Two Steps Forward, One Step Back

Soooo... right after I sent my earlier update, and about the time that they brought Joe his lunch tray, he decided to move his bed and sit up a bit. When he did that, he asked me if his neck looked swollen. I took one look at him and hit the call button...

Joe developed (rather quickly) a fist sized hematoma on his neck. The nurse came in, took one look at it and called the doctor. The on-call doctor came in and looked at it, and decided that he wanted the surgeon to see it. The surgeon came down as soon as he could and decided that Joe needed to have it drained. They were concerned for two reasons- he is still on high doses of blood thinners AND the location of the hematoma being so close to his airway in his neck. The surgeon did indicate that Joe could just wait and see what happened and see if his body would just resolve it, but that this would take 4-6 weeks. He also warned Joe that if it continued to progress he might need to have it dealt with on an emergency basis... where he probably wouldn't be the person to perform the surgery. Joe decided that it was making him very uncomfortable and he would rather just have the drain put in.

So, back to surgery we went. Again, we had great nurses, the anesthesiologist was excellent and the procedure went VERY well. Round trip from pre-op to surgery to recovery to back to his room was about 3 hours, which was excellent.

Joe is back in his room, with LOTS of good drugs. He did try eating some jello and some broth before I left tonight, and that seemed to go very well. Obviously he is EXHAUSTED (who isn't at this point?), but seems to be in better spirits now that his neck is not as swollen. That may be the morphine helping his spirits, but hey, I'll take it! :)

Tomorrow will bring a lot of education for me! I need to learn how to empty and clean the drain (it is possible he will come home with the drain still in, so they want to start teaching me how to care for it just in case), and I need to learn how to give Joe his injections. In an effort to NOT reintroduce heparin into his system at this point, they are going to use another drug that needs to be injected twice a day. Again, this will be a temporary thing, probably just for the first few days after he comes home, but they want to make sure I know how to take care of him properly... so we aren't ready to go home and just waiting for someone to teach me this stuff. Joe will also start physical therapy tomorrow... no excuses! The doctors are concerned about his range of motion and about muscle atrophy and really want to get him working that right arm!

On another note, I know many of you are wondering about my mom. The surgery on her eye went very well today. I talked to her several times throughout the day and she seemed to be in good spirits. She is looking forward to her appointment tomorrow when she will get the patch off of her eye, which will make seeing things much easier. She and my dad had the kids this afternoon/ this evening... which I can't even begin to thank them for, considering all that went on for them today!! Papa even did the bedtime routine at my house before I got home. Thanks Nana and Papa... you guys are amazing!

Again, hoping that tomorrow brings a little bit more normalcy for all of us- especially my kiddos. I know they are close to the end of their ropes, and so I've gotta find a way to balance all of this better so I can be there for them- and Joe. Prayers for God to show me the way to have some balance right now would be greatly appreciated. And as always, prayers for Joe to heal quickly and continue to have non-morphine induced good spirits.

Very tired, so I will close.
Until next time...
C

Hard Day

Just wanted to update you all this morning... Joe is having a rough start to the day. He is just feeling lousy, sleeping a lot... and generally having a rough go of it. The nurse is having the physical therapist wait for a bit before coming in because she just doesn't feel that Joe is up to it physically or emotionally. Good news is they are managing the pain well... he just feels really cloudy and out of it.

I left for a bit... he seems to sleep better if I am not sitting there looking at him, and I finally found a place in this hospital where I could connect to the internet... yeah! I figured I'd take advantage of this time to post a quick update.

No rib yet... Joe has to be well enough to go to pathology to get it... and he just isn't there yet. But, I have done my wifely duty and reminded the nurses that he does STILL want his rib.

I was hoping that today might return us to a slightly more normal schedule... maybe tomorrow.
Have a wonderful day folks. Thanks for all your positive thoughts and prayers. :)
C

The Quest for the Rib....

Rough start to the day this morning. Joe was feeling anxious... and therefore Carrie was feeling anxious. Day started getting better when they took him down to surgery an hour early... and when the anesthesiologist was there WAITING with anti-anxiety drugs. Amazing what drugs can do. Within a minute Joe was totally relaxed and cracking jokes!

Surgery took about 2 hours and 45 minutes. They were able to go in through the top of the collar bone, rather than through his underarm. His incision is about the same length that the clot was... how ironic.

Surgeon feels that the surgery was VERY successful... he managed to get in and get the rib without injuring the lung or, as far as we can tell right now, any of the nerves running to the arm. Yeah! The other EXCELLENT news is that after seeing the vein, he has decided to CANCEL the procedure for tomorrow. The vein was still soft (scarred veins are hard) and so he would like to see how much Joe's body can do to heal and repair the vein on it's own. In 4-6 weeks, they will do an ultrasound on Joe's vein to determine if further repair is necessary. If it is, they will likely do the repair at the end of the 6 months of coumadin....

Joe is resting comfortably. He is on a LOT of drugs... morphine, Oxycontin, etc. You name it, he's getting it. He has not really eaten yet- just jello and some broth, but they think he will be ready to try some more food at breakfast. When I left the hospital he was just laying in bed, totally relaxed and pretty conked out. I think he should rest well this evening!

Here's the funny part of today... Joe is INTENT on getting his rib back so he can see it and keep it. He talked to the doctor about this yesterday and the doctor said that he didn't care- but it really wasn't up to him. Then the nurses went on a quest to help us figure out who Joe needed to talk to... ends up that he needs to sign a consent and request it from pathology. You can't actually request it from pathology before pathology has the item, so this wasn't something we could do ahead of time. I guess tomorrow we will be taking a field trip (because I can't get it for him, only he can request it) to pathology to fill out paperwork so that we can leave the hospital with Joe's rib. However, we've been warned that this is something that is often forgotten, so we needed to make a big deal out of it to every person that would be in the surgery. Picture this: here's Joe, totally anxiety ridden, unable to really communicate a lot, and his CRAZY wife, telling every doctor that we see that he would really like his rib back after they take it out PLEASE. I'm sure the doctors thought I was NUTS. There is even a big yellow post-it note on the outside of his chart telling everyone that he wants his rib back.... and of course this has led to a number of jokes from all parties. The nurses on our floor are now calling Joe "Adam". Doesn't matter to me.... if Joe wants the darn rib back, then he is going to get the darn rib back no matter what I have to do!!

So... I am sure that you are wondering, other than getting the rib... what's the next step? Joe will go back on IV heparin tomorrow morning and also begin taking the oral coumadin. He needs to stay in the hospital until the coumadin in his blood reaches the 'therapeutic' level. Then he can come off of the heparin and COME HOME!!! (I would also like it if we could get him to the point that he can stand up without passing out before we bring him home. I know... I am SO picky!)

That's all for today folks. I'll keep you updated, but I am guessing (and hoping) that the posts will be getting shorter as we finally begin the uphill climb towards recovery. Tomorrow is new drugs, PHYSICAL THERAPY, and the quest for the rib will continue.

Thanks again for all your prayers and support... looks like they are working!! :)
Have a good night...
C

SURGERY TOMORROW!!

Yes, it is true! Joe is scheduled to have his rib removed tomorrow (Tuesday) at around noon!

It was a long day at the hospital today. I dropped the kids off at Grandma and Grandpa Steve's house around 6:30 a.m. to make sure that I could be at the hospital by 7:30 a.m. so I wouldn't miss rounds and the surgeon that we've been waiting to meet. (Grandpa Steve dropped/ picked the kids up from school... which was awesome!)

I got there at 7:30... but no surgeon. We kept getting updates- you'll see him around lunchtime, maybe around dinner, probably around 7-8.

So, Joe and I spent the day killing time and waiting. A couple of really good things happened while we were waiting though...

The nurses said it was okay for me to help Joe take a shower. It was QUITE an ordeal, and totally exhausted him, but he felt SO much better to be clean and in a clean gown. I also changed his sheets while he was up, so he had nice clean linens as well.

Paige (Joe's brother's wife) stopped by and brought all kinds of goodies... the best by far being really nice pictures of the kids. Joe has those hanging up in the room now and I think it has really helped him stay focused on his goal- getting home to be with his family.

The hematologist, Dr. Bi, came to see Joe, and shared the good news that all of the testing for clotting disorders that have been completed to this point are negative. There are still some tests to run... and they are still recommending blood thinners for at least 6 months, but- he believes that Joe will not be his patient for long!

Finally, around 4 p.m. I grew tired of waiting for the doctor and REALLY hungry, so I decided to go and get something to eat. So... guess who showed up while I was gone??? The surgeon, of course. He was great though, totally understood that Joe wanted me to be there, and so went to see some other patients first. He then came back to Joe's room at the end of his rounds so that he could talk to both of us.

The surgeon, Dr. Siegrist, is great. He spent a LOT of time with Joe and I talking through all the options and answering all of our questions. He was very clear that Joe is an EXCELLENT candidate for this surgery. He is fit, thin (this is a huge deal, because of the nature of the surgery... makes it easier to get to where they need to get), has a healthy heart and lungs, and his arm is asymptomatic (no pain). Dr. Siegrist says that he turns down about 80% of the people who come to him for this surgery because they do not meet the criteria and he feels that the surgery will not have a good outcome. But, he says that he is totally comfortable operating on Joe and feels very confident that it will be successful. Dr. Siegrist feels pretty confident that Joe will not need a vein 'patch' but instead will have another surgery on Wednesday to either balloon or stint the vein. This will be done in a similar way to the way they destroyed the clot. Recovery from the surgery is 4-6 weeks. Joe will start physical therapy while still in the hospital. The doctor believes that he should be able to go back to work about 10 days following the surgery because he has such a non-physical job. The doctor was clear that it will be awhile before he goes canyoneering again though....

Joe is obviously nervous... and not looking forward to being in pain again. However, he is viewing this as just one more stop on the road to being home again! His goal is to be totally healthy, off blood thinners and have full use of his arm again by his birthday in April... so that is the date we are working towards!

Joe is in the hospital for sure until Saturday- if everything goes as planned. Rib removal on Tuesday, vein repair on Wednesday, and then a couple of days in the hospital to get his blood thinners balanced and in the theraputic range... and then HOME!

Please pray for Joe tomorrow as he goes through his surgery. It is a tricky one, so pray that the surgeon's hands are steady and that it results in a positive outcome for Joe.

Please pray for my kiddos as well... although they have been loved and cared for amazingly during this time, I think they are really starting to feel the impact to their regular lives. Colin especially is missing Momma... and my very observant Julia is starting to be aware of the fact that things are going to be a little upside down for awhile. I am hoping that once I get Joe through the next two days I will be able to better split my time between home and the hospital so things will settle more for the kids.

Thank you again for your prayers and well wishes. We have AMAZING friends and family. I don't know what I would do without all of you!

I will find some way to get a communication out tomorrow immediately following the surgery.
Good night all-
Carrie

Sunday in a Hospital

We learned that things move very slowly on a Sunday in the hospital. We were hoping to see the hematologist OR the vascular surgeon today... but to no avail. Probably Monday morning...

Here is what we did learn today... the vascular surgeon will choose to either do the surgery in the next few days OR in 4-6 weeks. It is totally his decision. Right now they have no idea what the vein actually looks like or how damaged it is because it is compressed. Once they remove the rib, they will be able to determine what they will need to do for the vein. Best case- nothing. Worse case, a patch, where they cut out a section of the vein and put in a 'replacement'. They won't know until they open him up and see what is actually there. The operation is a tricky one. Every person's anatomy is different, and this is a hard area with lots of nerves etc. The recovery from this surgery is hard... similar to a mastectomy in a woman.

Good news... it is highly unlikely that he has this same syndrome on the opposite side. And even if he does have it on the left side, the likelihood that it will become symptomatic on the non-dominant side is very slim.

More good news... we were able to 'sneak' Joe out of the hospital for about 20 minutes so he could see the kids. The nurses really wanted him to see the kids, so they worked with us to get him out of the room even with all the monitors and iv's. We were given a firm time limit of 20 minutes from bed to bed (the nurse told me if we weren't back she was risking her job...). Nana and Papa brought them the kids to the hospital and I think it was GREAT for the kids to see Joe. They were very apprehensive of him at first, but warmed up quickly, and I think it reassured them that he really was okay.

I actually brought the kids home from the hospital, and we've had a good afternoon just hanging out at home. I was really missing the kids, so it was nice to have some time to just hang out and reconnect. They go back to school tomorrow. This is good in some ways, because I know that they will be busy with friends and learning all day and it will keep their mind off of everything. Challenging to go back to the routine of getting them to and from school when I am not at work. As for work- both Joe and I's supervisors have been wonderful- they just want Joe to get better and know that we both need to be focused on that for the next little while.

Joe is in better spirits today... he is feeling better- less cloudy and confused. He watched some TV today, which is a first. We also managed to take a short nap together... let me tell you those hospital beds are not very wide!

Here's a photo of everybody's favorite patient.... and no that isn't bruising on his arm, it's leftover dye from the procedures of the last few days.
Happy Sunday everyone... I will try to update again tomorrow when we will HOPEFULLY know a little more. Goodnight all...
C

Joe Update

Never really thought that I would use my blog this way, but it seems like the easiest way to get information to everyone all at once without plugging in all the e-mail addresses, which seems somewhat overwhelming at this moment in time.

As most of you know by now, Joe was diagnosed with a blood clot at Banner Gateway on Friday morning. Friday afternoon he was moved to Good Samaritan, where he underwent a procedure to insert a catheter up his arm (using dye and live x-rays) and to the clot, where it dripped a super powerful drug called TNP directly onto the clot. The clot was located in his subclavian vein and was 9 centimeters long. He continued to have this drug (along with many others) throughout the night on Friday night. Friday night was very uncomfortable for Joe. He could not move the arm with the catheter in it, he was not allowed out of bed, he was nauseous, and his vitals, including frequent blood draws, went on all night long.

Saturday brought better news. Around 10:30, they took him back in to see the progress on the clot. Amazingly, the clot was gone! The doctor was able to pull out the last few pieces... and removed the catheter from the arm. And then Joe got to eat, which was pretty much one of the best parts of the day for him! :)

The doctors believe that the clot was caused by thoracic outlet syndrome. This is a congenital defect in which either the nerves, the artery or the vein is trapped between the clavicle and the top rib of the rib cage. Joe has probably had this his entire life. The clot has built over time, and the final straw was the canyoneering trip that he took to Zion last weekend... carrying a backpack full of rope put a lot of pressure on that exact spot... causing the final total occlusion of the vein. You can read more about thoracic outlet syndrome here. The cure is to remove the top rib on his right side.

The next question I'm sure is "What's next?" Joe and I would LOVE to know the answer to that. Here is what we know to this point. He needs to have his top rib removed. He is also on a great deal of blood thinners... and this does not go well with surgery. We are waiting to hear from the ONE surgeon who does this procedure at Good Sam. He will come and meet with us either tomorrow or Monday and share his game plan. The downside of doing the surgery right away... after just having a blood clot, it is dangerous to take Joe off of the blood thinners for the several days that he would need in order to have the surgery. The upside of doing the surgery right away is that the likelihood that the clot will reappear is high... and he won't have to go through this again. At some point, they will also need to find out IF he has this syndrome on both sides of his body. We will also need to work closely with a hematologist to determine if there are any OTHER factors coming into play here... Joe will have some extensive testing over the next few weeks to determine if other treatment is needed. He will also be on blood thinners for anywhere between the next three months to the rest of his life. How is that for a range?

Our biggest hope for tomorrow (but realistically Monday) is to get ALL of the doctors in one room at the same time to talk about how to move forward. Joe currently has four different doctors, who as far as we can tell- have never actually talked to each other. Joe requested that this happen before we move forward with more treatment. :)

Good news for tonight is that Joe is resting comfortably and the nurses will not have to bother him quite as much this evening. They have also promised to let him be wheeled downstairs tomorrow and out the front door of the hospital for 5 minutes so that he can see the kids (H1N1... no kids under 12 can set foot in the hospital!). I know that visit is his focus for right now!

Thank you everybody for your thoughts, prayers and well wishes. My kids are doing great... Nana and Papa have stepped in and made them feel safe and loved. Joe's brother Jason and his wife Paige have our Ellie- who is actually doing better for those of you who have been following that saga! Thanks for all the phone calls, e-mails and messages. I am pretty much taking care of Joe and sleeping for right now, so I hope that you all understand my lack of responsiveness. Thank you for all of the offers of help... for right now, we have everything that we need. This may change once Joe is out of the hospital... and if it does, I promise I will let you all know. Thanks again for the huge amounts of love and prayers that have gone out to my family in the past few days.

Okay, off to bed. I hope this post makes sense! I will try to keep you all updated when I have the chance. Love to you all!
C