This is for my own documentation, to help those of you that are newly diagnosed, and for those that are curious about what we are going through… let me tell you, it’s great to be home, but there is a lot of work to do.
**HOSPITAL DISCHARGE** EVERY ONES DISCHARGE ORDERS are DIFFERENT- These are mine and ideas to help you get organized. Don’t do any silly.
Days before we were discharged it made Jonathan and I feel so much better for him to go ahead and change the dressing in front of the nurse. It’s really not that hard, and it is only once a week. I also requested to have the hypoallergenic dressings before I left the hospital. In my admissions blog I will write soon, and hopefully the packet Emory WILL have out to patients upon arrival, will mention that you can request the hypoallergenic dressing when your pic is put in, if you know that you have sensitive skin.
WHEN AM I LEAVING: Because you don’t know what day you will be leaving due to your counts, it was best for me to set up rides for a two day period. It was better for us for me to find someone, besides Jonathan, so we didn’t have to find a sitter all day. So as soon as I found out about my discharge… mainly because I asked the nurse about my counts at 6:30 and know what the counts needed to be, I started setting up the day at 8am.
I met with the discharge planner, a wonderful lady, and she let me know what all had to occur. I requested a reasonable discharge for no later than 3 pm because hello, Atlanta traffic is horrible. I politely let them know that if I was not out before Atlanta traffic, I was calling off my ride until traffic was over and they could then have this beautiful room that someone needed. I asked her to make my 2 day follow up appointment for the clinic so I could have that today. I call it a heads of states meeting because we are going to map out the big plan. I wanted my aunt, mom, and husband there. I also went ahead and asked her if she could have my prescriptions for medical supplies, dressing kits and hefren for the pic line, sent down to the Emory pharmacy and I would go ahead and get that during the day. My ride and I got lunch from downstairs and I got the medical supplies. I requested that she fax my prescriptions to my home pharmacy because it is a huge order and I knew it would take a while. Now, any pain medications cannot be faxed in, so that one has to be taken in with the original prescription. Many insurance companies make you use a specialty pharmacy for oral chemo. The discharge person is usually taking care of pre authorizing weeks before you leave the hospital, but if any changes have to be made, they are able to overnight the medication to you. In my case, we have to change the dose or the meds due to migraines. Luckily all went well, and we were able to leave by 3:30. FYI, you can call Valet parking from the room and let them know you have a patient and to go ahead and bring the car around. It’s worth the extra money on the day your leave, believe me!
**Pharmacy Trip and needed supplies**
Even thought we had sent the prescriptions hours ahead of time, poor Jonathan was probably at the pharmacy for an hour and a half. Make sure that you have someone to do this for you, once your home; you just need to stay there and rest. If I had it to do over again I would have called the pharmacy myself and explained the situation- cancer, mom, 1st day home, need husband. The pharmacy had to double check everything and did a good job spelling things out for us. For example, one of my meds I can’t take with the calcium. One of them is only M,W,F. Then there are a lot of PRN meds. It is very important to get at least an am/pm mediation dispenser. I could not even imagine trying to figure this out every day. Jonathan and I had a little med party. We put on gloves and put the meds in for the next week. Do yourself a favor; don’t stop your Colace cold turkey. You have been on it for weeks. Trust me. I think it is very important to have someone do this with you and help you do it in case there is a time that you cannot do it yourself. Plus, it is very confusing and I have chemo brain right now and may be on medication that affects my judgment. We separated the PRN meds from the meds that I will take every day. Sometime this week, we are planning on going through the entire medication cabinet we have and getting rid of unneeded medications and even moving it to a higher place to go ahead and baby proof that part of the house. We keep Evalyn’s baby medical supplies separate from ours for the sitters.
As for the medical supplies, I was given a good tip by another person that “press and seal” made by Glade is better than the aqua guard for covering your pic in the shower. It is must easier on your skin. If you can’t stand the “magic mouth wash” they gave you in the hospital. (Swish and swallow), no the bio tech, the same person gave me a recipe that they use at the children’s hospital. You can make a batch of it and store it in the fridge. It is equal parts of sterile water (boil it), Mylanta, and children’s Benadryl. She said that it works just as well and she has not had any sores in her mouth yet. She is on month five.
**UNPACKING** We did the the second day home. One thing at a time, remember you need to rest and play with your children J Well some of you will not have to do anymore extended stays at the hospital, but most with ALL or AML will be returning within 4-6 days of leaving to start the next round of chemo and will have many of these small trips away. It is important to make the process as simple as possible. Jonathan and I started unpacking and listed out things that I would need to take back with me each time, some necessities like my own toilet paper, to some things I want there like my own blanket. Then we packed everything back up and bought two of something’s that would be easy to forget…. Toothbrush, face wash, etc. These things will just stay packed up. I even have hospital slippers that just stay in a plastic bag for that time away. The things I did take out, we have that main list and will go over it again before we leave. Also in the admissions blog I will write soon, I’m going to include my list that you may be interested in looking at. You may not care about a decorative pillow or a fake plant, but it makes me feel better. You will find things that make you feel better and I hope you do!
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| My little med/dressings central |
It made me feel better to have everything organized so that I didn’t have to think about it. I also wrote out what I needed to do when- Meds AM, weigh myself, take temp, drink water: Meds PM, take temp, clean and flush pic line, drink water. Dressing change and med refill day-Sunday. It also helps to document side effects- how often, pain 1-10, etc. Always call about anything new that they don't know about.
There are other little things about the first day home you might relate to. It’s under Nov.23 rd Loving Life and is coming tomorrow.
Shoot me an email at heather.cape@yahoo.com if you have anything you feel that should be added to this that could help someone else.
Welcome home!
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