Three years ago today, at 7:07pm, Sam and I welcomed our son, Andrew, into the world.
There was plenty of excitement when he was born, that’s for sure. It was like a whirlwind. Three years later, and that whirlwind has yet to slow down!
Right from the get go, he’s kept up on our toes with plenty of medical things. His head was misshapen early on and one of the first things he had to get was a helmet.
Then there was laryngomalacia and surgeries to correct it. A laryngeal cleft that needed a surgical fix.
Ankle braces, followed by up to the knee braces, and in a month or so another set of ankle braces.
Not to mention 5 sleep studies, CPAP, and many genetic tests. And let’s not forget Speech Therapy, Occupational Therapy, and Physical Therapy.
Andrew, you kept your mommy and me very busy and, at times, very worried. We wondered if you would ever speak, but you certainly have mastered that! You are always talking now!
And your energy! Wow, if I could bottle come of that up! You are forever on the go. You never seem to stop running. You were born to play soccer (or any sport that lets you run around like crazy!).
When you are in a good mood, your laughter is contagious. You can be so very silly. When you wrestle, you are unstoppable (and often leave dad in tears because of a well placed kick or hit)! When you are in a bad mood, it ain’t pretty. You certainly remind me of my younger self. Of all of my four children, your temper tantrums top them all! The way you throw things may very well lead to a career in baseball or football.
You are unique, my son. I love you, always! You are a very special boy. You are a precious gift from God. I know that you will go on to do amazing things. Mommy and I cannot wait to be there with you and cheer for you along the way.
Happy Third Birthday, Bubby! Get ready to celebrate!!
I have posted this quote before, but it fits today (and hopefully will help). My grandfather once told me, “Worrying is like a rocking chair. It gives you something to do, but it doesn’t get you anywhere!” Despite the truth of that, I find my mind all over the place.
As you are aware, my youngest son recently had a second surgery for his laryngomalacia. He had a follow up visit with the ENT last week and the swelling was still there. The doc said that it should have been gone by now. They did a scope in the office and found that aside of the swelling, everything looked good.
The ENT then sent off a note to the pediatric sleep neurologist saying that he didn’t feel that Andrew’s apnea was something with his throat. He told her that he thought it might be something neurological. She thought that might be the case, too. Andrew actually had a visit with the pediatric neurologist this week. We walked away from that visit with more questions and some concerning possibilities.
He is already in speech because of the original delay. Now, he is dropping syllables in words, or changing them to a different letter. “Mommy” is now “monny.” “Daddy” is now “dah-eee.” The speech therapist had noticed that it seemed as though he was losing muscle tone in his face. The neurologist feels the same way.
It was a very long appointment. At one point, after reviewing the symptoms and giving him an exam, she said, “What am I missing?” She thought a bit more and presented the plan. We are at the point where we need to start ruling stuff out. There were many procedures ordered and we are going to be very busy.
He will have a 24 hour EEG, a brain MRI, generic blood workup, and yet another sleep study. The EEG will help rule out seizures. The brain MRI will help to rule out cerebral palsy. The sleep study will evaluate where his apnea is at and the possibility of another CPAP machine. The generic blood work is to rule out things like Fragile X syndrome and other possible genetic disorders. He will also see a specialist to rule out things like Muscular Dystrophy.
As a father, these things brought my stress levels sky high. Andrew has already been through so much. I don’t want to have to put him through any more, but we need to know what’s going on. Our neurologist applauded Sam and I for being proactive. Our medical backgrounds really made us question a lot, and she said that we are ahead of the game.
Sam keeps me balanced. I expressed my worries to her and she told me that we can’t worry about what we don’t know yet. There are a lot of possibilities, but until we have something to worry about, Sam and I will pray that all will be ok.
It helps me to write this down for a couple reasons. First, seeing it in front of me “gets it out.” Next, it allows me to fill folks in who are asking about what is going on. Finally, it allows me to expand the prayer chain. If you pray, can I ask that you keep this fine young man in yours?
I apologize for not posting a dedicated blog to an update on my son. Many blogger friends have reached out and asked how he is doing after surgery a week or so ago.
We are blessed that he didn’t need to be in surgery very long. They had booked the operating room for 4 hours, due to the “possibility” of other surgeries, but he did not need them. This was good news mostly, but there are now other questions. From my wife’s social media post:
Surgery went amazing. You would never know this kid had anything done. He bounced back fairly fast and is eating and drinking like a champ now. But surgery left a TON of questions and opened up new concerns. Andrew has severe sleep apnea as well as a speech delay, which we have always blamed on the laryngeal cleft and his Laryngomalacia. Both of which are still there, but surgery revealed they are not the cause of the obstruction like we were thinking. We have an appointment at the end of September with neurology to start looking at different things.
Some of the stuff we are witnessing is really leaving us scratching our heads. In speaking to the neurologist, some speech delay or speech regression could be neurological in nature. There is also some concern about muscle tone loss in some areas. We’re working with PT on that.
He’s been a toe-walker for a very long time and that can cause future problems. So this week, he received his braces. Both feet go in them and he needs oversized shoes so the braces fit in them. He wears them off and on for a couple hours and as the days progress, he’ll eventually be wearing them all day. This will help him stop toe walking and with those lower calf muscles.
He continues to have non stop energy and leaves mom and dad exhausted at the end of each day. He has come up with creative ways to climb up to counter tops, turn on and off lights, and destroy anything in his path. He is our little firecracker!
We will continue with his speech therapy and physical therapy and hopefully he’ll keep making progress. We are praying that the neurologist will provide further answers.
Thanks for keeping him in your thoughts and for sending positive messages our way.
It’s Monday and there is finally a bit of normalcy back in our life. It was a crazy weekend for us.
Thursday, Andrew had his surgery. It went better than expected and we were grateful that many of the “possible” surgeries were not needed. This time the recovery went a bit better than the last time. When he woke up from his last surgery he had what they called post op “delirium” and he began pulling the IV out and was just a bear! This time, they gave him something that let him sleep a bit more and he woke up much more calm.
On Friday we were home. He seemed to be doing well. He was eating a lot of soft foods and popsicles. He seemed a bit more like himself, but we knew he wasn’t 100%. On Saturday, we had a scare as he just didn’t want to eat or drink. We even took him out for ice cream in hopes that would work. Naturally, a trip back to the ER and what does he do? Drinks and eats.
Not sure why he felt the need to grab a winter hat for ice cream, but he did.
That night my wife caught a very cool picture. Let me set this up for you. When I put him to bed, I will lay him in his bed and turn out the lights. I will say prayers with him, cover him up, and turn on his sound machine/night light. Then I’ll put on my reading glasses, grab my mini-flashlight and read my book where he can see me. He will eventually close his eye, knowing that dad is right by him, and go to sleep.
While in our bed that night, he grabbed his sunglasses and put them on. He grabbed his Paw Patrol flashlight and one of the books my wife and I plan on reading. He said, “Wook, Mommy! I Daddy!!”
Little by little – he is acting like himself.
We were home just in time to watch the sunset yesterday. Before the rain, the kids saw fire flies lighting up the back yard. So they ran around trying to catch them. Both were successful!
It’s been years since I’ve chased fireflies, but I have vivid memories of doing so. I hope they will never forget doing it.
I wanted to thank each of my readers who said a prayer or sent positive thoughts our way for Andrew’s surgery. All went well and he is home recovering.
We will need to follow up with ENT in about 6 weeks. We also will follow up with sleep/neurology in the weeks ahead.
He was such a trooper. We’re happy he is home. The plan is to take it slow and easy this weekend.
Andrew’s surgery was schedule to happen in late September. Sam woke up this afternoon saying that the ENT office had called and wanted us to call back as soon as we got the message. They had mentioned a while back that they may want to move the surgery up a little.
They hadn’t called back by the time I left for work today. Sam called me as I pulled in to tell me that they indeed had moved it up … a lot. She posted this earlier today:
Got a phone call today from Andrew’s surgeon that he went over recent testing Based on that, plus the increase in choking and aspiration, it was no longer safe to wait for surgery. So Thursday this sweet boy will go in for yet another surgery. This surgery is a big one, with a whole bunch of scary things. But we are going in with faith that this will be the surgery to fix his little throat completely!
We have no idea how long he will need to stay in the hospital. They informed us of the many possibilities that he/we could be facing. Very scary possibilities, indeed. However, we will be praying that all goes well and that he heals up quickly. This weekend will be very stressful.
If you wouldn’t mind sending some positive vibes, good wishes, or prayers our way, I’d appreciate it.
My youngest son, Andrew, has had his share of challenges in his almost two years. After his first sleep study, he was diagnosed with laryngomalacia. It was causing him to have sleep apnea. A surgery was done to correct that problem. While in surgery, a cleft was discovered and the surgeon filled it.
Three months later, he had a second sleep study and his sleep apnea index had gone down, but not quite enough. We opted to try CPAP, which meant a third (CPAP) sleep study. It worked for a while, but because of a lack of proper pediatric CPAP masks, we wound up stopping and attempting to treat it another way. Medications to help open nasal passages and the airway were prescribed and they seemed to work well, as he was sleeping a bit better (despite some louder snore).
Just before the Fourth of July, he had a fourth study and we discovered that his apnea is worse than it was last time. We also found that the laryngomalacia, which he should have grown out of by now, was still an issue.
Andrew had his visit to the ENT today and there was quite a discussion. It seems to the doctor and his colleagues that the main issue is the cleft. They will probably have to do a deeper scope to make sure there isn’t another cleft. The goal is to repair the cleft or clefts. They may remove tonsils and adenoids, too. Either way, it is a much bigger surgery than we anticipated.
He will probably be in the hospital for a few days, perhaps in ICU. We’ll be awaiting a call to schedule surgery Monday. They think it will be sometime in August or September. I found this video on YouTube, which only scared me more.
My wife and I are quite overwhelmed right now. We can only hope and pray that this will take care of Andrew’s issues and the healing will be fast and easy.
I thank you in advance for your good vibes, your positive thoughts, and prayers as we anxiously await a plan of action.
My son, Andrew, has had a hard time sleeping since he was born. We took him to an ENT and they found that he had laryngomalacia. A sleep study was ordered and it showed that the laryngomalacia was leading to sleep apnea (That’s what the photo above is). This led to a minor surgery to try to correct it. I blogged about that here:
A few months after the surgery, Andrew was back in my sleep lab to see if the surgery had indeed corrected the sleep apnea. This time around, our pediatric neurologist wanted to check for seizure activity and muscle movements as well. The study results showed that the apnea got better, but hadn’t gone away completely.
My wife and I knew exactly what that meant – CPAP. We both have run many sleep studies on children and many CPAP titrations as well. They are not always an easy thing. I will be honest, I was not looking forward to running his CPAP study, anticipating that he was going to fight us all night long. However, to our surprise, he actually did quite well and slept most of the night.
Sam went and picked up his CPAP machine today. Before going on, I will tell you that the past week has been very difficult for us (more for her). They terrible twos are kicking in BIG time with Ella. Both kids have been a handful and hard to deal with. That being said, knowing that Sam was going to be the one to be with him for his first night at home with CPAP had me praying that all went well.
Sam said he cried for a little bit, so she put on Elmo. He calmed down and when she told him it was bed time, he laid down and went to sleep! She sent me this picture:
I couldn’t be more proud of my little C-Papper! What a champ! I know that this is going to really help him in the future. Hopefully, he will only need to wear it a few months.
I had to take Andrew to have a Barium Swallow Test this week. It was yet another test tied to the laryngomalacia. Since he had his surgery, it seems like he is having trouble swallowing food and drink. If you’ve never had one of these, I don’t recommend them. I had one done some time ago and the barium is very thick and “chalky.”
Ella got to have a sleepover at Nana’s house the night before, because we had to be up early to be on the road. Andrew woke up in a good mood, and early enough where I was able to give him some milk before the drive. He was not supposed to have any food or drink three hours prior to the test. We were worried about him being hungry, but he slept the entire way down.
We were the only ones in the waiting room. Every time he heard someone at the registration desk, he’d walk over that way to see who was talking. It didn’t take long to get called back, and he was fairly calm.
When we walked into the testing room, I thought for sure he was going to begin to freak out. They had me sit him in a chair, which he was strapped into. They then pulled down the “camera/x-ray” machine along side of him. They made me put one of those x-ray vests on and I stood in front of him.
We were told to bring stuff for him to eat and drink, but they had an applesauce and crackers there for him. I had brought applesauce, fruit loops, and some other things for him. They mixed the barium with applesauce and I gave him a few spoons of that. Then we added fruit loops to it and he ate a bit more. Then they added some barium to his sippy cup and had him drink from it.
And just like that, the test was over. There was a doctor there monitoring things as the test was in progress. He told me that Andrew was not aspirating and all looked good. I was relieved. Since the test was over quicker than I anticipated, we walked to the food court and I bought us cookies!
Now that this test is over, we’ll probably have another sleep study done to see if the procedure helped with his sleep apnea. I’m hoping so!
As we head into the holiday season, I am excited to see what kind of mischief my two little elves will be causing …
Andrew had his surgery today. You may remember his sleep study showed severe sleep apnea. A diagnosis of laryngomalacia was given and today the surgery was to correct that.
Going in we knew that there would be at least one surgery for sure and a list of possible others. The possibles would be assessed after a scope of the airway was done. The doc was unclear as to whether the tonsils and adenoids needed to come out. That was one of the possible “others.”
We had to be up very early to make the trek down to the hospital. I really never understood why they tell you to be there so early. We had a 7:30 arrival for a 9:30 surgery, which was moved to 9:45, then 10, and I think we finally were back in the OR by 10:30.
Sam’s aunt came over and watched Ella for us while we were there. We were very grateful for her coming at the last minute. Some other family issues came up that forced us to change plans.
We had smooth sailing all the way to the hospital. Once we were checked in, the waiting began. There were plenty of people in the waiting room – kids and adults.
Andrew is not a patient kid. He likes to be walking or running or exploring. He is not going to sit still. So, Sam and I took him and walked around the halls a bit while we waited to get to the prep room.
Once in the prep room, he was gowned up and the Child Life folks brought in some toys. They kept him occupied for a short time, but he hated being confined to the room.
They told us that there were some wagons/cars in the hallway and eventually I walked him through the halls.
By this time he was exhausted from the early morning wake up and he fell asleep on Sam.
I was the one who went with him to the OR, so they could put him under. They brought me one of those white “bunny suit” gowns to wear in the OR. They did this for me when Ella had her ear tubes, too. This time, thanks to my 40+ pound weight loss, I could actually zip it up!!
Sam passed him to me so I could take him down. I had hoped that since he was sleeping, they could just put the mask on him and he’d stay asleep. He didn’t. He woke up and I held him while they put him under.
After the scope, the doc came out to say they were just going to do the one surgery because the tonsils and adenoids looked ok. After that surgery, he came back out and asked if he choked on his food or drink. Lately, he had been doing this, so we said yes. He found a small abnormality that he was able to fix while he was still under.
The doc came out afterward to say that all went good and it would be about 30-40 minutes before we could go back to see him. While we waited Sam got a text saying that he was doing well in the recovery room. We continued to wait.
Finally, they let us back. If you have never seen a child waking up from anesthesia, it is not pretty. When Ella woke from her “twilight” she was head butting, fighting and screaming like we have never seen her before. Andrew was similar, but he was mostly squirming and screaming. It was not easy to see him that way. Nothing seemed to calm him down.
They wasted no time getting us up to our room, which was already set for us. The nurses on the floor were a bit surprised that they didn’t keep us down there longer, but we all rolled with it. Andrew eventually fell asleep on Sam and that extra sleep helped him a lot.
Sam noticed that they must have had a difficult time getting an IV. He had two pokes in both hands, and the IV was in his foot. Not that it mattered much – he pulled the IV out when he woke up. We thought they were going to have to put a new one in, but the nurse said if we could get him to drink some fluids, we may not have to do that.
Well, the poor kid hadn’t had anything to eat or drink since 9pm the night before. So when he was handed a sippy cup, he drank from it. When handed a popsicle, he chowed it down. When he was offered Jello, he ate it like it was a gourmet meal! No need for another IV!!
He had three EKG leads on him to monitor his heart. He also had a pulse oximeter on his toe to watch oxygen levels. These basically had him tied to the room. He didn’t want to just sit. He didn’t want the equipment on him either. He promptly starting ripping those things off. We pressed the nurse call button and waited for 30 minutes. Finally we just took him to the hallways to walk.
He squirmed in our arms, so we let him walk on his own, which led to him running through the halls and into rooms. Sam and I got our steps in today. It had to be a sight watching us chase him around!!
We’re glad the surgery is over and now we wait to see if this helps with his sleep. Next step is his echocardiogram next week to see if the apnea has caused any damage to his heart. We pray that all is ok.
Various Ramblings of a Nostalgic Italian 