Almost to the home stretch...
Thursday morning was rough. I think my brain went from mashed potatoes to just super runny gravy, yummmm... We had to be at the hospital by 6:45am for the first appointment of the day, gastric emptying study. Which in short, you're given radioactive eggs or pancakes, in Rima's case it was eggs. You eat them and then they take an x-ray of your stomach every hour for 3-4 hours to see how long it takes your stomach to digest and empty.
The eggs Rima was given were made from egg-beaters and in a microwave, super five star cuisine were are dealing with here. The radioactive particles were added to the eggs. She was told not to touch the eggs with her fingers so that the particles did not end up on her or others. Cool, maybe she will become a super hero!? She was also give two pieces of toast with jam. For Rima this is quite a bit of food to ingest at 7am. You also have to eat the food fairly quickly. She sucked it up and ate all of it. She then lay down on the "bed" and it moved under the x-ray machine and the first image of her stomach was taken.
We then had to wait for the next image to be taken in an hour. We were lucky and were able to stay in the exam room and did not have to return to the waiting room like many others. Rima made herself at home and took a nap on the "bed". I worked on Tuesdays post, yes we are a day behind. But when your brain turns to gravy, I think it's okay to take a day off. Anyways, I then decided to occupy the rest of my time with snapchat. Rima, might have gotten a bit annoyed by me morphing her face twenty different ways. If you can't annoy your siblings in an exam room then what's the point?!?
At the hour mark she had a second image taken. Then we waited for another hour and a third image was taken. Luckily Rima's stomach empties fairly quickly (for the moment) so we got to leave after the third image and didn't have to wait another hour for a fourth. The second appointment of the day was with an ENT (ears, nose and throat doctor). This was a quick meeting. She basically went over Rima's medical history that applied to her. Nothing concerning stood out to her which we expected. Just inflamed and stuffed sinuses, which we already knew about. She will be getting sinus surgery in May.
The third appointment of the day was with the social worker. Finally we would be able to get answers on what people do for housing for the three months post transplant when you have to live within 30 miles of MNU. The social worker was very nice and answered our none stop questions. In short, they offer "campus" housing in one of the apartment buildings a couple blocks from the hospital, at a "discounted" rate... They have a hold on 10 units that they rent out to post transplant patients. Two bedroom apartments with two twin beds per a bedroom. Full kitchen and a small living room. This building is also for students who attend MNU. She assured us that noise would not be an issue....hmmm....okay. There can be a waiting list for the apartments. When we do get the call for her transplant we would call her immediately after to see what the availability was of renting. Hopefully we wont have to wait on a list. But, she also gave us a couple other options, one was a site that deals with mainly people who travel for business. They rent out fully furnished apartments throughout the city.
Both options would work, since I'm not trying to fully furnish and stock an apartment for just three months and then move again, like I had originally planned to. I'm going to be fully occupied with Rima in the hospital and learning all her drugs and the timetables for them. Who has time to run around looking at apartments?! I'm a big lover of the home and decorating. I want the space that I inhabit to be full of life and beauty. But, in this case I'll compromise on that end for convenience and ease. She also gave us some information on foundations that help out finically at this time, because let's face it, cost of living can rack up if you can't work. Which I will try to work from home somehow, but my main job will be to get Rima to recover as best as possible and making her as comfortable as possible. I really didn't know the full list of responsibilities of what a caregiver was until this evaluation. For anyone who has been one to a transplant patient, I tip my hat off to you!
After this eye opening meeting Rima did some vest therapy and her much needed nebs. The nutritionist came in during this time, two birds one stone! She went over the detailed list of food rules for pre and post transplants. She was able to clarify on some rules we were unsure of. For instance we had been told and read in multiple places that after a transplant you are not allowed to have deli meats. WRONG, you have to microwave them just once to a high temp to kill off any living bacteria, you then can eat it! You can microwave it once in batches if needed and then put back in the fridge and eat on your hearts content. Rima was a happy camper on learning this. She can also have cheese, which was another rule we thought would be enforced, nope. We both adore cheese and meat plates, when I say adore I really mean it. I dream of them and often send her images of fantastic ones I find online. Oh, quick side note, if you are not a CF transplant patient they may not let you have deli meats due to possible high blood pressure. But, because she is young and does not have those issues, she can deli meat away!
After the transplant getting lots of protein is key to having your body heal properly. She will have to have protein included in every meal. Protein smoothies here we come! Potassium is something for the first 1-2 weeks she should avoid or cut down on. So, unfortunately none of these future smoothies will be able to include bananas....(sad face). Other food rules are that we have to be super conscious with being aware of cleaning food properly and making sure food is cooked and stored correctly. Bacteria is a major concern post transplant. Being overly safe will be the norm of life. My personal chef skills will just grow!
After all our appointments we left around 3pm. We left and went back to the Airbnb to decompress. We took a quick pitstop at the park nearby and got a little bit of sun after being inside for the last few days. Rima, decided to be a little monkey and climb some low hanging trees. Happy earth day! Back at the apartment we packed up all our things, slowly. I made dinner and we prepared for the last day of appointments on Friday. We would be driving back to Colorado right after the last appointment which we hoped would not go past 2pm. One more day.....one more day....one more......!