While most HLHS Families would be old pros by the time they are admitted for the Fontan, this is my first rodeo. Gabe moved into our house as a foster baby six weeks after his second heart surgery. This has lead to a lot of, "could you repeat that, I have no idea what you're talking about," moments with his surgical team.
It's also lead to a minor freak out over what exactly I need to pack for our hospital stay.
I've been told that, if all goes exactly as planned, we should plan to be at Egleston for 5-14 day. That's a big window. While Andrew will be going back to work a few days after surgery, I'm not planning to leave the hospital until Gabe can come with me.
I had a lot of questions and was honestly starting to panic over what to bring.
I'm going to credit that to misplaced anxiety and not to being overly concerned with pampering myself.
Ahem.
Once I calmed myself down a little, I did what any intelligent person would do: asked my Facebook Friends for help.
Within an hour I had answers from 40 different friends who had been through an extended hospital stay. They all answered with pretty similar answers, so I'm passing that info along to any of you that may be curious.
I'm approaching this the way I approach packing for a vacation.
Not a vacation to a spa where I will be relaxing and being refreshed, but a vacation where I will be camping in the wilderness. Y'all, I hate camping. Which is very close to how I feel about having to stay at the hospital. I know that I will be uncomfortable, won't sleep, and will cry a lot. Pretty much how I spend my time camping.
So here's a quick run down of what we are bringing for our stay at Chateau Egelston.
I was told it would be pretty chilly in ICU and dry throughout the hospital, thus the socks and lotion. The Aleve is to avoid $8 charges for the headaches that I'm sure will come and face wipes to keep me from breaking out like a 13 year old. I have 3 times as many antibacterial wipes, but figured 3 was enough. If you come visit, just be prepared for me to wipe you down. No infections allowed.
Everyone echoed the need to bring my own towel and any necessary toiletries. These were the ones I wanted to be sure to not forget. That tiny bottle of body wash is in hopes that we aren't there long enough to run out. Still a little leary of how showering will work while I'm there so I may be a total grease ball by the time we come home.
Gabe's chest will be totally opened during surgery, breast plate cracked and all. The one thing the nurses said I had to bring was open front PJs. Which were much harder to find then I thought. I found these at Walmart. They are insanely soft and will make it easy for him to be comfy (well, as comfy as possible) with his chest tubes and wires.
Activities that Gabe can do while confined to the bed. I'm not sure when he will be able to get up out of the bed, but my son is active so anything more then a couple days will be torture for him. I tried to find things I thought he would like. Art, lacing cards, 8 billion stickers with blank paper to stick them on.
Those were the main things recommended.
I'm also bringing my own pillow, a small fan, and all our oodles of electronics. Books, magazines, iPad, laptop, Leapster. Chargers for everything.
Everyone recommended comfy clothes. Lucky for me, I live in leggings, tank tops, and cardigans. So I packed 5 days worth of those. Andrew will be coming to visit so he can restock me if I need more.
I feel a bit better now that we have these things ready to go.
Of course, I still have to pack for Josie to spend 3 nights at a friends's house and 7 more in fridgid Minnesota.
Those of you who have gone through the Fontan or any other extended hospital stay, I'd love to hear what you recommend we bring! Hurry, while I still have time to hit up Target!
10 comments:
Stuffed animals for Gabe Having something to cuddle was a lifesaver for my 5 year old daughter when she had to spend an unexpected night in the hospital after a tonsillectomy.(Nothing went wrong, it just got started late du to a massive motorcycle accident) Will there be a way for Josie to communicate with Gabe, you and Andrew(Skype, Facetime, phone calls) I remember when my little brother who has Down Syndrome had heart surgery when I was 7 the only contact I had was daily timed phone calls from a pay phone.(of course that was 25 years ago) Hugs and prayers to your family
Being that it is a childrens hospital- I bet they have a volunteer group that comes around with books or activities for the kids as well. Your beautiful family is in my prayers
I have not not gone through this but wanted to say I'll be thinking of you guys, praying for you guys and wishing for a speedy recovery and shortened hospital stay.
Does the hospital have a Ronald McDonald house near by? If so use it when you can they are amazing and so kind!!!
I haven't experienced what you are going through and packing for. I just wanted to say I'll be thinking of you guys, praying for your guys and wishing for a speedy recovery and hospital stay.
If you have a Ronald McDonald house near the hospital use it! They are amazing, kind and great for families with kids in the hospital for extended stays.
I would recommend packing some snacks for yourself and Gabe (granola bars, pretzels, crackers, fruit snacks, etc.). When my daughter was in the NICU, I spent way too much on crap snacks from the hospital cafeteria, and sometimes I couldn't go back and forth when I was hungry because I didn't want to miss the doctor's rounds.
I have been reading your blog forever but never commented. I feel a certain kindred spirit with you since I live in MN and my mom lives in AZ! I saw a beautiful article in the local MN paper about your brother that I recognized as your brother via your blog...small world! Anyhow...I stayed with my sister-in-law during a long hospital stay and I recommend bringing flip flops for the shower. That might sound weird, it is a hospital, and is probably crazy clean, but it still kind of grossed me out so I owe flip flops when I showered. And then put on slippers when I got out. Silly thought, but thought you should know :)
The first thing that comes to my mind tonight is pictures. I once had a CICU nurse ask me if I could put up a picture of Lauren so that the nurses could see and remember how she looked when she wasn't critically ill. The first thing I put up in her hospital room post-transplant was a collage poster. (You may still have time to make something similar on Snapfish or Shutterfly.) Gabe might also like seeing pictures of his sister while she's away.
Does he have a small backpack? At our hospital, the kids could walk around the floor because they all had wireless telemetry devices to monitor their hearts. The transmitters were about the size of a Walkman. Lauren wore hers in a small messenger style purse, but lots of the little kids wore them in small backpacks so they'd have both hands free.
You're all in my prayers!
I've been following your blog for months now, but have just now gotten around to commenting. First, I just wanted to let you know that Gabe and your entire family will be in my thoughts and prayers. I hope nothing but the best for you! My newborn son and I were just discharged from the hospital after an emergency c-section and neonatal intensive care stay, so we have some experience in the hospital arena; I echo the idea about bringing snacks and bottled beverages along in case you're hungry. The cafeteria is not only expensive, it's not always close by and you may not want to leave Gabe to go during meal hours. Also, have cash and rolled coins on hand for unexpected events, or vending machines. We were told during our stay that hospital room service could bring my husband a guest meal tray when he roomed in, but they required cash upon delivery and in the age of debit cards we didn't have cash with us. It's simple things like that which will make your stay so much easier!
It's been nearly 14 years since we've had an extended stay in the hospital. My daughter was in the hospital for 21 days after her Fontan.
Back then we didn't have DVDs but we did bring lots of VHS. If I were going to be in now, it would dvd. Tigger and Winnie-the-Pooh were treasured companions. (I am assuming that the staff can get you a DVD player. Check with Child Life.)
Books for us were a must. Make use of the services provided by Child life. When S was able they even provided a wagon for her to ride in and we were able to go the cafeteria and to the play room.
If it's going to be closer to 14 days arrange a break for yourself. LEAVE the hospital. I know that sounds impossible to do but it will recharge you so you can you really be there for Gabe.
You have my thoughts and prayers.
Continuing to cover your family in prayer! You can do this!! I would also encourage you to seek out the child life specialist once Gabe is feeling up to a little activity- they are wonderful at keeping kids distracted from pain and entertained when bored. Hugs to you all!
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