Sleep and the T word

We did, in fact, get home last Thursday after being in the hospital for Cat's tummy troubles. The night before we left, Cat started with a cough, runny nose, and wheezing -because she always gets sick in the hospital- which is exactly why I don't like having her there without a good reason. The entire week we were in the hospital they did 3 ultrasounds (that could have been done outpatient), gave oxygen (which I have at home), and gave tylenol (again, have at home). I left very frustrated and told everyone that we would not be back in the hospital unless they could do something for Cataleya that I could not do at home.

Discharge day- Went home feeling yucky

I continued to lobby for more testing and answers after we were discharged. Our pediatrician rolled her eyes at my zealousness, but agreed to order some tests. She also called our service coordinator and asked for nursing to be set up in our home, and that's getting set up now. 

My feelings on this nursing business are all over the place. I had asked our service coordinator for overnight nursing while we were in the hospital and I was told that  Medicaid would not pay for private duty nursing for Cataleya. Fair enough.. but Cataleya's condition did not change in the 6 days between me asking for it and the pediatrician asking for it. It bothers me that the request from the person who actually cares for Cataleya and knows her day to day needs was brushed to the side, but we fall all over ourselves when the Dr. mentions it. Granted, the Dr. would have needed to recommend it anyway, but that wouldn't have been an issue even when I made the initial request. I love our Dr, but she presented it like giving Cat nursing was a favor to me. We don't need a nurse because I can't take care of my daughter or because I want more breaks. Cataleya needs a nurse because her condition changes from minute to minute and having a caregiver who is sleeping could pose a risk to her safety. Then there's the actual having someone in your house aspect to nursing. I'm actually not as worried about the part, but I'm going to have to get over the feeling that we constantly have a guest I need to tend to. My mind is reeling with ideas of how to set up the nursery to be comfortable for a nurse. I'm nervous the the nurse will hate our house or think I'm rude for not providing something that I've overlooked.

Brandon added Cataleya's Cat Woman to his logo collection of all our kids

When we were in the hospital in June, the Pulmonary team suggested getting a sleep study done for Cat. They made the referral and said the sleep center would be calling us for an appt, but I never heard back. The Dr.  who discharged us two weeks ago called the sleep center before we left the hospital and got us in for last Monday. 

Over that weekend, Cataleya got off oxygen and was doing great. Monday morning I brought her to the sleep center for our initial consult with the Dr. She walked into the room and sat down across the table from me. She asked me how Cat usually breathes and I pointed to my grunting baby and said, "Like this, but without the wheezing. She's been wheezing since the day before they discharged us from the hospital.". We had a 60 second conversation where she tried to tell me that the hospital wouldn't have discharged her breathing like that- she must certainly have gotten worse at home. She told me she was uncomfortable letting me leave with Cataleya and was going to call the ambulance to take us to the hospital. I let her without argument. Honestly, Cataleya looks very sick. If I saw anyone else's kid breathe like she does, I would send them to the hospital in an ambulance as well. Unfortunately, though, the hospital never seems to make her better.

Being wheeled out of the sleep center in a stretcher.
Cataleya does have a flair for the dramatic.

So we got to the emergency department, where they've seen us a thousand times, and they tell me the same thing I had been thinking all along. There's nothing more to do here and we should go home. They did a chest Xray - mostly for sport- and it looked the same as it has since June. I reiterated my irritation that my baby is in such bad shape that a Dr sent her to the emergency room, but no one is even trying to figure our what's wrong. Cardiology points to Pulmonary- Pulmonary points Cardiology- and everyone stands there pointing while the baby turns blue. The Emergency room Dr who we've seen pretty frequently, and I feel like he's been around the block a few times, told me that when specialists stand around blaming other specialists for problems, it often means they have run out of options and there is nothing more they can do. He told me that if I continue to push them, they may very well tell me that there is nothing that can be done to get her better.

The medieval baby torture device used to get Cat's chest Xray

I refuse to accept that there is nothing that can help Cataleya. That's going to make me very difficult to work with, but I think it's what's best for my baby. I've been on a research rampage looking for any other children with her symptoms or any other tests or rare conditions that might not normally be considered. I've got a good list too. I've also got a decent size list of other hospitals and specialists we will be seeing for second opinions if our doctors can't get themselves together. I'd like to think this is not denial, although I'm not so sure.


Anyway, after the sleep Dr spoke to the Emergency Dept. Dr and everyone spoke to the pediatrician, the mood started to change. The sleep Dr called me on Tuesday and asked me to bring Cataleya in right then for her sleep study.

Sleep Study

But she didn't sleep too long...

After the sleep study, we saw the cardiologist. She said that she wants answers to Cataleya's lung situation and was going to personally contact pulmonary to see what they could do. She was very blunt with me and said they will not do Cataleya's surgery in the condition she is in because she would not survive it. She will not survive without the surgery either. Our only option is to get her lungs better.

It seems that all the Dr's phoned each other complaining about how I had been in their offices complaining. Finally a plan formed. We're being admitted into the Pediatric Intensive Care Unit. Once there, our main objective is to set Cataleya up on a apnea machine CPAP.  Since we only do that at night, we will be using the days to get other diagnostic tests done- a Gastric emptying study, swallow study, and bronchoscopy. I am also asking that they consider an MRI to rule out a Vascular ring- which I learned about online.

The Sleep Dr. said that in C's sleep study, there was very little difference in her apneic episodes when she was sleeping vs awake. She would like Cataleya to be on CPAP all the time, but having a giant headset and mask on  all day would inhibit normal activity. She was the first person to say the "T" word out loud

Trach

She would like Cataleya to have a tracheostomy placed so CPAP can run through the trach while Cataleya can be up and interact with the world. Our son had a trach for the 1st year he was placed with us, so I feel like I have a healthy perspective on what that would be like.

It would be a definite change in lifestyle for all of us. The actual placement of the tube is painful. It is stitched in for 7 days initially and she'd have to be bed bound for that time to allow the stoma to heal appropriately. Then the trach would be changed and she could be up and about as long as her CPAP machine came with us. Trachs require suction pose risk of infection and aspiration. They also ensure a consistent open airway - which is something that could greatly benefit Cataleya.

As soon as Dr. Sleep mentioned it, every Dr was rooting for it. Trach! Trach! Trach! Like it was the Messiah of ideas. I had to remind them all that we don't actually know why Cataleya can't breathe well, and there is no confirmed answer as to how a trach would help. I'm not on the trach train yet. They seemed OK with that, but it feels like they are just waiting for me to come around and the decision has already been made.

Tolerating our CPAP mask nicely

So we came into the PICU this afternoon and we plan to be here for the week. I'm happy to at least have some effort being made to help Cataleya. I'm preparing myself for the long haul just in case we get some answers that are hard to swallow. Overall I'm confident that we're headed in the right direction.