Line infection Heart vegetation back in hospital again 

So, we are back in the hospital again. We kept getting Central line infections, and it was the same bacteria over and over again every 3 to 5 months, there would be another one. Well, came in this past Wednesday and found out that we had vegetation on the heart And we had another bloodstream infection. We got the line we had removed and a double lumen pick line, put in in its place until the blood cultures came back clear. Yesterday, we had the vegetation removed in the Cath Lab, and now in the cardiac ICU, where they are closely monitoring, vitals and things like that. Might have to get a blood transfusion, not sure yet, because our hemoglobin is seven. Will try to give more updates as we know more.

Ray 

Out of the hospital again

Just got out of the hospital because we had to get our gallbladder removed because the Tpn was causing issues with it which was almost causing our liver to fail. We had to get a stent in the main pancreatic duct and the main bile duct because the main bile duct had stenosis, which means it was narrowing, and if they had not put the stent in, we could’ve gotten Collin Gytis, which could’ve killed us. We are thankful to doctors who know what they are doing. We hope all are OK, and we are trying to make a speedy recovery from gallbladder removal surgery.
Ray.

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Ray

issues with Suboxone

We started taking Suboxone on Tuesday, and we now have swelling in our legs and ankles. We thought it was the fluids or the TPN, but no, it’s the Suboxone. This is frustrating. We are not sure what to do. We are not even sure if the med will continue to be prescribed because our PCP is n’t willing to prescribe it. I’m just at a loss.

Ray

updates from us regarding medical treatments and pain

This is mostly going to be a medical update. We had a doctors appointment on Tuesday where our primary care doctor told us that we obsess too much over our conditions, and that if she had it her way, none of her patients would be on pain medication. My palliative care team was trying to get me on Suboxone for pain. It will be a film that goes on the inside of the cheek and absorbs through the skin. My doctor said that she chose not to go through the continuing education course to be able to prescribe the medication. She said that she was going to look us up on TikTok to see what my other personalities had to say. This made us feel very uncomfortable, and our therapist even told us that it was a Hyppa violation for her to do that without asking our permission. So we left that appointment feeling discouraged and defeated. We got home, and apparently our doctor had written a prescription for an EpiPen which we needed because we did not have one. Also, apparently the palliative care doctor ended up prescribing the Suboxone because the social worker and the nurse practitioner had advocated for us in a meeting with him. This was the first time he had ever prescribed this medication, but the nurse practitioner had given him information on how helpful it would be for our conditions. We took the medication and that night into the next morning. We were dry heaving and felt like we were walking on a boat that was on the sea. We were very very dizzy. We had to reschedule our orthopedics appointment for our AFO braces to 9 August. We are going on 3 August to get our feeding tube changed from the GJ button to just a regular G-tube because we don’t really use the J-tube for much of anything because it doesn’t matter which way we take our meds, they either work or don’t work because they either do or don’t get absorbed properly because of the paralysis in our GI system. There are a lot of things we are learning in Therapy. One of the things we are learning is that I, as Ray, do not have a very big range of emotions that I can feel without dissociating. I was frustrated by the whole situation with the doctor and her saying that if she had it her way, none of her patients would be on pain medication, considering we are in palliative care, but Melissa felt the anger and could express it. Wee told our Tpn doctor about how we felt after taking the dose of Suboxone, and he said that possibly the dose was too high. We are going to message the social worker on Monday and ask her if she can ask the palliative care team if we can cut the film in half. Hopefully we can, because that was not a great feeling at all for any of us. The kids were even asking if the medication is supposed to help us not be in pain, why does it make us feel all icky inside. We hope all are well or as well as can be. Sorry we don’t write a lot, but we try to when we can.

Ray.

disability pride month

Disability pride month means a lot to me as a person who has multiple disabilities and chronic health conditions. I am glad I have the resources. I do that help me cope with my multiple chronic illnesses and help me to live a more fulfilling life. I also love the resources that allow me to be productive in society as much as I can be. Happy disability pride month. Ray.Disability pride month means a lot to me as a person who has multiple disabilities and chronic health conditions. I am glad I have the resources. I do that help me cope with my multiple chronic illnesses and help me to live a more fulfilling life. I also love the resources that allow me to be productive in society as much as I can be. Happy disability pride month.

Ray.Disability pride month means a lot to me as a person who has multiple disabilities and chronic health conditions. I am glad I have the resources. I do that help me cope with my multiple chronic illnesses and help me to live a more fulfilling life. I also love the resources that allow me to be productive in society as much as I can beat.Disability pride month means a lot to me as a person who has multiple disabilities and chronic health conditions. I am glad I have the resources. I do that help me cope with my multiple.

pointless urology appointment

Well, we had our urology appointment today, and it was completely and utterly pointless! I wasted four dollars on transportation to get to this appointment. The nurse practitioner didn’t even know why we were there. We were under the impression that it was to discuss the super pubic catheter. She didn’t even examine us or anything. It was a seven minute appointment. We see the urologist next Thursday to actually discuss the super pubic catheter. What a wasted afternoon that I will never get back.

Ray.

updates from here and the medical saga continues

Hello everyone,

So tomorrow we see urology to discuss getting the surgical catheter placed as of urinary attention. Speaking of urinary retention, the other day we had to go to the ER because our Foley catheter wasn’t draining. We called our normal nurse, but didn’t realize it was her day off. We then called the after hours home health nurse, and the on-call nurse didn’t answer her phone twice. It was 5 AM when we noticed the bag wasn’t draining, and it was almost 7 AM when we finally made the decision to go to the ER, because our water was full, uncomfortable, and painful. They changed the catheter, and all was OK. Yesterday, our regular nurse calls us and says that we need to be patient and that a Foley bag not draining is not considered an emergency. She was also frustrated because she got 30 emails regarding us and that we called her on her day off which we didn’t know. She then was saying that we probably couldn’t have palliative care and their services at the same time which freaked us out, because getting out to go to appointments is really hard because of everything we have going on. Luckily we were able to get that straightened out and we can have both services. My primary care doctor wanted me to get into chronic ongoing physical therapy for the connective tissue disorder, but none of the home health agencies do chronic PT. We can’t go outpatient to physical therapy because of the other barriers mentioned like fatigue, and the fact that we have to try to juggle the catheter bag, the backpack, and our wheelchair.

We have so many appointments coming up. We have urology tomorrow, a telehealth consult with infectious disease on 11 July after being on IV anabiotic’s for the infection that we had, an appointment on the 12th to see primary care because they have to send a note to the orthopedics office for us to get ankle and foot orthotics. We didn’t have an appointment on July 26 to get evaluated for those prosthetics orthotics. Then on August 9, we go to the orthopedic spine specialist to look in the three different deformities of our spine. We found out we have mild sleep apnea with significant hypoxia. Basically our oxygen level dropping significantly when we are sleeping. Not sure when we are supposed to have a sleep study as they didn’t have anything available at my local hospital until February 15 of 2024! Why does everything have to have such long waiting lists? Anyway, that’s the update from here.

We are just trying to get by and keep everything moving smoothly. I’m glad some people inside help me when I get overwhelmed.

Ray.

Might be getting a FO’s

Hey, so we have some good news. We might be getting AFOs or ankle and foot orthotics. We can use them when we do walk to make our ankles more stable and therefore hopefully able to make the rest of the joints up from there is stable as well. We had physical therapy come to our house yesterday, and she’s going to try to see what she can do we are also going to see if I can get ring splints for my fingers to keep the joints from hyperextended. We hope that all are well, or as well as can be. We are thinking of you all, and hoping you are all doing the best you can. In other news, we are still coping with the new people in our system, and we are all trying to figure out how to help them. It is very hard with the kids, and I still don’t know how to tell them that they are safe.

Ray

don’t like hospitals

I hate hospitals. they are not my favorite at all. I wish we didnt need them. we hat that our body is sock. I wish we could just get better at home. I hate that we are on TPN, but Im glad it is an option to give us nutrition. 

Melissa