Watch What You Ask For

We've been in the PICU with Cataleya since Monday. She failed the CPAP and BiPAP trials they did to keep her oxygen saturation consistent. Pretty much- the sleep apnea machines could not provide enough support for her breathing to be sufficient.

Enjoying an oral swab after failing the CPAP trial

We were waiting for the bronchoscopy this morning to tell us what was going on in her airway that prevented her from breathing appropriately. Yesterday, when the Pulmonary Specialist came down to talk to me about the procedure and get consent signed, he said again that her heart makes her vulnerable to virus and infection so that's probably what's going on. ***insert eye roll***

This morning Cataleya's bloodwork came back with high carbon dioxide levels (cO2). Normal is like 35-40. Cat usually sits around 60. Today it was 114. This happens when Cataleya takes shallow breaths to bring in oxygen, but can't muster the force to breathe the carbon dioxide out- so it builds up. Too much CO2 causes the body to become acidotic- which is way bad.

The Dr's needed to control Cataleya's breathing to get her out of dangerous territory. Since she wasn't successful on BiPAP, the only option was to intubate and put her on the ventilator.

2 minutes before being intubated

I didn't have much of a say in this decision. It was clear that she needed this. Still, it was hard to reconcile in my head how Cat could look so good- breathing and o2 sats in her normal range, smiling and blowing raspberries just seconds before they intubated her.

So they placed the breathing tube in as the Pulmonary team came in with their bronchoscope. They were able to get really good pictures of her airway. It was very clear that her airway has several abnormalities and it's very soft and easily collapsable.

7 Doctors- it's never good when your child requires 7 Doctors

The Dr said that that kids with her issues usually have noisy breathing and wheezing, but it's not life threatening and they grow out of it. Since Cat has all her extra issues that place stress on the lungs and make her work harder to breathe, having an airway that obstructs is very dangerous.

The only way to open the airway is with a tracheostomy. Since Cataleya doesn't only have a floppy trachea, she needs her airway opened even further than the trach tube can go. To open the airway past the trachea, she needs to be on a ventilator that will provide positive pressure from inside her airway to keep it open.

The thought is that her airway can grow and adjust to being open and Cat will not have to be on the vent for more than several months, and eventually she can lose the trach after a couple years.

2 hrs after being intubated

She actually does not need oxygen with this plan she is breathing room air now on the ventilator. The reason she needed oxygen before was because her airway was so smushed up that she was getting very little air volume, so the air she got had to be oxygen dense so she could get enough oxygen to her blood. If we give her big enough breaths, she'll have enough oxygen from just room air.

So everyone continued their trach chant, and I got on board the trach train. I finally had the answers I had been arguing for since May.

The emotions that come with this are so unpredictable. I'm sad and scared and relieved and hopeful. Even though I didn't want this to be our only option, I had to be satisfied that we had an option and a clear explanation for everything she's been through. I also had to let go of some feelings of anger with these doctors. They should have figured this out months ago. Had I not acted like a lunatic and screamed and complained and researched- we would still have been waiting for some mystical virus they said she had to pass. The anatomical findings confirm that her breathing troubles were not due to illness. Being angry now does nothing for me. I did point out that we wasted a lot of time when this test could have been done back in May. I believe they got my point, so now I have to move on.

The only obstacle between us an trach town was the Cardiac surgeon. He does not want to do her heart surgery in October with the trach because the trach presents a risk of infection to the heart incision. A post-op infection would be life threatening. Initially there was talk of leaving her intubated until her surgery- which is crazy because that would be 8 weeks! So the Cardiologist wants to have Cat come in a week before her heart surgery and take her trach out and intubate her while the site closes. Then she would have her heart surgery and heal from that while being intubated. Once her chest site healed, they would surgically replace her trach and she could be back to normal. This all seems very stressful and long. I hate that Cat misses outs on months of her life because she's in a hospital bed, sedated, with a tube in her mouth. Pulmonary asked cardiology to just do the heart surgery now and we'll only have to place the trach once, but that was unreasonable because she's not stable enough to survive the heart surgery. Then Pulm balked at traching her just for 8 weeks if the surgery is in October. Finally there was an agreement to move the heart surgery to April and do the trach now.

I want her to have her heart surgery because that will resolve a lot of her issues, but I also like the idea of her being bigger and stronger when we do it. I also know that this trach/vent experience will be quite an adjustment, so I kind of wnat to get it over with. I don't like having her intubated when having the vent on the trach means I can hold her and she can smile.

So now we wait for surgery day- which should be next week. After surgery we'll be in the PICU for at least one week. Then we'll be in the hospital until we have her vent settings perfect, she's off sedation, and we have nursing set up for her in our home. We're preparing ourselves for 3 weeks her and then a brand new life when we get home.

I'm staying at the hospital mostly while Brandon is home and working on moving her nursery downstairs to the playroom. We're going to have to figure out how to set up our house for a baby hooked to a vent and for a nurse to be able to function while we sleep.

In the end- I got what I asked for- An answer and a solution