Time is flying by and Colin's surgery quickly approaches. I know I will have many questions with each new day. Here are two I have right now:
-When we drive home from Hopkins, about a 6 hour drive, should he sit in the back seat to avoid the risk of an airbag going off? If he lays down in the back seat, is there a kind of pillow I should get, or can we just take several regular pillows?
Grab a cup of coffee, this got long, sorry.
We never drove far home from any of his surgeries, the longest was about an hour and from CHOP was just a 1/2 hour and Justin was QUITE glad to be out of the car then. Since you will be driving so long. Have you considerred spending a couple days in Baltimore after he gets out of the hospital? Just in case some of the speed bumps that often happen the first couple days, don't happen when you are driving in the middle of no where? I would ask the doctors what they prefer their patients who travel do when they are released, go right home or spend a couple days in Baltimore.
You definately will have to stop often to get out walk around ect. (I'm wonderring if it MIGHT be more comfortable to drive 1/2 way then spend the night in a hotel (or friends or family somehere between Hopkins and your home) to break up the trip.
Anyway Justin is 6 foot, (I'm sure Colin is his size or taller) and I don't know what kind of car you have, we had a smallish SUV, after his last couple surgeries. There is no way he could have been comfortable laying down in the back seat, he'd have to be curled up on his side and that sounds painful. What worked best for us, is even normally he feels squished (legs and big feet) sitting in the back seat, I'm 5'3, so we normallly ride with me in the back and him in the front, just because everyone fits better. But on the way home from the hospitals and trips back and forth he was most comfy, in the front passenger seat, reclined back. He had a small pillow in the car to keep between the seatbelt and his incision (throw size we make out of fleece, so he has a brand new clean one for each surgery, we also make one to hug in the hospital, incase the hospital doesn't provide them to their heart surgery patients, actually the last few surgeries we bought brand new "uglydolls" to use each surgery because they were the perfect size and Justin just liked them.) Since the seat was laying back, we weren't too concerned about the airbag going off and he could stretch his legs and sleep and the seatbelt wasn't as tight.. We also got some of those sheepskin shoulder belt covers that make the sealbelt fluffy.
-What kinds of shirts should he have for the hospital? Should I try to find button down pjs or will he be able to get regular tees over his head?
Its personal choice and I would ask Colin what he would prefer, but Justin hates to wear the hospital gowns, and as soon as he is up and walking (usually the next day still in CICU) he likes either sweat pants, or gym shorts and during the day, loose fitting button down soft shirts (short sleeve so they have access to his arms/IVs blood pressure reading ect. He MAY or may not be able to but on Tshirts right away, but we usually take a couple bigger ones that are easier to put on. But really with the lines and wires coming off his chest, we find button down works best, because there is easy access to everything and the wires can go thru the spaces beteween the buttons and they are easy to put on. It really helps to have pockets in either the pants or shirt (Justin finds it more comfy in the pants) to put the little monitor in, but some hospitals have little pouches (like disposable fanny packs) for the telemetry monitor.
Speaking of clothes, I don't know what sleeping arrangements you have, but even when you are just sitting in Colins room, for the most part hospitals and ICUs especially are FREEZING, so take a hoodie or something like that for yourself. When Justin had surgeries in the summer, I would need the hoodie inside and take it off when I'd go outside for some air or to get Justin some food from the carts. (I often joked I felt like a lizzard on a rock trying to get some heat in my body) Which reminds me of another thing, most hospital blankets are pretty useless as far as keeping you warm or feeling nice. We take Justin (and me since I sleep in his room) a NEW fleece blanket, to use in the hospital (funny we make sure to always get brand new things and Justin is the one that got a bad infection, well not funny- haha) Since Colin will probably want a blanket in the car ride anyway, you could bring that to his room after he gets settled in after surgery. Now alot of these things are probably over doing it, but we have alot of experience and like to make things as nice as possible for Justin, so he also HATES hospital pillows they usually are plastic type cover because they keep clean easier, but not the most pleasent, so we always take him a pillow. IF you take one, take a couple extra pillow cases, so you can change them often, especially if like most people Colin sweats alot the first few days. Make sure they are not white so they don't get taken away with the hospital laundry. Not that you asked, but just popped in my mind, we usually get some kind of slipper that is an outdoor shoe, like a moccosin, that you can just slip in and out of easily with out bending, tieing ect. They usually have good soles so no slipping and then you can just wear them home instead of putting on sneaks or whatever he normally wears.
-How should I update people back home? Should I begin a Caring Bridge site?
I think EVERYONE having surgery or even going to the hospital for a couple days, should have a caringbridge or site like it. It is SOOO much easier on you. When Justin had his first surgeries we didn't even have cell phones and the phone was always waking him, with people meaning well calling to see how things are. Cells phones were an improvement (even if you have to leave the unit to use them, it depends on the hospital) but I still had to spend WAY too much time I could be helping Justin, calling everyone with updates (and you always forgot someone ) and the phone in his room was still ringing all the time, usually when he (or I) was napping.
His last few surgeries we had his caringbridge page, it was SOOO much better. Before he went in I emailed everyone a link to his page and told them I would be updating it often thru out the surgery and thru out his stay (and first couple weeks) and they could just check there (the newer version will send an email each time you update if the person wants to get them, so they don't have to keep checking to see if there is an update.) and mentioned there was a guestbook and we really enjoyed reading and rereading the messages people left us. We also had small cards that we typed "Justin's updates" and the URL on, so people who we didn't have their email address but asked about Justin (co-workers ect) we could just give the card (since it was a little tough trying to say and have them remember
www.caringbridge.org/nj/justinw We even have some older relatives who don't use computer (i know shocks me too) and I would ask someone else to call them with the new updates, so I didn't HAVE to call anyone, and it freed up my time to walk with Justin or just help him with small things. Best of all the phone in his room rarely rang. Most hospitals (I believe) have computers in the family room for the patient /families to use that are great for during the surgery, but if you have one, it is really nice to have a laptop so you (and Colin) can do updates right from his room. I think most hospitals have WIFI all over now, but you can find out, or just take some cords incase you need to plug the laptop in since some have the little computer jacks (forget what they are called) in each room if they don't have wifi
Something I didn't think of before surgery, but really appreciated after, that was another good thing about the site, is Hospital stays tend to become a big blurr in your mind, especially if you have a couple, and it is hard to remember exactly what happend when ect. With the caringbridge site we can go back and reread if we have to find something out, and it is nice to be able to, even now, give the link so people can read, what Justin's surgeries were like, when he could do certain things ect just to get an idea of the process
Speaking of Caringbridge and looking things up, back to the traveling. I knew Justin went to Cooperstown shortly after his last surgery ,it was his big goal he worked hard so he could make it. That is a little shorter than the trip you have (we live outside philly in NJ) but I couldn't remember when, so I just checked his page. Now remember, this was the surgery where he had surgery June 19th, was home 3 days later and was readmitted and had a big surgery for an infection on the 29th that involved moving his pec muscle to wrap around his sternum. He was released 7/7 so was a little more wiped out than after the more "normal" surgery. They drove to Cooperstown on the 7/27 For Cal's Induction that was 1 month to the day of his 2nd surgery, 7/29. They drove about 3 1/2 hours to my parents in the Poconos, spent the night and drove the rest of the way (another 1 1/2 -2 hours) on the 28th. This was about 4 weeks after surgery, 3 weeks after discharge and they said he COULD have made the whole trip, but Justin was pretty happy to be out of the car at my parents and if they did the whole way, he would have been pretty sore and wiped out. Now of course as with everything, each person and each recovery for that person is different, but Justin was 19 and in good shape going into surgery.
Thanks all! Barb
IF you have any questions, feel free to pm or email me sorry this is so hard to read, I stink at computer stuff, let me see if I can make it better
There's a pocket on the gown for the monitor and the snaps on the shoulders make for easy access for whatever it is they need to do.
