Recap time, my bad...
HI! We have not forgotten about all of you who keep up with our journey. The last week has been a lot for us, good and bad. So, updating all of you has taken a back seat. I'm sorry, I promise I'll do my best to not let that happen again. We last left you off at Rima and I getting some puppy love post dry run ordeal and going to her checkup. So what's been shaking our bacon since?!
Well, pre dry run our cousin Lina, from LA booked a flight out to visit us for a weekend. The weekend she picked just so happened to be the very one after our thrilling dry run, perfect timing! We needed some serious cheer up and fast. Lina is probably the happiest person I know. Yes, shocking, because we have had many people tell us that we are the happiest people they've met, but next to her we must seem depressed. She's always laughing and smiling and singing. A true ray of sunshine from the Cali coast.
Since the dry run Rima had been running a bit hot. Hot, as in a higher temp than usual. For the last few months she has been running at around 99.1 -99.9 but a couple days after the call she started running at around 100.2 - 100.6. On Friday the doctor said to go to the ER if her fever goes above 100.5. We didn't want this to occur, naturally since Lina was in town that weekend. So she kept taking tylenol and hoping her temperate would go down.
Lina flew in Friday late afternoon and we swooped her up from the airport and headed straight for a well deserved cheese plate. Scratch that, the mother of all cheese plates. GYST, is a super cute bar and restaurant in Minneapolis. We had some of the best kombucha we've ever tasted there so much so that Lina treated us to two bottles of it to take home. After the massive cheese plate, we went to get actual dinner at the French Meadow Bakery, another favorite in the city. It was so nice not being the only person at the table taking big bites of food. Rima usually just nibbles on things (not her fault) but it was refreshing having a partner in food crime.
Saturday we planned to explore Stillwater, which is a town on the Saint Croix River right on the border of Minnesota and Wisconsin. It's known for it's picturesque downtown, river views, and antiques. That morning Rima was not feeling so hot because she was hot. Her fever was hitting right under 100.5. We contemplated going to the ER but she wanted to at least get to enjoy the day with Lina. She sucked it up and we made it to our destination. We checked out a lookout point and then grabbed some food on the river. Lina had suggested some art therapy the day before. As it so happened there was a ceramics studio where you could paint pottery, how fitting! So the three of us rolled up our sleeves and let the creativity wash over us. I painted some mountains on a mug, Rima painted lungs on a vase, and Lina painted hearts and lungs on a Hamsa.
Rima was starting to fade so we wrapped up and headed back to our house early evening. That night we stayed at home and watched Finding Dory. We thought we would be going to the ER that night but since her temp did not go back up Rima wanted to wait till Sunday and get one last night in her own bed and room. Sunday we went to Brunch at Wise Acre Eatery and got to sit outside in the sun since it was so nice out! We then took Lina around Lake Calhoun before we dropped her off at the airport.
On the way home Rima decided it was time to head to the ER. So, when we got home she packed up her stuff and got ready to go to the hospital. We got to the ER around 9pm. We waited in the ER for about 3 hours. Finally, the doctors had decided she would need to be admitted, we had told everyone we spoke to upon arrival she would need to be admitted, but of course they had to make us wait. She got to the 7th floor right around midnight. I helped her get settled, I made her bed (we bring her own bedding and blankets) it makes hospital stays a little more bearable. I then drove home and prepared myself mentally for the hospital life for the next week or two.
Rima has been in the hospital for a week since Sunday the 6th and now we don't think she will be able to go home till at least the 18th and that's if everything goes her way. Meaning, her fevers need to stop which they have been staying between 99.2 - 101.3. Her PFT's need to improve. Her last PFT's were on Tuesday and they were 16 FEV1, which is low for her, actually she's never been at 16, yikes! She has been coughing up blood most of the week which isn't too abnormal for her, but still they find this concerning. She also has been very sleepy but this could also be in part because getting solid sleep in a hospital is extremely difficult. All the staff going in and out of the room at all hours, beeping of machines, smaller beds, noise in the hallways. Not conducive to a good nights rest, which is what is most needed for your body to repair and heal it self.
One of Rima's biggest issues with her stay here is the Vest. The U of M invented the vest, which is the machine that shakes CF patients so it loosens up the mucus in their lungs to help them breath better. In all honesty Rima's lungs are past the point of help. She needs new ones, unless there is unicorn blood around that magically heals, no amount of shaking is going to change what's going on. But, the staff here seems to think that. Now, I'm not a doctor or a medical professional but I'm smart enough to know what is possible and what's not. Doing the vest four times a day is not going to suddenly bring her FEV1 up to 24% or even 20%. I'm sure it works for people who have been doing it four times a day for years and are not already on the transplant list, we are not in that category. But, to appease this demand Rima has been doing the vest that many times. She has PFTs on Tuesday and I doubt they will go up much. Sometimes I think people just need to accept the hard facts, your vest invention is no good here...or at least four times a day, thank you sir and good bye.
Rima and I also realized how spoiled she was in Denver at Saint Joseph's hospital. We've tried to click our heels and go home but it has not been working. The rooms here are lacking in space and substance. The sinks are outside of the bathrooms, which is totally strange, also wouldn't that lead to germs being spread more. For instance, you go to the bathroom and then have to touch the door handle to get out to wash your hands, spreading icky germs on they way. No fridges in the room. For CF patients or any long term stays, having a mini fridge is key to being locked up for long periods of time. The rooms don't come standard with them and we had to bug countless hospital staff for over three days. She Finally got one when she was moved to a larger room. Her original room was so small that having more that three people in at one time was tight.
The staff here is nice, but for sure they are understaffed and over worked. Rima's IV schedule has been totally off. By off, I mean super inconsistent because of meds being sent up by the pharmacy are late by at least thirty minutes to an hour. Some meds have even been messed up. Rima said this happens at times no matter where you are but this has been happening almost everyday... I mean it should not take 20 minutes for her to get Tylenol when she needs it, right!?! I'm not impressed and neither is she. We are not in Colorado anymore... This is also a much larger hospital so that might have something to do with it. Regardless, I'm a guard dog and if she's not getting the type of care I think she deserves I'm going to bite, and hard.
The food here is pretty awful. I've been picking up food and bringing it to Rima and when she got a fridge finally, I cooked her some homemade food. Mac and cheese, ricotta pesto chicken, brussel sprouts, and bean salad. Now we just need her stomach to want more than four bites and we might be in business. The staff even agree with us that the cafeteria here sucks balls. If you come to the U of M and need to eat, yelp around the area or do pick up. It will save you the heartache your stomach will feel.
Since being admitted last week I've been driving to and from the hospital daily. I finally spent the night Saturday on a cot and I'm not doing that again until the transplant. Holy shit that was worse than camping and I love camping. They have cots but they are hard and boney. I need to get padding for next time. I feel like the gift shops should sell hospital stay survival kits for visits. The kit should consist of; ear plugs, eye mask, melatonin, and foam padding to lay on. There might be a market here...and maybe they should include a nip of some kind, like whiskey, just a nip though.
Rima got to escape into the great outdoors a few times. Not for a long time because of her IV schedule kept getting fudged up, but enough to hear the birds chirp and see some wild turkeys. The hospital is right next to the Mississippi River, so we have been walking along the side of it. I push her in a wheelchair aka workout for me and she tells me where to push. The key to any great partnership, someones points and someone pushes, guess who pushes in this partnership.
Currently we're crossing our fingers and toes that her Tuesday PFT's go up from 16% and that the doctors at least start getting use to the idea of Rima going home on Friday. Apparently there is the possibility of them keeping her in the hospital till she gets the call for the transplant and that could mean days to months. Both of us are so not for this idea and think it's a sick joke. I think our mental state will start to diminish if that becomes a possibility. I'll be sending up SOS signals from over here, so if any of you see it, you know it's time to rent a helicopter and save the two of us from the clinker.