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.