Day 23

We are 23 days into this Pediatric Intensive Care Unit (PICU) admission, and 16 days post-op from Cataleya's trach placement. She is doing FABULOUS. Seriously, she's got so much more energy during the day and is sleeping better during the night now that breathing is easy for her. She's on very low ventilator settings and there is talk of eventually only being on the vent at night.

We are all trained and ready to go with our trach and vent stuff- we just have to demonstrate our skills in a 24hr stay next week. I've hired 6 nurses to work in our home 16hrs/day 7days/week. Our house was inspected for safety by the respiratory therapist. So, really, we are ready to go home next week.

Whether or not we go home next week all depends on the cardiac surgeon. The plan was to do her next big scary heart surgery in October. Coming home at the end of next week really doesn't give us much time to be home before coming back for surgery. Cataleya is doing so well with her breathing that she has much better chances of surviving this surgery than she did 16 days ago. The cardiologist thinks that it would be reasonable to have the surgery now, before we go home, instead of coming back next month.

They will not perform surgery during RSV/Flu season, so if we decided not to do the surgery right now or next chance wouldn't be until April. By April, Cataleya could be off the ventilator and a very happy, healthy little girl with a great outlook for breezing through surgery. Or, she could get sick during the winter and be worse off than she was this summer. Then everyone would complain about why we didn't do the surgery now.

It seems that every Doctor I've spoken to has a different opinion about the timing of her surgery. Since this is not really a clear cut case, the Cardiac surgeon will really be making the final decision- Either he'll do it or refuse. He is on vacation until Tuesday, though, so we won't have any info about that until then.

We'll be going home next Friday on the vent or in 3 weeks after heart surgery. This does nothing good for the Type A personality who compulsively plans everything.

Overall, we are doing well. It's hard to be in the hospital this long. We finally can hold her again and she is really happy. Not seeing my husband and son everyday is sad, though, and I'm eager to get home. Even more eager to have Cataleya well- so I'll be OK with moving on with the surgery if the surgeon wants to.

The risk of death in this surgery is not something I like to think about, but it is on my mind more frequently as we get closer. I just have to think that all of this can't be for nothing. Cataleya is life. She oozes energy- you just feel more alive when you're with her.. It's unimaginable that death would come near her. Babies aren't supposed to die and I'd like to live in that world where bad things don't happen to innocent children- even if I only live there naively in my head just so I stay sane.

Oh! On an adoption note- Cataleya was approved for Social Security. We are sending all the approvals to the Adoption Subsidy Office in Albany and then we'll be submitting our papers to Family court for finalization!! I had started to lose hope that the legal side of things would ever get moving. I can't be Cataleya's Mom in any more depth than I am already, but having her be super-official is exciting.

Trach Town

Cataleya did great with her surgery today. Her trach is in and she's been resting comfortably- albeit sedated.

They told us yesterday morning that Cat was on for surgery at 3:15pm. Brandon planned to spend the night so I could go home, then I would come up to the hospital at 1 after our son got on the bus for preschool. As I was leaving for home last night, the doctor had read a note from the surgeon saying she was moved to 5pm.

11:30 am- Surgery got moved up

I went home for the first time since last Monday and slept like a rock from 10-6. I was able to eat breakfast and watch Super Why with my 5yr old- which we both needed. I was very surprised when Brandon called me at 11:30am to tell me they were taking Cataleya to surgery in half hour. I wanted to see her one more time trach-free and kiss her before surgery. There was no way to get the in time, so I had to let Cataleya and her Daddy do this without me. Letting go is hard for me.

All Ready to go down to the O.R.

When I got to the hospital at 1:45, they were already back in her room. Brandon had put her earrings back after they took them out before surgery, and he took appropriate pre- and post- op pictures for the blog.

Post-op- 1:30pm

They left Cat sedated and paralyzed for today with the plan to start lifting the meds tomorrow. She will have to stay relatively still and breathe with the ventilator in order to stay less drugged, but I think she'll do OK.

The whole day feels pretty anticlimactic. She had a breathing tube and was sleeping yesterday- she has a breathing tube and is sleeping today. The only difference is that she doesn't have tape all over her face.

9pm- Snuggled in for the night

I'm getting all my trach training done- which consists of watching videos, reading some paperwork, and filling out a few forms. Next week, I'll actually be doing the stuff on Cat, but we have to wait until her stitches are out.

Cataleya is very swollen and doesn't quite look like herself. They are working on getting her peeing and once she can move that edema will go down.

So we made it to Trach Town. So far, it's not very exciting. I think we'll be fine with that.

One Exception

I'm getting my head in the game and gearing up for the changes that are coming for us with Cataleya.

I'm calling nurses and setting up interviews. We are going to try to get nurses to cover 9:30pm- 9:30am seven days per week, and one 4 hour shift during the day like 1:30-5:30pm. This schedule would allow me to get a full night's sleep and put my son on the school bus, then be able to get him off the bus and make dinner.  It will be just Cataleya and I 9:30-1:30, then the whole family home 5:30-9:30.

I drew a plan for how I want the nursery set up in the playroom that sits off the kitchen. Brandon and my Dad will be putting that together this weekend. This way, we won't have to move any machinery up and downstairs and the nurse can use the kitchen while keeping eyes on Cataleya.

We've talked everything over with our 5 year old about sister's trach and tube that she'll have when she gets home, and the nurses who will come to take care of her.

I'm still at a loss for how we will travel to Dr's appts with her or when I'll be able to get out to go to church or get my hair done. I'm sure those things will come, though.

Really, I'm handling the prospect of our new life pretty well.

With one exception.

Cataleya has to have a cuffed trach. Since the vent will need to blow pressure through her airway to keep it open, it's really important that the air not beable to escape from around the trach or out her mouth/nose. The cuff is a little balloon around the trach that inflates to make sure there is no air leak. Without an airleak, Cataleya won't be able to get air through her vocal chords to make noise.

She won't be able to speak or gurgle, and I won't be able to hear her when she cries.

That breaks my heart into a thousand little pieces, and I don't know how to move on from it.

Sometimes

I recite Cataleya's medical history several times per week to various professionals. It rolls off my tongue as effortlessly as a Starbucks order.

Sometimes, though, I actually hear what I'm saying: obstructed airway, missing ventricle, oxygen requirement, increased risk of sudden death.

When I step back and look at Cataleya through human eyes (like I would look at any other kid) instead of Mommy eyes (like together we can get through anything) I feel like I have an obstructed airway, missing ventricle, oxygen requirement,and increased risk of sudden death. It all looks too big and too scary for a tiny baby. I've had several of those moments in the past 2 weeks where it hits me how sick Cataleya is and it seems overwhelming.

In those moments, I feel completely inadequate. I want to fix her. I want to be some kind of super -Christian -prayer warrior who believes that the Doctors will take another look at Cataleya's tests and find that her heart and airway are perfectly in tact, then we'll go on the 700club and testify about the Lord's goodness. At the very least, I don't want to be so scared.

The truth is, that I'm just a girl who had a thought 6 years ago that it would be really fulfilling to be a Mom. This was not the story I expected. I spend a large portion of my time just holding myself together. I have no idea how to balance to multiple stories in my life right now. Foster Care and Adoption both require 100% and I can't quite keep up with either.

Sometimes I bury myself in facts and clinical stuff to protect my emotions. Sometimes I yell at my husband when we both know he's done nothing wrong.

But..

All of the time, it's worth it.

Paper Towel Medical Report

I was in the room while they intubated and scoped Cataleya. It was very helpful for me to see what they saw on the screen and listen to the Doctors comment to each other as they did the procedure. After it, I felt like I had a really good grasp of what was going on.

The Doctor came in after and we talked in more detail about what everything meant and she drew me this very official graph of Cataleya's airway on a piece of paper towel that she grabbed from over the sink. It's ridiculous, but actually pretty helpful.

Before- what the Dr wrote

With my added notes compliments of "Paint"

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

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.

7 Months