If you could help make a miracle, would you?

The question is as simple as that.  If your answer is ‘yes', I invite you to join the nearly 100,000 volunteers and contributors who during the past two decades generously donated their time and money to the Children's Organ Transplant Association (...

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It has been a while since we posted so just wanted to share a few pictures to see how Porter and Family are doing.   Porter is starting to walk on his own for short distances and always cheered on by his brother, Oliver. Continue Reading »

Finally- we finally heard it yesterday!  A clear MAMA!   Steve and I both looked at each other eyes wide open and said - he said it!   Dada has been easy for lil P to say but Mama has been difficult.  I guess when kids have some hearing Continue Reading »

Porter has really been making progress over the last few weeks.  He is now able to sit up all by himself and is SOOOOO proud.   He is taking more stable steps with supported walking and has been crusing around the entire ottoman instead of just Continue Reading »

Porter's ear tube placement was a success and since the procedure he seems to be vocalizing more.  He's really trying to make works and we can tell he gets frustrated when he can't form the word he is trying to say.  Sometimes he tries to yank on Continue Reading »

We checked in at Duke bright and early at 6:00am this morning for Porter's 3rd round of ear tubes.  He just can't seem to shake the ear infections.  They are also going to check the structure of his airway to see if they see any reason why he Continue Reading »

Porter is back in the cath lab for his first cardiac cath at Duke.  The anesthesiologists and cardiologists were very informative and appeared as if they had read Porter's file very carefully.  They let me carry Porter back into the room and stay Continue Reading »

After 3 rounds of an antibiotic injections (6 shots), being placed on two oral antibiotics, an oral steroid and two inhalation meds, Porter is starting to look and act more like himself.  He is smiling and has wanted to play a bit.  He's been able Continue Reading »

Porter's night started off a little rocky with increased work of breathing.  He improved a little through the night but was still having high respiratory rates this morning along with a fever.  I called the on call Pulmonologist and he suggested Continue Reading »

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Well today was a rough afternoon for lil P.  Got a call from the nurse as I was leaving school that his heart rate was elevated and his blood pressure was high.  He didn't want to play and seemed like he was in pain.  It seemed so strange because Continue Reading »

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Well it sure has been a crazy week!!   Continue Reading »

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North Carolina finally got some snow! Porter and Oliver had an awesome day playing in it yesterday!  This was Porter's first snow day ever!!  We bundled him up and he and Oliver got to sled together. They didn't seem to mind the cold at all. Continue Reading »

Well what a year Porter has had!!!  It has been almost one year to the day that he came home from the hospital. He came home on 13 medications that were administered twice a day, preferred to lay down vs sitting, he was on and off oxygen, on the Continue Reading »

During the months of March and April, Empire Wine and Liquor Outlet (Albany, NY) will donate the proceeds from the sale of their reusable wine totes to COTA in Honor of Porter Richardson.  Also, everyone that purchases a bag will be entered to win Continue Reading »

It has been a busy month!!  Porter had his Tonsils and Adenoids out and tubes placed in his ears again in early December.  He did great with the surgery and was home the same day!  We can already tell he can hear better.  The surgeon said there Continue Reading »

We just wanted to thank everyone who has recently donated to COTA in honor of Porter directly through the website and through checks and money to us that we will send in.  We can't thank you all enough for your continued support and love!!!  We Continue Reading »

What a year it has been.  Happy 1st heart birthday to our little warrior.  Porter you continue to amaze us everyday with your strength and tenacity.  Your smiles warm our heart!  We are and will forever be grateful to the donor family who gave Continue Reading »

Porter had a good night at Duke. I think he got the most sleep he's gotten in a few days. The team was great and very attentive. He has required less suctioning than the last couple nights and his nose isn't running as much. I don't know if they'll Continue Reading »

Well.... All in Porter style keeping us on our toes..... He decided that he hasn't been in an ambulance in a while so why not take a ride today. We took Porter to the ER this afternoon bc he was coughing a lot and has been having increased Continue Reading »

Porter did great yesterday through the heart cath procedure and recovered well!  He was back to his playful smiley self today!!!! Continue Reading »

Well it sure was long day! We went in for Porter’s cath today to find out that they were going to be performing his one year- yes - one year post transplant heart cath!! Continue Reading »

Porter had a LONG afternoon of appointments at UNC today but was a champ! He started with the dietician who was quite pleased with how he is growing!! He's up to 20 lbs 12 oz and is 74.5 cm long. His weight and height are finally starting to Continue Reading »

Both of Porter's tests looked great!  The MRI showed decreased fluid in the ventricles and the fluid is flowing better than it was back in January.  This means they do not feel the need to do a spinal tap at this point to check the pressures in Continue Reading »

Porter is going in this morning for an MRI to check the fluid levels in his brain to make sure they haven't increased since his last MRI in Texas.  We have also switched Pulmonologists and since doing so, Porter has had two chest x-rays.  The Continue Reading »

We hope everyone had a fun and safe Labor Day!!  We sure did!!!  We were blessed to have some wonderful friends in to visit for the weekend.  Their son and his elementary class and school have been praying for Porter ever since he was admitted to Continue Reading »

No - I did not just have a stroke~ Porter is starting to make more sounds that sound like real "words" or actual letters!!!  He is really trying so hard to communicate with his voice and it is so cute.  He cracks himself up a lot of the time and Continue Reading »

We ventured out for a road trip today.  The first of hopefully many!  We made the trip about 2.5 hours down to the NC Aquarium and walked on the very beach we walked on in late Dec 2013 just before Porter was admitted to the PICU.  It was an Continue Reading »

Porter had a great PT session in the pool on Monday and an equally great session today!  Monday we worked with him on standing in the pool and it carried over today.  Porter stood ON HIS OWN for 15-20 seconds!!!!  He was happy at first but Continue Reading »

Since Porter had the tubes placed in his ears his nose has not been running as much and he has had fewer secretions.  He isn’t pulling at his ears either.  The biopsy of his throat revealed more of inflamed tonsils but he cannot have those out Continue Reading »

Over the last month or so we’ve been talking with the pulmonology team about a modified sleep study for Porter to check his vent settings and potentially wean/maximize his progress on his vent while he’s sleeping.  We were told that this Continue Reading »

Well we have always know there was something unique about Porter's arms but we just weren't sure what it was. They have always sort of turned backwards a little too easily. When we were in Texas they used little soft braces on him at night to help Continue Reading »

Porter is movin and shakin.  After having a play date with a friend who is crawling, Porter decided it was time for him to try!  He did it and made it half way across the living room rug.  Only trouble is he's going to have rug burn on his Continue Reading »

Thanks to Porter's PT for suiting up and working with Porter in his baby pool. Continue Reading »

Porter has been doing really well these days!  He is finally getting over his ear infection although his nose is starting to run again.  We're hopeful that the tubes that he's going to get in the next couple weeks will help tremendously.   Continue Reading »

Yesterday scared the crap out of us.  Porter was laying on his right side and I was behind him calling his name and he didn't respond.  I clapped some blocks by his ear~ nothing.  Turned on some music toys~ nothing.  Had Oliver call him (he Continue Reading »

What an interesting day.  We didn't have a nurse on the schedule for today but one of the nurses agreed to come in on her day off to help us out. Thankfully she did!  As she is going over the new May paperwork she discovers that a night nurse a Continue Reading »

Porter had an eye doctor appointment yesterday and even though he was completely annoyed and distressed during his appointment, the doctor at the office with Duke was much more patient and friendly than the first place we went too.  They have Continue Reading »

We received the results from Porter's Cath and there are NO signs of rejection.  His heart is doing very well.  The pressures are perfect, and the tissue samples revealed a healthy heart.  The next cath will be sometime in June after the next Continue Reading »

We received the results from Porter's Cath and there are NO signs of rejection.  His heart is doing very well.  The pressures are perfect, and the tissue samples revealed a healthy heart.  The next cath will be sometime in June after the next Continue Reading »

Porter's cardiac cath/biopsy went very smoothly.  They didnt have any trouble gaining access and they were able to get 3 clean tissue samples without issue.  The cardiologist said the pressures in his heart are perfect!  We should know if Continue Reading »

We arrived at UNC at 6:30am and waited 20 minutes to check in.  Its like going to the DMV -take a number and wait! So- we waited and Porter got checked in.  We were sent on a bit of a wild goose chase after he was checked in because where they Continue Reading »

Tomorrow is a big day for Porter. We (and hopefully our nurse) will head to the hospital around 5:30am, check in with admissions and head back to the cath lab.  His day will start out at 7:00am with a broncoscopy followed by a cardiac cath biopsy Continue Reading »

A HUGE HUGE THANK YOU to The Regulars of Cary, The Big Easy, all the sponsors, family, friends and strangers who helped make the Jam for Porter a HUGE success.  We were blessed with a beautiful sunny day and we were able to bring Porter out for Continue Reading »

It's a beautiful day today for the Jam for Porter!!  Porter has had a great week and hasn't needed as much O2 recently.  He had a great Easter and was even able to venture out to a friends house in his little red wagon! Continue Reading »

Wednesday night we had a nurse on our schedule that neither Steve nor I knew.  I questioned this with the nursing company for over a week only to be told “oh, she was there on the 20th of February.”  Hum, both Steve and I racked our brains Continue Reading »

Despite not having a night nurse last Friday or Saturday we pulled off a fun filled weekend with the boys.  Oliver was able to participate in the Kite Festival at Bond Park and Porter got to go to the park down the street with Oliver.  He even got Continue Reading »

And so are the allergies. Over the last couple of weeks Porter has required some Oxygen 24/7 and has been breathing a little harder on the vent. Chest x-ray looks good, blood work looks good, heart looks good, lungs are clear, no wheezing, so humm. Continue Reading »

Shake it off is a motto we have adopted over the last week.   Last week to the day our night nurse called off for potential weather (which was  a VERY MINIMAL CHANCE) Despite our offering of our guest room should she get stranded she still called Continue Reading »

Update from the Regulars of Cary: Continue Reading »

Porter had a good weekend for the most part.  He needed some oxygen when he was off the vent and a little while on the vent.  We're not sure if it's the change in weather or if he in fact has been fighting a little bug.  He started an antibiotic Continue Reading »

Ya know, some days just don’t quite go as planned but you just go with it~ as best you can.  That doesn’t go without saying our disappointment in the nurse calling out tonight for some rain and a slight chance of freezing rain mostly sticking Continue Reading »

Hello Everyone!  As you will see below~ The Regulars of Cary are putting on a fundraiser at the Big Easy in Cary. Please come out and join the fun!  We are looking for silent auction items for this event~ if you or anyone you know has anything Continue Reading »

Porter had his follow up cardiology appointment yesterday where they did an ekg and an echo.  His heart is still looking great!  They decided that they would like to do a biopsy probably in a month to check for any sign of rejection.  Of course Continue Reading »

Well this week mother nature has wreaked havoc on us to say the least.  Our little 4-6” can’t compare to the 24 + inches that our friends up north have received but when snow removal relies on the sun to melt the snow, it makes things that much Continue Reading »

Porter has had a busy but good week.  I'm so thankful that we were home when we had the snow and ice earlier this week and didn't have to go back and forth to the hospital.  Porter seems to have a little cold and has been a bit extra junky with Continue Reading »

I think the full moon lingered in our house today even though it has long passed this part of the world.  Porter had a good night Sunday night but decided to greet our nurse this morning along with myself with de-canulating himself 3 times - yes Continue Reading »

Ahhh- home again.  Porter is so happy to be home.  I'm sure he enjoyed seeing all of his girlfriends at UNC but "there's no place like home."   Continue Reading »

Porter was moved up to the PICU around 5ish Monday evening and was smiling at everyone.  Porter had an uneventful night at his home away from home. He needed a small amount of O2 over night and this morning.  So far none of his cultures are Continue Reading »

Porter missed everyone so much in the PICU he decided he needed to go back for a visit. As mentioned in the last post, Porter was having some respiratory issues over the weekend. He was not showing signs of improvement so the docs wanted us to bring Continue Reading »

Porter has had an eventful weekend.  Wasn't quite himself Friday night and restless in his sleep.  Yesterday he was having trouble keeping his sats up (basically his oxygenation should be above 92 and he was teetering in the upper 80's low 90's), Continue Reading »

Oh what a day it has been.  Porter's day nurse left shortly after she got here because she wasn't feeling well.  Thankfully, the nurse manager stopped by and helped me do Porter's trach change and keep up with his suctioning. I got a crash course Continue Reading »

Today was a very busy and quite traumatic day for Porter.  He had his follow up ophthalmology appointment this morning to check his optic nerve and nystagmus (rapid side to side eye movement).  Well, lets just say this appointment was extremely Continue Reading »

Porter had his first car ride since January 3, 2014 and he did great.  He would have probably been more excited to go to the park rather than the cardiologist.  I was terrified of the car ride but his nurse was in the back with him suctioning him Continue Reading »

Phew!  Where did last week go?!?!  I have sat down to write this about 7 times but haven't been able to finish.  We have gotten used to having nurses in our house and actually hasn't been as awkward as we thought it would be. It's been an Continue Reading »

Well~ there have been times along this journey that we never thought this day would come.  Not only did Porter come HOME today but he came home on his 14 month birthday!! Continue Reading »

The anticipation of tomorrow is incredible.  It feels like Christmas Eve when you can't wait to go to bed so tomorrow comes sooner!  Anticipated discharge is tomorrow around noon~ fingers crossed.  The nurse told Porter that there couldn't be any Continue Reading »

Well it's been a big adjustment week with getting everyone on the same page regarding Porter and his care but we are getting there.  We are hopeful that Porter will break out of the hospital walls next week and we can start living as a whole Continue Reading »

After 7 months in Houston, Porter and I are scheduled to make our way back home to North Carolina around 7:30am!!!    Nothing like being welcomed home by a winter storm watch!  Good thing Steve brought some long sleeve/pant onsies when he was Continue Reading »

The team here transitioned Porter onto the transport vent to get him ready for his trip on Tuesday!!  So far so good.  It's a lot noisier than the other home vent he was on so we'll be glad to get back to that one when we get home.  Porter has Continue Reading »

Porter has had a week this week starting with an MRI to check the fluid level in his head and check the swelling of tic nerve.    He has been having some rapid eye movement side to side and when they dilated his eyes they noticed his optic nerve Continue Reading »

Today is very sobering.  Today is January 3, 2015   One year ago on January 3, 2014, Porter was admitted into UNC Children’s Hospital in Chapel Hill, NC for heart failure.   Many of you cannot image what Porter or our family has been Continue Reading »

What we thought would be a 24-48 hour stay in the hospital back on January 3, 2014 has turned into a full year, 365 days in-patient.  We would hear the nurses talk about patients who had been in the hospital for a year or longer and we couldn’t Continue Reading »

Goodbye 2014 and HELLO 2015.  We are ready to get off the 2014 roller coaster and looking forward to smoother tracks in 2015.  Porter has had a great week this week.  He has been on a home vent all week and tolerating it very well.  We won't be Continue Reading »

What a Merry Christmas it was this year!!  So blessed this holiday season.  Porter's heart is working great, it's his breathing we are trying to figure out.  His respiratory rate has been high and he looks like he working hard to breath.  His Continue Reading »

THANK YOU PCU for letting Oliver come up to see Porter.  IT absolutely was the best medicine for both boys.  Oliver had been asking about Porter and Porter just lit up when he saw Oliver. We feel some orneriness coming when they are both under Continue Reading »

Porter had his first biopsy post transplant where they go in through a catheter and take samples of the tissue of his new heart to check it for rejection.  What should have taken an hour and a half took............. 4 hours. As we know, Porter Continue Reading »

Porter has had a great week.  The doctors reworked Pharmacy's wean schedule for Porter and he is tolerating coming off the Adivan and Methadone much better.  Porter has been doing the Trach Collar Trials all week and yesterday he went 14 hours off Continue Reading »

It's hard to believe it's been two weeks since Porter's heart transplant!!!  He's been busy healing and getting stronger.  They have started Porter back on his trach collar trials (time off the vent) and he is tolerating it well.  Starting slow Continue Reading »

It is great to be back in the PCU as it is a lot more comfortable than being in the CVICU (even though everyone up there is awesome).  It is a little adjustment being back downstairs and having a new team of docs.  We're working out the kinks and Continue Reading »

It was  busy day for lil P.   His chest tube continued to put out a little bit of mily fluid which indicates a chyle leak (expected from Porter) so they switched his formula for the time being.  Thankfully it's not the dog food vomit smelling Continue Reading »

Monday and Tuesday have been better than Sunday.  Porter's head ultra sound didn't show really anything different than the one he had months ago except maybe a little more fluid and it was consistent with the CT scan he had on Sunday.  They did an Continue Reading »

Sunday started out nice and quiet and then got a little crazy.  I was with Porter in the morning and Steve and I made the switch over and not much past the time it took us to trade places I received a text from Steve that Porter had a lump on his Continue Reading »

There was a point in the beginning of the OSU game today when Porter just closed his eyes in dismay.  Alas ~ he woke up for the rest of the game and was pleased with the outcome.  He was able to take a good nap when the game was done knowing his Continue Reading »

Porter had a great day today.  They were able to wean some of his vent settings, wean some of his sedation, and stable out his blood pressure.  The new diuretic is starting to work its magic.  He has some unusual redness/bruising under his arms Continue Reading »

Thanksgiving 2013 we found ourselves tag teaming on visiting Porter in the NICU as we waited for word that we could take him home.   Continue Reading »

Porter had a good second day.  They uncovered his incision to let it breath but covered it back up where it's close to his trach because of his secretions. They needed to go up on one of his vent settings to help one of his lungs open up all the Continue Reading »

Porter had a good first night overall. His blood pressure was a little low so they gave him epinephrine which has helped and they are weaning that now. The sedation started wearing off and he became a bit agitated. They feel he's built up some Continue Reading »

Porter is in CVICU And looks AMAZING. His color is better than we have EVER seen it. Will add some pics tomorrow when we have the computer with is but we are very hopeful for a quiet restful night. Continue Reading »

Time to heal. Porter was a warrior in the OR today. Didn't give the doctors any surprises. The surgeon said everything went as planned. He has some lymphatic fluid drainage but so far doesn't have tubes by his lungs. They are just going to watch and Continue Reading »

Porter successfully came off bipass at 7:30 this evening. They are working on closing up and getting him to his room to begin the recovery process. Thank you all so much for all your prayers and good thoughts. Will keep you posted as he recovers!!! Continue Reading »

At 6:03 tonight Porter's new heart took its first beat!! He is still on Bi-Pass and has a ways to go before he gets out of the OR but he's doing GREAT!!! Continue Reading »

latest update from the transplant coordinator is everything is going as planned. They are getting ready to dissect Porter's heart to remove it and put the new one in. The next update will be when the new heart starts beating on its own! Continue Reading »

Latest update from transplant coordinator is they are just hooking him up to the bi-pass machine getting him ready for the next step. He's doing well. More to come... Continue Reading »

IT'S A GO!!! Continue Reading »

We met with the surgeon and anesthesiologist, signed consent forms, walked up with the team to the 18th floor, gave sweet Porter kisses and said a Prayer for a successful surgery, recovery and longevity and healing for the generous family who is Continue Reading »

Tonight at approximately 9:00pm we got the call that there was a possible heart for Porter.   The doctors feel that its a good match and we are waiting to make sure it is after they have actually seen the heart.  Will update as soon as we know Continue Reading »

One year ago today we were blessed with our sweet Porter.  We cannot believe a year has already gone by and what a whirlwind of a year it has been.   Out of the last 365 days, Porter has been home all of 27 of those days.  The rest of the time, Continue Reading »

Porter had a good weekend playing and interacting with his brother.  There weren't any heart offers over the weekend so we'll see if there's any activity this week.  We found out that Porter no longer can accept any blood type and has to have a Continue Reading »

Porter is moving up higher on the transplant list.  The Cardiologist came in today to check on Porter and told me they have had two offers for Porter in the last 3 days but the first offer ended up not being a good heart.  The second heart came Continue Reading »

Last week seemed to just fly by!  Porter had a good week overall.  He needed some extra lassix a couple times and spiked a fever over the weekend which led the team to fear an infection steming from his central line but so far nothing has shown Continue Reading »

Just a quick update~ Continue Reading »

It was so awesome to have Oliver and Porter together for Halloween!  We along with the nurses and doctors loved seeing them dressed up together.  The hospital had a trick or treat function for the families and patients who were able to attend.  Continue Reading »

Oliver and Porter have had a great time bonding this week. Porter just lights up when he sees Oliver and Oliver love giving Porter kisses on his head. We celebrated Oliver's 4th b-day on Tuesday with some new friends in Texas.  Oliver participated Continue Reading »

After a tumultuous week, Porter is back to his baseline.   His HR has settled out, his respiratory rate is back to where it normally is, he is no longer septic, his BNP (heart failure number) is still high but lower than it was on Wednesday, and Continue Reading »

Today is a lot better than yesterday.  Porter's respiratory rate has come down along with his heart rate.  He's back on track with his diuretic regimen which helps with his respiratory rate.  He's been playful this afternoon so hopefully we're Continue Reading »

Porter is having a bit of a rough day. I knew something wasn't right with him this morning when I came in.  He's been tachypnic (breathing fast) since yesterday but today his breathing was more labored. He has had 3 IVs in the last few days to Continue Reading »

It is hard to believe Porter is 11mo old!  Everyday with him is a blessing even if it is in the hospital. Definitely looking forward to coming home at some point soon though!!  Can't wait for the rest of the fam to arrive!! Continue Reading »

This has not been a fabulous start to the weekend. I arrived to the hospital early this morning because I was told that Porter would be taken to have his central line out at 7:00.  I arrived to find out that he wasn't even on the schedule for the Continue Reading »

We've been coasting along for a little while without any changes or excitement which has been nice.  Well, in nothing less than Porter style, he didn't want people to get too complacent or bored and spiked a 103 fever yesterday afternoon.  No Continue Reading »

Well today is definitely a good day for a nap and Porter is taking advantage of it.  He had a big morning with PT and OT and they are impressed with his developments.  Porter was able to bang two blocks together and hit a toy against another one Continue Reading »

I had a bit of a bumpy start to the week but Porter has had a smooth week. My week started out with a bang~ literally~ I was rear ended trying to get on the highway after dropping Steve off at the airport. I was the third car in the pile up and Continue Reading »

It was a great having Steve in town for the week. Porter had a lot of play time on the mat and in the exer-saucer. With the exception of Porter's short stay in the CVICU, it was thankfully an uneventful week. Steve and I did some apartment searching Continue Reading »

Porter did well over night and his vent settings are almost where they were before he received his vaccines. He got the green light this morning to be moved out of the CVICU and back down to the PCU and is in a huge room this time. Lots of room for Continue Reading »

Porter is still in the CVICU but happy to report that he has not had a fever today and is almost back to himself. He's been smiling a lot more today and has been more playful. We are hoping to get back down to the PCU tomorrow. The results of the Continue Reading »

I guess Porter was getting bored down in the PCU and felt he needed a change. Steve and I came into Porter's room today to a scary site, one we hadn't seen in a long time. Porter was struggling to breathe, he was muddled, grey looking, his HR was in Continue Reading »

We are still puzzled as to why people want to start changing up Porter's medication when there is no medical benefit for him before transplant.  Last week the Dr. who is on service decided to get rid of one of Porter's diuretics, he said it was Continue Reading »

PT worked with Porter in this cube chair yesterday and he did really well.  It allows him to lean from side to side and work on getting himself back up. This is great for his trunk strength.   Porter continues to do well on his trach collar trials Continue Reading »

It's official~ Porter was listed today at Texas Children's for heart transplant.  The days he accrued in NC have been transferred over and so now we wait for the call. Continue Reading »

The official Medical Board Review occurred this morning and this time they had 3 surgeons present to talk about the potential of a myectomy.  It was the consensus of the surgical team that the type of myectomy they would have to perform comes with Continue Reading »

Porter had a good weekend and so far is having a good week.  He has been rockin his trach collar trials every day.  He's gone as long as just under 6 hours off the vent which is a pretty amazing feat.  He definitely breaths faster when he's Continue Reading »

Porter had another good day today getting his exercises in and working on his strength.  He is starting to discover that he can reach his feet but hasn't quite figured out how to get his legs up to his hands.  He's trying though!  Throughout the Continue Reading »

The attending on service this week along with cardiology and pulmonology are all in agreement to start working on weaning the vent and really start strengthening Porter's lungs.  They wanted to start with pressure support trials on the vent but I Continue Reading »

Porter and I said a prayer tonight for a little girl down the hall from him who was also in the bed next to him in the CVICU. Continue Reading »

I haven't updated this in a few days because I really don't know what to say.  Steve and I met with the surgeon last week and he said he would be willing to do the myectomy and then proceeded to describe and unbelievably technical and risky surgery Continue Reading »

It was a great weekend with my boys!  Oliver and Porter both had chicken nuggets (well, Porter just tasted it) and then they had a lollipop!  Big brother corrupting little brother already!!!  Thanks to the storms in Atlanta yesterday I got to Continue Reading »

Well the medical board met "unofficially" Friday & I say unofficially because we are STILL waiting on the surgical  consult.  Needless to say Steve and I are quite disappointed & made it clear that we want to speak with the surgeon this week and Continue Reading »

Porter had a good weekend.  We played a lot and worked on rolling over and playing with different toys.  He has two VERY sharp teeth coming in on his bottom gum.  Occupational therapy beware!   Porter is getting really good at trying to roll Continue Reading »

Porter looked so much better today than he has the last couple of days.  It’s amazing what a little blood can do for someone!  He was smiley and playful for the majority of the day.  When psychology came by yesterday to finish their assessment Continue Reading »

Happy 9th month birthday Porter!!!!!!!!!!!!!!! Continue Reading »

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We said goodbye to Porter's OT Cara yesterday.  She's done great work with Porter and we will miss her very much!   Porter enjoyed a cherry lollipop yesterday and put it all the way in his mouth all by himself!!!   Continue Reading »

Steve and I met with the Director of the transplant program yesterday to talk about what they discussed about Porter in their Cardiology conference.  They are leaning towards trying the myectomy first to see if they can section out some of the Continue Reading »

Steve thankfully had an uneventful flight from Raleigh to Houston and arrived late Friday night.  Hooray!  Porter was all smiles when he saw Steve.  Porter has had a good weekend but has been retaining fluid a little more than they would like. Continue Reading »

Porter had the Cardiac Cath today and he did well through the procedure.  His blood pressure dropped a little but they were able to keep it stable.  We don't have any concrete data yet but the pressures are higher than the cath he had earlier in Continue Reading »

Porter had an echo this morning and the hope was that by being off some of the diuretic meds even though he hasn’t tolerated being off of them all together that his LVOTO (left ventricular outflow tract obstruction) gradient would have been less Continue Reading »

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I was able to meet with several people last week from the cardiology team including a meeting from the Chief of Cardiothoracic Surgery, Dr. Fraser.  He was fantastic.  The consensus is that Porter doesn’t have any black and white to his case~ Continue Reading »

They say white noise is helpful when you’re trying to sleep but I had no idea how much “white noise” I would hear tonight when I came back to my room at the Ron Don.  I opened my door to find a huge unit attached to the ceiling blowing air Continue Reading »

Porter has had a good couple of days despite his sweatyness. He sweated through 4 outfits today~ looks like I have some laundry in my future.  When I got into Porter's room this morning I noticed his HR dip into the low 70's then back up again and Continue Reading »

Porter has been keeping down his food well for the last few days on Enfacare.  He's up from 5.28kg to 5.36kg.  (the dietician and myself do question that big of a weight gain overnight but we'll see what tomorrow brings)  The good thing is he Continue Reading »

Porter went up to the OR today to have his Trach changed to a different size.  They took him from a a3.5 to a 4.5.  His stoma was quite a bit bigger than his old trach size so even though he isn't gaining much weight he is still growing.  He did Continue Reading »

Porter turned 8 mo old Sunday, July 20th.  In January we were told that he would not live past 6 months without a new heart and quite honestly many were skeptical as to whether or not he would make it past January.  Porter has proven that he is a Continue Reading »

Porter is back in the PCU and so far tolerating his new medicine well.  He's sleeping a lot but after speaking with the cardiologist he said that can happen and he should adjust with in the next week or so.  They are monitoring his HR and rhythm Continue Reading »

When I spoke with the nurse Monday night she said they were going to switch Porter off the Drager vent and onto an older model. I asked her why and she said the older model has a sensitivity setting that will compensate for the leak from his trach Continue Reading »

Porter's heart rate has been on the higher side the last several days and jumping all around so today he was transferred back up to to the CVICU where they will take him off his Propafanone and start him on Sotalol.  Not sure yet how they will Continue Reading »

Porter was so excited for Friday that he decided to get up at 3:00am and really wasn't interested in going back to sleep until 7:30ish.  Mommy however was not on board with his grand plan but he makes the rules these days so what else could I do Continue Reading »

A runaway roller coaster............. Continue Reading »

We thought Porter would be going back to UNC this week but last week he wasn't handling his food very well so that plan was set back a couple weeks.  They have started working their way back to feeding him over 30 minutes and so far he has Continue Reading »

Porter is trying hard to adjust to the g-tube.  He has not been tolerating his food very well for the last few days with several episodes of vomiting. They initially thought we might be coming home next week but with the recent episodes of vomiting Continue Reading »

UNC has been recognized as the Triangle's first Level 1 Pediatric Trauma Center.  Porter is a big part of this video.   Continue Reading »

Porter was moved last night from the CVICU down to the PCU and has been doing well since.  He has not had a fever today and his hr has been where it should be.  He's still sleepy and recovering from his surgery so he slept a lot today.  They Continue Reading »

Porter's fever broke overnight and his heart rate came back down to where it needs to be.  Phew.  So glad he stayed in the ICU overnight.  We are waiting for a room back in the PCU and he will be going down there sometime tonight.  They are Continue Reading »

What a day.  It started out pretty uneventful, waiting for the docs to come take Porter for surgery to have the G-tube placed.  His surgery was scheduled for 12:00 but they didn't end up taking him up until 2:30.  He was gone for about 2 hours Continue Reading »

Oliver and Steve arrived Sunday night after making a long two day drive from NC through 7 states all the way to Houston.  Oliver was a champ on the road even though he didn't take any naps.  All of the boys have had some time to reunite and bond. Continue Reading »

Well~ Porter is 7 months old!!  Even though most of his life has been spent in the hospital, the time is flying by.  The days feel like they drag but the weeks are gone in a flash. Porter rolled over onto his tummy yesterday and then rolled back Continue Reading »

Steve and I talked to the doctors today in regards to where do we go from here with Porter.  The waiting game continues and we're not getting off the hamster wheel anytime soon.  Porter is not doing a very good job at gaining weight and therefore Continue Reading »

Porter and I have been here in Houston a little over three weeks now and it feels like we've been here forever.  Porter has been weaned off the adivan and still has just a slight bit to go on the methadone and then he'll be off the sedation meds. Continue Reading »

Porter had a big day today.  PT came by this morning with a bouncy seat and asked respiratory to add an extension to his vent tubing so Porter could be in the bouncy seat on the floor.  Porter was falling fast asleep after his PT but when we put Continue Reading »

Porter had a big day yesterday.  He was moved from the CVICU on the 18th floor down to the step down unit on the 7th floor.  We are no longer living in a pod~ Porter has his own room and it's huge. There are two tv's, a couch/twin bed, full Continue Reading »

Porter has been awake and alert a lot today.  We've worked with his pacifier and several of his toys.  The docs bumped the o2 on the vent down to room air today to see how he does with it and so far so good.  We took the "bumpers" away from Continue Reading »

We continue to be in Limbo on putting all of the "puzzle pieces" together for what is best for Porter ~ "Today".  We came to Texas with the impression Porter would be having a Septal Myectomy but the drs here have said the obstruction isn't Continue Reading »

Woohoo! Porter was moved over about 4 feet into an actual Pod today so if we want to have some privacy we can pull the curtain and be in our own little world.  Overnight the doctors decided to test Porter's lung power and gave him a pressure Continue Reading »

Steve and I about lost our minds yesterday.  Our patience was tested and continues to be tested today.  Porter went for his MRI and as they were wheeling him out of the room the staff started moving out our belongings and said we were being moved Continue Reading »

Since arriving in Texas Porter has been seen by neurology, pulmonology, cardiology, general surgery, PT, OT, and nutrition.  Neuro did a CT scan of his head which showed some fluid around his brain but we're not sure exactly what that means right Continue Reading »

Steve arrived yesterday safely from NC and was able to get some snuggles in with Porter.  Porter continues to do well and hasn't had any episodes of his hr dropping since we've been here.  PT and OT have been by to work with him a bit.  His Continue Reading »

I'm happy to report that Porter had an uneventful, safe, calm trip from Chapel Hill, NC to Houston, TX yesterday.  I don't think myself or the doctor that went with us breathed the whole trip and were quite relieved when we arrived at Texas Continue Reading »

This roller coaster ride just gets more twisty turny crazy one day at a time.  Porter had another brief episode last night but was able to come out of it quickly.  His heart and his overall condition seem to get a little worse each day.  We had Continue Reading »

Happy 6th month birthday Porter!!!  You are AMAZING!!!!!!!!!!! Continue Reading »

Porter continues to rest and receive his sedation medication.  He had an episode overnight and one this afternoon where his HR dropped into the low 60's and he turned a shade of blue.  Our docs are still waiting to hear from Texas but have been Continue Reading »

Porter had another episode last night.  They didn't have to do CPR this time but they did have to bag him and he turned blue.  In speaking with the dr and surgeon this morning they really feel that it's in Porter's best interest to be put back to Continue Reading »

Steve’s car turned over to 100,000 miles today and Porter has reached 132 days in thePICU.  The only reason I know that Porter has been in the PICU for 132 days is because I was working on his second Beads of Courage necklace today and one of the Continue Reading »

Porter will be going for an MRI this afternoon so the docs can get a clearer picture of his heart.  Where they initally thought the obstruction was may not be exactly where it is.  Another excuse for lil P to get out of his room for a little Continue Reading »

Porter decided he needed all of mommy's attention on Mother's Day today and gave the docs and us another scare.  His HR went extremely high which is really dangerous for Porter.  They believe this is what happened to him Wednesday right before he Continue Reading »

Porter has had a stable couple of days but the docs are still puzzled as to why he coded the other morning.  They have run a bunch of tests and our surgeon was going to be talking with the surgeons at Texas Children's at some point today.  He is Continue Reading »

We just realized it in has been a while since we updated Porters blog.  With my exams, Steves work and trying to get the house in order for Porter's potential homecoming we lost track of time.  Porter had been doing really well, so well the docs Continue Reading »

Our little champ is amazing the docs a little more every day!!!!!  They didn't really want to mess with his vent settings (as we probably mentioned in previous posts) but being the ever soooo slightly stubborn parents/people we are and knowing how Continue Reading »

Sunday was a big day for Porter!  He went outside, not just outside his room in the PICU, OUTSIDE into the fresh air and sunshine!  The hospital has several gardens that are in between the different buildings so we decided a trip to the butterfly Continue Reading »

Well~ I'm delayed on getting this on the blog, life is crazy these days.  Porter is so far tolerating his regular formula and the doctors will continue to monitor him to see if he starts accumulating fluid again.  He threw up yesterday but they Continue Reading »

Today's post is not about Porter. Continue Reading »

WOW!!  What an incredible day.  The staff at the PICU made another exception and let Oliver come in to see Porter for Easter and for Porter's 5 - yes 5 month birthday!  We cannot believe Porter is 5 months old.  He's spent all of his life with Continue Reading »

Porter had a little bit of a stressed out day.  He was breathing hard most of the morning and just seemed uncomfortable which was perplexing to the docs since nothing really had changed.  They deducted that he really needed to "relieve" himself Continue Reading »

Another good day for Porter.  Not many changes today except the doctors have decided to wean his Ativan to just one dose every 24 hours, increase his Kcal in his formula by 1ml(doesn't seem like much but the slightest change makes a huge Continue Reading »

Life has just gotten a little crazier but in a good way.  We had a meeting with Porter’s medical care team and discussed the progress he has made since being in the PICU.  He has come A LONG WAY since being admitted on January 3rd and the docs Continue Reading »

Porter has had an exciting couple of days as have we!  The nurses have started training us "trach care" which entails someone holding Porter's trach in his throat while the other person cleans his neck and changes the trach ties (the ties are a Continue Reading »

Porter's bed was converted into "spa UNC" today and he took a dip in a "hot tub" (green bucket with bubbles!!)  Our nurse hooked up an oxygen tube to be able to create a "jet like" tubby~ it made a few more bubbles than we thought but didn't over Continue Reading »

Porter has had a great weekend.  He really enjoys sitting up and looking around ~ I mean who wouldn't want to look around after being flat on your back or your side for 3 months. Both Steve and I were able to hold Porter quite a bit this weekend Continue Reading »

Porter got his new Trach so now his chin doesn't sit on the bulky plastic and he can move his head a lot easier without disconnecting the vent~ which is pretty important at this point.  Hopefully he'll get to the point soon where disconnecting the Continue Reading »

The physical therapist came by yesterday to work with Porter.  She was super impressed that he was able to hold his head up and move it around! He's been laying in a bed for three months after all.  She worked on trying to get his shoulders out of Continue Reading »

Oh my~ what a big day for Porter.  Our cardiac surgeon came in and did an ultra sound of Porter's left side and abdomen.  She didn't see any fluid accumulating so decided to pull the chest tube and give Porter a break.  Whoo hoo!!!  Our nurse Continue Reading »

Porter had a great day today.  Our nurse was trying to keep him awake a little more today since the last two nights he's been awake.  He's got his days and nights mixed up a bit over the last few days.  Despite our nurses efforts, Porter was Continue Reading »

Porter continues to do well after his cath procedure.  People from Physical Therapy are starting to work with him more on gaining strength in his neck and body.  We put him in the boppy but he didn't like it one bit.  He's not used to sitting up Continue Reading »

Porter was finally stable enough to be transported down stairs to the Cath lab and had his Cardiac Cath procedure yesterday morning.  He got to take an elevator trip on this outing.  The whole thing took about 3 hours from the time they came and Continue Reading »

It was a great day in Porter's room today!!!  Oliver got to visit his baby brother.  Today was the first time he'd seen Porter since January 16th.  Oliver was so excited.  He went right over to Porter and touched his hand and tickled his feet. Continue Reading »

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Porter has had a good weekend with no real changes. The most excitement happened today when the hospital was on lock down because of an armed and dangerous person who was somewhere on campus. The person was apprehended and lock down was lifted all Continue Reading »

Porter turned 4 months old today!!!!  He has had a good day and has slept most of the day. They have increased one of his medications which helps him fight withdraw from morphine which they are trying to completely wean.  Porter fought a fever Continue Reading »

Monday Night: Continue Reading »

Porter had a wild day today.   Porter was an unhappy camper this morning and scared us a couple times when he looked like he stopped breathing and turned a lovely shade of blue.  Haven't seen him like this since January. His heart rate was Continue Reading »

We just wanted to say thank you to all of you who have already donated to COTA in honor of Porter.  Not only do your donations help with the cost of his actual transplant, they also help with all the transplant related costs and expenses leading up Continue Reading »

Porter had a good night and is sleeping in on the Saturday morning. He was pretty wiggly last night and almost wiggled his iv out of his groin so they had to give him a little extra morphine so they could suture it in place.  He just wants to get Continue Reading »

Porter had a quiet day today.  No big changes or events, just rest.  Both Steve and I were able to hold him for quite a while today and his new bed makes it easier to manage all his IV's and vent tubing.  Next step is going to be to try to sit Continue Reading »

Porter had a better day today.  No crazy episodes with trachs or anything of the sort.  They bumped his morphine back to .08 and he did not have a fever at all today.  They cultured him again just to rule out any infections;  the specimen they Continue Reading »

The docs decided to wean Porter's morphine today from .08 to .07 which you would think wouldn't be much of a problem - normally.  We're starting to think that Porter's fevers are coming from withdrawal from morphine. He was fever free this morning Continue Reading »

Porter's fever came back overnight without any explanation.  All of his labs are normal with exception of his white blood cell count which is in the normal range but higher than he normally trends.  They started him on some antibiotics and so far Continue Reading »

Porter's fever broke early afternoon today and he seemed to be doing better.  His heart rate was back in the normal range and his color was good.  They are still running tests to see if there is an infection going on somewhere, fingers crossed Continue Reading »

Porter had a decent night but continued to breath faster than normal and his heart rate was up in the 150's 160's which is quite a bit higher than they like to see him.  Continue Reading »

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Porter had a decent day yesterday and so far a good day today. He remains off the paralytic which is so great. He's had a little blood in his urine the last couple days so he had a renal ultra sound to make sure he doesn't have any kidney stones. Continue Reading »

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Porter remains the same, no better and no worse. They tried lowering the oxygen on the ventilator but he could not tolerate it so they raised it back to 100%. Hopeful for a quiet/Uneventful day Continue Reading »

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Porter remains about the same today. He had a couple episodes overnight but the docs continue to keep him sedated and paralyzed. During rounds this morning they confirmed that Porter was still on the transplant list just in inactive status until Continue Reading »

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Porter looked really good today; his color was good and his swelling is down quite a bit.  His belly is a little bigger than they would like but he also hasn't pooed in 6 days! Yeiks! They gave him a glycerin chip to hopefully help with that so Continue Reading »

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Porter looked really good today; his color was good and his swelling is down quite a bit.  His belly is a little bigger than they would like but he also hasn't pooed in 6 days! Yeiks! They gave him a glycerin chip to hopefully help with that so Continue Reading »

3/7/14 Continue Reading »

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Porter had an OK night. He likes to keep the nurses and doctors on their toes though. Around midnight he decided to make sure everyone was awake by dropping his BP and O2 making all kinds of bells and whistles go off. Again around 4am did the Continue Reading »

The team here transitioned Porter onto the transport vent to get him ready for his trip on Tuesday!!  So far so good.  It's a lot noisier than the other home vent he was on so we'll be glad to get back to that one when we get home.  Porter has Continue Reading »