Carters PHight

11/10/2020

Carter has been doing great, hopefully he keeps up the great work 😍😍🙏😘😘🙏❤❤

Carter started another antibiotic for another infection that grew in his trache. Since we started them the other day along with stopping one of his medications, he has been doing well. So fingers crossed he keeps it up so we can get him home for the holidays ❤❤🎄🎄

11/01/2020

Happy Halloween 🎃 🎃🎃❤❤🦖🦖🦖

10/18/2020

Update on Carter:

Carters team of doctors last talked with Boston towards the end of September...Boston stated that Carters obstruction is "not as bad" as their other patients who have had that specific surgery. Carter has a 60% blocked airway, which is a lot, it's just not the 95-100% that they would have preferred.

So, unfortunately, Carter will not be going to Boston. He is not a candidate for surgery to repair his 60% blocked airway....so he will remain in the PICU at Albany Medical until we can come up with an alternate plan. Ideally, yes we would love Carter to finally be at home with his family ❤❤❤❤ but we do not hold those reighns, that would be Carter. If he does well with some upcoming tasks, then it would be more of a possibility for him to be discharged home, but if he fails....well then
Carter would have to to be transferred to a rehabilitation center. He would again, be with strangers. They wouldn't know his quirks, what upsets him and what makes him laugh...not to mention his sense of stranger danger now!!!

Carter deserves the chance to thrive at home surrounded by his loved ones cheering him on❤❤❤❤🥰🥰🥰🥰 I am going to pray and have faith that Carter will do nothing but amazing things in the next couple of weeks 😘😘❤❤🥰🥰 its time to bring our baby home......Carter deserves this, we deserve it ❤❤❤❤❤

10/18/2020

Sunday mornings with Mommy 🥰😍😘❤❤

10/08/2020

Goodmorning!!!

Carter had a rough night/morning this past Tuesday going into Wednesday morning. His saturations were dipping as low as the 40s. No temp, BP are fine along with all of output with fluids. They had to boost his o2 requirements up for a little bit, but he is back down to 45%.

I spent all day yesterday with him, I rocked him, bathed him, cuddled him and played with him. He wasn't his smiling little self like usual. You can tell when something is going on bc it knocks him all the way down.

(( for the past 5 months, I've been saying carter has been teething ((lol)) bc his gums are so white. So yesterday, I decided to feel around his mouth to see if anything has popped through. And would you look at that, his first tooth popped in on his top rop right in the front.))

The rest of his day seemed pretty good. He was not as active as he normally is, but comfortable and tolerating whatever discomfort he may have had.

Wednesday night he had a good night, until his saturations started dipping into the 80s...Carter was sleeping soundly. They decided to get a chest x ray....which showed atelectasis which is Complete or partial collapse of a lung or a section (lobe) of a lung.
His team started him on antibiotics to help as well. We are still waiting for his trache culture to come back. Carters o2 requirements were bumped up to 60%, while he is sleeping. When he is awake his saturations are high 90s and his o2 requirements are between 40 and 50%.

Hoping we were proactive this time, and not reactive to whatever may be brewing ❤❤❤❤❤❤❤

Like I've previously said, this journey is not easy and definitely very stressful,but this still remains, Carter PHights, we PHight. ❤😘🥰❤😘🥰❤😘🥰

We LOVE you Carter David ❤❤❤❤❤❤

https://www.facebook.com/110538110772257/posts/135936918232376/

10/04/2020

...because I'm happy, happy, happpyyyy.... ❤❤❤❤

Carter is an amazing little boy who despite all that he is battling, he is always smiling ❤🥰😘😍

We love you Carter David ❤😘❤😍❤

10/01/2020

On December 13th of last year Carter fell ill. We started him on antibiotics, started him on vecuronium ( which is a paralytic) with 3 to 4 drips of sedations to keep him calm. At this time Carter was already diagnosed with pulmanary hypertension, so he was 2 medications already for that. We also started him back on Nitric oxide at this time. The plan was to keep Carter calm so he didnt have to work to breathe....the vent was supposed to do it.

(( At this time, Carter was just getting over being sick in November, so for him to be sick again was not good....so when I found out he was sick again i started researching babies with BPD, babies with PH...anything that pertained to Carter, I researched. I also took notes everyday.....so I never missed a beat when it came to researching ❤❤ so I found out that babies like Carter may need different vent settings....vent settings vary patient to patient......patients that are dx with BPD and PH have particular vent settings they should be on to allow thier lungs the proper pressures....they need higher pressures & lower rates. At this time I had reached out to nationwide childrens hospital in OH, asking for help, well no pleading for help. Due to laws they couldnt give me advice over the phone, so I told the lady carters vent settings, and asked her to say yes or no to the fact of them being too low. She did. She told me to have our team call and speak to their attendings. I spoke to carters team, but unfortunately because he was already on vecuronium they didnt see the need to adjust anything at this time. We were letting Carter ride it out. ))

Sunday, December 15th, 2019, I went into the hospital with Carters Dad, Anthony. We spent time together, I held him, kissed him lots and took pictures with the 3 of us. Although he was "sleeping" it was a nice day. We left around 6pm.

11pm that night my phone rang with the dreaded hospital number 262....

I answered, it was Dr.Pinheiro...." Danielle you should come back into the hospital. Carter has been desatting as low as 5%....we started bagging him....we suggest you come in..."

I was in shock, wasn't expecting this call, we just put Anthony in bed between the two of us, sleeping peacefully, just as we left Carter, sleeping peacefully.

I get up, wash my face, wake Anthony sr. Up to tell him about the phone call, told him to get up and get ready....he told me to go...he would meet up with me soon, so i left. Leg shaking uncontrollably. I call my mom, tell her to meet me at AMC. I arrived at AMC around 1142pm. I ran upstairs to the NICU, ran into Carters room. To see his room filled with that many people with a "code cart" outside your sons door, you know its serious. I walk into carters room with Dr.Pinheiro bagging our son. With each pump of the bag, Carters belly went up then down. No movements. No eyes opened. Just his belly going up and down.

I prayed, and I prayed some more. I remember looking up saying, is this it? This cant be???!!! Dr. Pinheiro asked me what to do, I said we need to wait for his Dad to get here.( At this time my mom went to pick both Anthony's up in the middle of a snow storm I might add. ) when they arrived it was a little before 4am. Carter was still being bagged. At the point in time they had been bagging Carter for going on 5 hours. Dr. Pinheiro along with nursing, and respiratory therapists kept our son alive for 5 hours. Let me tell you how tiring that can get, but not one person complained, not one. They truly were trying to save carters life right in front of my eyes. Holding Carter while they are bagging him is something a mom can never unsee.

6am came. Dr. Pinheiro asked me what else they could do......I said first let's take him off of vecuronium. Then lets Implement nationwides protocol, higher pressures and lower rates. Dr. Pinheiro said ok, let's do it. Between myself and Anthony Sr. We held Carter until that evening when his number started miraculously climbing upward ❤❤❤❤ by that night Carters numbers were still bad bc he was needing 100% fio2, but he was now satting in the 90s. We saved Carters life that morning my implementing those changes, and most of all we never lost faith and we never stopped believing in him ❤❤❤❤❤😘

Carter is a PHighter and he is such a huge miracle in so many ways. He has come so far, but yet has so much further to go. We love our son, and will never stop advocating for him until he is home with us ❤😘🥰😍😘

09/30/2020

Baby Carter Jappas fights for his life

He is amazing!!

ALBANY, NY (WRGB) -- Last year Danielle Forbes' son, Carter Jappas was born at 28 weeks, weighing about the size of an average canned good at 14 ounces. "It was July 1st and Carter made his debut appearance at 10:00 p. m,” Forbes said. She added, “Everyone became silent because we weren'...

09/29/2020

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09/28/2020

It's been 2 weeks since I posted last...I apologize ❤❤

Carter has been doing amazing at healing and we feel maybe even doing better than he ever has before!!

We heard back from Boston Childrens in regards to the surgery to improve his tracheomalacia. Dr. Jennings spoke to Dr. Ambati last thursday (9/24) and said Carter doesnt have enough " blockage" to complete the surgery. Carter has 60% blockage, Dr. Jennings said his patients typically have 90% or higher. Ok, so this is great that Carter doesnt have 90%, but stinks that we cant improve his 60% to become lower.

So we take the news, and we roll with it, When you are living this life on this nauseating rollercoaster ride you tend to become accustomed to the flips and turns........so we will continue on this ride until it comes to a screeching hault and we are all able to get off as a family ❤❤❤❤❤❤what else can we do. We are here for our Carter, we will continue to be his advocates and will continue his PHight until he is able to come home ❤😘❤😘❤

09/16/2020

Carter has been having a great month ❤ this morning at 2am marked 1 month since Carters cardiac arrest....the mountains and hills ( note no valleys this month 🥰) that he has climbed up this past month is astonishing ❤❤❤ he has stood at every single mountain top to let all of us know he is fighting and conquering his battles ❤❤❤ there were moments that I thought I'd never get my Carter back, but he is here and has been able to almost make a complete recovery since his cardiac arrest, we couldnt be more proud of him❤❤❤ we love you so much Carter David Jappa ❤❤🥰😘😍

09/12/2020

Carter is an amazing little boy and I am thrilled to say that Carter's procedure went very well Thursday morning. Dr. K was able to complete the bronch and get what Dr.Jennings had asked for, thank god ❤🙏❤

In reviewing his findings we went over the pictures and his video from thursdat....it is definately confirmed he has tracheomalacia.....wait for it...........and carters lungs are cleared ❤🙏❤ with that being said, once Boston receives the reports, we will find out more about our next steps... hopefully getting him to Boston would be Carters next stop on his PHight train ❤🙏😘😍🥰👣

Chooooo choooooooo, Carters coming to town ❤😘😍🥰

(( I'm going to post a video from today after his procedure....and I am thrilled to say that Carter is putting his chapstick back on ❤❤🥰😍 after his cardiac arrest on 8/16, Carters fine motor skills were deteriorating ( well at least I thought so) and it worried me. I didnt want to push him bc of all he just went through, so I have been patiently working on those hands of his and letting his nurses and therapists in on this ❤❤ AGAIN....freaking amazing.....he is putting his own chapstick on AGAIN.....he is amazing in every single way!!!!))

We love you peanut chew, and we are so very proud of you ❤😍🥰😘❤

09/10/2020

❤🙏❤

(( it's dark bc I was driving and of course its night time))

09/10/2020

Little bear 😍💤❤😘

09/10/2020

Carter & Mommy time tonight ❤😘🥰😍 mommy giving me my pep talk for tomorrows procedure ❤❤

Sleep tight my loveyyy....we will see you bright & early 😍❤💤

09/09/2020

So Carter has to have a repeat bronch completed per Boston this Thursday. Carter had to have, yet another, covid test yesterday, which thankfully came back negative ❤😘

The plan is to do a complete bronch....his last one was just of the top portion due to Carter having to be bagged due to his declining saturations at the time of the procedure....so Dr. K didnt push the envelope and did his report on just the top portion , which ended up confirming Carter having tracheomalacia. So the point of repeating this test is to see if it is in his lungs...if it is there....there is no surgery available and Carter will just have to grow in order for it to get better, which could take years at his rate 🙄❤

So let's hope it is just tracheomalacia.....if it is just that, Boston will be able to do this procedure to make his 60% blocked airway better....there are no definates in this surgery but they can definitely make it better......for Carter that is a huge difference...so until those results come in, we wait patiently and stay positive for our loveyyy ❤🥰😘❤

09/05/2020

You are simply amazing Carter ❤

09/05/2020

Carter telling mommy all about his day yesterday ❤❤

09/03/2020

Cuddle time with mommy tonight ❤🥰😘

09/03/2020

Had a busy day today ❤ I had PT and OT this morning....followed by a busy afternoon with mommy ❤🥰😘😍

Hope everyone had a great day ❤❤

09/03/2020

For my beautiful daughter and my precious grandsons...🥰❤️

09/02/2020

So last friday was crazy to say the least. I called Boston myself along with CDPHP. Boston gave me the run around while CDPHP had answers for us. Carter was approved by CDPHP to be transferred, it was Boston Childrens holding up the process. We were all confused as to why this was happening.

So fast forward to today. I just received a phone call about 45 minutes ago from Dr.Ambati from AMC PICU. He had a video conference with Dr.Jennings from Boston Childrens.The conversation went well. So when Carter had his bronch completed 8/11/20, it wasn't a complete bronch, it was only the top portion of his airway,not the bottom half, this was due to Carter clamping down and having severe desturations while they were completing it. Dr. K had decided to only complete the bronch half way bc of this. So today, Dr. Jennings, told Dr. Ambati we need to repeat the bronch to get the whole picture and video sent to him. This will be completed next Thursday, 9/10/20. Once this is sent to Dr. Jennings he will decide again if Carter is a candidate for the surgery. If the tracheomalacia is only in the top portion of the bronch and not in his lungs he would be able to operate, however, if it is in his lungs then Carter will have to simply outgrow it.

I am extremely happy we got some answers, but we still have a long road ahead of us ❤❤❤😘

08/30/2020

...Easy like sunday morning....❤😍🥰😘

08/30/2020

Carter has been having a great weekend ❤❤ he is starting to take his meds again by mouth( per his gtube) and not by his PICC line. Everything else is pretty stable ❤❤😘😍🥰 no complaints over here....he is happy and stable, and were in love with him, that's all that matters 😘❤😍🥰❤

08/30/2020

This boy has been dealt the hardest hand. And he STILL smiles the BIGGEST smiles through the very hardest storm. You are teaching us so much Carter 💙💙

I know many of you have donated and we are so appreciative of your generosity. The truth of the matter is.... we have a long way to go.

Danielle continues to fight for Carter to get him moved to Boston. It has turned into a battle with Insurance. Finances shouldn’t be a reason that this sweet boy doesn’t get the care he so deserves and so desperately needs 💙

You got this little pork chop 💙🙏🏻💪🏻

Donations can be made on Venmo ID: @Carter-Jappa

Please cut and paste ID to be sure you’re donating to the proper account

If you prefer to use go fund me find the link below...

https://gf.me/u/ymzc56

08/29/2020

Carter's Cheerleaders organized by Denise Deitz

Some people have been asking where they can donate...Carter has a go fund me page and a venmo account. His fundraiser was cancelled due to covid.

gf.me/u/ymzc56
venmo @Carter-Jappa

My Sisters little peanut was born at 28 weeks weighing only 14 oz's. Carter will be in the NICU u… Denise Deitz needs your support for Carter's Cheerleaders

08/29/2020

Hope everyone has a great day ❤❤❤❤

(( a little pirate fun with Carter man🤣❤😘))

08/28/2020

Yesterday was a tough day....well heartbreaking actually 💔 we received a call from Dr.Ambati around 1130 am......whenever I see AMCs number come up, my heart always stops......so I quickly answer.....Dr. A...."Danielle, I have some bad news." Okkkkkk......well please tell me what's going on.....Dr.A, " well we just got news that CDPHP and Boston couldn't reach an agreement with thier rates." Okkkkkkk......Dr. A, " so, now we have to figure everything else out for Carter, we can reach out to other hospitals....."..... at this point my ears just heard nothing......nothing............nothingggggg......

I got off the phone with our oldest son Anthony screaming & jumping on me as I just sat there. Numb, not feeling anything. What I just heard was a parents worst nightmare....pardon my French.....our son who f**king has insurance, you deny --- what the hell!!!!! Children should not have to worry about sh*t like this... let alone the parents of medically fragile children shouldn't either 💔

Jappa and I just sat in silence for about 30 minutes. Jappa tried to console me, rubbing my back asking Anthony Jr to join in on giving mommy lovings ❤❤❤ I didnt cry. Just sat in silence. My heart just aching for our boy and for us ❤❤ as a parent you want the best for your child and especially when it comes to thier healthcare.......

When we got to AMC all of the heartache goes away by looking at our perfect son ❤ his smile, his personality....everything else disappears when we are with him.....he is our other heartbeat and the more we fight for him, the harder he fights ❤❤ so we keep on PHighting ❤❤❤😘😘😍😍🥰🥰