Deep silent breaths

We have been home for almost a week. Give or take the initial adjusting period and some slight withdrawal symptoms, it has been wonderful to be back together. Thomas continues to grow and make leaps and bounds in his development. He is not only seeing us and responding to us, he is babbling more and more and reaching for toys. It's simply amazing how awake he is and aware he seems. He is finally sleeping well and through the night and appears to be happy to be home and settled! 

He has a procedure tomorrow to go back to the OR so they can scope him again and possibly dilate, but it should be an outpatient procedure. It feels complete and peaceful for all of us to be together!!

Coming Home

Thomas was scoped again today and they did need to dilate his airway slightly, but they are pleased with how everything looks so we are headed home tomorrow!!!! 22 days!! He rocked it like I knew he would. I am sure it will be unnerving at first to be home with a silent baby, but I can't wait to get back in sync as a family. We will need to come back weekly for a few weeks to make sure everything is still healing correctly, but we will take it! Tomorrow will be a great day! The ironic part is that tomorrow is March 12 and on that day one year ago is when we found out about Thomas's spina bifida diagnosis. Exactly a year ago tomorrow was the worst day of my life and tomorrow will be one of the happiest days in a while, this kid knows how to make a story interesting, that's for sure. It's like he knew that we needed a good memory to associate with tomorrow instead of last year's memory.

Home stretch

Thomas is still doing wonderful. He is having some slight withdrawal, but nothing that we can't get through. He goes back into the OR tomorrow so they can take a look at how the scar tissue is forming. Most likely they will have to dilate it with a balloon. They like to stay on top of that and dilate the tissue when it is still malleable, so we will probably have to follow up weekly with ENT to ensure the scar tissue doesn't shrink his airway back down. Here is the after picture of his airway. 

If you compare the bottom right picture to the before images from a prior post you can really see the extra space he has now. The doctors have talked about us being able to go home soon, it will depend on a few things. He will need to continue to rock out his drug taper and not have any airway issues, but typically they like you to stay local when there was an airway surgery, so if they go into distress you can get here quickly. Our case has been brought up to the decision makers to see if our home is too far away for us to be at. Keeping our fingers crossed that home is in sight. 

Just Wait (part 2)

Just wait. Those two little words that most moms of little kids hate to hear. But, if I could, I would use those words to speak to diagnosis day Sarah....

Dear diagnosis day Sarah,

I know you are grieving about the baby you feel you lost, but JUST WAIT this kid is going to make you a better mom and a better version of yourself. Even though it will still be rough at times, you will learn to celebrate in all that Thomas CAN do and not to be so focused on what he might not be able to do. His victories, which may seem small to others, will be worthy of a parade in your head. You will beam with pride at the little badass that he is.

I know you are worried how you and John will navigate this scary path in front of you and you know that special needs parenting is very rocky terrain that many struggle through and sometimes don't make it, but JUST WAIT! You have never had a doubt that he is the man for you, but you will come to find that he is more incredible than you thought. Later tonight, you will pack up your boys and go for a drive to get out of the house and Johnny will tell David a joke in the backseat which will lead to them cracking up with their amazingly innocent and full blown little kid joy and John will look at you and say, "no matter what happens, we will still have this and we will always all be able to laugh together, this won't change!" and for the first time all day, you will be able to breath. You will be at a level II ultrasound in a about a week and while the two of you are waiting in the room and you begin to lose it once again, he will be the calm, level-headed guy that he is and point out that even in a worse case scenario, we are still getting a new baby and we won't love him any less because maybe he can't walk or maybe he will be developmentally behind and you will breath once again and know that everything is going to be ok.

I know you are concerned about how this will affect Johnny and David, but JUST WAIT those two kids will amaze you. Johnny will immediately love and want to protect his little brother. He will proudly say to strangers that baby Thomas has a boo boo on his back and the doctors are helping him. He will take his favorite stuffed friend, Colonel Quack, and pretend to cath him, just like we cath baby Thomas. He will ask to hold baby Thomas so he can help to make him smile. He will tell you when he doesn't think baby Thomas is feeling well and that we should take him to the hospital so they can help. David will ask to talk to Thomas on the phone and say that he wishes he could come home soon. They will both be incredibly flexible when schedules get changed and they have to stay with grandparents.

You think your family is the bees knees now, JUST WAIT! Your entire family will step up. When you tell them the news of Thomas's spinda bifida, they will cry with you. They will immediately start to think of how they can help or what they can do. This diagnosis is part of them as well and they will own it right along with you. They will help babysit the other boys at the drop of a hat, they will decorate hospital rooms, they will send loving thoughts and drive to Cincinnati just to make sure you can get out of a hospital room for 10 minutes, they will make food, they will literally do ANYthing you need, even if you don't ask. They will teach you what it means to have a village and they will love you through this.

You already trust your friends immensely with your heart (because they are flipping awesome) but you are concerned that this will alienate you from them, but JUST WAIT, they will become Thomas's biggest cheerleaders and supporters. They will be an ear for you when you need it and they will be happy to not discuss it when you don't. They will change an annual trip that you all love to come be by your side when you need it most. They will pack up their kids and drive to just have lunch with you and offer a smile. Friends you haven't had much contact with in years, will come out of the woodwork to offer support and prayers or share knowledge that they may have in an area that Thomas may need. Even friends of friends, that you don't know very well, will make you food and just drop it by your house. Strangers will pick up on Thomas's story and find ways to help. Your faith in people will be resoundingly restored and it will be such a cathartic process to experience what it is like to be a small part of a much bigger whole of humanity.

You don't understand much about spina bifida, but JUST WAIT! You will become an expert on all things Thomas. You will be able to speak with the doctors and medical professionals about what options you would like to explore, you will be able to assertively advocate for him when you don't feel a course of action is in his best interest. You will soon go from being a question asker on the spina bifida forums and groups, to a question answerer. 

So, you see, diagnosis day Sarah, if all this will happen in just a year from where you are now, can you even imagine what will continue to happen.....JUST WAIT!

New baby!!

Thomas has been doing spectacularly well here on the complex airway floor. He is on a normal schedule and we get to play and be unhooked from monitors every day. He's eating like a champ and napping like normal. He does, however, have some pretty remarkable changes since surgery. First and foremost, the stridor is GONE!!! I had to refer back to this post to even remember what it sounded like. Once I heard it, it all came back to me, but here is what he sounds like now...

I can't even believe it! The best part is that due to his ease of breathing now, he has the energy and the desire to do other things. He plays with me and coos at me, these are all new. He was barely able to squeak a smile out at us before because it was so hard for him just to breath, but now he smiles at the silliest little things, just like a little baby should. It is incredible to hear his voice when he coos and laughs. Also he has put on over 3 pounds in the past 2 1/2 weeks because all of his calories no longer just go to breathing. I can't stop taking pictures of him and videos, it seems like such a miracle how much he has changed. As hard as this is, it is already so worth it!

He's done

***NOTE: originally meant to be published Feb 18th. For some reason when I try to publish from my phone it doesn't work correctly***


Thomas is all done with surgery. We spoke with the Dr and everything went well. Here's a picture of his airway before and after and also some pics of the incisions.

We met with the doctor in a little waiting room off of the surgery unit. As I was sitting there, I glanced over and saw a lonely box of tissues on a small table and it occurred to me that some bad news had probably been shared in little rooms like these and those tissues were needed. 

I am very thankful today that those tissues do not have our name on them!! 

We are still waiting to see him. He is being moved to the PICU.  This next part is, as our doctor said, the long boring part. He wants to keep him intubated for about 14 days and there is not a lot to do in the meantime other than pump and sing to him so he knows we are here! 

One week down...

***NOTE: This is posted out of order. This one was originally written before Chugging Along.***

Not much to report from Mr. Thomas. He's been cruising along on his morphine and versed. Other than those first two days, it has been pretty quiet. We are one week into his two weeks of intubation. He is still somewhat coherent though. He ever-so-slightly reacts to touch and our voices, but today he was awake for about 20 minutes and eyes open and blinking and looking at me. It was soothing to see his big blues again, I miss his little smile and his big eyes looking back at me. It seems odd to miss him when he is right here with me, but until he SEES you, you don't feel like he is here. So it was an incredible feeling to have him see me today.

He gets his mouth cleaned every 4 hours and he enjoyed it today, he sucked on the toothbrush like it was his pacifier. 

He was also drooling quite a bit today, which probably means that his top tooth is coming through. It was so close to the surface last week before surgery. I can't get a good enough look at his top gums because the breathing tube is in the way. Just another reason to be excited for the tube to come out and to see his first pearly whites!! 

Sweet spot!

I didn't expect this feeling of pure bliss, but I am over the moon to be holding Thomas and just to see him awake!! My heart is happy today! There is still more adventure coming our way. Next Wednesday, the 11th, he goes back to the OR to be scoped again and see how the scar tissue is forming. If they feel that the tissue is constricting his airway, they will dilate it using a balloon. But for now, all that matters is that my sweet baby is back in my arms. As much as I would like to say that hearing all the kids around us make noise (yes, even cry) didn't make me sad and jealous, I can't. I always had a twinge of sadness to see other kiddos in their rooms interacting, but I didn't realize how much I missed Thomas until today when he opened his eyes. The heart-busting joy took me by surprise, but I love it. Thomas also got to FaceTime with his brothers and he responded to their voice! He's definitely back where he belongs!! 

Extubate, good times, Come On!

PLAN OF THE DAY!!!!

 No more breathing tube!!! He was extubated this morning and is doing great. He is on 2L of oxygen through a nasal cannula and is having no trouble! Last night they turned off his morphine and versed at midnight and to help keep him comfortable while those drugs cleared from his system, they wanted to use a drug that is quick on and quick off through the night, that way in the morning, when the appropriate people were ready, they can wake him up easily. This sounded like a much better option to me than just taking him off the drugs and letting him wake up and be pissed off and have an awful night fighting against the ventilator and the handcuffs and withdrawal. The only setback is that the drug is not recommended for PICU use, they often use it in the OR and on adults, but a study done 12 years ago showed that long term use of this drug in children can increase their chance of dying due to an imbalance (unbalancing?) in their pH. So I had to sign a waiver saying I understood the risks, which is a pretty unnerving thing to do. The doctor assured me they do use this drug in the PICU and have had no issue with it and that they would be keeping a very close eye on him. They would not let him be on it more than 12 hours. This is the exact type of situation that I am never prepared for, I want what is best for Thomas and what will keep him comfortable without compromising his safety or jeopardizing a different aspect of his many diagnoses. I like to know enough to question and understand why the medical teams choose various routes and recommend different strategies, but at some point, you just have to trust them and that is when it becomes scary. I am always reading about spina bifida, hydrocephalus, chiari, etc. and this helps me be prepared for what might come our way, but my darling little boy has really enjoyed forging his own path, so when something unexpected happens and I don't have any background on it, I just have to trust these extensively educated strangers to take care of my baby and I hate it. I signed the release. The propofol helped keep Thomas comfortable and lowered his heart rate to slightly lower than we would like, but other than that, he was fine. They turned the propofol off at 10:25 and it took him about an hour to wake all the way up to a point where they were comfortable to extubate him. As he woke up he was absolutely upset about his current situation and kept coughing and producing more secretions to be suctioned. We listened to our very awesome playlist that we have compiled from prior hospital stays as we passed the time waiting for the team to come in. I am convinced that helped!! He was extubated at 12:05 and has been coasting ever since!!

Waking up after a two week slumber

Assessing to see if he is ready to be extubated

As they are pulling the tube out

Tube-less baby with swollen cheeks from the breathing tube tape.

The lion sleeps tonight

It comes as no surprise to me that Thomas did wonderful today. His ENT doctor said his airway is healing beautifully and they downsized his tube. He will be extubated tomorrow!!! Right now he is resting comfortably and sleeping. It will probably be his last good sleep for a few days. Next step is turning off the morphine and versed and just keeping him comfortable overnight so he can be fully awake tomorrow when they go to extubate. The trick here is going to be him waking up, but not letting him pull out the tube. They would like him fully awake when they extubate so they can see if he is able to breath on his own and ensure he has no trouble with the transition. Unfortunately, as he wakes up he is going to be slightly angry at there being a tube in his nose and his hands being tied down, can any of us really blame him? He will also be battling with withdrawal symptoms, so his week is about to get a lot worse before it gets better. All the more reason this last snooze is so important.

Prepping him for the OR. Such a crowd for such a little boy.

Big empty room when he is in the OR.

It's not a great picture of it, but this is the X-ray of all the tubes inside little Mr. Thomas right now. You can see his VP shunt, his breathing tube, his feeding tube, and his PICC line all coiled up together in his abdomen there....he's like ROBObaby.

Tomorrow is coming

Tomorrow Thomas goes back to the OR for his doctor to take out the breathing tube and scope him in order to see how his cricoid is healing. Tomorrow marks two weeks he has been here at the hospital, after tomorrow, this will be the longest he has spent inpatient in his life. This is the longest I have gone without holding him (and definitely longer than anyone should have to go without holding their baby!). With so many of our thoughts on tomorrow, Thomas must have sensed us losing focus on the now because he had a pretty eventful day today. His oxygen levels kept dropping at times throughout the day, one time getting as low as 28%. They had to "bag" him, which means they put a manual resuscitator on him to push air into his lungs and to help him through his respiratory failure. He seemed to get very upset and his oxygen would drop anytime we would touch him. No one really knew why. He also spiked a pretty high fever, prompting the doctors to order some cultures on his urine and respiratory fluids to test for viruses/infections. We are still waiting on the results of those cultures, but he has finally settled in and his heart rate is back to normal as well as his temperature. He did his job of getting us back focused on the now!!

Even though we have been somewhat counting down to tomorrow, we know that it is only half of this journey. Tomorrow after they scope him to see what is going on in his airway, they will put the breathing tube back in and send him back up to the ICU. If all looks good, they will send him back up with a smaller tube and then plan to extubate (remove the tube) on Thursday in his ICU room. At this time, he will be off the morphine and versed (sedation drugs) and he can start to wake up. Unfortunately, that will be when we have to start a new challenge. Being on the sedation drugs for the amount of time that he was, he will go through some withdrawal. The doctors are hoping to minimize the symptoms using some other drugs to bridge the fall off, but there is only so much they can do. I can't imagine this is going to be a delightful process, but I am so excited to have him awake and be able to hold him and I am just cocky enough to think that my mommy-ness can help with some of those symptoms (and by mommy-ness, I don't just mean my incredible singing voice, but also my milk makers).