Tuesday, September 23, 2014

Week 3 in the hospital with the husband and his birthday

We checked Isaiah into the hospital on September 3rd for the embolization and surgery on the 4th. He then spent 2 nights in the ICU followed by 12 days on the ortho floor. He was transferred up to the rehab unit on the 17th. So today closes out his 3rd full week in the hospital. Now that is rough.

His estimated discharge date is October 1st... that will be a full 4 weeks in the hospital. YIKES! The poor guy has been handling it very well considering we were originally told it would be 7-10 days in the hospital after surgery and he'd be leaving on crutches. After surgery he was unable to feel or move ANY of his right leg. Talk about scary.  Over the past 3 weeks he has been working on healing, growing stronger, and re-learning how to do basically anything involving your leg. He wasn't even allowed to try to stand for a week post-op and he still isn't allowed to put any weight through his right side, and probably won't be allowed to put any weight through it for a few months.

It has taken some serious work to get his pain under control especially once the nerve pain started up in his right leg. I feel bad that I got so excited to hear him say his leg was in pain. Nerve pain means those nerves are waking up and maybe, just maybe, he'd begin to regain feeling and function. He has made some incredible progress since surgery and today (on his birthday) he was able to walk over 165 feet (with a walker due to the no weight on the right side thing). That's the furthest he's been able to walk and with only 2 breaks. For comparison, he was able to walk about 50-65 feet yesterday with 3 breaks and on Friday he walked about 35 feet with one break... so quite a big change. I think a big reason for the major progress today was due to finally getting his nerve pain better under control so that it wasn't prohibiting him from doing his physical therapy.

It's so crazy what things are like right now but we are still so thankful because we know that this could be worse. We just never knew he'd have to learn how to sit up, stand, walk, etc. Now, this is hopefully only temporary until more of his feeling and function of the leg comes back. We still don't know at this point how much will come back or when it will come back. I'm hoping that by the time he is allowed to put weight through that leg that he will have most of the feeling, function, and strength back in that leg as well.

I feel bad that he's had to spend his birthday here in the hospital but today has been an incredible day of progress. I can only hope and pray that this continues. :)

It's been a crazy few weeks and we SO miss home but we are lucky to be here and so blessed to have the continued support from those around us.

Tuesday, September 9, 2014

Thankful

With how scary and ugly and rough this past week has been and how much further we still have to go (see previous posts regarding Isaiah's surgery), I have been doing a lot of whining, warranted whining  but whining nonetheless. I thought it might be nice, mostly for me, to take a minute to think about all of the things I am thankful for. So here we go.

-Prayers. My prayers, your prayers, random strangers prayers. We truly can use all of the prayers that we can get right now with what we have going on. And boy have we felt the effects of the prayers being said for us. I don't know how I haven't completely lost my mind yet or freaked out.

-Family and friends. We have some seriously awesome friends and family. Like mine are totally better than yours. No contest. We have received so much love and support that it is overwhelming. Family and friends are keeping me sane and reminding me of the good things when I start to get negative.

-Amazing surgeons and doctors. Can I just say WOW. I mean talk about lucky. We have been directed to all of the right people. We are so thankful for the amazing people that God has put in our path to even make this surgery and his ultimate health and recovery possible.

-Audrey. Our little miracle baby. We first discovered that I was pregnant with her while we were here in Seattle for Isaiah's biopsy back in May that confirmed the cancer. While some might think that's a lot to deal with at once, it is but it's soooo worth it. She has given us another light at the end of this ugly cancer tunnel. Something to keep us distracted and excited along the way. I seriously had begun to wonder if I was ever meant to have a baby, but just when I did God stepped in and proved that He knows exactly what we need and when.

-Generosity of others. While maybe it seems tacky to mention money here, how can I not? People have reached out to us, some who don't even know us, to bless us with a gift. Talk about making a girl cry, pregnant or not. While I'm not saying paying bills or looking at our bank account is going to be easy or fun over the next year or years, it has been an incredible relief to have that bit of help. It still surprises us when we see another donation on our gofundme page or a check in the mail. It just blows my mind still.

-Seattle. How incredibly lucky are we that we were sent to Seattle. Other than being able to stay home, Seattle is the closest place that they could have sent us. It also has been a huge help that I have a TON of family in the Seattle area. I'm currently staying with some family, borrowing a vehicle from more family, and I have all of them more than willing to be there for me whenever I need them. Some even stooped by for a bit on the day of surgery and have been checking on us since.

-Home. Never in my life have I so missed Alaska. I miss the people, my car, my job, my family, my dog, my bed, my life, and mostly my healthy husband. While I am here with him, he isn't able to be himself. He has gone through SO much this past week and I so look forward to the day that he can say he isn't in pain all the time.

I have so much else but who wants to read another 10 mile long post by me? I'll stop myself now :)


The past week... it's been rough

We flew out of Anchorage to Seattle on Tuesday, the 2nd. Flight was nice and roomy with just us in our row. When we arrived, my grandpa picked us up and took us to the car that we'd be using while we are here, my aunt and uncle are letting us use it. Then off to the hotel to get some sleep. 

Wednesday morning was an early morning, with him needing to be at the hospital by 7am (6am Alaska time). We got him admitted, he had his blood drawn, and then we checked him in for the embolization. The embolization was, in theory, supposed to take about 2-3 hours... Well it took over an hour and a half just to get him taken back to the OR and then 4 hours from then until he was done. 

During the embolization they were puncturing his skin to get to his femoral artery. They would then inject dye to determine which vessels and arteries were supplying the blood to the cancerous tumor. Once that was figured out, they had to insert catheters into each artery and vessel to inject particles that would block the blood supply, essentially beginning to kill off the tumor. Oh, and did I mention, it was conscious sedation? :( Poor guy was awake for the whole thing and had to lie completely still and flat on his back the entire time. Yes, the same guy with a herniated disk needed to be flat on his back... joy. Then in order to close off the puncture that they created, he would need to lie flat on his back for an additional 2 hours to get the seal to take. 

When they came to get me in the waiting room they let me know that it went very well and that I could go with him up to his room. When I got to the elevator, he was in SO much pain. His entire body was shaking. He is NOT one to admit when he is in pain... but it was so bad he was shaking like crazy. Once we got him into his room, we had about 4 nurses, including the charge nurse working on getting his pain under control. They were shocked and quite pissed that the nurses downstairs had allowed him to get to that level of pain. Apparently, someone got yelled at. GOOD. I was pissed. 

His nurses were amazing and took good care of him. I felt terrible leaving him in the hospital that night but I knew that I needed to get back to the hotel and get some sleep so that I could be back early the following morning before he went into pre-op. 

While he didn't sleep well, he wasn't in bad shape the next morning. He was mostly anxious and to get things rolling. We got him taken to pre-op around 7:30am but it was quite the surgery and took some serious time to get his OR prepped and ready to go. He had TONS of nurses and doctors filling the room to ask questions, run tests, etc. They were all so incredibly nice and kept reassuring me that he was in good hands. At about 8:30am they took him back to the OR. I was very happy that even with my serious sleep deprivation (I got to the hospital at 4:30am due to a nurses misunderstanding that his surgery was to start at 6am), pregnancy hormones, and just the weight of everything that was happening... that I was able to keep my emotions in check and try my best to just be there for him and answer whatever questions I could for the medical teams. Naturally, I started tearing up when they took him back to the OR to start the whole thing. It was a big and quite scary surgery... 

Around 10am I got my first call from the nurse letting me know that they had just started the surgery itself. There was a lot of prep work that had to go into this thing. Every 2 hours, that same nurse called me back with updates as to how surgery was going. Thankfully, every time she called, she gave me a great report and let me know that he was doing very well. With every phone call, I could feel myself relax just a  little bit more. I was nodding off while watching netflix between phone calls and meals. The doctors kept telling me that I should go back to my hotel and get some sleep... but could anyone REALLY do that?! I couldn't leave. I hated having to leave him in that OR, I certainly wasn't about to go sleep 20 minutes away. 

Nearly 8 hours into the surgery, the lead doctor gave me a call. He said that they were keeping blood loss to a minimum, they hadn't needed to cut any of the nerve roots that they had thought they would definitely need to cut. He was able to save all of his nerve roots! Seriously huge deal right there. He let me know that the surgery was going better than they had anticipated, it was just going a bit slower... FINE by me. Take the time that you need to do it right. As long as I'm only getting good news, take the time that you need. Over 11 hours in surgery, and more than 13 hours total in the OR... he was done. 

The doctor called me yet again to let me know how to get to the ICU and how delighted, yes, he used the word delighted, at how the surgery had gone. This doctor is quite stoic most of the time, so to hear how happy he was with how it went, made me want to cry tears of joy. Oh, and in case you are wondering what keeping blood loss to a minimum is in a surgery like this. He lost half of his blood volume. HALF! That is freaking amazing considering they excepted that he'd lose his entire blood volume. Time to find the ICU. 

His mom, 2 of his brothers, and I made our way to the ICU and waited while they got him all situated. I have never been so happy to see someone in the ICU. He was unconscious and SOOOO swollen. I think his lips alone were about 4 or 5 times their normal size. But he actually didn't look as bad as I'd anticipated. I could rest easy that night. Since he wouldn't be awake until morning, we all left to get some sleep. I'd been at the hospital for 18 hours and I was well overdue for sleep. 

Friday morning I got up early and went back to the hospital by 8am to see how he was doing. He had actually woken up about 3 hours before then (earlier than the staff had expected) and coughed out his breathing tube. Guess his airway was strong enough to handle breathing on his own! He was in a lot of pain but the ICU nurses were amazing and got his pain under control. Unfortunately, his blood pressure was incredibly high (like in the 190-200s) and his heart rate was sky high as well. Throughout the day, the amazing ICU staff took great care of both of us and they were able to get his blood pressure down significantly, thought still high, but his heart rate was still freakishly high. Apparently, they see this quite often in young, healthy men. Since they weren't worried about his heart rate, neither was I. Saturday afternoon, the docs had put in the orders to get Isaiah moved out of the ICU. That night I left him watching ESPN in his own room. 

Saturday morning I came in to find him not feeling super great. I think his body just needs far more sleep right now than he is able to get. Not to mention, the incredibly high amount of morphine that he was on was making him super loopy and out of it. Saturday was full of doctors and nurses making their rounds. He even had his first physical therapy session. The physical therapist was very happy to see how he was doing so far and that he was able to sit up for a full 15 minutes. His blood pressure and heart rate have continued to improve and his heart rate is now in the "normal" range. 

Sunday was a good day because we were able to get him off of the loopy morphine. During physical  therapy he was able to sit up for a full 30 minutes and the therapist was excited with how much strength they were finding in his right foot. Since surgery his right leg and foot has been incredibly numb. He can't feel most of his right foot and calf. His foot is still incredibly swollen and those nerves were basically tortured for the past 6 months and during surgery, so it could take awhile to wake them back up. But with no nerve ends being cut, he has the potential to regain all feeling and strength in the whole leg and foot. The therapist also told me that she's amazed that he isn't still in the ICU after such a long and involved surgery. So he's doing better than even we thought! She just kept getting so excited with everything that he was able to do with his right leg and foot. 

At bare minimum, if he doesn't regain more feeling and movement in his leg and foot, he does have the necessary use to be able to walk.... granted it will take some physical therapy to get him there if he doesn't regain additional feeling and mobility. However, it seems like he's feeling a little bit more of his leg each day, and he's able to move it a little bit more as well. 

The doctors have been very happy with how he's doing so far. They said he's the "poster child for how you should do after this type of surgery". After talking to the surgeons for a bit, they told us that they only get cases like his maybe a few times a year. Super rare... yay for being special :/ I also saw some of his incision yesterday and boy does that look painful!!!! He has over 100 staples along his back and right side. They said that they basically had to cut him open in half. Here is a picture of his new hardware. They did a spinal fusion to fix the herniated disk and then they had to remove part of his sacrum bone which he will forever be without. They then cut a HUGE chunk of his pelvis (you know the big wing thing?... ya they cut off almost the entire right side of his) and replaced it with bone from the bone bank, and that is held in with some screws and plates. Those long screws that you see, they are about as big around as your pinky finger... so you can imagine how HUGE they really are. 


You can even see the staples in there... OUCH! No wonder he hurts! And no wonder the docs won't let him stand just yet. They want to allow some time for the bones to heal a bit and the hardware to stay in place. We were told yesterday that he will be here for about 7 to 10 days (hopefully that includes the days he's already been in the hospital) and then another 7 to 10 in rehab... Whether that is inpatient or outpatient, I'm not sure. 

He's seriously had a rough week this past week. He has been poked and prodded and cut open wayyyy too much. It is so hard to watch someone, especially your husband go through something like this. I really hope and pray that this is the one and only time that I will ever have to see him in the hospital. It just seems so wrong. He has a lot of physical therapy in his future for his back and leg so I really hope that they got all of that tumor out. It takes awhile to get the pathology back on what they removed but they said it was about the size of a small melon, or I guess you could call it cantaloupe size... OUCH! I just hate seeing him in so much pain and knowing that there really isn't anything that I can do to fix it. I cannot wait for the day that I get to take him home and even more for the day that he can say "I'm no longer in pain everyday". He's already been in pain daily since mid March... it just seems cruel to put him through all of this now. 

Don't get me wrong, I know that we are lucky. Things could have been a lot worse. Each step of the way we know that things could have been worse. We are truly blessed. And the people who have reached out with love, support, prayers, donations.... it still makes me cry (and no it's not just the pregnancy hormones). I just really pray that the blessings and miracles continue for us. I can't wait for us to feel normal again. 

All of this really puts things into perspective for me. I mean, yes, this SUCKS... like BADLY SUCKS but I look around at some of the other people here in the hospital, and I know that it could be worse for us. But then I look at people's lives and yes, some of them have had rough times, but do they know how amazingly blessed that they are? Do they understand how much they need to cherish every moment of what they have? I really hope that they do because I feel like we took too much for granted before all of this. I miss when our biggest concerns were how we were going to come up with the down payment for a house or spending so much money on new tires for our cars. There are so many things that consume us daily that truly don't matter. 

Once this is all over, I hope that we can use this as a reminder of how lucky we are. I don't want to go through anything like this again, EVER. But I hope that we can remember what big worries really look like, what they used to be like for us. 

Thank you all again for your love, support, prayers, and words of encouragement... It means so much more to me than I could ever express. 

Again, if you'd like to avoid my massive posts about how he's doing, you can follow along using this link. I'm posting a bit more frequently on there. Or at least trying to... :) http://www.gofundme.com/isaiahandshelby



Monday, September 1, 2014

21 weeks for me & surgery for him

First, the update on Isaiah... We fly out to Seattle again tomorrow. Wednesday he will be admitted for the embolization with surgery early Thursday morning. That is going to be a long few days for both of us, thankfully it will got a little quicker for him since he'll be under anesthesia for some of Wednesday and most of Thursday. He will be in ICU for one or two nights, but a total of 7 to 10 days. HOPEFULLY, we will be home shortly after that. PLEASE keep us in your prayers for safe travels, a quick and successful surgery, and a fast recovery.

I will try to keep the blog updated while we are there, but if you'd like more updates, you can check out our gofundme page. http://www.gofundme.com/IsaiahandShelby 

Alrighty, now on to my updates.

•How far along? 21 weeks 1 day as of today


•Due date: January 11, 2015
•Baby is about the size of a banana (7 in, 11oz)
•Symptoms: I get tired pretty early, I like to be in bed around 9:30 or 10. Hungry quite often, but I get full pretty easily. I have to pee allll the time, granted drinking so much water is probably a huge reason. Sore chest still.  Sore back, especially when sitting down. OH! and awesome cankles. If I'm on my feet too much, in higher temps, or flying, they swell up SO bad and sooo quickly. See... This is courtesy of all aforementioned contributors... the bottom pic is after a day of keeping my feet up lol. Quite the difference. 

•Cravings: Salty and savory foods and then anything fresh like fruits and veggies (I assume to counteract all of the salt). Number one craving over the past 2 months or so has been PIZZA. I will eat pizza every day, more than once a day if allowed. I will eat pizza in a variety of forms. I have, on more than one occasion, come home from the store with pizza rolls, frozen french bread pizza, a variety of frozen pizzas, fresh pizzas, and stuff to make any sort of pizza related recipe that I can find. While Isaiah typically likes pizza, he has requested that we eat something other than pizza on more than one occasion. Heck, I even eat pizza for breakfast some days.
•Bump? Yep! Baby bump is finally here, which makes me quite happy.
•Maternity clothes: Heck yes! I can still wear some of non-maternity clothes but I can't stand anything even semi fitted on my stomach. And have you ever tried on maternity pants?! Those things are comfortable!!!
•Stretch marks: Not yet
•Belly button in or out: In but starting to work toward flattening out. It's super weird!
•Kicks? YES! I started feeling her move around 15 weeks and it is still pretty sporadic at this point. I have an anterior placenta, which I've been told basically is the same as having a pillow between the baby and my belly. So her movements aren't super strong, they are more like a soft rolling motion. Sort of like someone just has a hand resting against me but not applying any pressure.
•Gender: Girl :) Audrey Elizabeth
•Looking forward to: Stronger kicks (people keep telling me I'll take that back once it happens), getting back home after Isaiah's surgery and feeling more "normal" in our everyday lives.
•Sleep: Eh, not great, but not the worst that it's been either.
•Miss anything: Real coffee, turkey sandwich, this amazing blue cheese salad at a local restaurant, and a local brewery makes a raspberry wheat beer and an apple ale... together they are delicious. All totally worth it though.

The past few weeks we've been making some awesome progress on Audrey's room. We got the room all painted about a month ago, then the trim and crown molding up shortly afterward. Furniture has all arrived now. Here is the current progress! :)





Thank you all for your continued prayers and support... it really means so much to us. :)