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!