The Reason Why I Disappeared

[Grahambo]

Hello Fam,

So, I figured I would tell my people the reason why I had disappeared for so long (because I know you're all knocking down my door to find out). I wasn't initially going to say anything but I believe its a story worth telling and worth bringing awareness. Ill break it up into a few different posts to ease the eyesight but I do ask for patience.

Please, hang in there.

My wife and I had our 3rd child, Liam, back on October 1st, 2015. At the time, we were living in southern MD as I had a job in NOVA. Early on in the pregnancy, the day we found out he was a boy, we also learned something wasn't quite right. The doctor, still have no idea how she saw this, was able to spot that Liam's diaphragm wasn't forming properly. He had what was initially diagnosed as Cogenital Diaphragmatic Hernia (CDH). Basically, the diaphragm doesn't fully form which leaves a hole that allows anything from the lower half to travel into the chest cavity. For him, his stomach, his colon, and part of his intestines ended up passing through. His gap was also left sided CDH which means it pushed his heart over to the other side of the chest. But, what could be killer is the fact that these organs sat on top of the lung and surpassed development of the lung. And with his heart pushing over, it suppressed the other lung as well.

So, with that, his care was immediately transferred to Johns Hopkins in Baltimore. For her entire pregnancy from that point on, my wife had to drive an hour and a half for a routine checkup. Their initial goal was to get Liam as fat and happy as they can get. Size is his best friend they said. The bigger he is, the bigger the suppressed lungs will be. He ended up going the full length, then on October 1st, they induced her. They wanted as natural of a birthing process as they can get. Less stressful for him they told us.

16-17 hours later, she had only opened up to about 4cm. (Those with kids already know what I'm talking about.) The doctor wasn't liking what she was seeing on the monitor either. The decision was made to conduct an emergency C-section. The wife was relieved. The procedure was done and Liam was taken out. He made a slight sound but they shut him up quickly and intubated him. Also turned out that my wife's uterus had ruptured, Liam was traveling backwards, and the umbilical cord was beginning to wrap around her stomach. Doctor said a few more hours and neither of them would've survived so good job Doc.

 

[Grahambo]

Out comes Liam and now the doctors can finally assess him, top to bottom and inside/out. What they find is a whole lot of trouble brewing. His lungs were estimated at the time to be at around 7% total capacity. For reference, you can live a normal life without assistance at 22% lung capacity. With that however, Liam also was diagnosed with Pulmonary Hypertension.

The early days were not easy as he was not doing well at all. He lasted only a few hours in the NICU before they transferred him to the biggest room they had in the PICU. The bigger the room, the more machines they can fit, the worse the case is. Room #27 to be precise.

Liam lasted about a week before they decided that he needed to go on ECMO. Essentially, its a heart and lung machine or life support. They needed to take him out of the picture completely. What it is is a procedure where they surgically insert two cannulas through the neck and into the heart/lungs. What it does is it pulls out the blood from your body, oxygenates it and then puts it back into you.

They were also finally able to repair his hernia. They basically open you up, put things in their correct spot and patch up the hole. (Liam also had a small hole on the other side too) He lasted 30 days on ECMO. In those 30 days, he was on two different ventilators (they would switch him back and forth), nitric oxide, dialysis, two steroids, two blood thinners, roughly 30+ medicines, ECMO, while also having numerous chest tubes put in and out as his lungs were collapsing and aspirating. He also suffered two strokes during this time.

 

[Grahambo]

On day 30, as they were testing him to come off ECMO, he developed the "biggest clot I have ever seen". That comment came from a 15 year Respiratory Therapist. What they do is they clamp the machine to see how your body responds. As they were testing him throughout the process, he wasn't looking good. Basically, they didn't expect him to make it. Nobody gave up and they all tried their hardest. At one point, the doctor told my wife that he is defying medical science.

So, they can't turn the machine back on or else this clot will get shot thought him and basically end him, so they had no choice but to take him off the support without him being fully ready to come off.

He survived. The focus then turned to his heart and his hypertension. Upon deeper examination, Liam's heart had a PDA at the bottom of heart, his blood flow was opposite of "typical", and a valve never closed. This valve, closes automatically upon entrance into this world. Sometimes, it doesn't. Sometimes after a few days it closes on its own but for Liam, it never did. For that, they did a procedure where they entered his body through his groin, traveled north and "put a cork in it". Literally. Doctor said no different then a wine bottle. The cells will grow around the cork and keep it in place. With that, the pressures in his heart reduced drastically. They said they could see it get better in real time before they were even out of him.

Ever since then, he has slowly, ever so slowly been getting a little healthier, a little bigger.

About 4-5 months into it, they did a tracheostomy. He was finally no longer intubated which was a small victory. Everything is a small victory. It all matters.

 

[Grahambo]

We ended up transferring his care to the Children's Hospital of Philadelphia and moving to NJ (where I'm originally from). His main diagnosis now is Pulmonary Hypertension. His cardiologist developed a plan to help his lungs grow. Because of the collapsing and aspirating, his lungs were full of air/fluid. The plan was to keep Liam on his belly 18 hours a day to pop open the bottom part of the lung which forces fluid off the lung. That'll allow the blood vessels to grow through the lung which will then allow the lung itself to grow.

Again, growth is our best friend.

1-2 months of this plan, they brought Liam down to do an EKG, ECHO, etc. The doctors goal was to get him to 22%, when they tested him, Liam's lungs grew to 44%. High fives and hugs all around. He went from less then a 10% chance at survival to now 44% lung capacity.

He also had a brain scan done. Thats when we learned of his two strokes so he does have a little brain damage. He also was born without some of his brain being formed at all. He has excess spinal fluid in his brain and the glands that produce the fluid is 3-4x times larger then they should be.

Fast froward to today, Liam is home. He is on a ventilator 24 hours/day, he gets fed 24 hours continuous feed through whats called a G/J tube. His 30+ medicine regimen is now down to about 16 that he receives around the clock. He receives an RSV shot every month for 6 months during the winter months. He receives in home physical therapy, speech therapy and developmental intervention therapy. We receive 16 hours of in home nursing (which is a whole other story).

 

[Grahambo]

His outlook? Very positive. He will eventually come off of all the machines and most, if not all of his medicines. He receives a few special medicines that are special delivery to the house every month. He's super active. Super happy. Loves books. Loves to laugh and is simply a good time. He's still got a long road ahead of him but he can finally sit up with assistance and has gotten most of control over his head.

He is a miracle. No other way to put it. He's such a unique case that the doctors had asked us if Liam could be a case study for them as they try to further advance pulmonary hypertension treatment in pediatrics. He's enrolled in CHOP's Pulmonary Hypoplasia Program and his care is being used to further advance medicine. He's paying it forward.

Between him, dealing with the nursing agencies, the insurance company's (unbelievable and not in a good way), moving to get him the proper care, etc. its been one helluva ride. Such a ride that we might even move back down to NOVA so I can resume the career that I had left behind.

Thank you for your patience and if you're looking for a cause to donate to this year and want to try something different, please look at CDH. Its a world not many know exist and it can use any help it can get.

Feel free to ask any questions in here or in private. I have no problem answering. Theres more to his story but thats the meat and potatoes.

Thank you for your patience.

Grahambo

 

[NDinBoston]

Wow, what a family. My daughter was diagnosed with Leukemia at 18 months and went through 4.5 years of treatment at children's hospital in Boston. She is now 14. I know how scary and challenging it is and really appreciate you sharing your story. It changes you forever in a good way. Liam is a miracle and you have my thoughts and prayers for his continued progress.

 

[Veritate Duce Progredi]

Thanks for sharing Grahambo! My wife and I are pulling for your little guy. My wife works at a fetal care center where they take care of CDH patients. Please keep us updated as things progress.

Strong little man you have.

 

[Irish#1]

We've had a few "episodes" with out kids, but nothing quite like this. The human body and spirit is unbelievable, especially at that age. So happy to hear he's making good progress. Prayers for his continued recovery.

 

[PANDFAN]

Glad to hear things are improving and one victory at a time

 

[woolybug25]

Wow. I had a kiddo this year too, so I can empathize with the fear of things not going right. But for me and most others, it is never more than simply fear of what could happen. Your struggle was beyond what any parent should have to endure. Blessings to you and your family. Better days are ahead.

 

[GrangerIrish24]

Unbelievable and thanks for sharing. My thoughts and prayers are with your family as progress continues.

 

[Irishman77]

Welcome back. May God continue to bless your family.

 

[NDShark]

Wow, what a story. My eyes were glued to the screen. Glad to hear Liam's doing much better. I wish you and your family good health moving forward.

 

[ShakeDown]

What a story man. Glad to hear things are progressing positively. God bless to you and yours.

 

[BleedBlueGold]

I know what it's like to have a child born with many medical issues/conditions. I'm very thankful your little guy is doing well. Thanks for sharing, and welcome back.

 

[ND Fan Vancouver]

Grahambo, I don't know you but your story touched me.
Thanks for sharing. All your ND brothers are here for you!

 

[irishnd31]

First off congrats on the newborn. Better times are ahead. You and your wife are very strong and I am sorry that both of you had to endure this. Most importantly I am sorry that your little one is going through this. This will make him strong and he will surprise you every day with his victories. I wish all of you my deepest and most sincere well wishes and you all will be prayed for. Stay strong bro.

 

[NDohio]

Amazing story. Prayers to you and your family. Liam sounds like a strong one. Thanks for sharing.

 

[ND4LIFE]

Thank you for sharing this with the community. I spoke to a close friend of mine who is a cardiac perfusionist and he was fascinated by your child's plight. He said that he must be a real fighter! I can see it has been a long hard battle you all have been waging and I applaud your attitude. It is amazing that in the hands of the almighty what man can do when things look bleak. I cannot wait to hear of what more your little man can do. He is truly as miraculous as his family and the love God has for you all. Prayers and best wishes!

 

[zelezo vlk]

Deo gratias, glad to have you back.

 

[irishff1014]

Wow you did go through one bad dream. Good to see that he is continuing to improve that's awesome news. Good thing you had John Hopkins and Children's hospital of Philadelphia very close you as they are both very good hospitals. Prayers that he will have continued growth.

 

[kmoose]

I'm not much of a Catholic, let alone religious, even though I attended Catholic elementary school. But I am a big believer in karma. My theory is this:

Everyone has an account in the "Bank of Karma". Whenever we do something kind, thoughtful, or just "right", simply because it is the right thing to do; we make a deposit in the Bank of Karma. Every time we are mean, cheat, steal, etc., we make a withdrawal. The key in life is to maintain a positive karma balance. That way, when you need some, there is some available. I don't know you, Grahambo, other than what you post here. But if that is any indication of your character, I believe you have a large balance, and I pray that whatever divine deity controls the bank allows you to pass some of it on to your son. Stay Strong!! You have my respect and admiration, for whatever that is worth.

 

[Kingbish01]

Grahambo, thanks for sharing. You and your wife have been through so much, and you have such a great attitude. Prayers to you all, and please keep us posted on little Liam!

 

[ACamp1900]

Wow... my parents went through a lot of the same stuff with my sister 25 years ago... different cause but sounds like a lot of the same results... I can understand quite a bit of this experience Grahmbo... it's def not easy. Prayers to you/yours and for whatever it's worth my sis is doing fine today.

 

[Domina Nostra]

Grahambo,

Wow, just wow. So glad to hear things are progressing. Praise God.

I had boys with lung issues in the NICU as well. As you said, growth is your friend. Most things that happen in the NICU, stay in the NICU. Mine totally outgrew the lung issues. No lingering issues.

In the end of the day, doctors are really there to set up the conditions for the baby's body to do what it does and let nature takes its course--with a lot of prayer and will power from the little guy.

I'll be praying for him!
Domina

 

[InKellyITrust]

I'd highly recommend Bayada as a home health nursing agency. Good luck!!

 

[BeauBenken]

Keep it up little Liam!

Good to see ya, Grahambo. Best wishes to you and the family.

 

[OCIrish]

Grahambo, welcome back!! What an incredible journey your family has been through, my youngest has some issues but nothing like what you guys have had to face!!! Soo happy that you've got such a little fighter on your hands, I'll keep you guys in my prayers, best of luck to Liam going forward!!!

 

[CrystalHead]

My thoughts and prayers are with you and your family. Thank you for putting life into perspective. Sometimes we get caught up in the trivial things in life and lose our focus on what is real and important.

 

[dwshade]

God bless you and your family my friend.