Surprise, surprise

So, I'm getting to the blog a little late today because things did not go as expected yesterday.  When I brought Ryan his McDonalds at noon, his PA said he'd been waiting for me.  That always makes me a little nervous, but this time it was for good reasons.  He said Ryan was doing great and his pain was really well managed, so they said he could go home if he was ready.  We went in and asked Ryan and he was ready!  I couldn't believe it.  After only one night in the hospital, after a major surgery, Ryan was ready to go home!  So, after getting paperwork, supplies, and a ton of visitors, we packed up and were home by 4:30 pm.  He still has wound vacs on both his shoulders and a bolster (pressure dressing) on his upper lip, but the wound vacs will be removed on Friday and the bolster on Monday.  He's relatively comfortable and just so happy to have some movement back in his neck.  His eye pain is gone and now the thing that bothers him the most is the donor site on his right thigh where they took the skin to graft his shoulder.  He's happy to be home and we're happy to have him home.  He hasn't been up and around a whole lot, but that's to be expected.  We're watching his face for any signs that things aren't going well, but his surgeon said that if it's going to fail at home, it's going to fail in the hospital and there's nothing we can do about it.  It's hard to tell what looks good and what doesn't, but so far things look pretty good.  Before when he would get skin grafts he was always bandaged up for several days.  So I don't really know what a skin graft is supposed to look like on day 2.  His PA did say that it's going to look worse before it looks better, so I try not to worry about it too much.  We'll be in the clinic tomorrow so they'll let us know for sure.  Just keep Ryan in your prayers and I know we'll be just fine.

All Good Things Must Come To An End

The title of this blog was selected by Ryan when we talked about it last night.  He was referring to the three weeks of living with his facial flaps and he was being VERY sarcastic.  Those flaps were no fun!  But we are happy to report that they no longer exist.  Ryan's surgery to disconnect them yesterday was very successful and the doctors are happy with the results.  In addition to disconnecting the flaps and finishing off his cheeks, they grafted his upper lip, did some dermabrasion on his nose, chin, and cheeks, grafted his right shoulder that was open when they took his flap, and reversed the pedicle to close his left shoulder.  A lot of that probably doesn't make sense to most people, but just know that he is doing fine.  His right thigh is sore where they took the donor skin for his right shoulder.  But the graft on his upper lip came from one of the pedicles of his flaps.  Just like last time, the thing he's been complaining about the most are his eyes.  We've learned that when they operate so closely to his eyes it disrupts the lymphatic drainage and causes extreme dryness in his eyes.  This time we've been very proactive and made sure we began lubricating his eyes as soon as possible after surgery.  I think it is working because he's not having near the eye pain that he had last time.  It's funny to look at him right now and say he looks great.  Most normal people would think he looks terrible.  He's kind of purple, swollen, bloody, and stitched up, but you can already see how nicely everything is going to heal.  And after three weeks of staring at his jiggly cheek flaps, he looks down right beautiful!

I spent over 14 hours at the hospital yesterday and was very tired when I came home.  So, I'll probably be updating Ryan's status in the mornings since I can't go and see him until noon anyway.  He's already called me this morning to give me his McDonalds order for lunch.  And he said he had a pretty good night, except for all the lights and beeping in his room all night long.  He's only sharing a room with two other people (so far) this time.  And I knew he was doing a lot better than last time last night when he was quoting lines from Jim Gaffigan's comedy routine.  All he wanted for food yesterday was popsicles, jello, chicken broth, and ice cream, but he told me he ate a big breakfast tray this morning and of course, he's already calling for his McDonalds.  

Please keep praying for Ryan.  I know it is working.  Once the flap is disconnected, even though it had three weeks to set up it's vascular structure, it is essentially a graft.  And grafts can retract and fail.  While everything looks really great now, I know your prayers will keep it that way.  My sister, Stephanie, is in town this week helping out.  So the kids and I are doing good.  Thanks for all your calls, emails, texts, and well wishes.  We appreciate them all!

Catching Up

Ryan came home from the hospital as scheduled last Friday afternoon.  He was happy to be out of the hospital and I was happy to have him home.  I no longer had the added responsibility of driving back and forth to visit him everyday, but having him home presents the added challenges of caring for him and everyone else at the same time.  Since having him home means no visiting hours, I haven't taken the time to update the blog before or after I see Ryan.  Ryan is here all the time, so usually if he doesn't need me, one of the kids does.

Ryan is doing better and better everyday.  His pain is very well managed and his energy is pretty good considering his limitations.  He went to the hospital Monday, Wednesday, and Friday for follow up appointments, and each time they were very happy with how he was progressing.  We met with the surgeon yesterday and he's confident that Ryan will be ready for the next surgery on September 2nd.  It's pretty awkward for Ryan to have "bridges" of flesh connecting  his neck to his cheeks, so we're looking forward to having that disconnected.  And I look forward to not having to do the wound care necessary for his flaps.  I keep asking Ryan what people would do if they didn't have a strong stomach.  But we both know it is a means to an end and having that burn scar off of his face will be such an improvement.  Not just aesthetically, but burn scars contract and pull his eyes open, cause him pain, and drastically increase his risks of skin cancer.  Having that gone will be good for so many reasons.  

His eyes are doing much better than last week too.  His right eye, in particular, developed a lot of swelling under the membrane and ophthalmology was watching it closely.  We just had to be really aggressive with the eye drops and goggles and by Wednesday, Ryan was able to get his Boston Scleral Lens back in.  His lenses provide constant moisture for his corneas and protect them, but with all the swelling they didn't fit.  Now that he can wear his lenses, he still needs drops for the area of his eyes not covered by the lenses but he's much more comfortable and can see better.

So, ten more days until the next surgery and Ryan being able to move his neck freely again.  Please keep us in your prayers in the meantime.  This really isn't fun, but we're managing.  

Post-op Day Three

Ryan's appetite is coming back! Not with it's same voracity, but it's certainly better than the last few days. When I called him before visiting hours began to see if he wanted me to bring him something other than hospital food for lunch, I knew he was starting to feel better because he asked for a Double Quarter Pounder with Cheese, Fries, Coke, and an M&M McFlurry. He didn't actually eat it all (like he normally would), but he made a good effort. And he fed himself for the first time since surgery too.

Sleeping in the hospital is always a challenge for Ryan, especially when he has to share a room with 3 other people. But last night he slept better than he had the previous two nights. Maybe that's why he was feeling so much better today. And he's looking good too. The color and temperature of his flaps are the best they've been yet. His doctor is really pleased and confident that everything is going to turn out nicely. The swelling is down a little bit since yesterday, but still looking just as it should. I've taken a few pictures of Ryan the last couple of days and shown them to him so he can see how things are coming along. But he still is constantly asking me if his eyes, his flaps, his pedicles, his wound vacs, etc., look okay. And they look great, but sometime between the 15th and 20th time he asks me, I start telling him that they look awful and he should probably stop asking me. He doesn't stop. And I've also started telling him that he looks like a character from the "Austin Powers" movie, "Fat Bastard". He actually agrees with me on that one.

The doctor says we're on track for Ryan to go outpatient tomorrow. And we're both looking forward to that. I always forget how exhausting it is to spend all day at the hospital. When I'm away from the kids all day, I feel guilty that I'm not home. And when I'm away from Ryan, I feel guilty that I'm not at the hospital. Meanwhile, nothing is getting done at the house. Laundry, groceries, cooking, and more are all being neglected with each passing day. They will still be there when Ryan comes home and I don't have to spend all day at the hospital. Then I'll just have to add wound care, pain management, and who knows what else, to my list of things to do. But never fear, Ryan's sister, Rhonda, is flying in tonight to save the day. She offered to stay for a week and help me with the hardest part of these three weeks. I love her!

In other news, Noah has been taking his first steps this week, but I wouldn't yet call what he does "walking". Maya just found out she will be transitioning to a preschool class at daycare. She's not yet 3 years old, but she is potty trained and has good language skills so they are moving her up a little early. Jaida is visiting family in Oregon and will be home next Tuesday. We miss her and can't wait to have her home. She's had quite the busy summer. She starts 8th grade on August 25th. So you can see, there's always something new happening at our house.

Post-op Day Two

Ryan looked much better today than he did yesterday. While he wasn't feeling really bad yesterday, he wasn't moving around much either. He pretty much just laid there with his eyes closed. Today when I came in he was sitting up with his eyes open, talking with visitors. So his eyes are feeling a lot better, and so is he. He still isn't eating much, but I'm not too worried. I know that will come back. It always does! And his flaps are still looking good. They are a little more swollen than they were, but not as swollen as some of the guys I've seen. And the swelling is normal too.

They continued with the leech therapy today, but we had a little added excitement. The nurse who took care of Ryan had never worked with leeches before. A more experienced nurse came in and showed her how to get them started and then left her alone to catch them as they fill up and fall off. Well, Ryan's nurse wasn't 100% comfortable with the leeches. So, when they finished up she just grabbed them with a handful of gauze pads and quickly threw them in the trash. Well, leeches are living, moving beings...and they didn't stay in the trash can. A little while later, I nearly screamed when I saw a leech inching across the floor leaving a trail of blood. His nurse jumped up and grabbed it but didn't know what to do with it. Then we saw a second one on the floor near the trash can. There was still a third leech unaccounted for that the housekeeping staff discovered shortly after. The nurse was so embarrassed and the whole ward was making fun of her and giving her funny nicknames like DJ Leechy. And she has since learned that after a leech gets his last meal, you destroy him in a cup of hydrogen peroxide. While it may sound cruel, it's much more hygienic than letting them leave blood trails all over the floor when they escape the trash can.

Post-op Day One

If Ryan's nurses didn't know how much he likes to sleep late, they know now. After they resolved Ryan's issue with his eyes, he decided he had some sleep to make up for. When I came in at noon, his nurse told me that he'd sent her away and said not to come back until I arrived to feed him lunch. He wasn't mean, just clear. :) And even though he didn't complain about his pain, he hardly ate anything so you know he wasn't feeling great. He didn't do much besides rest today, but he did get out of bed and sit in a chair for about an hour and a half. The physical therapist came by to range and stretch his hands. His surgeon stopped in and said that he was looking great, but as a precaution he prescribed leech therapy for his left cheek and nitroglycerin paste for his right cheek. Both recommendations should dilate his capillaries and improve circulation to ensure the viability of his flaps. While leeches may make some people squeamish, this is not Ryan's first encounter with the blood sucking parasite. They used leeches on his eyelids after a procedure last October. It doesn't hurt, in fact, he can hardly feel it. And to show what a sense of humor Ryan has about it all, he often names his leeches. Today they were Albert Einstein, Kelly Clarkson, and Kareem Abdul Jabar. I asked him why and he said they were all American Idols! Whatever makes him happy!

I'm hoping he's a little more talkative tomorrow and a little more hungry. But all this is to be expected after such a major surgery. We're just taking it moment by moment. Thank you to everyone who posted a comment or sent us an email. It helps to know you're out there sending us your support and love.

Surgery update

We went in yesterday morning at 6 am expecting Ryan to be the first case as scheduled.  It wasn't until about 9:30 that we found out that they had two urgent cases and the schedule had been adjusted with Ryan being bumped to third case.  Ryan didn't mind too much, he just laid back and took a nap.  They finally rolled him back at nearly 1 pm, but not before letting me kiss his scarred cheeks goodbye.  The next time I saw him his shoulders would be replacing the skin on his face.

The doctors came out at 4:30 and let me know that the procedure went well.  They were able to remove a lot of the scarring on Ryan's face and completely close his left shoulder.  There is an open area about 2"x3" on his right shoulder that couldn't be closed.  They covered it with integra (synthetic skin) and a wound vac, and will go back and graft that area later.  I got to go see Ryan recovering in ICU at about 5 pm and he was still coming out of the anesthesia.  When he finally began to rouse himself, I asked him how he was doing and he said, "Hurting."  He told me he felt like he got hit by a Mack truck.  The nurse gave him some pain medication and something for nausea, and he drifted back to sleep.  He woke up shortly after and was doing well.  By 7 pm, he was ready to move down to the Burn Ward and his pain was down to a 5 on a scale from 1-10.  While they got him settled in his room, I ran downstairs to Burger King and brought him back a large vanilla milkshake.  As soon as he got that, he sucked it down and was feeling pretty good.  Of all the things that might be bothering him, his eyes hurt the worst.  They didn't do anything to his eyes, but because they were working so close to them they were open a lot of the time he was under and became really dry.  He's used to wearing his moisture lenses all day and hasn't had to deal with dryness in his eyes since he got the lenses.  His eyes were throbbing when he woke up and he could hardly feel anything but the pain in his eyes.  While we waited for his eye medication to show up in the computer, I soaked gauze bandages in ice water and pressed them to his closed eyes.  That gave him some relief until we could get his eye drops and lubrication.

When I left him last night at 9 pm, his pain was down to about a 3 and he was listening to his iPod and trying to sleep.  I called this morning and talked to his nurse and she said that his eyes were the only thing that were bothering him last night, but once they got the right combination of lubricants down, he fell right to sleep and slept through the night.  Visiting hours start at noon today, so I'll be going in to see him then.  We'll know in the first couple of days if the surgery was completely successful.  So please pray that the flaps have good circulation and Ryan remains as comfortable as possible.  Thanks so much.