesterday though! Yes, got the fitbit on....I try to take the stairs when I can to help my total but in the new tower, the stairs are locked/alarmed. Security is way tighter now than years ago when I could walk all around at night and no one said a word to me. I even would walk through the underground tunnels to the adult hospital and go up and down their stairs! LOL!

    Thank you for the healing thoughts! I will update when I know more! :)

    Lisa O.0801150720.jpg


    Day 2, Evening update: Here I am in the elevator moving over to Caitlin's regular room....yay! That is a good thing...a little more peaceful...better for resting & recovering! The other picture is the stairwell in Froedtert Hospital (adult hospital). They have underground tunnels that connect Children's to Froedtert so I walked over there and ate supper in their dining room (much better food there, IMO!). After I ate, I huffed & puffed up the entire stairwell (about 6-7 floors) and then went back down to the lower lever and then walked back thru the tunnels to children's and took the elevator back up to the 10th floor where the new room is. Unfortuantely the stairwells at Children's are security locked...you can get in them but only can get out to the outside. At least I can get some exercise! Before they remodeled, I used to be able to walk stairwells here too, but oh well!

    So anyway, Caitlin moved to her new room this afternoon. Got quite a few tubes out which she didn't appreciate due to her sensitivity to tape. We had some more rest/nap and now she is taking her meds orally (yay!). She has eaten some crackers and some ice cream and it is staying down (another yay!). She also has a pop tart waiting but we're making sure the oral pain meds & the Depakote sprinkles stay down first before we try that.

    I also brought her wheelchair to her room (it was in my van trunk) in case they want to try sitting her tomorrow or Monday. Not sure how soon they will try that. She is awake right now and watching another Pokémon dvd. I am looking forward to Monday when she will get the botox in her right leg. That is really causing her some pain with it being so tight. We do have a heating pad on it which is helping a little bit. The muscles keep spasming still. I can't imagine how bad that must hurt! Looking forward to better sleep tonight! More updates later tomorrow morning....0801151347.jpg0801151654.jpg
    Last edited by andromeda31; 08-01-2015 at 04:18 PM. Reason: adding evening update!
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  8. #27
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Caitlin)))))) ~

    YAY! Busted out of ICU and moved to a regular room! YAY! Caitlin is eating!

    But what a shame that Caitlin is suffering with her leg, because there was a mix up in getting the doc to surgery. Monday can't come soon enough. Is there any kind of positioning you could try, maybe with pillows, which might ease the pain? I'm sure that you've tried everything. Can Caitlin handle a muscle relaxant and would that help?

    What is the set up like in Caitlin's regular room? Do you have space for your stuff and some kind of cot/recliner? What is the nurse/patient ratio?

    Your diet plan sounds quite sensible, and I'm so proud of you for eating well. I know that it is difficult to do that during times of stress (for me it is a loss of appetite, where I take several minutes to chew and swallow a single bite), but it is so important.

    Those stairs look steep! Good for you getting all of that exercise. I've always tried to take the stairs when we're in the hospital to avoid being in a crammed elevator with germs swirling about. It's been three wonderful years since we've been in, but my arthritis has worsened, so I'm not sure that I could do that any longer. Also, I used to park in the lot farthest from the entrance to get in extra walking. When it became difficult to find a space, I decided to go with valet parking at the entrance, which was actually less than the lot fee! Plus tip, it is the same.

    So, how long do you anticipate Caitlin's stay will be?

    Mexican palms aren't weeds, although they grow like weeds in our barren yard. The seeds are scattered by winds, contained in bird droppings (and we have lots of birds with Michael's waterfall/pond), or deposited by gardeners when mowing. Our gardener removed about 3 dozen sprouts.

    Palm trees, especially Mexican Palm trees, are abundant in California, so your image is accurate. But they are messy. They drop black seeds everywhere, and their fronds die off quickly, which requires frequent trimming. Unfortunately in our area, the trees aren't trimmed. The dry, dead fronds are hazardous, when they become torches during a wildfire, of which we have many occurring right now up and down the state.

    Sending lots of healing prayers and positive energy, and prayers for restful sleep (which should be more possible now that you're out of ICU).

    EXTRA ((((((HUGS)))))) ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  9. #28
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    Lisa, Thank you for the updates. I've been following but haven't had time to write. I'm so happy to hear that things are going well. It's good to hear that you're taking care of yourself, I know how hard that can be in the hospital. Having he fit bit is a great idea! I had one but it got left in a pocket and went through the laundry and got ruined.Keeping active is so difficult. How long will you both be in the hospital? Sending healing prayers.
    Mary Grace

  10. #29
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    We've been trying out different pillow arrangements and they got a heating pad to put on it to relax it which helped a little bit. Today was a good day, the PT came and stretched it out, worked good. She also found a knee immobilizer for it to keep it stretched out. The PT also worked on getting C to sit up on the edge of the bed. It was amazing to see how straight and tall she was! She did really good with that. They put fresh sheets and pads on her bed while she sat up so it was good.

    One bad is that her blood count is low so she may end up needing a transfusion. They are going to check again tomorrow and see where the levels are...if lower, it will happen.

    Another good thing is the deep drain came out today! Yay! It was kind of gross to see how long the tube was that was inside of her. This is the first surgery she had where there was drains needed after. There is still a "shallow" drain in yet. There is LOTS of tape on her back. That was unpleasant for her since they had to pull it back to get the drain out. Tomorrow is a full dressing change. Not looking forward to that at all!

    Originally they said to expect 5-7 days for length of stay. Today is day 3 so I am hopeful to maybe go home by Thursday. We 'facetimed' (videophone using the ipod) with the boys today. Gotta love technology! Caitlin liked saying hi to Dad & the brothers!

    The room setup is almost exactly the same as the ICU room, just doesn't have all the equipment taking up space. It is even better in the regular room since the bathroom has a shower/tub too. The ICU room's bath is only a toilet & sink. Had to walk to the parent lounge to shower which isn't a big deal to me but it is just nicer to have it en suite! :) I can't imagine having visitors here though. I have had some friends/family offer to come, but I just tell them it is better to come when we are back at home. To me, the hospital is a place to rest/heal and it is busy enough with providers coming in/out of the room plus not ever knowing when doctor/nurses are coming in. To me, it would be too hard to have visitors here...like taking my attention away from Caitlin and having to socialize. That is why I love having internet access here so much...I can just hop online quickly when we have a free moment. I also have PTSD from back in the bad old days of double rooms here! LOL! It seemed our roommates were always local people who would have the entire extended family all in the room at the same time! Our visitors would have to drive 2 hrs here so I would feel like I had to let them stay longer than a quick visit. I wish I had thought to post something about that on facebook before her surgery since now I feel a bit *itchy telling people to not come. But oh well! I am posting updates on fb twice a day (mostly for our parents/family and neuro friends). I haven't put up any pics of Caitlin though...now that she is older, trying to be considerate, like, I wouldn't want pics of me while sick online. Sometimes I wonder if people just want to gawk?

    We do have a nice view from our window though...we're up high on the 10th floor now. :) 0802150558.jpg

    Lisa O.

    PS, I also asked the doctor to reduce her breathing treatments from every 6 to every 8 hours. She really hates them and uses so much energy fighting it...I think this change will allow her to get a little more rest. So she will get another any minute now, then 11pm and 7am. So I think that will make her night better. Last night she got woken up at 3am for that. :(
    Last edited by andromeda31; 08-02-2015 at 12:38 PM. Reason: forgot!
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  11. #30
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa & Caitlin)))))) ~

    Great news that Caitlin was sitting tall and straight!! I'm very happy that a PT visited and gave her therapy and a knee mobilizer. Sounds like they are on the ball there.

    Do you happen to know Caitlin's hemoglobin number? We've been faced with numerous transfusions for Jon (and for Michael), and the theory among physicians seems to fluctuate with regard to when to transfuse and when not to transfuse. A few years ago, the cut off number was 8.0, then it went to 7.5.

    One thing to consider is why her hemoglobin is low. Is it due to any medication she's taking (for Jon the last time it was the antibiotic he was receiving through IV)? Is it from blood loss during surgery? Is Caitlin receiving a prophylactic blood thinner every day to prevent clots? That is standard practice at our hospital for immobilized patients (adults, of course).

    Jon had a blood transfusion about 4 or so days before he was released from the hospital in 2012. He came home on IV antibiotic, the same one he was receiving in the hospital. His nurse drew his blood and his hemoglobin was low again. We went back to ER. For nothing, because it was finally determined that once he was off of the antibiotic, his blood would recalibrate. And it did.

    The hospitalist also factored in Jon's clinical status. Good vitals. Good color. Not lethargic. Our docs really labor over the decision to transfuse, and I tend to grill them about the need for and the potential dangers of transfusing, as well as not transfusing. For hospital inpatients, blood transfusions are given in ICU or Step Down, not on the regular floor. We're usually in one of those units, so we don't have to move.

    I'm curious why Caitlin is receiving breathing treatments. Her SATS are good, she's not on O2, and I would guess her lungs are clear. Is this a preventative measure? We always requested that the Night RTs check the monitor for SATS and respiration, as well as listen to Jon's lungs, before starting a treatment. Sleep is also crucial to healing, so if a breathing treatment can be skipped during the night, that is best.

    TAPE:

    Ask Caitlin's nurse, or doctor, to bring in some Adhesive Remover Wipes for the dressing change, and for all tape removal. It works like a charm. All hospitals have these, but I always have to ask the nurses to bring them in. Jon wears an adhesive flange for his colostomy, and we use the adhesive remover wipes to un-stick the flange.

    If they don't have any adhesive remover wipes, then you can use alcohol wipes to un-stick the tape. Start at the tape's edge in a corner, and work the wipe/alcohol under that edge, then keep following the removal of the tape with the wipe to loosen it as you go along.

    I'm so glad that you have a shower en suite, and that the accommodations for you are suitable. I could tell you stories about some of the hospital rooms I've been in over the past 45 years ... practically medieval!

    I agree with you about visitors. Just send out a group email and/or post on FB saying what you wished you'd told folks prior to going in to the hospital. Give folks options, like sending an e-card for you to show to Caitlin. Or a short video of them saying "Hi! Love You! Get Well Soon!"

    I'll bet seeing her dad and brothers cheered Caitlin! Technology is wonderful!

    Healing prayers are continuing and positive energy is flowing to you and Caitlin. You're both troopers, and you're doing great!

    And I know you don't want visitors, but if I lived near the hospital, I would sneak in with a smoothie and we'd find a nice place outside, under a tree, and we'd chat for maybe a half hour or 45 mins, then I'd send you back to Caitlin and take off. Like it never happened!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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