He's pretty cool!

Thomas is getting an MRI today of his brain and total spine. This is just a follow up from all the activity that has happened in the past two months, but it is also to keep an eye on the cystic structure in his brain since it has increased in size recently. We are hoping for an 'all-clear' prognosis and looking forward to a small break in hospital time. This kid takes these possible stressful situations and makes them so much easier on his mommy. As we were waiting for the doctor to come in, the nurse was doing vitals and he just breezes through it all. Blood pressure, he thinks it's hilarious. Temperature taking, equally funny. Listening to him breathe, almost as funny as his big brother jumping up and down. Looking for a good place for an IV poke, fascinating! He is hungry and tired, but he is so laid back and care free that I feel guilty for my grumpy pre-coffee demeanor (guilty enough that I walk, rather than aggressively jog, to get coffee once they take him back). He's just an awesome kid and that is really the only point of this post. I am nuts about him and think the world should be also!!! 

My bad ass 'bif baby

Thomas had shunt revision surgery at 8:00 pm, August 4th. He was NPO ALL DAY!!! This means he couldn't take any food by mouth. He had an IV in so he wouldn't get dehydrated, but that is not the same as eating and usually he is super cranky if I am there while he is hungry and I have the audacity to not let him nurse. For some reason though, he was perfectly pleasant. He played and laughed and interacted and made me doubt why we were even there. When the neurosurgeon came in, he seemed to be questioning if we should go ahead with the surgery, but the information that we had - the shunt tap not being able to get much fluid back and the ventricles being enlarged - all pointed towards something going wrong with the shunt. They took him to the OR around 7:30 and the doctor came out to talk to us about 10:00. He had a plastic bag with him that had something in it I didn't pay much attention to it at first because I was trying to read his face. As he began to speak, he said Thomas was fine, but his shunt was basically completely clogged  and he reached into the bag. He had brought the proximal catheter of the shunt to show us and on the tubing was the stuff that was clogging it, the choroid plexus. I love medical stuff, I wanted to watch my C-section, I don't get quesy with stuff like that, in fact I find it very interesting, but the thought that part of my baby's brain was in that bag and had been clogging his shunt made my knees a little weak. He proceeded to tell us that he was surprised by how clogged the  shunt was since earlier in the day Thomas was acting so normal. Part of me beamed with pride at my tough little man, but part of me felt nauseous that he could have been living with this pain in his head for quite sometime and we didn't even know, that maybe he didn't know what it was like to live without pain. The important thing is now the shunt was fixed and he was in recovery so we could go see him. He looked so completely exhausted when we got to him, but when he heard our voices he strained to see us and open his eyes. He even gave John a sweet little smile that seemed to take all the energy he could muster. He slept great that night and hit all his post op milestones the next day so they sent us home on Thursday! He is doing incredible. He babbles more and is very alert to everything going on around him. He seems to be brighter and more focused. This is the point where we could start to worry about how we will know if this starts to happen again, but taking my lead from one of Thomas's many lessons he has imparted on us, I choose to enjoy this time. Be here and revel in it. He's healthy, he's home and he's happy!! 

Off to the OR

Well after a day of sitting here for observation, Thomas's neurosurgeon has decided that surgery is a good idea. They tapped his shunt yesterday, meaning they stuck a needle into his shunt reservoir and drew out some fluid which can help them test the pressure and see the flow of Cerebral Spinal Fluid (CSF), as well as test it for infection. They weren't able to get a lot of fluid, which was concerning and can indicate a blockage in the proximal catheter (the part of the shunt that goes into his brain). So that, compounded with the increase in his ventricles, led the surgeon to believe a shunt revision surgery would be the best option. So Thomas is an add-on today for the OR room, which is about as much fun as dancing barefoot on a floor carpeted with Legos. It means Thomas is not allowed to eat starting at midnight and lasting until after surgery when the anesthesia wears off and the surgery could possibly be as late as 8pm, not a great equation for a happy one year old. We just wait. And wait. And try not to think about food.  It is noon right now and actually he has been amazing. Hoping we get the call soon. 

You snooze, you lose

Thomas turned one two weeks ago and on July 31 it was the one year anniversary of the day our family lived together under one roof, the day he came home from the NICU! As these momentous occasions approached, I felt I needed to post something to give them their due celebration....but I was having trouble. I felt I couldn't find the words that would really give justice to those life changing events. I wanted to speak from the heart and show how much he has grown and taught us and all he had been through. To really pay tribute to an amazing first year of life.  On more than one occasion I sat at the computer wanting to put it all into words, but everything I would type just didn't seem enough. It never was what Thomas deserved. It didn't express the magnitude of emotion that was tied into the anniversary. So his birthday came and went and then July 31 came and went. I even came across this bottle of pumped milk that was the last bottle of milk I pumped in the hospital before we brought him home and became his parents without doctors looking over our shoulder.

That has to be gold, right? Where was my epiphany? Why couldn't I find the perfect words? It had been an amazingly hard and joyous year and I should be able to do this and share it with all those following Thomas's journey....

In true Thomas fashion, he found a way to make a point to me. About a month ago we had a bladder ultrasound and it showed his bladder wall had thickened. This is concerning because it means that his bladder is working harder than it should. The bladder is a muscle and the more it works the larger it gets, but with size you lose elasticity and a bladder needs elasticity to expand and hold urine. Thomas's bladder was constantly working to empty itself, but because his bladder and sphincter don't communicate properly, due to the nerve damage caused by his spina bifida, the sphincter wouldn't open. This led the bladder to work with no progress. Much like if we were to constantly push against the ground as hard as we can without stopping. We weren't sure what was causing this, but we needed to figure it out so we can stop the damage. This lead us to an appointment with neurosurgery because it could all point back to the shunt or even be a tethered cord that needs to be dealt with. These are things we can't see and are close to impossible to recognize in the lack of big red flag-like symptoms. The neurosurgeons were concerned and sent us to get a limited brain MRI. They mentioned to pack a bag when we went to the appointment in case he needed to be admitted for a shunt revision based on the scans. The MRI was on a Friday and they let us go home based on what they saw, but Sunday morning we got a call to come to the hospital because his ventricles were increased. 

The left picture is his scan from Friday and the right picture is his scan from December. The arrows are pointing towards his ventricles and you can see from the white space (which is fluid) how much larger the ventricle is now.

So in we came. With no real plan or clear course of action, we have been here for a day. Something is different, he is a little fussier than usual, seems a little more agitated, isn't sitting as well as he used to, but no real obvious signs of anything going wrong. Those could all be teeth coming in, he's getting sick, or any number of typical baby things. So they are observing him. 

And here we are, I am again writing while we are in the hospital. Instead of celebrating his wonderful birthday or homecoming, we are informing everyone of a hospital stay. I hate that. He is so much more than hospital stay after hospital stay and I wanted to write about that. I wanted to share his joys, but because I was so worried about being perfect and having the exact right words, I missed the chance. And that is where Thomas comes in, he found a way to tell me that perfect is dumb. I can't let the perfect get in the way of getting it done. It's almost like he's channeling NIKE....just do it. Stop thinking and worrying if it's good enough....it already is and if you freeze from fear of less than perfection, you will miss your shot. Luckily he chose to show me this over a missed blog post rather than a missed memory or something bigger. I won't let that happen! Message received, little dude! I am here and will be the mom you need all the time and without second guessing what I am doing, it won't be perfect, but it will be me, and that's what you need! 

FaceTiming with his brothers

Be proud to be proud

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Going for a walk with big brothers

I recently realized that by not posting when things are going well, I am basically saying that Thomas's story isn't worth telling unless he is hospitalized or struggling through a complication of his diagnosis. This simply can't be allowed to continue because just look at this face....

So in order to rectify this travesty that I have committed, I will attempt to catch you up on this little boy. He is still working hard on his rolling and is getting closer. He can sit unassisted, which makes him so happy to be able to watch his brothers play and just to see all that goes on around him....like his brothers playing. His sitting has helped him use a high chair now when he eats, which he is also a big fan of. Eating has been slow going, he has trouble with chewing and sometimes gags and then loses all the food that he has eaten, so sometimes it feels like two steps forward and one step back, but we keep working on it and any progress is good progress. Luckily he nurses well still and is able to get good nutrition from that.  He is the most laid back and agreeable baby I have ever been around. He loves to be held and is quite the snuggler. He absolutely adores John, his oldest brother, and he tolerates David, the middle brother. He laughs from a deep down belly place when John plays with him and he loves peek-a-boo. He does not handle the heat well, mostly due to his bladder medication, and he turns bright red, but he is always a trooper about it.
I can't believe he is almost 1! I can't believe that it has been over a year that I have been writing about this sweet baby. Even before we met him, he impacted our lives deeper than we knew he could.  I am so so proud of my littlest boy and I know that he is making great progress and he has come remarkably far from where he started, but I have those moments still. Those moments of searching a stranger's face when they ask how old my baby is and I answer...they are wondering why he's not rolling...he's not talking....he's not eating....hes' not interacting more. I immediately feel the need to stand up for him and explain he has spina bifida. He couldn't breath for the first 6 months of his life. You should see all that he has been through. Then I catch myself. Why do I need to qualify his achievements? As he gets older, what kind of precedent does that set for him if I am constantly saying, well he has spina bifida, give him a break. I need to learn to stop comparing and to stop putting any thought towards what others may think, if I am proud of Thomas, then I need to be proud of Thomas, end of story. As I have reminded myself of this over the past few weeks, I have come to see what peace it has brought. When I talk to people about their kids or even just their life, I find myself not asking questions that lead to comparing or assuming. Instead of "oh he must be crawling everywhere now' or 'is he walking', I ask 'what do you enjoy most about this age'.  I have found that it disarms people and they talk a lot more about real moments rather than saying 'well, he's not walking yet, but he is so close' or 'he probably isn't walking because...' and it leads to a real conversation rather than a contest to see who is the better parent or who is happier. This has made me realize that all of us try to qualify achievements or make excuses for something that we fear may not be seen as good enough, not just special needs parents, and it can be exhausting. By helping people erase the need to compete by choosing how we interact with them, whether consciously or not, they open up more and real connection happens. When real connection happens, we feel much less lonely. Sometimes parenting, and life, can feel lonely and exhausting and something as simple as a quick connection can turn a whole day around. Try it for a day, be aware of how you interact, even if it's not about parenting. Ask a real question that you are interested in and lend a real ear to listen, without interjecting a story of your own or comparing their experience to yours. Hopefully you will like what happens as much as I have and if you do then you have this little superhero to thank!

Those highs

Thomas is really blossoming. To an outsider it would be hard to notice, but his changes and development are so drastic and monumental to us that I can't help but share them. 

He babbles and sings back to us, he laughs at moments when we are laughing. His interaction and desire to insert himself in conversations is something I wasn't sure he would ever have. He is really showing his determination, also. He wants to move!! He is 9 months old (I had to read that twice just to believe it!!) and he wants to get around. We weren't sure what kind of real mobility he would have, but he is beginning to roll. I know that at nine months rolling shouldn't be such a celebration, but in our house it is!! He is so determined to do it, but you can see how hard it is for him, which makes it more of a tribute to his perseverance. It is wonderful to see these traits like determination, perseverance and stubbornness play a role in his daily life OUTSIDE of the hospital. We knew he had these traits all along, but he was only able to show us in his battle for breathing, or determination (also pronounced stubbornness) to nurse when no doctor thought he could. Now to see those same characteristics propelling him towards new goals, well,  it's one of those incredible highs you always know will accompany some of the lows of spina bifida and it brings me to tears just getting a glimpse of what this little man of ours is going to accomplish!! 

Thomas visits Cincinnati

We had our scheduled Spina Bifida clinic today. It was terrific to go to the hospital for a planned appointment AND have it go unexpectedly well! It definitely seemed more like a visit than the hospital trips we are used to having.

We started the day with a renal ultrasound to image his bladder and kidneys. When we had this imaging done in January, there was some swelling in his left kidney that was worrisome to his urologist. He was concerned Thomas may be having some reflux from his bladder up into his kidneys, which could be causing kidney damage (this is VERY BAD!). Also, any UTI or bacteria in his urine, would be much more dangerous if he had relux since we would not want any infection presenting in his kidneys. However, the ultrasound showed not only had his kidney stopped swelling, it had actually gone back to normal size and shape. This was wonderful news to start our appointment day.

Next up was a VCUG (voiding cystourethrogram). This test is used to show if he is having any of the 5 stages of reflux from his bladder back up the ureters into his kidney. While stage 5 is the worst, we really would want to have no reflux. They insert a catheter to drain his bladder, then use that same catheter to fill it back up with a dye that they can see on the x-ray. While filling his bladder we watch in real time on the screen to see where the fluid goes. I was butterfly-in-the-stomach nervous for this one. Since we knew his kidney had demonstrated some swelling in previous months, I figured that he was going to have some mild reflux and we would have to start some daily prophylactic antibiotic meds. While, of course, we would do this if it was needed to save his kidneys, daily antibiotic use is not really on the list of things I would like to have my child doing. Watching his little bladder fill up on the screen and desperately not wanting to see the dark dye veer off of the main body of the bladder like octopus tentacles, I held my breath. The very nice Radiologist Assistant was making small talk about how good Thomas was being, but I didn't pay much attention and mostly tuned him out. I already know how awesome my kid is, we don't have to discuss it right now...talk to me about if I am seeing this correctly!! Finally his bladder was full and we just waited, nothing happened, he didn't pee out the dye, but he also didn't reflux it at all!!! YAYYYY!! Kidneys are safe for now and we don't have to change anything we are doing!! Another great appointment!

Thomas waiting patiently for his VCUG to start

Then we headed across the street to our main clinic appointments. The Physical Medicine doctors were first and if you read the post from last time (post is "OUR LITTLE SNOWFLAKE") you might remember that it was a tough appointment. We still weren't sure if he could see very well and his movement had decreased dramatically. I left that appointment feeling very defeated and worried that his challenges would be quite difficult. This time, though, they were basically jumping up and down with how well he was doing. He was kicking both legs (moving at the hips AND knees) and even some ankle movement in the right leg.  They said phrases like, "WHEN he starts pulling to stand" or "WHEN his mobility increases" basically music to my ears! They literally could not believe it! Turns out once you can breath, everything else is a little easier!

Next we met with the Urology Nurse Practitioner and she just confirmed all we had done in the morning at the main hospital was good. We don't need to increase the ditropan or cathing and it is safe to let him sleep at night and not have to wake him up to cath in the middle of the night (this was up there for the best news of the day as far as I am concerned - mama needs her sleep!!!).  She also let us know the results of the formal urodynamics that we had done last week. When we had this test done in January his bladder was only holding 15 mL, this time, it held 120mL and leaked a bit at 70mL. This is much more age and weight appropriate and tells us the ditropan is doing it's job. Then the Developmental Pediatrician came in and was also blown away by how different Thomas is since surgery. Last time, he was concerned about the lack of weight gain and labored breathing. Well, Thomas has picked back up on the weight gain and is almost back on the curve of what they deem to be "normal" so he had NO CONCERNS!!! Normally we leave appointments with new things we have to add to Thomas's repertoire to adjust or support his spina bifida diagnosis, but today we left with instructions to increase tummy time and put toys out of reach so he can start to move around more.....that's just normal baby stuff that all parents hear! It was wonderful to get 'typical' instructions for a change! And on top of it all, Thomas was the belle of the ball. He smiled and coo'ed at every doctor that came in. They tried to upset him so they could see how much he moved when he was really mad, but he would not get upset, it was really quite entertaining. He would just look at them and giggle when they would poke him or pinch him. He just was the most content guy and everyone that came in contact with him got a smile today. He was the favorite patient of the day (doctors words, not mine) like he is everyday (my words)!

Thomas loving the attention and everyone oohing and aahing over how well he is doing

 We were home in record time from a clinic day! Next appointment is Thursday and it is back to the OR to be scoped by ENT again to see how his airway is still healing.

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).

Chugging along

Here are few pictures of what life has been like for little Thomas in the ICU so far.

My sweet little baby in such a big boy bed. David would be so jealous if he knew Thomas was out of a crib before him!

He is a whopping 15+ pounds!

In true Thomas fashion, he loves to be buried in blankets and all warm and cozy. He also loves to hold his Wub-a-nub doggie in his hand.

Thomas getting his occupational therapy work for the day. The OT manipulates his joints and makes sure his range of motion is still adequate, while a nurse holds the ventilator tube to prevent it from shifting or coming out.

A panoramic picture of our room.

Thomas getting his mouth cleaned, he loves this and smacks his lips when they are done.

There are so many wonderful organizations that donate and help support families in the hospital. Here is a letter we received with a gift card to the hospital, that I used for dinner, and a gas card. It was from Free Throws for Kids. These gestures seem so little, I am sure, to the people who participate, but every little bit helps and these kinds of things always make me smile and give me such a comforting feeling that people are genuinely good and caring.

Thomas getting his breathing tube re-taped so it doesn't shift, they have to do this once every few days since the tape wears down and weakens. He doesn't like this and always needs more medicine during the process.

Thomas update

So yesterday was the first day post surgery and it was actually pretty hectic. It started with a chest x-ray, which they will do almost every day to check the placement of the endotracheal tube (breathing tube). Then the PICC people came by to see if his veins looked any better so they could give the PICC another shot. She liked what she saw, so she put us on the schedule for the day. Next nephrology (kidney doctors) came by since his blood pressure had been high. They agreed that the blood pressure is not anything to cause action at this time, so we will take that as a win. Next through our revolving door was a Physical and Occupational therapist. Since he will be basically lying still for 2+ weeks they come and move his limbs and neck and make sure his muscles aren't atrophying. I know the breathing is most important and we had to take action to address his breathing issues, but it breaks my heart that all the hard work he has done with his head control and overall muscle tone, will be wiped out by these two weeks. I know he is up for the task of working to get it back, but it just seems unfair that it may be like starting from the beginning. He is diagnosed with hypotonia, which means his muscle tone is low and he has significant overall weakness to overcome, so anything that works against gaining muscle for him is a steeper hill to climb than for others. However, both the PT and OT were encouraged by his range of motion (thanks to our awesome therapists we already have and his chiropractor!) and will continue to visit throughout our stay to help him.

The OT working with Thomas

ENT (ear, nose, and throat) were our next visitors and we will see them a lot, they are the main department that are in charge of Thomas. We learned that they slotted us for March 4 to go back in the OR and take the tube out to scope him and see how he is healing. That seems so far away and, even then, it is likely that he will still come back with the tube in. I know in the big picture this hospital stay is not that long, but right now it seems so overwhelmingly long that I can't picture the end.
After ENT left, the nutritionist came by and said that we are going to up his feed to 40oz a day so he can retain and possibly gain weight...40 oz a day is a ton of milk and I don't make that much milk right now, so while pumping, not sleeping, and stressed, I have to figure out a way to increase my milk supply (moooooo). After attaching myself to the pump, the PICC people called and said they would be up. They like parents to leave the room because it is a sterile procedure. I went to grab some dinner and came back up and they were already done, they said it was pretty easy. This is great news because a PICC (peripherally inserted central catheter) is much more stable than an IV and will hopefully last our entire stay so he doesn't have to be poked any more.

Thomas's second PICC certificate. Maybe I could make a bumper sticker - "My kid is a PICC kid from CCHMC"

After his PICC procedure, he was pretty agitated and had a fever, they gave him some tylenol which helped drop the fever, but he was still agitated and waking up. As much as I loved seeing his big beautiful blue eyes again, it was bad news because he was aware of the tube and trying to reach for it, but since his arms were tied down it was upsetting him that he couldn't get it and he was thrashing his head from side to side. That much movement is not good for him because we don't want him to dislodge the tube since it is stinting the cricoid (cartilage in his throat) open. So the doctors ordered more meds to sedate him further. They do the meds through his IV's and they take effect instantaneously, which is wonderful because it calms him and takes away his pain, but also awful because you can watch his eyes roll up into his head as they deliver their intended result. This dose of meds lasted about an hour and a half, then he woke up agitated again, but this time he was breathing funny. He was retracting (pulling form his neck and chest to get the air in) and we could hear some congestion, but when they tried to suction him they weren't getting anything. His retractions continued to get worse, so they gave him an albutirol treatment, which is meant to dilate his airway and help him get more air, but it didn't help. The concern at this point is that the leak around his breathing tube (which is an intentional thing) was too big and not all the air they were trying to push into him through the ventilator was making it in, so maybe his lungs were closing up. They ordered another x-ray to check his lungs and the tube placement to see if anything had changed, during this time an ENT resident came up and scoped him to see what might be going on.

The ENT scope, I have talked about before, is always interesting to watch, but particularly this time since Thomas's mouth was wide open. They thread the camera tube through the endotracheal tube (which is in his nostril) and you see the flashlight on the end of it go up his nose and disappear, then you see it reappear as the light shines in the back of his throat and then it slowly disappears again, as if you were throwing a light down a well, the ring of light just gets smaller and smaller until you can't see it. The ENT doctor said there was quite a bit of mucus at the end of the tube, so they went deeper with their suctioning and were able to clean it out, he then scoped again and said everything looked good from their end and the breathing tube was still in good placement. The x-ray also came back fine, a little atelectasis (lung collapse) but that can be normal for post surgery. To help with this, they inflated a small balloon cuff around the breathing tube to close the leak up slightly and make more of the air from the ventilator go where it was supposed to go instead of escape through a leak. The final step was to add a second drug to his IV drip to see if that just calmed him and normalized his breathing. He was on just morphine, but now they also added versed and that seemed to do the trick. As his tolerance to these drugs increase we will have to increase dosages or add other drugs to keep him comfortable. I hate the idea of all of these drugs and what their long term effect could have on him, but seeing him so uncomfortable and upset and not being able to hold him or even do anything was excruciating.
For what was supposed to be a waiting period, it has been pretty eventful and I am hoping that it is just finding our footing in the first few days to keep him comfortable and see what will work for him, then it will be a true just waiting period.

Now we wait some more

Thomas is doing well. He was in some pain when we first got to see him, but they increased his meds and he is sleeping quite comfortably now. He has a breathing tube in through his nose and a feeding tube in through his other nostri.l He has two IV's and they tried to do a PICC line, but his veins are very tiny right now -they think due to dehydration-so they couldn't thread it in. They will try again tomorrow. They want to do this since we are looking at long term medication while we are here. His blood pressure is running high, which is no surprise to me, but just to make sure all looks well they did an echocardiogram to see how his heart looks and make sure there is no thickening of the wall. We will get the results tomorrow. They also have allowed him to start having some breast milk through the NG tube, which is great. We have heard from anyone that comes in the room that this is going to be a long, and hopefully uneventful, two weeks of intubation and of him being heavily medicated. Most likely we won't be able to hold him. After the two weeks they will want to keep him here for another week and half to see how he is healing with the tube out before discharging us and following up weekly. It is going to be a long road, but at the end we expect a full recovery and many deep deep silent breaths!! 

Thomas being skeptical as they are checking that he is who we say he is before wheeling him into the OR. 

Not looking comfy, but resting silently! 

Hurry up to wait

Today is THE day. Surgery day. Stridor day. We are in the pre-op room just hanging out because due to the weather everything is running behind. We needed every minute of the extra hour I planned for when driving down....

Was an exciting and very slow drive, but we made it safe. And now we wait to say good-bye to our lil Wheezie and hopefully hello to easy breather! 

Will update when I can!! 

Scheduled

Thomas's procedure will be Wednesday morning, February 18 at 9:53 am. You read that right, the procedure will start at exactly that time, that both baffles and comforts me with punctuality. As we prepare for the day and the recovery after, I am struck by the stark difference between his other surgeries, which were basically emergency surgeries, and this planned one. The other ones, we didn't have time to pack a bag and think about what he, or we, would need or like to have. Also, we didn't have time to question the process or to worry, just time to act swiftly. Thinking about this particular surgery and how only 10 kids have had this done at CCHMC, I am thankful for those brave families that opt to be the first when it comes to new surgeries. To help find new paths and discover new methods, it can't be an easy decision to give the green light for a doctor to basically experiment on your child. Even though extensive research goes into anything before even thinking of making it a reality on a child, it is still an incredibly brave decision to have your child be the first few and for those families who blaze that trail, I am greatly appreciative. 

Curve ball hitter

It's never dull around here, that's for sure. The hospital informed us that the ICU has no open beds and since that is where Thomas has to go after surgery, due to being intubated, they can't do surgery at this time, it would be unsafe to be in a different unit. Rather than keeping us as an add-on, they are working to schedule us for next week with a solid date and time. This will avoid driving to Cincinnati in the snow and pulling in the parking garage as you get the call that surgery needs to be cancelled...just another curve ball thrown our way, but luckily Thomas just keeps hitting them out of the park. 

Sounds of stridor

 

Here is what Thomas's stridor sounds like.

Ditching the stridor (hopefully)

So today is the day! They have moved the surgery to today. Hopefully last night was his final night as our little wheezie. In true Thomas fashion, he had a spectacular night. He was actually silent and breathing quite well...nothing like a little second guessing to make a surgery day start out right! They are doing an anterior/posterior cricoid split. Basically they are cutting the cartilage ring in his throat (the cricoid) in the front and the back then placing a breathing tube in to splint the ring and let it heal around the tube with a larger diameter to increase the size of his airway. As far as procedures go, it's relatively simple, they don't make any outward incisions, it's all done arthroscopically. The difficult part for this will be the recovery. He will need to remain intubated (with breathing tube in) for probably two weeks. During this time he will be heavily sedated, not really what you wish for your 7 month old. After the intubation is over, he will probably remain in the hospital for another week and a half recovering and being monitored. When it is all said and done, breathing should come much easier to him and his energy can go towards a more fruitful endeavor, like laughing or smiling. It's been a strange roller coaster of emotions to get here. We want the surgery, but don't. We, of course, want him to breath without difficulty, but don't like to wish a surgery on him, especially one with so much anesthesia. When they called yesterday to tell us that they were adding him on for today my heart leapt, both from happiness and trepidation. I haven't been able to separate the two ever since. It is an exciting time and a nerve wracking preparation. There is no experience that I have to compare these swirled up emotions with. To literally be excited and scared and anxious and hopeful and antsy and hesitant, is quite surreal. Unfortunately, there is no guarantee this will work and he may still need further intervention, but it's worth a shot. Will post here as often as I can to update on his progress. 

Appointment Week capped off with a PICU stay

So last week was Thomas's appointment week. He started the week off with his Hypertension clinic to follow up on his chronic high blood pressure from all the hospital stays. This appointment was a good one, they took his blood pressure a few times and listened to his heart and all looked good. He had a normal blood pressure and they aren't worried about it. They think the way they take his blood pressure when we are in the ICU isn't accurate since his size is between the cuffs. I am both glad and frustrated to hear this. I am glad that he doesn't have chronic high blood pressure and we don't have to go on a wild goose chase to figure out what would be causing it, but I am frustrated because sometimes that keeps us in the hospital longer and puts him on meds that are unnecessary. At the end of the day, though, it is good news and we were discharged from nephrology. Then on Tuesday, he was scheduled for a Neurosurgery follow up to see how we are doing since the decompression and to explain the results of the MRI that he had done mid-December, unfortunately our surgeon got called away last minute on emergency surgery so that one had to get rescheduled. Next up, on Wednesday, we had a nurse from the Bureau of Children with Medical Handicaps come to the house to explain the BCMH program to us and help us apply. This is a very helpful program that the state of Ohio offers to help families that have kids with special needs pay bills that their insurance won't cover based on the diagnosis and needs of the kid. When talking to insurance or nursing staff that can potentially give us more help with all that Thomas needs, it is emotionally draining. Most of the time, when we discuss Thomas to people or explain his needs, we are very positive and pro-active and always make sure to hit the high points, but when assistance is going to be based on his diagnoses and his overall health, you have to list out EVERYthing. Don't sugar coat and don't play down, they need to know everything and all the nitty gritty that you need. This takes it's toll. I can feel myself grieving all over again as I list out all of his challenges....it seems never ending when you list them out back to back to back and you can see the person struggling to keep up in writing it all down, or even better they ask you to slow down or make a comment about how they are running out of room on their paper. To be honest, this breaks me and I definitely need a moment to myself after one of these visits. I used to feel bad about how listing out HIS challenges in every detail would break ME....sounds pretty selfish, but I realized that as a parent, his challenges are mine too; just as his successes will be also. Yes, they won't affect me like they will affect him, but they do still affect me, so it's ok that I hurt to list them all out, it's ok for me to take a moment to grieve after being hit in the face with all that we are up against, because it is going to be hard, but we can do hard things. And although the hard moments are really low, probably lower than other parenting moments that we have gone through, I think the great moments will be fantastically great because of the back story that will be behind them. So since I plan on celebrating those fantastically great moments, it's ok for me to grieve in the hard ones too. But, I digress. The BCMH nurse was very helpful and we have applied for the program and hopefully will qualify for some assistance. Then on Thursday we met with the feeding team to see if he was ready for solid foods. This was a long clinic visit, but he did well. They watched him breastfeed and bottle feed and assessed him. They are confident that we can start solid food, but will probably need help along the way with textures and things of that nature, so we will do weekly occupational therapy appointments to help him along this process. This is good news because we need him to gain weight. He has plateaued in his growth and the concern is that he is working too hard to breath and using up all his calories (I think I mentioned this in the last post), so hopefully starting solid foods and staying out of the hospital will help him do that....this leads us to now...in the hospital. When we were at our feeding team visit I dropped off a urine sample to see if it had any growth since he had had a fever a few days before. It came back positive for bacteria growth of a bacteria called klebsiella. So we had to go on antibiotics to fight this UTI. We started the meds on Friday night, then on Saturday he was uncomfortable, he didn't seem himself and his stridor was starting to pick up again. We thought this was due to the UTI and the antibiotics just hadn't kicked in yet, but on Sunday it got worse and he couldn't settle down, so Sunday night I brought him in. The drive to the hospital, on a good day, takes about 45 minutes. He seemed ok when we left the house, just upset and uncomfortable, but not in distress. As we drove he seemed to be getting more upset. By the time we pulled into the Emergency Room he was not in good shape. I am not sure if it was just the timing of working hard all day had come to a head right then, or he wasn't able to breath as well in his car seat, or he was just mad at being put in the car seat after being held all day, but whatever it was, he had lost his color. He wasn't blue, but he was definitely dusky looking. There was a line at the ER, but they heard us coming a mile away and just took us around everyone and straight back to trauma bay. They put some oxygen on him right away and went through the normal routine of getting the IV and breathing treatments and the whole shebang that goes with the trauma bay. His chest X-ray looked good and he responded well to the oxygen. They got us up to the PICU and on the heliox machine. It was about midnight at this point. He seemed comfortable and ready to settle in for the night, but around 1 am his heart rate sky rocketed and hung out in the 210's (normal for him is 140's) and we couldn't get it down. They tried to give him more steroids, but it didn't help. They put him on some acetaminophen to see if it was pain, but that didn't help. This went on all night and you could see how tired he was, finally they gave him some medicine that basically sedated him so he could settle down, this got his heart rate to the 190's, but not as low as they needed it. They were preparing me for a breathing tube to be put into him, which is dangerous for Thomas since his vocal cords are paralyzed, it would be hard to get the breathing tube out without causing damage. They upped the meds and put him on a BiPAP machine to help him breath as a last resort before breathing tube. He looked like a little scuba diver.

 It took him about 30 minutes to respond to the machine (they expected him to respond in about 5 minutes, but he always paves his own path). He finally settled down and his work of breathing relaxed and he was able to sleep with a normal heart rate. He stayed on the machine for about 6 hours, then he was stepped down to the high flow oxygen and now he is on normal oxygen, with his next step down in about two hours to room air. The really cool thing is that they were hesitant to take off the BiPAP, but he seemed hungry (whenever we are admitted I can't feed him for a day or two because they are worried about his breathing), so they let us take off the mask to feed him, thinking we would put it back on, but we gave him a bottle and he responded amazingly. His sats actually went up and he seemed very content, so they didn't put us back on the machine, they just let him step down to the high flow....he just needed to eat. Food solves everything, I am hoping this will also be the case when we start to do the solid foods - food will solve it and avoid a trach!

He's doing much better now and looking more like himself!!