Happy New Year's Eve!

Quick post...we want to wish you all a very happy and healthy new year! We look forward to a new start to 2014! Thank you all for the continued love, support and prayers.

Love,
Matt, Cori, Riley and our hero, Nolan

Three Months

Nolan a couple weeks after we arrived
at Children's Hospital of Pittsburgh.

It is hard to believe that we have hit the 3 month mark since all of our lives changed. Of those 3 months (91 days to be exact), 87 of those days have been spent here at Children's Hospital of Pittsburgh. 77 of those days Nolan has been listed for a heart transplant. It seems like forever ago that we walked into the CICU. We felt so out of place and everything was so much more...intense then Hershey. We knew this was the place for us. I am thankful for each institution we have been in. Our transfers between Susquehanna Health's Williamsport Regional Medical Center, to the Children's Hospital at Hershey Medical Center and finally to Children's Hospital of Pittsburgh got us to where we are today. Nolan has a chance to live. A family is going to make the most selfless decision and let him live on with their child's heart. It is beyond powerful. We will never forget that child or how precious life is. Taking things for granted is a thing of the past. Being a better person, family member and friend is what makes you truly a rich person.

Nolan is continuing to do fantastic. We had a day filled with activities! He had his VAD dressing changed, broviac dressing changed and physical therapy.
During his therapy session we actually got him out of bed and onto a mat on the floor. We had to wake him up...so honestly, it didn't go so well, but we are going to continue working on it. She did sit him on her knee and let him put his feet on the ground so he could put some pressure on them. It was so cute and crazy to see him in a vertical position! It was adorable! Next we worked on moving him from left to right on his back. This movement gets him prepared for rolling once the VAD is gone (which he was doing prior to use getting here). We had a good session and have some new ideas on how we can provide him with some more endurance, so I am excited.

Tomorrow is NEW YEARS EVE! Matt is coming and I am so excited. It will be a great start to what I hope is a great year. I hope everyone has some fun plans to ring in 2014 with your friends, family and love ones. One of our best friends, Melanie and Vince Myers, are due to have a baby on January 1! I hope to be showing a picture of a new baby SOON!

ONE MORE DAY CLOSER!

#nhos
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CHECK OUT UPCOMING NOLAN FUNDRAISERS IN FEBRUARY!

Smiley Sunday

Day 76. Nolan has really been quite the flirt to the lady nurses today. He is very animated and happy. I have actually been a little worried the past couple of days because he has been sleeping a lot and it looked as though his eyes were vibrating laterally. He also has been having a lot of PVC the past couple days, so I expressed my all my concerns to the nurses and a CT (cardiothoracic) CRNP last night. This morning neurology came by to evaluate Nolan. He seemed to be doing well and was following left to right, moving his extremities and his eyes were dilating appropriately. His eyes could be vibrating due to the sedation, however they were making sure he wasn't having a seizure of some sort. Because one eye wasn't seizing along with the same side of his body, they felt he was OK.
We will keep a close watch on him and if anything continues, they would follow up with a CT scan. Quite honestly, I think I am just overly paranoid. The neurologist assured me that Matt and I are who knows him best and it's OK to be overly cautious. So, that made me feel good that they don't think I am a TOTAL basket case. As for the PVCs, recently they increased his dose of beta blockers, so it may take a day for that to level out. I already notice the PVC's decrease...so again, crazy lady over here. I know we are getting so close, I don't want anything to get in the way of our big day!

We had our routine visit with our CT surgeon, Dr. Wearden and transplant surgeon, Dr. Miller. Every time they walk in the room I get some excitement wondering if they are going to deliver the news...especially Dr. Miller because she is apart of the transplant team. Just can't imagine the moment. I try to, but...this isn't normal life! You don't meet many people that go through this, so it's truly unimaginable.

Nolan and I had some visitors again from home! Pete and Erin Ruhl, friends of mine from Williamsport, are in town for the holidays visiting family. Erin and I were pregnant together and they also have a beautiful baby boy, Burke. I think they were shocked at how big Nolan is! It was wonderful to see them, so thank you guys! We are excited to see our boys play together someday in the near future!

I wanted to close today's post asking for you all to send some good vibes and say some prayers for Faith. Her parents, Nathan and Jamie Polk, have been through a tough year. I have talked about Faith in the past, but she has four complex congenital heart defects and a genetic defect called Heterotaxia. She is on the heart transplant list and was sent back down to the CICU yesterday because of seizure like activities. We have built a bond with this family and want the best for them and Faith. You can read more of their story at http://www.caringbridge.org/visit/jamiegibson.

We need some miracles to happen here at Children's Hospital of Pittsburgh - maybe TWO tonight, one for Faith and one for Nolan. :)

ONE MORE DAY CLOSER!

#nhos
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Day 75

Happy Saturday! It was a pretty quiet day here in Pittsburgh. I spent the day watching basketball, doing work, got some laundry done and played with Nolan. The past two days Nolan has been pretty sleepy. I am not sure if it is because of sedation or that things were pretty busy over the holidays which has him worn out. He got a bath, I had him sitting up a little and I even played some Baby Einstein for him from my tablet. I am going to ask about other activities he can do on Monday when OT and PT is back. We have one thing we really do when he is awake, so I think he is getting bored! He is still smiley and fun to be around. Nolan's smile melts my heart. He is such a tough cookie.

Today was the McLaughlin Christmas, so Matt and Riley spent the whole day at Meena (Matt's mom) and Grandpa's house. Matt's littlest brother, Blaine, is in town. He lives in Colorado, so I know Matt really enjoys when he is in town. Matt and his mom reported that Riley had a great day with the entire McLaughlin family. I think it was a nice day (I haven't been outside!), so she got to ride a new bike around, play in what snow is left over and was allowed to eat as many cookies as she

wanted. (She is a bit of a cookie monster.) Matt's mom and Riley bake a lot, so I got them aprons! Matt's mom's says "Meena" and Riley's says, "I love Meena!" I thought is was a good gift :)

So, day 75. My anticipation for this surgery is on ultimate high. I don't want to get my hopes up about anything, but naturally, I can't. It has been a long time. I fear something is going to happen and we are going to have another set-back. I just want to get this part of the process done so we can move forward with the next chapter. You know when you have a vacation coming up and the last week before vacation feels like a LIFETIME? That is how I feel...except, I don't know what day the vacation starts! Tonight? Tomorrow? Next week? A month from now? It is a grueling feeling and hard to focus on anything else. (Which is one of the reasons why I did work today!)

I am still in Nolan's room. I actually stayed through the entire night yesterday. Not sure if I will tonight. I am going to head over to Ronald McDonald House and see how I feel.

I hope everyone is having a good weekend. The end of 2013 is quickly approaching!

ONE MORE DAY CLOSER!

#nhos
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CHECK OUT UPCOMING NOLAN FUNDRAISING EVENTS

Back to 8a!

Well, we are out of the CICU and back in the acute cardiac care unit. So far things have been uneventful. I am still in Nolan's room and plan to sleep here for awhile. Being on this floor you do not have the one on one nursing that we are used to in the CICU. So, until I feel comfortable up here again, I am probably going to be spending a lot of time here.

Nolan is continuing to do great. He is so happy, smiling, laughing...it is so great to see and I hope things continue to stay this way until we get the call. Today marks day 74 on the list. As much as I do not want to feel a little disappointed, I was really hoping that we would hear something over the time our families were here. BUT, it will happen when it's the perfect heart and the perfect time. So...any day now.

Nolan did have his broviac placed yesterday. The procedure went well and now both of his arms are free to flail about. The broviac is on his left side under his collar bone. He came out of the procedure happy (and high) as a clam. Everyone assured me he would sleep a lot, but he was up a good amount of the day. I think his schedule is a little off because he has been sleeping a lot today. We'll see how tonight goes.

Yesterday I spent the day at the hospital with Nolan and my parents, Matt, Megan and Riley went to the Carnegie Museum of Natural History to see the dinosaurs. There was an area where they taught Riley how to excavate fossils. They said Riley was so interested! So maybe we have a little paleontologist on our hands!

Everyone left early this afternoon. Matt and Riley will celebrate Christmas with the McLaughlin's tomorrow. My sister will get to spend some time in the Muncy area...she heads back to Chicago on Monday. Tuesday Matt will be coming here so we can spend New Years together. I am hoping to go out to a nice dinner together, then ring the new year with Nolan. Riley will be with Matt's mom and dad. I am PRAYING that 2014 is a better year. I know many people that had hardships through the year and, well, ours also wasn't great...however, we did receive our miracle boy. I would never change a thing and we'll fight for him for as long as it takes.

I had a surprise visitor from home today. Tamara Patterson-Taylor, an old co-worker, was in the area to drop her daughter off at school. It was so kind of her to go out of the way to see me and Nolan. Seeing a familiar face in this setting is both comforting and strange. But, Tamara, thank you so much for your kind words and big hugs. I truly appreciated it. :)

WELL, I am going to pull up Netflix and watch a bad movie. I hope everyone had a nice holiday week. It is hard to believe we will be heading into a new year in less than a week!

#nhos
teamnolan.weebly.com 

Nolan's First Christmas

Well, I would have never guessed that we would spend any of our children's first Christmas in a hospital. But WOW. Children's Hospital of Pittsburgh REALLY treats all the kids like gold here on Christmas day. When I walked into Nolan's room this morning there was a BIG bag of gifts for Nolan and also a bag for Riley! The Ronald McDonald house dropped off gifts as well! Between our presents, the hospital, Ronald McDonald, my sister and parents...Riley made out. (and Nolan!) So, we feel very blessed that we all got to be together. Even Matt's parents and Collin came up for the day. Nolan and Riley are very lucky kids.

A quick update on Nolan. He is still doing fantastic! Today is day 72. Everyone is itching because we all know we could get a call at anytime. It is amazing how the staff here becomes a part of your life. They care about us, Nolan...we care about them and all the other families here. What pains me is a family just came in last night. I have had several talks with the dad because he is in shock and disbelief that his 7 month of is suddenly fighting for his life. I reassured him that there's no better place he could be but here. His son had surgery last night and is doing well. I am not sure the dad has slept yet, but, I can see the series of emotions he is dealing with and flashback to those days. We are 5 days shy of hitting our 3 month mark. Seems like yesterday we were being Life Flighted to Hershey. BUT, I feel our journey will be taking a new twist shortly. We still have a LONG road ahead of us, but we are going to make it!

Anyway, I digress. I was talking about Nolan, physically. Tomorrow Nolan will be getting his pic line removed and a Broviac line placed. This is because of the infection he had in his pic line and we will need this following his heart transplant, so they decided to do it now. The line will sit outside of his chest and that is where all his meds will be administered. Maybe we will go home with it? I am not sure of that yet. I am nervous for the procedure just because he has been doing so well. BUT, it is a simple procedure. They will not put him completely under, but give him a good amount of sedation to complete the process. THEN his arms will be FREE! He will love that :)

Well, I am at my parents apartment (hotel) and we are getting ready to eat our Chinese dinner. True Christmas Story fashion. We traditionally do lobsters and steak...MMMMM...I miss the "monsters." (That is what Riley calls them, and so did Megs and I!)

I want to thank everyone who follows our story day in and out. Your love, prayers and support means so much. All of you is what keeps me going on bad days...and even good. I CAN NOT wait to bring you the "NEWS." The anticipation for this is...INTENSE! I am also so excited because one of my best friends, Mel Myers, is due to have a baby ANY DAY! A start to what will be an amazing year for all of us! I can't wait to see 2014 :)

HAPPY HOLIDAYS FROM THE MCLAUGHLIN AND EVERETT FAMILY! AND...ONE MORE DAY CLOSER!!!!!

PS: Matt got me an amazing camera for Christmas. One of our New Years resolutions is to really capture our children's lives so we never forget any of it. So, great pictures to come. (Thank you, Matt...love you!)

#nhos
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Packed and Ready

Finally. Got the house as organized as it's going to get, Riley packed, myself packed, presents together...and I am sure I am missing something. I am going to be in Pittsburgh for about 10 days, so I had to make sure I packed enough clothes. I am starting to become a pro! What used to take me literally hours to do, I can get myself and Riley packed in about an hour. I am sure my husband is rolling his eyes just reading this. :)

WELL, Christmas will be here in 24 hours. Hard to believe. I have to admit it has been a tough holiday season. I think I just get a slap in the face sometimes and think, "is this all really happening?" And instead of throwing a pity party for myself I am working as hard as I can to think about all the positive things in life. (It is hard sometimes!!) Through this horrible situation, I have met some amazing people and have experienced the power of giving. After we get through this, my husband and I can not wait to pay it forward...and continue to for the rest of our life. We have had many wonderful organizations reach out to us to graciously lend a hand of support. I am in awe of the generosity of others. Whether is words of support, homemade decorations for our room, bracelets, monetary donations, dinners, hugs, fundraisers...it all means the WORLD to Matt and I.

Nolan has had an excellent week. He continues to do well in both occupational and physical therapy. He is gaining weight and is very animated and playful. Today they did an echo of his heart and had his VAD dressing changed. I think the biggest news is that he is having his pic line removed and they are going to place a port in under his collar bone. He does have a pic line infection that is currently being treated (has been for over a week). They feel it's best to remove this line and do the port since he will still need it for some time and it is less risky for infection. This means his arms will be free! I am sure he will enjoy that. The port will be placed either Thursday or Friday. Should be a pretty simple procedure.

Well, today is day 70 (almost 71!); hard to believe. Trying to stay calm and tell myself that this will happen when it is meant to happen. It would be a wonderful start to the new year! Tomorrow is a busy day. I will leave work at 12, come home, Riley and I will hop in the car with my parents (maybe I will nap!), then we'll be meeting up with my sister, Matt and Nolan! Christmas day Matt's parents and brother, Collin, will be joining us for the day. I am ready to see the family!

From my family to all of yours, we truly wish ALL of you and very Merry Christmas! I hope Santa brings everyone what they want, and most importantly, give your family members lots of hugs and enjoy each other!

ONE MORE DAY CLOSER!

#nhos
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Christmas Is When?

Wow - another Sunday comes to an end. Between the crazy weather we are having here in PA (it was in the 60s today) and not being home a lot to focus on the holidays, it is so hard to believe that Christmas is in three days. I am looking forward to some family time and getting back to Pittsburgh to see Nolan. He has had an amazing couple days. Matt said that he has been very happy, strong and all around healthy. They lowered his methadone a little bit again today and has responded positively. I am pretty sure tomorrow marks day 70 on the transplant list. I am beyond anxious. I am trying to remain patient and tell myself that the PERFECT heart will come at the PERFECT time. I think the holidays are getting to me a little. It's been almost three months since our lives have been turned upside down and I am just ready for some direction and peace.

Riley and I had a good day. This afternoon we were visited by Tom and Rachel Houseknecht and their 8 week old, Brandon. What a cutie! It felt so good to hold him and do the mommy sway (you moms know what I mean!) It was great to see Tom and Rachel so happy with their new son. They deserve ALL of it! Can't wait to watch our boys grow up and cause trouble together!

After that, Riley and I went to an amazing Christmas party at Amy Ruth-Swart's house. This is an annual event gathered by friends, family and kids. Every year Amy encourages attendees to bring a donation towards a chosen cause or organization. This year she chose Nolan Heart of Steel Fund. It is so touching because Amy and I just met each other tonight. We have many mutual friends, and for her to think about Nolan is so touching. Just another act of kindness and realization of how many good people there are out there. I thank everyone who attended and donated to Nolan's fund. A MILLION times, thank you. So...the party was kid heaven! There were so many activities for the kids, Riley had a blast! At one point of the party Amy gathers all the kids and reads them a Christmas story. Then shortly after she was finished, who shows up? Santa Claus! It is great...all the kids went nuts! The look on Riley's face was priceless (and many of the other kids!) Riley was actually much better with Santa this time around. We went and saw him at the mall a couple weeks ago and she was not very thrilled. This time she hugged and thanked him for her gift. It was cute. I am so happy we were invited to such a cheerful event...it gave us the Christmas spirit.

I really hope I get to announce some news this week! Will Riley's prediction be correct?

ONE MORE DAY CLOSER!

#nhos
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Everything is OK!

I am sorry it has been two days since I sent an update. Everything is OK! Actually, Nolan is doing amazing. Ideally this would be the perfect time to get a heart because he is in such a good spot. He is a big, healthy boy. They weigh him everyday and the last weight I saw was just about 19 pounds. Unbelievable! They want him to put on as much weight as possible before the transplant surgery. So, we are all just READY! I think all around the doctors are just itching to get donors in because there are three beautiful babies waiting for the gift of life. I do not think they have done a pediatric transplant since maybe late September, so it's time. Maybe Riley will be right? I get goosebumps thinking about it.

So, I have had a nice weekend so far. Last night I went out to eat with some of my girlfriends. It is always nice to see friends and have a moment where you feel...normal. And hearing their words of confidence and reassuring me that everything will be OK brings comfort. I mean, my gut tells me that everything is going to be OK and that Nolan is going to be amazing - but, you still always have to be realistic about the situation. And, it's obviously scary. Tonight we went over to Bill and Melissa Martens house for Oregon East's Annual Solstice Party. (Oregon East is a running club that we belong to.) I haven't seen many of our close family friends since this all started, so it was fun to catch up with everyone. Now Riley and I are sleeping over at my parents tonight. My parents and I are watching the Penn State girls volleyball game. We are all in our jammies, drinking red wine and eating popcorn. It's nice to be with family...in our home. I just miss my boys!

Nolan update...again, he is doing amazing. They slightly weaned some of his methadone and has responded really well. We are still in the CICU because I believe the 8th floor is full.Quite honestly, I don't mind being in the CICU...we know all the nurses and just feel comfortable there. Nolan has been doing great during physical therapy and is so strong! As far as milestones go, I don't think he is going to have a problem catching up once he receives his heart. We are still working with speech therapy on his gag reflex. The more we work on that the sooner we can begin feedings after the surgery. Nolan did have visitors the other day. A few players from the Pittsburgh Penguins stopped by, along with their mascot! Nolan was asleep during their visit, but it was a fun surprise for Matt! (the picture is a bit fuzzy.)

WELL, that is about it. Again, sorry for the delay on the updates. I got home late Thursday night and last night was a night with my friends. I know many who keep up on the updates get concerned when I don't send out anything for a couple days. I PROMISE that I will let everyone know when we receive the call. I am SO, SO excited for that day!

ONE MORE DAY CLOSER!

#nhos
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Santa Comes in One Week!

It's hard to believe that Christmas is in one week! I am still stuck in the month of September. Tonight I am going to try to make our Ronald McDonald apartment look festive thanks to the works of a little gal named Giovanna. The decorations are adorable and all handmade. I will be sure to post pictures once I am done.

Nolan has had a good week. He had one bad moment today where he was very agitated, threw up a little, but then was OK. Some of these medicines could make him uneasy from time to time. Other than that he slept almost all day. I guess he was up a lot last night, but not in a crying way. He was just up, playing and cooing. I am assuming that is why he was sleeping all day. We got him up for physical therapy and I was nervous because I thought he was going to be a cranky pants. Quite the opposite! He did amazing during therapy. He was looking up, down and all around while sitting; did tummy time and was pushing his self up with his arms...it was great! Everyone was so proud. After that our nurse, Sarah, and I gave him a bath...then I held him while she made a fresh bed for him. It was a good couple hours. He is really animated and fun. And, I have to say, he loves his mama! He will just stare at me! Warms my heart so much!

All day they have said we were going to be moving to the 8th floor. BUT, here we sit in the CICU. I keep telling them I am OK with it. :) I really don't want to move! I guess the 8th floor is full, so we are waiting on a list. Our nurse said they are really busy right now, which typically they are slow around the holiday. There are several of us in the CICU that are waiting to go to 8a. I am sure tomorrow will be moving day.

Speaking of tomorrow...I head back home. I am sad because Matt and I will be apart this weekend for the first time in awhile. I am just glad I will be back here Tuesday! I have so much to do before Christmas. Oh well, what gets done, gets done. It is what it is this year. As long as we are surrounded by some of our family, that is all that matters.

Well, on to some online shopping then cleaning the Ronald McDonald apartment...and some decorating! Half way through the week!!

ONE MORE DAY CLOSER!

#nhos
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A Happy Nono, a Happy Mommy

Not sure what's with me and poor Internet connection, so it's back to the trusty phone! Thank you smart phones!

So, I will keep this quick since it is getting late and I need to get to bed. Nolan had a great day! His day was filled with a visit from speech therapy, physical therapy and he also had a blood transfusion. Both speech and physical therapy went excellent! During speech therapy he allowed the therapist to stick her finger in his mouth and feel his gums. Usually if someone would do this, his gag reflex would react. During physical therapy, he sat up slightly supported and played with toys, and did very well during tummy time. He had his blood transfusion because his H&H went down to a level where they need to replace some blood. So afterwards, and for the rest of the day, he looked very pink and healthy.

Other than all that, they did lower his methadone a little and he did very well. We had such a fun day together. He was very playful, funny and sticking out his tongue...laughing...I will never forget it! I cherish these types of days. I am hoping this continues until we get our call.

I will update more tomorrow after rounds. I hope everyone had a great Tuesday! One more week until Christmas!

And...ONE MORE DAY CLOSER!!

#nhos
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And These Are The Days of Our Lives

Day 63. I feel like these days are getting more intense the higher the number climbs. You are always checking around for clues...like, what are they all discussing over there? Why is that doctor here so late? It's crazy. I know we will get our news when we least expect it. With that said, I just need to focus on the NOW...not the WHEN.

Nolan had a great day. He has been comfortable, smiley, playful...it is so great to see. Nothing really new to report. Nolan had PT today, and he did pretty well. He looks like he still has pretty good head control, we did some tummy time (his favorite...not really!) and sat up supported. He also had his VAD dressing changed, which is not his favorite either, but is done every Monday. They have continued the same sedation routine and he is still receiving preventative antibiotics for the cultures found in the cap of his PIC line. We were going to go up to 8 a today, however because of the deposits found in the pump of the VAD, they feel more comfortable that we stay put in the CICU so they can keep a better eye on him. I am OK with it! I don't mind being here.

So, I can't complain about the day. He has been a happy boy. I am anxious - have I mentioned that? :) The only hard thing about being in the CICU is that you can see stuff happening. Your mind wanders. There's emergencies coming in, patients being wheeled away to be operated on, families waiting anxiously in the waiting room to hear the news. It's tough. Everyone gives a nod while passing each other because we all know we have a story...and we all have pain...and we are all scared. It is like a soap opera here! Everyday is something new.

Tonight my goal is to do some final Christmas shopping and hopefully get some sleep. I am up and down so much at night! Matt said he woke up in the middle of the night and was so confused where he was at (he is in Muncy). I hope everyone is getting all their holiday plans and gift buying finalized. I am already excited for next Christmas and being able to really CELEBRATE! This year will still be nice, but I do wish we could be at home. BUT...plenty of years for that.

We are getting close. Riley told my mom yesterday that Nolan is getting a new heart next week. We think it is strange because we really don't talk much about new hearts. I hope she is right!

ONE MORE DAY CLOSER!

#nhos
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We Have a Happy Boy

Another week has passed. I believe today marks day 62 on the heart transplant list. As fast as these weeks seem to go, September 30 seems like years ago. There are a few of us families that have been between the CICU and 8a (the acute cardiac unit) for some time now. We all have slowly gotten to know each other, our stories and connect because our true feelings that we don't share with others we can share with them. We are all in the same place. It is interesting to hear someone that has the same day to day fears. We all know that our lives will never be the same...regardless what happens. With that said, I am glad I got to know my neighbors here. We all have some amazingly strong children! I know that Nolan's strength gives me the strength to make it through the day. If he can do this, so can I. And of course, my Riley Roo. She gets me through it all.

Nolan has had a great day. I actually got some smiles and he had a good workout under his play gym today. This morning they took him off of his oxygen and he has been doing great without it. Nothing else has really changed. I believe they are going to lower his clonidine tomorrow. He seems less agitated when it comes time to receive one of

his sedation meds, so that is a good sign that we are back to a comfortable state. He did test positive for cultures in one of his caps on his PIC line, however all of his panels have come back fine. So preventatively he is receiving antibiotics. Respiratory wise he sounds much better, so his rhinovirus is improving. They went up a little on the Lovenox because he has a small build up in the pump of the VAD. Nothing they are too concerned about, but something they will keep a close eye on. We will probably be in the CICU until Tuesday/Wednesday, then we will be transferred back to 8a.

Matt left pretty early today, as did his parents. We had a nice, snowy weekend. I am sad because Matt and I will not see each other until Christmas Eve. This week is a little different. I am heading back home Thursday evening because I have a dentist appointment Friday morning...so, Matt is heading back here Thursday evening. We will pass each other somewhere on route 22. Then Christmas Eve Riley and I will head back to Pittsburgh to celebrate Christmas. My sister will come into town, parents and I believe Matt's parents will come for the day. Then Friday they all will head back home and I will stay here with Nolan because Riley and Matt will celebrate Christmas with the McLaughlin family. That is our holiday madness. I am trying to get myself together for Christmas. I guess being home next weekend will be nice because I will be able to wrap, etc.

I had dinner at the Ronald McDonald house tonight with a fellow heart mom, Stephanie. Her son is Nolan's neighbor, his name is Cohen (https://www.facebook.com/TeamCohenAllen). It was nice to not eat cafeteria food and have something homemade. AND it was nice to chat with Stephanie, hear their story and talk about our new lives. Now Nolan and I are watching the Steelers. I hope to do some more Christmas shopping online. Can't believe we are so close! Let's hope Nolan gets an early Christmas present!

ONE MORE DAY CLOSER!

#nhos
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Relaxing Days

I hope all of our northeast friends are enjoying the snowy weather! It is coming down pretty hard here in Pittsburgh. Nolan is having a good weekend. Matt's parents are here so they spent the day with Nolan while Matt and I relaxed for the afternoon at the Ronald McDonald house. It was nice to actually sit down and watch TV.

The latest with Mr. Nolan. He currently has no medications running through his pic line! All of his medications are being administered orally. They switched out his heparin with Lovenox. This is another type of anticoagulation therapy, but given by a shot twice a day. They switched him to this because he has been at a steady level of heparin for awhile and the Lovenox is used when the PTT levels are consistent. (or something to that nature.) He is still on a sedation every two hours, whether it is Ativan, clonidine or methadone. They have slowly weaned some of the methadone. SLOWLY. What else? He is on vancomycin and zosyn (antibiotics) because he is having cultures done. They are checking to see if he has an infection due to a fever he had early yesterday.

Other than all of that, he is doing well. Very comfortable and enjoyed a lot of the day laying of Meena (that is what Riley calls Matt's mom). I am pretty sure we will be moving to the 8th floor early this week. Hopefully we are not there long and we get our call soon! One of our nurses told me that 60+ days is one of the longer waits...so, I am hoping that this means we will be getting our gift soon. We have a game plan with my parents and Matt's parents for the day we get the call. The whole process typically takes about a day. Riley will go with Matt's parents and they will trail us the following day or so. I can't even being to imagine the emotions of this day. I can't even imagine what our lives will be like after. It is really weird not knowing what your next week, month or year will be like. It's both scary and exciting.

Tonight Matt's mom and dad took us out to dinner. Now we are hanging out with our little man. The snow has now turned to rain. Pretty yucky out! I hope everyone has a nice night...and stay safe! I am going to go stare at Nolan for awhile. :)

ONE MORE DAY CLOSER!!

#nhos
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Quick Good Night

Just a quick note to report that Nolan had a great day. He will be moved back to the 8th floor tomorrow, most likely. His cold is getting better and they are VERY slowly weaning a little sedation so he is a more...awake and personal. At the same time, they do not want to do much because they finally have him comfy. He did his PT today...and most importantly, everyone recognized his 8 month birthday. April seems years ago...at the same time snuggling in bed together seems just yesterday. It is getting closer...I just know it.

OK...I must go to sleep. Just got my house together, done packing and ready to see my boys tomorrow. Can't wait!

ONE MORE DAY CLOSER!

#nhos
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We're Getting the Christmas Spirit!

I can definitely say that when Nolan has a good week, we all have a good week. Today was pretty much the same as yesterday. He is currently still on low oxygen because of his cold. A very low amount. He is on the sedation regimen of clonidine, ativan and methadone. Matt said they lowered the methadone earlier this evening and he did well. He had PT today and spent time in both purple chair and in a swing! This is his first time in a swing since September!

So, thankfully another good day. My department Christmas party was today. It's always held at Linda Ott's amazing house, and it's typically spent eating amazing food and laughing a lot. We have a great department. I am so lucky to work with real friends. It's not often you get that! It makes times like now enjoyable to go to work. I am guaranteed to feel like I accomplished something and laughed! I hope our department dynamic never changes...anytime soon at least.

Tonight Riley and I went to my parents house. I did some online Christmas shopping while Riley played with Pap. I actually got a lot done!

I am going to call it a night...so sleepy! Friday is so close!

ONE MORE DAY CLOSER!!
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Silly Santa

I can't believe tomorrow is already Wednesday! I feel at ease because Nolan has been having a good week and had one of his better days today. Not much as far as medication has changed. He is on the sedation meds every two hours and on a very low dose of beta blockers. He is on aspirin and heparin to stay anticoagulated, and on a low dose of oxygen because of his cold. Matt said that they will most likely remove the oxygen some time tonight.

So, we are on our way back to a happy Nolan. Matt said he did PT today and did OK. Tomorrow, Matt is going to attempt to put him in a swing. It will be a nice change for Nolan.

We have become friends with another couple the past few weeks. Their daughter, Faith, had a successful catheterization done today to check for clots and has been cleared to be placed back on the transplant list. Faith just turned 1 and has a 3 year old brother, so Matt and I can relate very well with her mom and dad during these stressful moments in life. I am so happy Faith had the strength to make it through her surgery today and is back on course to receiving the gift of life! She is a miracle, just like Mr. Nolan!

Today my mom, Riley and I went to the mall to see Santa! It was the first time Riley really got it...so naturally, like most kids, she was curious but also freaked out. The picture says it all. Santa looks great, though!

Well, almost half way through the week. Can't wait to see my boys!!

#nhos
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Making Progress

Still posting from my phone! Sometime soon I will find the time to fix the wireless. :)

I am happy to say that Nolan is doing better! His heart rate is in the 110's while resting and they took him off the precedex last night. He still has a nasty cough, so they have him on a small amount if oxygen because his was a little low. I believe they are still on the same sedation regiment and I think they will hold steady for awhile while this cold works its course.

That is really the latest. We are so happy because he is comfortable again. They asked Matt if we would want to be on the list to head back to the 8th floor and Matt refused. With his cold and having a horrible last week, we don't want to test anything. I hope the next time we are on the 8th floor is recovering from a heart transplant!

Well, we made it through another Monday. Tonight Riley and I made a trip to Target...I got an idea on what to tell Santa what she wants for Christmas, so I am excited! Can't believe the holidays are so close. Tomorrow my mom and I are taking Riley to see Santa at the mall!

ONE MORE DAY CLOSER!

#nhos
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And Another Weekend Over

Well, back at home in Muncy. It is lonely because Matt's parents have Riley. The weather is bad, so Matt's mom is going to bring her back home tomorrow. I am trying something new and posting from my cell phone. I have to get my wireless Internet situation figured out this week!

Nolan's weekend was OK. Better than the week. He is definitely not happy Nolan, but his agitation has subsided some, so that is good. His resting heart rate was pretty high throughout the weekend, so today they gave him a low dose of beta blockers. This helps slow down heart rates, and now Nolan is resting comfortably around 120. He is receiving sedation every two hours...either Ativan, methadone or clonidine. They have him on a low drip of precedex, but that will be removed tomorrow. He is back on feeds and fully anticoagulated...so, we are ready for that call!

We had a nice weekend with my parents and the Springmans. Matt and I talked a lot this weekend about how hard this is becoming. Being separated from one another is so hard. This waiting and not knowing is like torture! I try to imagine what the day will be like when we receive the news that our heart has been found. It's exciting and sad at the same time. Knowing someone selflessly donated their child's organs is something I can't even imagine. I am already forever grateful to whomever these people will be.

I hope everyone had a great weekend! I am off to get some good sleep!

ONE MORE DAY CLOSER!

#nhos
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Snowy Saturday

Hello from Pittsburgh! We made it into town last night in the wintery weather. My parents, myself and Fred and Janice Springman all came for the weekend. Last night we spent some time with Nolan and then went out for a late dinner. I was happy to get Matt out of here. From the sounds of it, his week was a lot worse than what he told me (which is the norm, he doesn't like to upset me while I am away). Nolan's agitation through the week was pretty horrible. The worst that anyone has seen to date. On top of that, he did test positive for the rhino-virus (cold), so he is congested, which adds to any irritation. Not that the 8th floor is a bad place, but with how bad his agitation was, I am so thankful they sent us back to the CICU. They are currently trying to get him back to a comfortable state, and it is clear that things are getting better. I came over to his room early this morning, and even from last night he is way more consolable.

SO, here is the latest from what I gather after being here for almost a day. Nolan is currently receiving Precedex through his IV. This will probably be weaned  by the end of the weekend. Orally he is receiving clonidine, Ativan, methadone and every once in awhile morphine. They are using the morphine as a bridge while they increase

his methadone. He is also receiving around the clock Tylenol. Dr. Feingold, one of the transplant doctors, stopped by to give me the play by play of the past week. He said, aside from the HORRIBLE agitation, that he is encouraged because they have done every test possible and nothing bad is showing up, which tells them that this is probably all sedation issues. In the beginning of the week he was not sure if they would have accepted a heart for him due to his cold. He said now that if a heart came today, they would definitely take it. Our nurse has set it up that he is receiving some sort of sedative every two hours so Nolan has some sort of relief. Nolan is currently receiving TPN and lipids through his feeding tube. Today they are going to start back on some formula feeds.

I believe medically that is the latest. His VAD still looks great, he is fully anticoagulated and we are just praying that we get that call soon. Physically Nolan looks pretty worn. He really did not sleep all week, so I am assuming he will probably sleep most of the weekend. His heart rate is pretty high, but I assume once they get the sedation leveled out his heart rate will follow the same trend. I THINK we are on a good course. From what I was told (and can see) Nolan would rub his hands almost raw and he has scratches all over. This is from thrashing about while going through the withdraw. There are some amazing nurses and physicians here in the CICU that have Nolan on a good plan to get him happy again. Everyone wants to see that Nolan smile!

I plan to spend my day and most of the evening with Nolan. I made Matt sleep in and now his is hanging over at the Ronald McDonald house doing school work and, I hope, some relaxing. He is also pretty worn from the week. I just want to hug him because I can tell how upset he is from the past week. I pray that this week is better for Nolan AND Matt. I tried to make Matt go home this coming week, but he insists on staying. I think it's a father/son thing. I get it. I am just happy Matt and I have the ability to switch weeks so we both can help Nolan and spend time with our Riley Roo! Being with Riley really helps mentally. She has no idea how much she is helping us through all of this! Just looking at her always makes me feel better.

Tonight, if the day goes well, we plan on going out to a nice dinner with my parents, Fred and Janice. I am already antsy about leaving Nolan tomorrow. Having our family separated is starting pain me more and more. Matt and I were just saying last night how excited we are for the summer because we know by then we will all be home. BUT, I need to remember to live and focus on TODAY. And so far, we are having a good one.

I hope everyone has a great weekend! Keep sending the positive vibes and prayers. And let's hope we get that phone call SOON!

ONE MORE DAY CLOSER!

#nhos
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Almost There

Tomorrow night when I am with Matt I promise to give a better description as to how the past week went. It is hard to gather everything from him and not see it all with your own eyes. Nolan is still in the ICUS and will be indefinitely. His agitation is still bad and they have done every test under the sun to rule out anything such as seizures, neuro bleeds, infections, etc. His CT scan came back today looking better than yesterday and he had an EEG done, which also came back great. So, we are comforted knowing that all things aside, he is OK, so, why the agitation? They are still suspecting bad reactions to sedation...so tonight they are going to make some changes and hope that they can give him some relief. Matt has hardly slept for 3 days, so the ICU told him to go back to the Ronald McDonald house and SLEEP. I feel horrible that he has had to watch our son in distress for 3 days and nights. I can't wait to get there.

With that said...tomorrow is Friday!! I am ready to see my boys. Tonight I had a nice night. One of my great friend's, Ashley Christ, came over...and my other friends, Krista and Mike Lazar brought over dinner. Their kids came, too, so it was nice to hang out, chat and have some laughs. Now...bring on Friday!

This weekend my parents and Fred and Janice Springman are carpooling with me to Pittsburgh. I am hoping our boy is in good spirits by then,

OK...I am off to bed. Thank you to everyone who came out to BWW yesterday! I will provide the turnout from that soon!

More tomorrow...

ONE MORE DAY CLOSER!

#nhos

Easy Does It

Nolan had another rough night yesterday. His agitation continued on through night and Matt stayed with him until about 1 am. Because of the uneasiness and wanting to keep him as calm as possible due to the subdermal hematoma, they decided to start him on IV Ativan. He seems to have a bit of a cold, so they also started him on albuterol treatments. Because of his bad night and the amount of attention he needed, they decided to return Nolan back to the CICU this morning. Throughout the day Matt said that Nolan is doing great. They are not sure about what may have started all the irritation...they believe it is between a cold, belly or headache. They will continue to observe Nolan in the CICU until further notice. Actually, I am OK with him being there because I know he is getting one on one attention. :-)

Back on the home front, today Buffalo Wild Wings had a fundraising event in honor of Nolan Heart of Steel. My coworkers and I went over lunch this afternoon and it was amazing to see so many people there supporting our son. And a huge thanks to my friend, Alicia Boyer, for getting out and asking BWW for support. We are overcome with the unity and support that is being displayed for Nolan. I hope he knows someday that it truly did take a village to raise him! We couldn't do it without all of you! I am glad people got out to show their love for Nolan and try out our newest restaurant in town!

Tonight I went over to Becky Shaner's house for dinner and to let our kids play. Kristin Daugherty and Mandy Kitzmiller also came with their kids. It was nice to hang with my good friends and watch our kids play. I am thankful for Shanerville because that is where our dog lives while we are away. We owe the Shaners big time! Mr Ben is not always the easiest fella. 

I am off to sleep. I am so happy Nolan is peaceful tonight and resting well. I have had some restless nights and I am in the need of some good sleep.

ONE MORE DAY CLOSER!

#nhos

Day 50

Well, I believe today marks day 50 that Nolan has been officially listed for a new heart. We are getting into the HOT zone when anything can happen at anytime. OF COURSE, it could be months from now before we receive the gift of life, but I am so hoping it is soon. It was be the Christmas present of a lifetime! It is truly the gift that keeps on giving.

Unfortunately, Nolan had a rough day today. He had continued agitation throughout the night, so this morning began with a CT scan to make sure there was nothing going on. The scan showed a small subdural hematoma (bleeding inside the skull, but outside the brain). They explained to Matt that this could be because of the withdraw. The headaches and high heart rates could have caused this small bleed to form, which may explain some of the agitation. With that said, it is a good thing we had this CT scan done so they can keep a close eye on this bleed. Neurology states that this bleed should not cause him any physical limitation and hematology gave the OK to continue Heparin at a minimally reduced dose. They also proceeded to increase his doses of sedation to keep him comfortable because it is most important to keep him anticouagulated until the heart arrives and to keep his VAD clear.

The last I talked to Matt he said that Nolan seemed to slowly become more comfortable, so I think our focus will be just to keep him HAPPY, HAPPY, HAPPY. It is crazy to think that we have been in this situation for over 60 days. Matt and I are continually giving each other pep talks because this lifestyle and the constant worry is starting to wear on us. I think the holidays make it especially hard because we aren't doing our normal Christmas traditions. We keep reminding ourselves that is it just one year...and it will be a Christmas we will never forget...whether we get a heart before then or not. I have to continue to remind myself to take life one day at a time, not worry about the little things. Keeping our family united and on the same page while living apart is important. And, of course, remaining strong for Riley. The rest of life can wait until we are all home. We have plenty of holiday seasons ahead of us.

On that note, I am about to meet some of my gals to discuss Nolan's benefit in February. I want to give a shout out to Alicia Boyer for setting up the benefit tomorrow at Buffalo Wild Wings (AND THANK YOU BWW!!)

#nhos
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