Nikki's New Lungs

Yesterday, we had a spa day here on the 6th floor.

As you can see, we sometimes take the simple pleasures for granted. You can see the joy from something as mundane as getting your hair washed.

To top the day off, a very thoughtful couple sent a massage therapist to help with therapy. First, she spent some time with Nikki and then she joined us in the Family Lounge to give us massages. It was wonderful.

Many people have asked the address here at the hospital to send a card. Remember, Nikki cannot receive flowers. If you plan on sending Nikki a card, please make sure to spell her name as Nicole Dumonceaux or Nicole Dumonceaux – Malnar. The address here is

Fairview University Medical Center
East Bank
500 SE Harvard St.
Minneapolis, MN 55455

This video says it all.

http://www.youtube.com/watch?v=4yDy4fOExXs&feature=c4-overview&list=UUW5eX9ACIIP-PuoIpXnk8gQ

After walking to the end of the hall and taking a break, she decided these are the “few steps back” she would like to take from now on.

Click to watch the 2nd video.

http://www.youtube.com/watch?v=oGoR8dsstRY&list=UUW5eX9ACIIP-PuoIpXnk8gQ

Nikki had another good day and she’s moving along in her rehab.

She was able to eat once today. Some might disagree with calling it a meal. But if you only have a couple of meals a week, a peanut butter sandwich and pudding is a two course gourmet feast. She just tried taking down some chicken noodle soup and a grilled cheese sandwich, but couldn’t finish the task. We think it was just poor timing. She couldn’t wait for her next order of zofran which would have helped control her nausea. Let’s hope she’s up for another 3 AM snack. We need to get some meat back on them bones.

They are slowly removing the tubes that keep her tangled close to her bed. Her floor looks like a spaghetti factory. The tubes which are inserted into her chest cavity are draining less and less fluid now. We hope they will get rid of these soon. This should help reduce a considerable amount of pain. The Foley catheter was also taken out today. For those not familiar with the term, it’s a tube hooked up to a reservoir that allows you to urinate without getting out of bed. A friend who stopped by today wondered if he could get one on Amazon.

It may seem elementary for most, but Nikki was able to sit in a chair a couple of times today. She also stood for a while. But the big development was taking her first steps! She walked back and forth in her room three times. Not being a parent, I never really understood this first step thing. We have a new appreciation for it now.

The patch she’s wearing in this picture isn’t there to help her sleep. During surgery her eyes were taped shut and we’re told that sometimes dried rheum (eye crust) can cause minor scratches in the eyes. Our girl tried to rub her irritated eye and injured it worse. Now she has a gel to help her corneas heal.

In case you didn’t notice in the sleeping pirate photo, she’s breathing through her mouth when she sleeps. It’s been so long since she’s breathed with the full capacity of her lungs, the muscles in her body aren’t used to functioning in this way. It’s almost as if she’s gulping for air. Her jaw is getting sore. The nurses refused her request to tape her mouth shut. I had to bite my tongue to keep from adding my two cents to that conversation.

We’ve been receiving several wonderful offers to help and we appreciate them. Please remember that Nikki cannot receive any flowers and she needs to be very careful to prevent getting sick. She is just starting to read all of the private messages via my facebook account, her website and email. She is humbled.

She’s still not ready to receive visitors. Talking is very taxing to Nikki and it zaps her of the energy she needs for rehab. We’re set for food deliveries for the next couple of days. The best help for us and the best opportunity to spend some time with Nikki will likely be when we return home. We hope that will be in the next week and a half or so.

The best way to continue to receive updates is by entering your email address at http://www.nikkisnewlungs.com Viewing the site from a mobile device doesn’t always give the option to receive email alerts so you may need to do this on a computer.

Please note that I did receive permission to use that photo. AAARGHH!!!!

It’s amazing to see the effect of a few hours of sleep after getting your body sawed in half and lying awake, in pain for 58 hours.

A lot has happened since my last post. Yesterday evening, we had been kicked out of her room for a few hours to see if that might help her rest. When I returned, her bags were packed and she was about to be wheeled out of the ICU. I asked, “What’s going on?” The nurse informed me they were transferring Nikki up to the 6th floor. Her stay in the ICU was over. Nikki was frightened. She had just woken up from her first nap in days. Her pain was not under control. She still had the blood clot. She did not feel her body knew how to breathe with her new, healthy lungs. And she knew the other wards wouldn’t have the same nurse to patient ratios that were offered in the ICU.

I was told to leave again and check in on the 6th floor in 1/2 an hour when they had had a chance to get her set up and hooked up in her new room. We still needed to transfer our gear from the 4th floor VIP Room up to the more spacious 6th floor Family Lounge. Please note our new VIP Lounge is now in Room 6-106 right outside the elevators. Our cooler is still filled with ice and we’ve got plenty of Annie Saukko’s rigatoni. These new digs also have full size couches! Since the bellhop crew must not be working on the weekend, I moved our belongings. Nikki’s mom, Elaine, went to sit with her.

The nap must have re-energized her, because things seemed to change once she was relocated to her new accommodations. Apparently, the 2 hours of sleep helped the nausea to subside enough to try something other than ice chips for dinner. She was ready to try some broth! After polishing off the styrofoam cup of yellow liquid, she asked to sit in a chair again. Remember, she had only been out of bed once in the last 4 days. The thrill of sitting upright must have given her the audacity to take down a popsicle for desert!

An hour and a half sitting up in the chair wore her out enough to crash once again at 4 AM. She felt confident enough to let me catch a few z’s too. Her nurses were able to locate one of those “comfy” hospital recliners for my snoozing pleasure. My sister, Dana, arrived for an early morning shift at 7 AM and I went up to the lounge to change up my sleeping arrangements.

Upon returning, I had just missed the tail end of Nikki’s 6 minute stand. After watching her wobble from her chair to her bed on shaky knees earlier in the night, I never would have believed she could stand for 6 minutes.

Elaine and I attended a post-transplant caregivers class until 1 PM and then she sent me on my way home. My mom, sister and niece joined me on the patio at Urban Eatery for lunch and some much needed Vitamin D. We then went to my niece’s favorite restaurant, Yogurt Lab, for a nice cool treat. Home was the next stop on my itinerary for some much needed Rosie time. Rosie is our Soft Coated Wheaten Terrier who was very excited to go for a walk and chase squirrels. More napping was followed by a quick shower and a return to the 6th floor at the U.

While I was taking some well advised down time, Nikki took down a peanut butter sandwich for lunch and even had a pudding. As you can see, we like our sweets. We are so happy she is eating and getting some long overdue rest.

Today’s developments were positive, but she still won’t have the energy to accept visitors for a while. Many of you have been kind enough to offer to stop down and even drop some comfort items for our care team in the VIP Lounge. The best way to reach me is via text at (612) 309-3700 or email at travis_malnar@yahoo.com If I haven’t returned a message, please reach out to my sister at danawhiteman@gmail.com or Ben at bsaukko@gmail.com

Nikki is still in pain, but she’s coping with it. The clot is still there, but there’s a plan to address it. She’s finally been able to sleep and recharge her batteries. Her electric attitude was briefly dimmed by a short power outage, but it’s back.

It’s Travis again. We were hoping for some progress today, but Nikki is still struggling with the pain from the incision on her right side. As I mentioned yesterday, this is hampering her recovery in several ways.

She is still nauseous from the pain and hasn’t eaten anything. While she had some juice this morning, that has been it except for a few sips of water here and there. She was actually having some crazy blood sugar swings this morning and was going to do anything to choke down that juice. She thought the half a glass would add to the 4 bags of D50 (sugar water) they were pumping in through her IV. Rightfully so. Her blood sugar had dropped to as low as 30!!! The CF related diabetes seems to be a little difficult to control. All the ‘roids, meds & trauma have her sugar levels on a runaway roller coaster ride. The nurses are doing their best to control it, but she knows her body better than the charts know how she reacts.
They tried to put in a NG tube (feeding tube) this morning. No luck. Just pain. So they wheeled up this high tech ultrasound machine where they put in some fluoro dye to help place the feeding tube. According to the doc, “they’ll get it done with this thing.” They didn’t. Our girl doesn’t have a lot of excess fat to burn if she’s not eating for 5 days. She needs to start eating.

She can’t get comfortable because of the incision pain and some muscular pain in her back that’s also proven to be uncontrollable.
No comfort. No sleep. No good.
She still hasn’t slept since they took her off the propofol Wednesday morning. They kicked her mom and me out of the room. We’re hoping this will help her sleep a little now.

Since the docs and nurses are spending most of their time trying to control the pain and comfort her, she’s had no time to work on her physical therapy. Other than the one time in the chair yesterday, she hasn’t been out of bed. We need her to start moving around.

They have a plan, but haven’t begun to address the blood clots.

On the bright side, they removed 3 of the drain tubes protruding from her chest. They were draining the excess fluid in her lung cavity. She’s down to just 2 drain tubes now. Hopefully, this will help reduce some of the pain.

She’s been doing great with her lung exercises and her oxygen stats are consistently at 99% or better. She’s supplementing with 2 liters of oxygen for now. That’s pretty good they say.

Clinically, they think the new lungs are doing well. They just need to address those other issues to get her healing quicker.

The outpouring of messages and texts is overwhelming. Please don’t be offended if we can’t respond. Your messages are GREATLY appreciated. The Dumonceaux and Malnar families feel blessed to have such wonderful support!

Hey gang,

Ben Saukko the ‘Guest Blogger’ here. A lot of you have been asking about visiting the hospital and what you can do to help, so Trav and I thought it might be a good idea to drop a note and give everyone some guidance on visiting.

It’s really better if they don’t have any visitors at this point until Nikki gets out of the ICU. They are restricting access to Nikki and she needs rest and can’t have a lot of people coming in and out. Close family, including Nikki’s dad and Trav’s mom, have only been able to see her for a quick minute. And everyone, including Trav, routinely gets kicked out by the nurses because they need room to work.

Trav is really busy as well, and when he gets a few minutes break he needs to rest and maybe try to catch a 20 minute nap. He hasn’t been sleeping much at all and is really sleep deprived right now.

It is a tough time for Trav and Nikki right now. Their accommodations are not the best– small room and crappy waiting room. When she gets out of ICU and into her recovery room things will be a lot better. They will have a shower for Trav (I don’t think he’s showered yet) and probably a little couch or bed for him to sleep on.

When Nik gets out of the ICU they will likely be more open to receiving visitors. Fifteen minutes is a good amount of time for a visit, but use your judgment based on what is going on while you’re there. Also, if you text Trav and ask when is a good time to stop by, he’ll probably tell ya. If you visit, keep in mind there are a lot of very sick people there who need rest and are very fragile and susceptible to getting sick. Please leave your kids at home and try to be quiet and respectful at all times.

Also, Trav hasn’t been eating much and he’s really only had like one or two proper meals all week. You may want to offer him a good meal, either that you bring from home or from a restaurant. If you drop by some food for him or the family, please bring it to the 4E Family Waiting Room, not to Nikki’s room!

One more thing– Annie and I will likely be coordinating a ‘Care Calendar’ for visits and meals when Nikki gets out of the hospital. That will give people an opportunity to see Nikki and provide some much needed support during her aftercare. More to come on that later.

Thanks, guys. I know Trav really appreciates all the concern and support. We’ve got a great group of friends and it never ceases to amaze me how everyone rallies when we have a friend in need! Feel free to contact me if you have any questions.

Sincerely,

The Busboy

Sorry for the delay in posting. I think we were all awestruck when Nikki started taking her first breathes yesterday. She was ahead of schedule on her recovery and they were hoping she would get out of ICU today. I’m still having trouble trying to comprehend how amazing it all is.

Well, we knew there would be a few bumps on the road to recovery.
Nikki has struggled these last 33 hours with severe pain from her incisions. The pain management team inserted nerve blocks in her back to try and dull the pain. During the surgery, they open her up like a clam shell (term they use). She’ll have a scar completely across the front of her chest and around her sides where you would typically find the lower part of her bra. The left nerve block was able to keep her pain at a reasonable level. She has been having trouble with the right block. Because of the pain, she’s been nauseous. Because of the pain, she’s been unable to do very much of her therapy. Because of the pain, she was unable to sleep for the last 33 hours. This has set her back little. But just a little.
The pain management team was focused to get this problem under some level of control today. After trying a few unsuccessful alternatives, they thought the nerve block could possibly be inserted a little too far into her back. They thought it might be dumping medication directly into her chest cavity. If it was, it might be draining through one of the 5 tubes sticking out of her chest. They brought in an ultrasound and pulled it back a fraction of an inch. It helped. She’s now at a pain level of about 5 on a 1 to 10 scale.

She was able to hit a few milestones today after they were able to reign in some of the pain.
Her nurse was finally able to wash her hair. It was looking like a birds nest after lying on her back for the last few days. I took some pictures. She can share them later if she wants. I won’t do it.
She also was able to get out of bed and sit in a chair. Trust me, it’s an accomplishment.

Nikki has also had a history of blood clots. And those are bad. They can be REALLY bad. Of course, she has a clot where the Hickman IV line and Swan IV line were both entering her jugular. They’ve pulled the Swan line, but she’s receiving A LOT of IV medications. They must keep the Hickman. The clot has caused her entire arm to swell up. The people in the industry call it edema.
They’ve wrapped her arm with a special sleeve to try and reduce the swelling.

As many of you know, it’s probably better if you never have to know any of these terms. Unfortunately, some of us learn them sooner than others. As you’re sending all of those good vibes our way, please don’t forget to count those blessings that you have under your own roofs.

Thank you.
Travis

She’s breathing!
At the crack of noon, they pulled out her breathing tube and she was breathing on her own! Well, with the help of the new lungs.
It was awesome!
Earlier today, they did a bronchoscopy. Since everything was looking good, they decided to extubate.
They weaned her off the propofol and she started to wake up around 10:30 A.M. She started communicating with hand gestures and then moved to sign language. She’s going to have to let me know where she learned this skill. Eventually, she was spelling letters on her pillow and then quickly moved to the shaky pen and clipboard method. I told her we should proudly display this artwork on the refrigerator.
After taking the tube out which was controlling her breathing, she took a few deep breathes, coughed a few times and she was inhaling oxygen on her own. They will supplement with O2 through a nose cannula for a little while.
Though she’s pretty hoarse, she’s talking now. A lot. I keep trying to tell her to rest, but she has been a little afraid to take a nap. When you sleep, your body naturally takes shallower breathes. She wants to make sure she’s really exercising those new lungs.
She’s still in ICU and will stay there for at least another day. She asked if I would step away and send a quick post. She wanted to make sure I thanked everybody for all of the prayers and support for both our family and the donor family.
She can’t have visitors yet and the rest of the gang is all hanging out in the VIP Lounge.
Will update you later this afternoon.

Trav here again.
Nikki is still sedated.
She’s on propofol. Yup, the same drug forever linked to Michael Jackson. Her nurse will suspend her dose for a couple of minutes to wake her up just a little to monitor her responses. She smiles and nods and is very good at squeezing hands and wiggling her toes. I went to high school with her nurse, so of course she’s good. Thanks Maureen.

Her surgeon visited and said he was pleased with her progress. They plan to do a bronchoscopy tomorrow and remove her tube to see if she can breathe on her new lungs. We know people want to stop down and see her, but she’s still not ready for visitors until she’s out of ICU. That might not be for a few days.

If you’re in the neighborhood, you’re welcome to stop down to the hospital and visit our VIP Room in Family Lounge #4-469 in wing 4E at Fairview University Medical Center. We’ve got cheese & crackers, nuts, zucchini bread, water, iPads and decks of cards. I’ve included a picture of a few of our VIP’s taking advantage of the Hi-Fi system.