Need of assistance (health advice)..

I'll have to look that up.

 

When was the house built? Any chance that Chinese sheetrock found its way into it?

 

89, hard to say without removing it. Been quoting Holmes depot and Lowes foe materials as a DIY project and its about $500 which is not bad...

 

Well, I haven't really used my i surance in years to be honest, this is the 1st time I've used more coverage than the last 5 years and had my 1st push back from the insurance company and the hospital... First they directed their issue with my wife and it seemed like they wanted to discontinue care. Now I asked her specialist and PCP for their prefered hospital and both said where she is at. It's less than a block away from where they practice. They're worried about my cost, but I have a supplemental insurance and I'm going to pay them regardless, whether I have to sell my soul or not it's besides the point. They offered her to transport her, but I was like that's just going to add more cost, $1,600 to be exact, my kid took 2 rides, which is how I know. So we went back and forth and I'm like she's already here lets not starve her and get the biopsies done... They withheld breakfast 3 days because they wanted to do the biopsies and were waiting... but she has it done, know we wait.

Now its too late for me to change insurance carriers unless I have a qualifying life event, but next year I'm dropping them.... They didn't say anything when my son seized up 2 years ago, or when I had to take him for mental health. Granted, I should've known it's out of network, but what choice do I have when her doctors prefer it over their contracts or whatever the case may be.

 

After 13 long days, my wife is finally home.... She got discharged in the late evening with no real answers for the possible lymphoma diagnosis. I got a large packet of information, with a list of follow up appointments I've made. She did have an infection in her tract and an infection in her kidneys that shut her secretion system down. We're not out of the woods just yet, she still suffers from shortness of breath and dizziness. I did get a list of stuff that was worked on, including a possible B+ lymphoma diagnosis, which I've done some research on and appears consistent with some of her symptoms. She rather it be Covid than that though. The fact that no doctor has talked to us about it makes us feel like it's a checklist that was done to come to that conclusion. Last thing the attending physician said was they had just received the results but didn't go into detail even though we insisted. Did note her appetite increased over the last day but gets full pretty fast.

I did get a call from the insurance yesterday evening as they are standing up a personal care team for her. More information came from it including the out of network cost proposals, California medical laws and what was to come to include follow up appointments and care. I did get some major relief here, as I'm expecting a huge bill for the extended stay. At this point I don't really care on costs, just want her out of the woods.

 

Glad to see some answers trickling in for you and the ball is starting to roll. Hoping for the best. Keep us posted.

how’s your son holding up?

Hope you all have a good weekend

 

His sleep cycle is back to being erratic, we have to increase his night meds so that he can knock out, the drawback is he is very resistant to any type sedative. I took him to the ER a few years back and the nurse asked me about giving him a sedative, and I informed him that it had to be pretty strong, so the nurse started mocking me because the regular dosage was good enough for any grown adult. Well, the fun stopped when he came back 10 minutes later and this kid was sitting up like the Undertaker, he couldn't believe it, especially since we had to transport him to the CT Scan area, so he got a second dosage before he was completely down. My kid gave the technician exactly 5 minutes before he woke up and started fighting us. We had to restrain him a limb at a time to transfer him back to his bed. While sedated they tried to extract some urine via a catheter and this kid restricted his bladder. The nurse was pretty shocked as he had never seen anything like it. All in it took them 10 minutes to get a good sample out of him.

Either way he did regress a little bit, he was already over a jitter toy we had for him. He would usually toss it aside or ignore it all together. In this case we got him a 12pack of Mickey Mouse plushies a long time ago and hid them in different places just in case we lost 1. Welp, he found 1 and he has been retaining it, even to sleep. I know he will eventually grow out of it again, I just want him to go back to the 8-10 hour a night sleep cycle. I'm sure it'll be a year before he does though. Overall he is good though.

 

Glad to hear it’s not rocking his boat too much

Have a great rest of your day ahead

 

Thanks for that. I'm super glad too. I really appreciate all the well wishes.

 

Updating........ It's official... She has B+ lymphoma. It's been an incredibly difficult week for us. My wife was admitted once again to the hospital, this time was the hospital across town. I'm not really sure why I didn't do this sooner. She got her own room and everything, even the nurses were nicer. Either way we got the news, she resisted to being admitted, because it was our son's birthday the next day. With a great deal of pain in my heart, I had to convince her to go. The Oncologist called ahead of time, but she still waited a few hours to be admitted. She has now been discharged from the hospital and has been transferred to another hospital over an hour away. Honestly, I'm having a hard time dealing with everything. Doctor stated he felt comfortable starting treatment in a hospital setting, due to the fact that she is getting dehydrated and can't pee. I know her power comes from seeing her kids and being so far away will add strain to whatever she is going through. I'm trying to remain calm, for them, but I'm struggling to keep myself together. I got respite for my oldest and I'm tag teaming with my youngest to care for him while I work. My thought process is that if she has to go there on a monthly basis I will probably need to invest in a minivan so that she can lay down and have the space she needs to travel.

 

While I hate the news, I am glad you now know what she's dealing with. As for what you are going through, just focus on one moment, even one second at a time. What you have on your plate is so overwhelming anyone would struggle greatly otherwise. You're a good man taking care of your family and you'll find the strength to carry through. We look for your posts so we can hold you and the family in prayer as well as appreciate your amazing efforts for your wife and kids.

 

Make sure she has a good nurse case manager to manage all the specialty consults, procedures, meds, etc. so nothing slips through the cracks. Believe me the various healthcare systems and INSCOs don’t talk to one another like Obama envisioned. Also ask the case manager about any family support options like FMLA and respite care.

 

Thank you for that. Tbh It's been draining. I just made 3 phone calls from work, and it feels like I'm being squeezed tightly from all sides. She's getting a new case manager reassigned to her specific needs, so I will be passing everything through the new case manager. I've got my notebook packed with notes and hella questions. I keep asking but no one seems to know the answer to anything. I know and understand that all this is case by case basis and there is not 1 specific answer to any specific question, and everything is fluid. Emotionally I'm hanging by a thread depending on my answers today we will be on the road to see her. She is getting more testing done, but it seems like a legit place where the only negative comments are from family members who couldn't get in unfortunately. I feel blessed in a way that she will get specialized care in one of the best places available to her. I am filling FMLA paperwork and not sure about respite services for her, but I do have them down for my oldest, I am establishing a long-term care plan for him, since I'm unsure when my wife will be back home, or if she will ever be in any condition to watch over her son. If she will require trips to this hospital for her specific care, then I will need to invest in a minivan or an SUV.... I was looking at the Sequoia previously, but it's starting to look like it will need to be a Sienna

 

I got to visit my wife this weekend and had to leave early because she had an emergency procedure done. Well, she can officially pee... And she's going buckets at a time, she can now officially be discharged from the hospital, the attending doc said by Friday.

Additionally we're waiting on a second opinion biopsy, from the hospital. I guess they don't want to wait for the paperwork from over the mountain, yes I did inform them but they did theirs anyway, we should get results by Friday and a new treatment plan based on this info.

Who would of thought that a 3 hour drive would be so grueling. It was a total of 6 hours for both days, and I was dead. I got 18.5mpg on a round trip, not even half a tank.... I've done longer rides and never felt this taxing on the body, maybe it was the stress... Even my oldest pretty much died on the trip. I had to literally change him into his sleep gear...

 

I'm vaguely updating this. I want to thank everyone for the well wishes and prayers. There is a lot going on here but will wait until everything is cleared through and I'll give a more thorough update. Wife is doing well; she is still going under treatment for lymphoma. We did get a 2nd opinion, not really by choice, but because she was transferred to a superior facility for her specific case and wanted their own diagnosis. She is progressing in a positive direction and continues to trend in that direction up to this point and time, but the travel is taxing for all 7 of us.... Her, our kids, the 2 cats, the truck and myself.

For the people that advised me to have a notebook, thank you very much for this, because the miscommunication has been extensive and receiving care between 2 different facilities just multiplies everything, because you have to call A location to tell B location what they need to do, while standing at B location. The B location is like a franchise per A location's treating physician, and they won't do anything unless otherwise directed, which in turn information falls through the cracks consistently. The positive relationship with physicians and care team got us informed over the line of business and inner workings among these facilities.

Got day care for my big kid, but the hours are not what I asked, but I was advised that while they get a new person in, I'll just have to deal with this person for a little bit, then they can tag team for the hours allotted. The other respite girl turned out to be a straight psycho, talking about she wanted to marry my kid and that she loved him after the first session. I'm building space between her and the fam since, she blindsided me with I asked people and I know where you work at, as a good man I denied that it was my job site and will have to park among the sea of vehicles as to not stick out.... At that time, I was like, nah bruh I got a stalker, thank God for that daycare lady that got approved, but that helps me build the space I need. There's more stuff going on, but I'll let stuff cleared through first.

 

Jesus man, just came upon this thread. So sorry for what you and your fam is going through. This sorta thing can't help but remind me to be grateful for the blessing of good health for me and mine, right? I wish nothing but good things in the upcoming days/weeks/months ahead for y'all. You're in my thoughts

 

Thanks for sending the update I was just thinking of you this week and hoping you were getting some answers and the much needed help. I will continue to keep you and your entire family in my thoughts.

 

Yes, she was relatively healthy until she wasn't.. Came out of the blue sky. If everything goes right, we're in the final phases at this time. Just gotta let the body do it's thing and hope it doesn't come back with a vengeance.

I got a lot of answers and been keeping along the path, Thank you for your prayers..

 

Quick update here... Wife entered remission as per the Oncologist. She didn't appear to take any ill effect from the treatment, well most was controlled at the hospital itself. She appears to be trending positive, and everything is mostly clear. She has entered into quarterly checks, so far so good. Thanks again for all the prayers and advice.

 

This is great news! Thank you for sharing, very sorry for all you've had to go through as a family, hopefully coming out on the other side intact!