Bronch #2

Cooper has been recovering from his hernia surgery perfectly! In fact, yesterday morning we had plans to get discharged today. We had trained on using the NG tube, lined up a feeding pump rental in Great Falls, and learned how to do a gravity feed through the tube for the ride home. We also set up appointments for the end of the month to come back for another bronchoscopy with ENT and a swallow study with OT/PT. Everything was done and we were ready.

Then yesterday afternoon, ENT decided they wanted to get a second look at Cooper's throat before he goes home. So they scheduled him for his second bronchoscopy this afternoon. When OT/PT found out we were staying a couple more days, they scheduled his swallow study for Friday. We're pretty bummed about staying longer, but hoping that this means we won't have to come back as soon for the follow ups. Maybe next month instead of this month. His bronchoscopy looked pretty good. The scarring is coming back but they did anticipate that and hopefully as he gets bigger the scar will be less significant. He is still breathing great!

Everyone tells us how great this hospital is, but honestly, I would give anything to be back at Benefis right now. I won't use this blog to vent my frustrations, but being at a large "learning" hospital makes me truly appreciate the consistency and empathy we got at Benefis.

Here's our cutie in recovery from his bronch.

12 Weeks

I'm way behind on bogging. I fully intended to blog on Friday, but it was a pretty busy day. Then I intended to blog yesterday but we spent the entire day working on Jake's homework.

No joke... the ENTIRE day! This week he had his usual weekly conference posts due, but also has the midterm paper due this evening. We hadn't even started on the paper until yesterday. We both researched and typed away all day yesterday and most of today, but it's finally done! He probably wouldn't have signed up for an accelerated 8 week online course if he'd known we were going to be away from home. We're halfway done with political science, and once this course is done he will only need to take public speaking to be done with his associates degree!

So on with the Cooper update. Cooper had his hernia surgery Friday morning. He did so well! They did not want to have to intubate him again, so the plan was to give him an epidural. If he was still squirmy, they would give him a sedative to sleep. If he was still moving, they planned to completely put him under with anesthesia, which would mean he would probably need the breathing tube. The surgeon came to talk to us after and told us he was completely surprised that the epidural worked perfectly and Cooper slept on his own, without needing anything extra! He said the entire surgery couldn't have gone any better! Cooper had Tylenol for the pain for the first day, but yesterday at about noon we decided to not give it to him to see how he does and he has been happy without it.

He does still have a feeding tube. OT/PT has been working with him to make sure he is not asperating while eating. Depending on how long this therapy takes, we may be here for another couple of weeks or they may send him home with a feeding tube. I am so ready for him to just be off all support, but if he needs it and it means we can go home sooner, it is worth it. The feeding tube will be more convenient than the oxygen was as the feeding tube can be capped off and disconnected from the pump, so most of the time he will be easily mobile.

Today Cooper is 12 weeks old. I'll try to update as we find out the plans, but as of now they don't really have a plan. They want to set up a feeding plan and make sure he is gaining on his own, then we will go from there. 

It's so great to have Jake in Seattle with us! He got here on Tuesday and I think he's making up for the two weeks they were apart. He always steals him from me to hold him or feed him. He's a good daddy! 

For the caregivers at Benefis

A couple other Montana babies have been flown here in the past week so Nurse Practitioner B and nurse L who were on the flight crews were able to come by Cooper's room to see him. It was so great to see familiar faces and reminded me that the blog is the only way his caregivers from Benefis get to see his progress and photos.

At about midnight they took off his cannula and he has been doing great breathing on his own! I just love his cute little nose!

Waiting

Cooper was extubated yesterday and it seems like the stridor is gone for now!  He was put on high flow with the intent to try room air today, but he had a pretty rough night with frequent bradycardia and a few desats.

His heart rate has been low all morning,  80-90, but the doctor feels certain this is because of the high doses of the medicine he was given to control the swelling from his ENT operation. Once that medicine wears off he should get back to his baseline heart rate of 140-150.

As of now, we are just waiting for his hernia surgery. He is on the schedule for next Friday, October 4th. The plan is to wean him off respiratory support again, then when he goes to the OR, they may do a spinal anesthesia so he will not have to be intubate again.

He had really chunked up in the last week. Last night he was 4 lbs 12 oz. Compared to other 40 weekers that's 0.03%. He's still a little guy.

The Ronald McDonald House is going to work out great! It's about a 10 minute walk from my room to Cooper's NICU room. It's nice to get outside too. 

Due Date

Today, September 25th, was a significant date from the very first OB appointment. Today was Cooper's due date! Instead, we've had Cooper for over 10 weeks. I barely even remember being pregnant!

Today is also significant in that Cooper had his first major operation. He did well and is coming out of the anesthesia just fine. It's great to have some answers and solutions figured out.

He had a rigid brochoscopy. This allowed the doctors to see past his vocal cords to look for scarring. Luckily, everything past his vocal cords, including his lungs, look great! The doctor did see three things at the vocal cord that concerned him.

1. Major sign of reflux that was causing the vocal cords to be inflamed. We had already started treating Cooper for reflux with a wedge, but now Cooper will be on reflux medicine.

2. One of the vocal cords had a cyst. This was a quick fix as they were able to 'pop' it right then.

3. The vocal cords did have some scarring built up, probably from his intubations. They used a special balloon to open up the airway that was blocked by the scarring. They have also given Cooper a shot that is supposed to help prevent the build up of the scarring.

Here's the before and after of his vocal cords. Much more open so hopefully it will be easier for him to breathe!

The doctor told me that it is very possible that he might need to have this operation done 1 or 2 more times before they get the airway to stay open. He even said we might need to come back as soon as 3-4 weeks for the second one. He also told me the other options if this does not work, but they involve surgery to add more cartilage to make the opening larger, or a tracheostomy, so we are really hoping this works! He did say that a tracheostomy would be the absolute last resort.

This operation caused temporary swelling so Cooper was brought back with a breathing tube in. Seems kind of counter productive since a breathing tube caused the scaring, but the swelling should go down and his airway should be more open than before. Depending on how he does tonight, they may extubate him tomorrow. I'm hoping he goes right back to room air since he did so well off respiratory support the last couple of days.

I got a call from the Ronald McDonald House and get to check in tomorrow! It's a small room with twin beds but has a private bathroom so I'm stoked! 

Hernia/Reflux/Stridor

Things are slowly getting better. Cooper pooped yesterday! He is now being fed every 3 hours, but now we are starting to see signs of reflux again so instead of getting his feeds over 20 minutes, they are going to deliver his feeds over a continuous drip. He will be getting 10mL an hour, so 30 every 3 hours. He was 4 lbs 11 oz last night, but he is still on IV fluids and still looks a little puffy.

Cooper's hernia is still easily reduced and they plan to do the surgery to close the hole so it will not be an issue anymore. Possibly by the end of this week, but the doctors are now concerned about another issue. Cooper has stridor, which is loud, labored breathing. We noticed the stridor a couple of weeks ago, but I didn't know what it was called or even that it was an issue.

They seem concerned about it so ENT came by yesterday to view his throat with a scope through his nose. It was so cool to see! The only abnormality they could see was that his vocal chords are not opening as far as they would expect but that his level of stridor wouldn't be caused by that unless his vocal chords were hardly opening at all. They believe the issue is below the vocal chords. To see that, ENT will do an operation tomorrow morning where they will put Cooper under anesthesia, align his airway, and use a rigid scope through the vocal chords.

They expect to possibly see scarring from having multiple intubations, which may be partially blocking his airway. If so they can use a laser or balloon to open his airway at that time. While I don't want Cooper to have any issues, I am hoping that they find scarring and can fix it right away so we will have an answer and a solution so he can get back to normal.

Since he will be put under, the doctors are considering doing the hernia surgery at the same time. No word on a decision yet, but I'm hoping they just get it all done at once!

On a very happy note, since Cooper has kept his apnea and bradycardia very minimal and doesn't have any episodes of low blood oxygen, they decided to take him off all respiratory support yesterday evening. He had only one bradycardia last night, but kept his blood oxygen up so he is still on room air with no respiratory assistance! Yay!

I am still in a sleeper room in the hospital, but since Cooper is stable and no longer needs the critical care of the NICU, he will probably be moving to a regular room in the medical or surgical unit. Once he is out of the NICU I won't be eligible for a sleeper room anymore. I'm hoping to get a call back from the Ronald McDonald House. They are full so I'm on the waiting list.

Again, thank you for all the prayers! I'll keep updating as things progress.

Rough Times

Yesterday was incredibly hard. Cooper did not seem to be feeling any better. He was still on the ventilator, did not have any bowel movements, and his face got so puffy he didn't even look like my little boy anymore. He looked like he was just miserable.

Thankfully today is going much better. He is still incredibly puffy, but when I spoke to him this morning he cracked his eyes open and moved his eyes toward me. It was so wonderful to see him alert. He was extubated at about 10 this morning and I think he was instantly happier!

Soon after, I was able to hold him and offer him a pacifier. I really needed to hold him. It helped improve my attitude and outlook compared to yesterday. He had his eyes wide open (as open as he could get them with the puffiness) and moved his eyes toward each person who came in the room and spoke. No doubt he is feeling so much better!

We still have quite a road ahead of us. He cannot be fed until he has a BM, but he has had some very good toots so I hope it happens soon! If he gets back to normal and shows that he is up to it, they will do the elective hernia surgery at the end of next week to close the opening and ensure that the hernia does not cause issues again. This is best case scenario. If he does not get back to normal, things will be pushed back later.

Thank you everyone for the prayers. It is so great to have so many people who care about little Cooper!