Happy Belated Memorial Day!

Just a quick update on how our Nolan is doing.

On Sunday morning Matt and I joined our little ones at the Cabin. Nolan had a good night with my parents...he was a little congested, but as the weekend went by he sounded much better. So, the antibiotic is doing its job!

Sunday we had a fun day. All the families on our road at the Cabin got together for an Annual Memorial Day Parade...all the kids on the lane walk in the parade; so we road on the back of our golf cart (my mom, dad, Riley and I); it was so cute and there were so many families and kids involved! After the parade there were games for the kids and the adults, then a picnic with a band, food, drinks...AND the weather was just amazing. So, it was a nice day. We actually took Nolan over to the picnic and watched from afar. He really has not been around so much action, so he was totally interested in the music and people watching.

Monday was just as gorgeous so my dad, Matt and cousins worked on a huge play-set they are building for the kids and I actually got to get out and kayak with some of my good friends. It was my first time kayaking EVER! I haven't had a moment of peace like that in so long. I loved it...and think Matt and I are going to try and do it more often this summer.

Nolan just loves the cabin. He love the outdoors, watching Ben and Riley run around and being in another environment other than our house. I am a bit crazy, stocking the area with ample supplies of hand sanitizer and Clorox wipes. I am pretty sure the cabin has never been cleaner! I am so thankful we have this place or else Matt and I may have gone totally crazy being in our house all summer.

The latest with Nolan. He seems to continue improvement from the virus. I am pretty sure Riley had/has whatever Nolan does, and both of them seem to be on the mend. Physically Nolan is doing amazing. He can definitely army crawl from one side of the room to the next. I think we may see him crawl pretty soon. More and more we have been working on standing and walking with assistance. He is getting used to the walking motion. Tonight our OT came over to work with me on Nolan's oral feeds. We have a long way to go, however he didn't do too bad tonight. He did not gag at all and was actually bringing some food to his mouth. So, I have a new plan and feel more comfortable working with him.

We should hear more tomorrow from our transplant team on our next steps with Nolan. We are still in the process of adjusting medicines and need to get a neurology appointment at Hershey soon to discuss his anti-seizure medicine and whether or not it is necessary. So, more on all of that soon. His next biopsy is July 18, so I am HOPING that is our next trip to Pittsburgh. We will also meet with GI to discuss his feedings.

I hope everyone had a great start to a short week!

#nhos

Never A Dull Moment

Well, not the start to a holiday weekend that we expected.

Yesterday Matt and I started our weekend off by having happy hour with some friends. Just a short time after we got home it was clear that Nolan was not feeling well. There's one thing for sure - when Nolan is not feeling well you can tell. He was lethargic, cranky, feverish and just wanted to be held. He also threw up several times. Matt called the on-call cardiologist at Children's and since it wasn't necessarily "life threatening," they said if we felt there was something actually going on it would be best if Nolan were to come there. So, off Matt and Nolan went around 6:30 last night. They got to Pittsburgh around 10:30 and Nolan was admitted. They ran some tests and right off believed that Nolan has an ear infection. He has had a low grade fever on and off all week - a lot that we attributed to teething. So right away they started him on some antibiotics.

So, Matt and Nolan had a long night. Matt gave me the play by play throughout the night. Nolan's liver enzymes are still trending on the high side, which has caused concern for the transplant doctors and our GI doctor. Over this past week we discussed this with the team. Our plan of action is to get an appointment with neurology ASAP to discuss decreasing Nolan from the Keppra, medicine that prevents seizures. Once that was weaned and if his liver enzymes were still high, we then would switch his anti-rejection medicine, which currently is prograf. And if THAT didn't work we would then have to get a liver biopsy to get a further understanding as to what was going on.

Fast forward to this morning; Nolan looks much better. He is his happy self, despite a little sleep deprived. Nolan does have an ear infection and a little viral infection. Like our transplant coordinator and doctors say, Nolan will get sick. And the first time will be scary. Thankfully it is not anything to serious and we caught it very early. When Nolan isn't feeling good, you know. I know it seems crazy to run straight to Pittsburgh, but they know him best. It is amazing how far you will travel to receive good healthcare. Since they specialize in children with transplants, it is just where we feel most comfortable and confident.

SO, as we speak, Nolan and Matt are on their way home! Today Matt and I were to attend a wedding of some dear friends of ours, Pat Moriarity and Keri Matty...well, I THINK we may make it to the reception. YAY! We have been looking forward to this day. My parents are looking forward to watching Nolan and Riley tonight...then the rest of the weekend we are going spend at the cabin. So, I can't wait to see Matt and my little man. I have missed them both so much!

WELL - that is the latest in the McLaughlin world! NEVER A DULL MOMENT! Life is ALWAYS keeping us on our toes. We are looking forward to see some great friends tonight and spend the rest of our weekend with family. I will send an update tomorrow at the cabin!

#nhos

A Good Weekend

And so another week begins!

The rest of our week in Pittsburgh was busy, but successful! Thursday we had an early morning appointment with our transplant doctors and transplant coordinator. During this appointment we had an EKG done, as well as an echocardiogram. Everything looked great and both Dr. West and Alice, our coordinator, were happy with how Nolan looked. Probably our number one concern, these crazy liver enzymes. They are still high, but steady. Our GI doctor at CHP has been great to work with. He is in touch with us on a weekly basis discussing Nolan's lab results, other lab panels he has ordered and asks if we have any thoughts or suggestions. He still thinks that Nolan's high liver enzymes are most likely due to medications, however he has ruled out any metabolic or genetic disorder...so that is good. Tuesdays is when all the people involved in cardiac transplant get together and discuss all cases, so I think by tomorrow we may know if any medication changes will be made due to the liver enzymes. As for now, Nolan seems to be doing great (better than ever), so we all know he is feeling good.

Back to our week. Friday we had to be at CHP by 6 am for the biopsy. Nolan went in to his procedure about 7:45 am, and the cath takes about an hour. Once he was sent to recovery, Dr. Miller let me know that all of his pressures look good and she didn't suspect for their to be any issues, but that was up to the pathology reports. We hung out with Nolan in recovery until about 11:30 am...then we got in the car and headed back east for Williamsport! We knew that if there was rejection we would have to turn around and go back to CHP, but I think both Matt and I knew that everything was OK...so we took a chance! On our way home we got his results, and his status was 1a, which is good! He has also been removed from two more medications...so currently he is only on 4 medications! When we were at the Ronald McDonald House he was probably on about 15+! So, life is getting easier!

Before we left CHP, we stopped to see some of our nurses and I also visited with a family I got to know before we left Children's. Sarah's daughter, Elsie, received a heart a little over a week ago. She is 6 years old and doing amazing! I wanted her to meet Nolan and to see how they were all doing. It was nice to see all of them smiling! ALSO - it is great to see all of our amazing nurses at CHP. We miss them all dearly!

When we got back to Muncy we relaxed with my mom and dad, and got reunited with our baby girl. Riley had a great time in Florida...she got to experience her first plane ride, her first roller coaster ride, her first log flume ride...and many other firsts, so I am a little sad that Matt and I missed those moments. I am so grateful that my parents took her to see my Nanny (mom's mom) and visit Florida! Matt and I are very fortunate to have amazing parents that are willing to help us out and enjoy hanging with our kids!

Saturday into Sunday we decided to spend at the Cabin. It was cold, but nice to get out there and relax. Being out there takes away the stresses of life. I look forward to our summer. Saturday night we got to hang with the Uzupis' (Steve and Betty) and Christs (Randy, Ashley and Colt); we had a good fire that all the kids enjoyed...and the adults! Sunday we had a nice day with Dick, Carol and Randy Everett and Matt's parents, so all around a great weekend. We are lucky to be surrounded by such amazing people in our life!

What does the rest of the week hold? Tomorrow I believe Nolan has OT. Our nurses continue to be AMAZING! Nolan is doing great physically. He can get on all fours and is rocking back and forth. I bet he is crawling within the next two weeks. All around he just looks amazing. I can't believe how far we have come.

I hope everyone had a great weekend and a marvelous Monday! We are still slowly acclimating to our new life. I have a list a mile long of things to do...send thank yous, hang pictures in Nolan's room, clean Riley's playroom, etc. I want to express to you all how much you all and our community means to us. I think about all the support we have received and continue to receive daily. We truly feel SO extremely lucky to be from Muncy...Lycoming County...Williamsport area. VERY proud.

PS: don't forget to VOTE tomorrow :)

#nhos

Back in the 'Burgh

The McLaughlins had an early morning (well, Matt, myself and Nolan - Riley was sleeping in soundly on vacation in Florida...jealous!) I got up at 4 am and we were on the road by 6 am. We wanted to get to Pittsburgh today by 11 am so I could attend Oliver's memorial service. It was a great drive - actually kind of peaceful. Matt and I are so used to making this drive in the winter months, so it was nice to see spring IN BLOOM and watch the morning wake-up. Nolan did great on the drive out - very chatty, so we tried the best we could to keep him busy.

We got into Carnegie, PA where Oliver's service was held. It was so great to see Trevor and Ashley - finally! They both looked amazing and so happy to see everyone in attendance. When Ashley and Trevor were planning how to honor their son, they asked Matt or I to speak at the service. I was completely taken back...and a little terrified! However, how can I say no. To be able to stand in front of Ashley's friends and family and speak about their courage and love for Oliver and each other, not to mention be apart of this memorable day, I am honored. The service was perfect. The pastor spoke so passionately...and even shed some tears, and it was a time not to be sadden by Oliver's passing, but celebrate his life! He is a teacher, an inspiration, a fighter, a son, a grandson who will continue to help friends and family get through the day and live life with purpose. I know the Halligans and McLaughlins will continue our friendship for a lifetime, and I look forward to making many memories together. Thank you Oliver, Ashley and Trevor for giving us your example of strength and teaching us all how to be Olliestrong.

Tomorrow we have our clinic day with the transplant doctors. No labs though - yay! So we will head over to CHP around 7:45 am. We are staying at a hotel, so it is kind of relaxing! Nolan is teething like crazy (almost 7 teeth in...4 out, 3 poking out - ouch!); I hope we don't bug the neighbors too much!

Tonight we went out to dinner at a restaurant in the same complex at our hotel called Social. We sat outside away from people so Nolan could rest in his stroller and Matt and I could enjoy some dinner and beverages.Weather was great, but we are exhausted. Matt and I are hoping Nolan feels the same way soon.

More tomorrow!

#nhos

Happy Belated Mother's Day

Fitos, I hope all the mothers out there had a nice Mother's Day. Coincidentally this year Mother's Day fell on my birthday. Thanks to my husband, I got to spend Friday night out with some girlfriends, one being Abby Fitzgerald, one of my best friends from high school. This was the first time she has seen Nolan since early September, so I know it was nice to reunite. Abby has a son, Liam, just about the same age as Nolan (a few weeks apart). Our daughters are also exactly one week apart! SO, needless to say...I had a good night.

Saturday and yesterday, Matt, my dad, his dad, KC Shaner and Fred Springman built our new fence. We have the first long section of the yard done and it looks amazing. Between this and our garage, these are our main spring projects...we can't wait! Our dog will have his yard back and Riley can run free without us having fear that she is going to leave the yard. I have slowly been getting things together and organized around the house. It takes a lot of time catching up after not being home for six months! Matt and I were really close to moving about a year ago and the more we get some stuff done around here, the less I think I am ready! So many memories here and I feel we need to make some GOOD memories before saying good-bye. Maybe we'll stay here for another year or so. :)

NOLAN. He is doing great. His liver enzymes are still high. We had our routine Monday blood draw this morning, and additional panels were ordered to do further testing into finding out what's causing the levels to stay elevated. Nolan does not appear to be feeling bad, he is tolerating his bolus feeds 4 times a day at 170 ml/hr, and then a very small continuous feed from 9:30 pm - 7:30 am. Our goal is for him to get to 180 ml/hr which we will start tomorrow. He hardly throws up (today only once), so overall we are happy with this.

Our nurses are amazing. They all truly love our little guy and we have such a great bond with them. We feel SO lucky to have Bayada Pediatrics in our area! During the day he has been receiving one hour of PT a week and 90 minutes of OT a week (which is broken up to 30 minutes, 3 times a week). The nurses work on both therapies throughout the day and he has been doing well with the oral feeds. Both the therapists are great. I think he will be crawling/walking by the end of the summer, if not sooner.

Wednesday we leave for Pittsburgh. Nolan has a day of appointments on Thursday, then Friday is his biopsy. It is always nerve wracking to go in for a biopsy of his heart, but he seems to be doing so well, we do not anticipate any rejection going on. I am anxious to go...I have not been back to the hospital since we left, so I am just preparing myself for "hospital mode." (whatever that means) I look forward to seeing some people at CHP, most importantly giving Ashley and Trevor Halligan big hugs (Oliver's parents); please keep them in your prayers tonight as I know they are spending their last day with Oliver. They have had family and friends travel in from all over to support them. They are all so loved. I hope they all feel it.

That is the latest. I will definitely be keeping updates while we are back in Pittsburgh and will try my hardest to every day. Tonight's a less busy night for us - Riley took a trip with my dad down to Florida to visit my mom, who is helping out her mom as she transitions into assisted living. She had her first trip on a plane with "her pop." I am so jealous! And I miss her SO much! I know she is going to have a blast...and I know it's good for my Nanny to see Riley. She brings a smile to your face.

Everyone keep #olliestrong tonight.

#nhos

Ollie Strong

It has been awhile, and I apologize for that. I have found it hard to write about what is going on with our lives when good friends of ours are going through such despair having to make the decision to let their son go.

Oliver Robert Halligan was born on November 11, 2013 at 11:11am. He was diagnosed with a rare heart condition called Total Anomalous Pulmonary Venous Return (TAPVR) at 18 hours old. As most of you know, Ollie has had quite the roller coaster during these almost 6 months of life. Just a few weeks ago Ollie crashed and they were able to revive him. After that, he continued to have other issues arise, so various tests were being completed.

Last Thursday Oliver had a bone marrow biopsy. On Friday the team got the results and wanted to have a care conference with Ashley and Trevor, Ollie's mom and dad. So they met with Oliver's cardiologist, CT surgery, renal and the hematologist. They discovered that the narrowing in Oliver's left pulmonary vein was longer than they had originally thought. Because of this a heart catheter that they had previous planned to perform wouldn't help and there was nothing they could do for the narrowing and they feared he would not make it through the procedure. The bone marrow biopsy showed that Oliver has Hemophagocytic Lymphohistiocytosis (HLH). HLH is an extremely rare blood disorder where the white blood cells attack healthy blood cells. The treatment for HLH is either chemotherapy (which he probably would not survive through), a bone marrow transplant (which he's not eligible for because of all of his other issues) or steroids (which wouldn't be good because he has an infection in his PD dialysis catheter. Therefore the steroids would make the infection worse and would cause Oliver pain). HLH (in kids with just HLH) has a 70% mortality rate. Because of this and all the other complex issue, Trevor and Ashley had to make a decision that no parent should ever go through. They have decided on May 12 they will free Ollie of this life of tubes, tests, pokes and let him free.

I am really at a loss of words about all of it. I can't imagine what Trev and Ashley are going through, but I have been in contact with her everyday to make sure they are OK. I feel comforted knowing that Ollie can be released from the world of tests, procedures, radiation, etc. He will be free and guide his parents, family members and friends through their lives. This is just another reminder of how precious life is. How life isn't fair. How when we are given a situation like this you try the best you can to find the positives in it just to survive a day. Trevor and Ashley will continue to live their life for Ollie, just as they would if he were physically with them. I pray Ollie helps guide his parents back to a happy place. And I know Oliver will never leave their sides, or those who they care about.

I will update more tomorrow. Please take time to say a prayer for Oliver, Trevor and Ashley...and their family. May they find some peace after this storm calms.

The McLaughlins are always here for you, Halligans!

#olliestrong

A Trip to Harrisburg

Ahhh - is it already Thursday night? Weeks are flying, but in a good way. Today marks the first day of May. This month a year ago is around the time when crazy stuff stated to happen with Nolan. First was the apnea, which they later diagnosed as apnea of prematurity. Whether or not all of this is correlated to the dilated cardiomyopathy remains unclear, but needless to say, we never knew a year ago that we would be faced with a lifetime of  medical needs for our son.

Nolan and his dad had another adventure to Harrisburg today to meet with our awesome pediatric cardiologist from Hershey Medical Center. Dr. Dizpenza is a very thorough physician, one that I actually did not like while we were inpatient in the PICU prior to being sent to CHP. Why? WELL - because he diagnosed Nolan right off and basically told us around day 2 at Hershey Medical Center that he suspected Nolan would be transferred and most likely a candidate for a heart transplant. I remember talking to him in those very beginning days of our journey trying to make him say the words I wanted to hear...but he wouldn't, therefore I was just not a FAN of him. WELL, present day...he is obviously amazing. He was very happy with how Nolan looked, despite the fact that his liver enzyme numbers are still pretty high (but trending downward). Based on his echocardiogram, he said that his heart looks as good as 12 weeks post transplant should look. BASICALLY, his new heart got an A+. AND, I am hopeful that his liver enzymes will continue to trend to an appropriate number, so in the meantime, we will be following up with weekly blood draws. Matt said Nolan was absolutely perfect today...on the drive to and from and during the echo...ahhh, we truly feel blessed.

Nolan's next adventure will be back to Pittsburgh for his 4th biopsy on May 16. Sometime soon we will also have follow ups with neurology and gastroenterology. We actually speak to GI on a weekly basis and, of course, I bug our amazing transplant coordinator on a daily basis. :) ALL IN ALL, things are going GREAT. You can literally see him change week to week. He is doing PT once a week, and will be starting OT twice a week. Our nurses work on all of these therapies daily, and you can tell. He is sitting alone, standing assisted, army crawling and quickly catching up. So proud.

That is really the latest with our little guy. Our family spoke tonight about future efforts for Nolan's non profit that we formed, and I am excited for us to start doing some work on raising awareness, giving back and helping others...we'll plan on starting this by 2015. We need the rest of this year to focus on getting life back together and make sure our Nolan is in a good spot. SO, more on that SOON!

I have to throw some shout outs to people. First, one of my best friends, Maggie Davis, has organized a run in Nebraska this weekend to raise money for Nolan's fund. I lived in Nebraska for a lot of my youth, so THANK YOU to all my amazing friends who will be participating this weekend. Second, Bryan Younge. He raised $5,000 with his team, Team Nolan/Cru Kumite. They are doing the Tough Mudder Chicago on May 10. THANK YOU SO MUCH, BRYAN! You are amazing (and so is your family). Congrats to him, too, on his newest baby boy, Hudson! Next, Tony Dippolito. This guys is running the Pittsburgh Half Marathon and raising funds for our heart warrior. The Dippolito's have been very dear friends of ours for a long time and spent some time with us in Pittsburgh while we were there with Nolan. ROOTING FOR YOU BIG CAT! LAST...for today...all of these frozen plunges on Facebook. Many people have donated towards Nolan Heart of Steel fund for these crazy, funny frozen plunges...it is COLD to watch! But, thank you! We appreciate your guts to jump into cold water!

That is all I have tonight. I want to continue to provide updates, and I promise to 3 times a week, at least. Nights just go by so quickly.

Weekend is near!

#nhos