Nikki's New Lungs

I am happy to be posting personally. A big thank you to my sweetie, Travis, for posting fabulous updates. I love reading his posts and yes, he really did have permission to show the hideous picture of my chin.

I have a new battle scar. It is larger than I was expecting. You can see it is a conversation piece in a v-neck t-shirt. I have been in quite a bit of pain. These first couple of nights I have been lacking in the sleep department. I am not one to take narcotics, but when it becomes 4:00am and I’m still wide awake from being uncomfortable, I have finally given in and taken the good stuff. Tonight, I am changing my theory and taking a pill before I get into bed!Today, Lauren, passed 5th grade. Fortunately, We were able to attend her graduation. We are proud of her as next year she will start 6th grade at middle school.I have my second surgery scheduled for this Thursday afternoon. The doctors are going to attempt to place the stent again. I am so close to having this process finished.

The great news, the last couple of nights we have been able to take a walk. I am walking slower than normal because of pain but a walk does a body good. I was informed before I left the hospital that I have some fluid build up around my lungs. Not only does pain cause me to take more shallow breaths but those narcotics also contribute. My doctor was not worried, it is common after some surgeries. It feels like a dagger is going in my shoulder blade if I take a deep breath, cough, or the worst, sneeze!  The fresh air, chatting with neighbors, and the sunset views have been spectacular. Put those together, and it sure helps a girl tolerate her pain a little easier.

Nikki had been given her fair share of lemons this week. Lemons were coming at her from all directions.  Except when she needed actual lemons to help open up her salivary glands.

She was able to come home this afternoon. With a little help from some medication, she was able to “pass” her final hurdle to be discharged.  She’s still in pain and her nausea isn’t gone, but it’s certainly better. Her oxygen stats have fallen when she’s sleeping so she will be on a small dose of oxygen for a little while.

She asked me to make a run for the border on the way home. To go from chicken broth to Doritos Locos Tacos is quite the leap, but she was ready for it.

The glands are still a little swollen. Thank you for the offers to bring lemons. Our friend, Julz, was quick to bring the lemons and a few MRE’s for our freezer.  She also filled our flower pots. With a fresh supply of the little yellow fruit, I whipped out my (google) cookbook. As they say, when life gives you lemons, make lemonade.  So I found a good recipe and broke out the crystal pitcher to celebrate. We rounded it out with cheeseburgers and steak on the grill.

I knew it was going to be a better day.

I’m a little late, but Friday was D-Day.  It was the 70th Anniversary of the day the Allied Forces stormed the beaches in France. We must remain forever grateful to those soldiers, all those that came before them, after them, and those who continue to fight for our freedom.

D-Day also has another special meaning to our little clan. We affectionately refer to it as Dumonceaux Day. On June 6, 1962, Nikki’s parents were married. Happy 52nd Wedding Anniversary to R.G. and Elaine.

Today wasn’t much better for Nikki. The vein blew on one of her PICC lines. So they dropped her to one I.V. medication.  The others were switched to oral delivery. We’re hoping this last I.V. will work until she goes home.  We think that will be Sunday.  They also switched her to Tylenol 3’s for pain.  We’re hoping this will reduce some of the nausea.

As of Saturday night it wasn’t helping her appetite. She was only able to eat a little bit of chicken broth. And now her salivary glands are blocked and swollen. The Doctors have told her to eat lemons, to stimulate secretions.  There weren’t any lemons around. So I went to the gift shop and picked up anything I could find….. lemon cough drops, Lemon Drops, and Sour Patch Kids. As you can see from the picture of her chin, they didn’t work.

I did get permission to post this!

Which reminds me of another fellow with a big chin, Sir Winston Churchill, who was a key figure in D-day.  Although he was slightly misquoted,  he will be forever attributed to saying”…never, never, never give up….”

Nikki doesn’t give up and that tenacious attitude has taken her this far. Please know that all the kind messages, thoughts, prayers, juju, pixie dust, white light & positive energy everyone has been sending help so much. Now, if we just had some lemons to see if they would open up those glands and get rid of that Churchill-esque chin.

Nikki had another sleepless night.  The Doctor’s orders require the hospital to administer all medications.  I think this is the CYA addendum to the Hippocratic Oath that the malpractice insurance companies have added.  It’s easy to understand for most people.  And they certainly don’t want to be accidentally double dosing medicine.

Because Nikki is diabetic, these rules require the hospital to deliver insulin as prescribed by an algorithm. This method likely works for the vast majority of patients. Not our girl. The original orders were for 2.5 units (mG?) per hour. We know the algorithm doesn’t work for Nikki so we had them drop it to 1.2 units per hour. We still thought that might be too much.  Guess what? It was.  Within 2 hours her glucose level dropped from 229 to 79 – at the reduced delivery rate.  79 is low.  But when it’s at that level and dropping that fast, we’re lucky we caught it.  Imagine how fast she would have dropped if she had been receiving double the dose based on the algorithm.

This was after a couple of conversations with the attending physician who was adamant about her using the chart. So we had the insulin drip suspended and had to passionately convince the staff that she would be better monitoring on her own using the Omnipod delivery system.  She’s been using this system for years.  While nothing is perfect, she’s been able to understand the nuances that work for HER. The Doctor may not have been too happy with her as we also had to encourage them to re-administer her anti-rejection drugs after she threw them up about 20-30 minutes after taking them.

The Doctor did agree with the self administered glucose monitoring as long as the nurse was OK with checking Nikki’s blood sugars every hour.  Imagine being woken up every hour when you haven’t slept much in the last 2 days, you haven’t eaten in over a day, and you’re nauseous from the pain and the medications.  Oh, and they stick your finger with a needle.  Now go back to sleep!

Once again, the staff, and especially the nurses have been great. We’ve been very happy with the care on the entire 6th floor our last couple of trips here.

She did nap for a bit today.  But she’s still in a lot of pain and is nauseated. She was able to take down 1/2 a PB & J sandwich and a little bit of chicken noodle soup.  She had to stop eating the soup because she thought it “tasted like she was eating a bunch of ground pepper”.  After tasting it myself, I thought it was one of the blandest soups I’ve had in a while.

We were able to see Nikki after her first surgery.  She was in good spirits, but was feeling a bit nauseous. They were going to prescribe medication to control it. After a little while in the hospital room, she was being summoned down to Interventional Radiology.  Now that her rib was taken out, we were moving in the right direction.  They were ready to place the stent.

I went to the operating room with her and the Doctor explained that he was going to thread a wire through her groin, up through her heart and create an opening in the collapsed vein in her shoulder and chest area.  Once he did that, he explained that he was going to place a stent in the vein to keep it open.  He would then insert another balloon into the stent. The way I understood it, he would use the balloon to create pressure on the stent and press it against the vascular wall to help keep it in place.  It sounded like a plan to us.

Unfortunately, everything didn’t go as planned.  Two of the most seasoned Interventional Radiologists worked on Nikki.  Neither one of them could get the guide wire through the occluded vein.  When an angioplasty immediately fails to keep a vein open as hers did a few weeks ago, normally they’ll bring the patient in right away to remove the rib and place the stent.  Because she had infections growing in her lungs, the Doctors wanted to get them under control before they would attempt this surgery.  The theory backfired.  Because we had to wait a few weeks, the scar tissue in the vein became extra hard.  This prevented them from being able to push through the blockage.  The guide wires were actually exiting the vein and into the site where the rib had just been removed.  Theoretically, this could have been a path for the blood from the arm to exit out into the new cavity and start pushing fluid around her lungs.  The Doctor explained that this was a possibility, but it was unlikely.  Still, it was pretty scary.

They plan to allow the area to heal for 1 to 3 weeks before they try this procedure one more time.  The Doctor explained that there is about a 20-30% chance it will be successful the next time they attempt the procedure.  If it fails, they’ll need to insert a new vein into her chest and bypass the damaged one.  We’re not sure, but this sounds like another invasive surgery.  Let’s hope they’re able to tunnel through the scar tissue the next time they try.

We included a picture of her in her bed.  You’ll notice the oxygen hooked up to her nose because her O2 stats had declined a few times when she was lying on her back.  You’ll also notice the blue vomit bag.  That was not the first blue bag she used today.

Nikki was really disappointed about the outcome of this surgery. She kept saying that she knew it was going to be a bad day from the moment it started with the problems of getting an IV placed.  At the beginning of the day, we had hoped that this blockage was going to be gone.  We knew the rib removal was going to be very painful.  But the vein needed to be opened.

Instead, she had to endure the multiple foot poke fiasco, a painful surgery to remove a body part that will take weeks to heal, and she still has an occluded vein in her arm.

It’s Travis here, back for a guest appearance while Nikki is on the heavy meds.  

The day didn’t get off to the greatest start.  Since Nikki has had so many IV medication treatments throughout the years, most of her veins are SHOT!  She has no visible veins at the surface of her skin which makes it very difficult to thread an IV.  They needed to get a PICC line placed so the lab could do blood work and they could administer the anesthesia to knock her out.  The usual workaround is that they need to call up the Vascular Access team which brings an ultrasound machine.  With this, they can normally find a deeper subcutaneous vein to place the line.

As Nikki’s luck would have it, they were short staffed today.  She was told they couldn’t wait for Vascular Access as the entire surgical team was ready to go. After getting poked in her arm without success, they brought in the first anesthesiologist to try to thread a line in her foot.  These guys are good.  With diabetics, it’s generally not advised to use the feet for drawing blood let alone administering medication via a larger, more invasive IV needle.  A diabetic’s blood vessels at their extremities are smaller and more fragile and don’t provide the blood flow that most people are privileged to experience. But they needed to get her into surgery and they needed to place the IV.

The first anesthesiologist failed.  And so did the second.  Getting poked in the foot involves a lot of pain.  Especially when the needles are a little bit larger and they are so near the surface of the skin where there are more nerve endings.  We’re not talking about a pin prick here.  They need to burrow into a tiny vein.  Nikki normally handles this well.  But after a few sticks, the tears were flowing and she needed to call it off.  The anesthesiologist was disappointed he couldn’t get it done and she was pretty upset.  This was not how the day was supposed to begin.

So they needed to call in Vascular Access after all.  They were now behind schedule. With the entire surgical team waiting, they called in a guy from the bench. Actually, he normally does administrative work for the team, but Scott was a very worthy pinch hitter. He had the line threaded in a few minutes and the anesthesiologists came back to whisk her off to surgery. The smiles were back as she was happy this obstacle was now behind her.  Knowing she would be going into surgery in a much better frame of mind was good for all of us.

After a little over two hours in the operating room, Dr. Molina came out to let us know everything went well. They removed the rib along with the muscle and tissue around it.  There will be a drain placed in her chest to remove the fluid that is accumulating.  She was on her way to the recovery room.  From there, she will go to X-Ray and then they’ll place the stent.

And we will begin the wait for the next update.

Thank you all for the messages, thoughts and prayers.

Will post again later today.

This last Saturday we attended our friends, Rob & Erin's, wedding. On the way home, we couldn't help but stop in Darwin, Minnesota to see the largest ball of twine built by one man.

With all the rain we have had lately, we went to Minnehaha Falls to see the roaring water. While I was on oxygen, we would never go there because of all the stairs. if anyone wants to know, there are 109 of them. Now, we were able to see it all and even hike down to bridge 5 where the creek meets up with the mighty Mississippi River.Tomorrow is my surgery. I need to check in at the hospital at 7:45am but surgery is scheduled for 9:45am. I believe it will last about three hours. I will have Travis post an update.

I have been busy. It started last week with a bike ride with Dana & Aimee downtown. We biked along the Mississippi river, went to lunch, and stopped for ice cream. The river is very high right now, I got a great panoramic photo to capture the fury of the rapids.We had a great holiday weekend that was jam packed. Our friends Paul and Jess stopped by on Friday with their new boat and took a bunch of us for a little cruise. We then came home and roasted hot dogs and marshmallows by the fire. Saturday we had a few more friends stop over for a visit then went to the neighbors for a BBQ. Sunday we went out for dinner and ran into some friends we have not seen in a long time. We ended up dancing the night away. Another advantage of my new lungs, being able to dance! I was jumping up and down and I remember thinking, wow, I am not out of breath. Hope everyone had as fun of a weekend as we did.Last night we took Lauren to the musical Shrek at the Children’s Theater for her birthday. Her birthday is really in January but since I was not allowed to be in large groups at that time due to my low white blood count, I checked out the schedule and we waited to see Shrek.Speaking of birthday’s, yesterday was my mom’s birthday. Happy birthday Mom! We are going to celebrate this evening at dinner.And now, a health update…My lungs have been feeling fantastic. Although, my cough has come back slightly. They started me on a different antibiotic yesterday. Until I have my sinus surgery, it seems to be a never ending cycle of mucus draining into my lungs. Last Tuesday also marked the nine month anniversary of my surgery 🙂

Monday I met with the vascular surgeon. The procedure I need to endure is called a first rib resection and scalenectomy. They are going to remove a portion of my first rib and some of the scalene muscle then place a stent to keep the vein open. They can’t place a stent without removing these parts because of the location under my clavicle bone. Anytime I would raise my arm above my shoulders it would crush a stent. Yesterday they confirmed my surgery date for next Thursday, June 5th. I will be in the hospital a few days.

I am not looking forward to the procedure. The surgeon told me it is very painful. I think when you are told you will be using I.V pain medicine instead of oral medicine you can count for an unpleasant time. I also understand it is about a six week recovery. Just in time for summer right? There is an upside to all of this though. I will no longer have a tingly arm, a cold hand, or a white pinky and ring finger because of poor circulation. Also, I will need to take blood thinners for another couple of months but, it will mean coming off blood thinners forever! That is the biggest advantage.

I took a couple of golf lessons about eight years ago. I found it was too much for me to manage golf clubs and oxygen so I decided I would wait until I could breathe to try again. That time has finally come! Travis wanted to hit some balls on Saturday and I mentioned I wanted to join him. It just happened we met up with a friend who is a golf pro. I was able to receive a free lesson! I haven’t twisted my body like that since my surgery so after about fifteen minutes I did have to stop because the area around my incision started to hurt. My goal this summer is to hit the ball well enough so I can actually play on the course.

Yesterday one of my girlfriends, Aimee, asked me to the Twins game along with our friend Lindsay and her son Cooper. What a beautiful day to sit outside and watch a ball game. It’s an added bonus not having to lug around a huge oxygen tank to games anymore!

Still no news when either one of my surgeries will be scheduled. My cough is significantly better and I spoke with my doctor’s nurse today. She is going to ask if I am all clear to get things rolling.