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Wow has life ever gotten busy. With appointments, blood work, waiting for blood work results to find out if he has more appointments... Life has become a "waiting game".

Right now I'm sick. I'm supposed to be in bed feeling better but I've got too much to do to allow myself just to rest. The end of the month is almost upon us and I'm starting to feel anxious.

Brian's boss said he had a bit of work for him. Yes, I know he got laid off - but his boss said Brian could return to work VERY part time just to help him meet deadlines. So Brian was supposed to do a bit of work for him starting Monday. But Sunday night we got a phone-call informing us that his boss has now ended up in the hospital with his own health issues! So, no work. Which is a good thing - I don't think Brian was quite healthy enough to return to work.

Today we've gotten quite a few phone-calls regarding Brian's health issues. He had his blood work done Monday and it revealed some problems arising. His kidney function and platelet levels remain the same. But his hemoglobin has taken a nosedive and potassium levels are dangerously high. Oh and his cholesterol went really high too. Some of these issues are probably side-effects of the medications he's on, but now he's got a whole new set of symptoms that need treatment. So a shipment is arriving at our house in the next day or two of these treatments (one of which involves Brian giving himself needles!! A nurse will come and teach us what to do) And we're returning to VGH on Thursday to check in with the hematology team there, for the first time since his last PLEX treatment.

Crazy. This "new normal". I want my "old normal" back!

Pray:
- The kids, as I said, have been handling this all quite well. But Mercy is starting to have "Daddy separation anxiety" any time her Daddy has to go anywhere. I know this is a direct result of him being in the hospital. She doesn't talk about how things negatively affect her, but she starts to act out and get really insecure. She needs peace...
- That Brian's hemoglobin goes up, that his potassium level comes down, that the platelets will remain stable, and that the kidneys start functioning better again. And that the edema in his feet starts to go down (permanently, please!). That his blood pressure goes down to 120 or under without needing further medication, and that his cholesterol is controlled. Oh and that I learn how to cook foods that treat all of these issues naturally (it's a science and I'm thinking I need to take a class to learn!!)
- That I can remain healthy and... I guess... sane (?) during all of this! I need to keep my head on straight and it's hard some days. I can't afford to be sick, sad, worried, stressed, tired, etc. and right now I'm all of those things.

Another Appointment

Another Doctor. This time a kidney specialist. Another prescription. Three, actually. One is supposed to take down the swelling in his feet, the other two are to help control his high blood pressure. Another order for blood work. Another explanation of the diagnosis. More new information to process. Another appointment with another clinic. Brian will be having to make appointments to visit the kidney disease clinic to learn how to manage life with damaged kidneys. Another new appointment with another specialist booked. Brian will also be having to do some follow-up with a hematologist. His new kidney specialist doesn't let his patients fall through the cracks.

And now I'm going to go back to another new day, and another to-do list.

Done

I'm so ready to be done with summer. Usually Summer is my favorite season of the year. Summer barbeques, visiting friends, camping, spending large amounts of time outside, swimming or splashing in water, fresh fruit...

But this Summer is different. I've spent way too much time in my car. NO time splashing or playing in water. Barely any barbeques because we have no money for food. The only time we visit with anyone seems to be when I'm trying to distract the kids, or when I'm dropping them off or picking them up so I can deal with Brian's medical stuff. We have, at least, had a LOT of fresh fruit. The kids and I are in fruit heaven! I am shocked at the amount of blueberries we eat in a day. A dear friend of mine has invited us over a few times and we eat their delicious blueberries right off the bush. She sends us home with blueberries and we feast on them for days (usually resulting in a few tummy aches but oh-so-worth it!!)

It's been an adjustment having Brian home with us. We're happy to have him home, of course, but it means constant anxiety for me. I don't like having to be the one keeping tabs on him and making sure he's doing okay. It was much more peaceful to have him taken care of at the hospital (is that horrible?) He looks awful today. His feet are at least twice, if not three times, their size. He winces with every step while trying to pretend it doesn't bother him. So he spends a lot of time sitting with his feet up and that's the way it has to be. Try explaining that to the kids!

I may or may not be going crazy. Lack of sleep, maybe.

I have nothing else of interest to say. Sorry my posts have been sounding discouraged lately - but that's just where I'm at right now! We're in a very tough spot, and I'm trying to figure out how to put the pieces back together and trying to regain some sanity for the sake of my family. I feel pulled in all kinds of directions.

Meet Erin

That's not Erin, that's Brian. Erin is NOT the nurse behind him. This nurse is prepping the machine that, literally, is saving Brian's life.

This is Brian's feet. Or "balloons", as I call them.

This is the machine. Not to be confused with "the machine" from the Princess Bride. This machine doesn't hurt.

This is Erin. Erin is administering Benadryl before starting the PLEX procedure. "It's a LOT", she says.

This is how Brian feels when the Benadryl gets into his system. It makes him want to shake his head, roll his eyes back and forth, and say "Wow man".

This is Brian's blood. See the red tubes? They're not red, they're transparent. Blood is leaving Brian's body and going into the machine.

These are the plasma bags. Plasma is what's left when you remove red blood cells and white blood cells. This machine separates the cells from the plasma, adds new, donated plasma back to the cells and then puts it back into Brian's body.

It takes a lot of tubes to do what this machine does.

This was the part where I started to think about leaving. I don't like seeing blood leave my husband's body, even if it's just going into a machine.

 

This is how I found Brian when I returned a few hours later. The big, "orange-brown" bag in the back? That's Brian's plasma. It will be incinerated. It does no good to anybody.

 

This is Brian driving us home after picking the kids up, hours later. He's not allowed to drive after a treatment. He's loopy. But he's feeling better now, especially since they removed the tubes from his neck (better known as a Central Line) He is happy. He didn't like those tubes. When they removed those tubes I ran out of the room. I didn't like watching that.

Back

And discouraged. So having a hard time figuring out how to make a post. Point form works best...

- Brian is home. I'm tentatively happy about that, seeing as he's not doing much better than he was in the hospital. His feet are HUGE. On Wednesday we had an appointment and the blood work showed that his platelets jumped to 220 - which is great! But his kidney function is down. I think the doctors are confused by that (platelets are fine, kidneys should be even better now...?)

- We also found out that Brian's boss has decided to lay him off. And we found out today that it's not a permanent layoff, but it's just until Brian gets back on his feet again. It works better this way for his boss, too, so it's a done deal. And that means we have no medical coverage whatsoever. I will NOT be taking the kids to see the dentist this summer, as I'd planned to. This also means whatever medication Brian needs to take to get better is not covered. Yikes...


- Tomorrow we go back into VGH. AGAIN. I'm so tired of driving. I want a day off. But Brian will be receiving another PLEX treatment and I'll just sit around and wait for him. It'll take most of the day. Then we find out what the "new plan" is. Pull the central line? Probably. Make more appointments for next week? Definitely. Possibly set a surgery date for a permanent line to be put in? A possibility. This Atypical HUS thing is a nasty disease to have. It doesn't go away. It pops back up when you least expect it to, and turns your life upside down again. The chance of recurrence is VERY high, especially in the next few months. Meaning the platelet issue will revisit us. The kidney issue looks like it's going to stick around for awhile, possibly being a permanent issue. I've been doing a lot of reading on aHUS and it scares me, and makes me wonder what the future holds for my family. I should probably stop reading.

Thanks for continuing to pray and think good thoughts. Trust me, I am SO grateful most of the time but tonight I just feel burdened.

Prayer

Here's how you can pray today:

- for energy for me. I don't feel free to go into it on my blog, but I've been dealing with some other major issues that came up as a result of Brian going into the hospital. On top of dealing with suddenly playing single Mom, trying to provide for the kids and I, and figuring out how to handle Brian being in the hospital.

- For God's timing. I don't know why it works out this way, but I feel like my timing is off these days. With little things like the ONLY time I bring the cat away to be dealt with is the time that they're closed, among other things. I time everything wrong. And everything seems to happen at the wrong time. Today was tough. I decided to take a day for the kids and I. Just relax, catch our breath. Enjoy each others company. Pretend it's summer. And then today ended up being the first day Brian was released on a day pass. I should be happy, right? But it means putting all my other "plans" on hold to hit the road yet again. I'm to tired to be on the road again...

- Brian's platelet count went down today. Not good news. I've been trying to tell him to stop getting ahead of himself (ie telling people he may be home this weekend) because it's still very much day to day. Today was the perfect example of that. You just never know. Anyway, with his count being down, I'm not quite sure what that means. Maybe PLEX every day again? Maybe just doing it every second day for awhile and see what happens? We'll see.

- Thank you for continued prayers, support, and words of encouragement. I feel surrounded by loving arms right now and I am positive this is an extension of how God feels about me right now. I know, through all this, how much He loves me and my kids. I am constantly reminded of that. Even when I'm angry, or grumpy, or down.

Blah

That describes how I feel about driving around endlessly in this heat in a car with no air conditioning!

Yesterday was a big day for Brian. He got some encouraging news about possibly being on the fast track towards going home. But it all depended on how he'd respond to a skipped PLEX treatment yesterday. This morning he woke up and had his blood drawn to see where his platelets were.

Let me rewind a bit... Yesterday, while I was visiting Brian, I asked him if he knew what his platelet count was when he FIRST arrived at VGH. He asked the nurse that had been seeing to his vitals, and she gave us some interesting info. The normal range is 150-400 (thousand). When Brian came to the 10th floor, his platelet count was 77. She believed it had been somewhere in the 60's when he was in urgent care, and it was dropping fast. Basically, if your platelet count gets too low you can bleed out. Sometimes internally. (Which explains all the questions about nosebleeds, bruising, etc) Anyway, after some of his PLEX treatments, his count went up to 152. Low enough on the normal side to still be a concern. The following day it was in the 170's. And the next - 190. This morning, after skipping a PLEX, it was still 190. So it hadn't dropped, but if he didn't get a PLEX treatment today it might have and then he'd start crashing all over again.

So they gave him a PLEX treatment, and tomorrow they'll skip it again. And wait and see. The fact that he's getting PLEX every second day now is progress, and I hope the platelet numbers keep going up (even slowly!)

In other good news... The kidney doctors signed off on him yesterday!!! That mean's his kidneys are functioning well enough that they don't need to see him anymore! Now Brian is just dealing with hematology. His kidneys are functioning at 80%, which is okay. They may stay that way, or they may slowly get better. Either way, people have one kidney removed and function just fine at 50%, so he should be fine!

Well, that's the news of the day. I will try to see him again tomorrow but I've been SO busy taking care of everything on my end here that I don't know. I haven't even really spoken to him today yet - wierd.

Pray:
- That platelet levels keep going UP!
- For sleep - it's loud and his roommate has a machine that beeps a lot. He's complained that he doesn't get a decent sleep at night.
- For the kids and I, for God's continued provision. (We have been so blessed, and it's been such a lesson in trust)
- That his kidney function keeps picking up - the swollen feet thing, I'm sure, is getting old.

Waiting Game

I am just loving point form these days...

- Brian is waiting for a team of specialists to decide what to do next. They had a meeting yesterday to discuss a few cases, including Brian's, and will decide what's best. So today we'll find out what the near future holds.

- Brian has been feeling better and better. The PLEX treatments have helped normalize everything in his body (with the exception of his kidney function, which can actually stay at quite a low level without hurting anything) With that said, he DID have one blip in his BP - it went up to about 170 at one point. Hopefully that was just a momentary thing and not a sign of it going out of control again.

- One of the specialists called me to explain things to me from his perspective. It was a tough conversation. He said they're now classifying it Atypical HUS (Hemolytic Uremic Syndrome) and it's so rare they don't quite know how to treat it. He said the PLEX is working short term, at least, and the hope is that it'll work long term. But they don't know. Everything is still really up in the air. He says the biggest indicator of how Brian is actually doing is his kidney function, which has not improved significantly enough for them to be hopeful yet. In fact, he has lost a LOT of his kidney function and it may be permanent, or it may improve over time. The improvements they've seen have come SO slowly (even for an Atypical HUS patient) that his hospital stay will be awhile yet. I asked him what we'd do if the PLEX doesn't work. Kidney transplant? He said no - the disease causes blood clots that have ruined an otherwise healthy set of kidneys. If new kidneys were put in, the blood clots will do the same damage to the NEW kidneys.

- There is still a chance Brian's genes have something to do with it. They are still investigating his cousin in ON to see if there's a link there, but have been unable to speak to the specialist there. I was told, also, that if there IS a link we won't know if it's been passed down to my kids. Testing for this specific gene only happens in very few "testing centres" in the world. We could make it happen, but it would probably cost us a lot of money.

Pray:
- for wisdom for Brian's doctors. Apparently there's a bit of a "shift change" happening and Brian will be having a new set of doctors working on the case (hence the meeting yesterday, I believe) A fresh set of doctors may open up new ideas/treatments. Here's hoping.
- That Brian's kidneys function better and better every day. That the damage that's been done isn't permanent.
- That his BP stays stable
- Again, for the kids and I while I manage things at home here. Pray for ENERGY for me! And for God's continued provision.

Sunday Drive

I went for a Sunday drive yesterday - all the way into VGH! I was so tired I found myself having conversations with myself in my head, giving myself permission to just fall asleep. Then I'd shake my head and remind the inner voice that I was on the road. I made it there safely!

- Brian will be receiving his "PLEX" today (PLasma EXchange - I haven't known what to call it all along but it was most like a transfusion, so "Plasma transfusion" seemed the best option. Now I have the technical term!) He will be skipping tomorrow's to see what happens.

- His feet are swollen right up again since yesterday morning. I'm not sure what this is a sign of, but I'm hoping it doesn't mean his kidney function has gone down again.

- At his "Plex" yesterday, he had another reaction. Not nearly as severe this time, and they managed to complete it. When I saw him, his face was all puffy again and the Benadryl was making him sleepy.

- I may be going to the hospital again today, this time with Mercy along for the ride. We've been wanting to protect the kids from the way Daddy looks (tubes coming out of his neck and everything) and not scare them, but Mercy is really having a hard time dealing with not seeing Daddy. Phoning is no longer enough.