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

Wanna Cry Like A Baby?

Miss Cataleya is back in the hospital. High fever, trouble breathing, abdominal pain, and constipation have had us here since Sunday. She's feeling better, but we're not quite sure what's going on. She had an intussusception where one part of her intestine got slipped inside another part. It resolved on it's own, but was very painful in the moment. It doesn't explain her need for oxygen after being off for a week or the fever. She seems to be feeling better now although they haven't actually done anything to help her.

Cat did 2 hours off oxygen today

 

I have been all over these doctors to investigate further and get a solid answer about her lungs. So far they have been happy just explaining her need for oxygen with, "She has so many health issues, so she susceptible to respiratory illness.". It's not good enough anymore. What respiratory illness does she have? This has nothing to do with her heart. She was home 3 months with no need for oxygen before all this and her heart was just as sick then. We'll get answers eventually because I'll continue to push.

I think the answers and testing I want can be done outpatient, so hopefully we can go home tomorrow.

We got a $16,000 bill from the hospital in the mail. I was so thankful to just be able to forward that baby right on to Medicaid. I don't know how families with sick kids get by with just private insurance. Our state is pretty good at getting kids set up on Medicaid waivers and similar programs but other states provide very little assistance to babies like Cataleya.

I'm on some adoption facebook pages and an online forum of adoptive parents from the agency who matched us with Cataleya. Today they posted 2 new television shows about adoption. I watched them both today while Cat napped in the hospital and I cried like a baby all the way through. I hate the money machine side of adoption, but my heart beats for the people side of adoption. You should totally watch them and give in to your best ugly cry too:

I'm having their baby

The Baby Wait

They both feature the agency of disappointment, so I did some boo-ing and hissing. I'm interested at how my terrible experience lines up with so many of the other reviews and ratings I see online, but clashes with people's first impression of the organization. Maybe it's because they seem to market themselves in every television show concerning adoption? Treating families like garbage, but getting on MTV is clearly a strategy that's working for them.

Aside from that, I thought these shows did a good job portraying the intensity of emotions in adoption. I liked that they respected the love and bond Mothers who choose adoption do have to their babies. Children who are adopted weren't unwanted. The open adoptions that the episodes depict made me a little sad about our own closed adoption.

We Got Medicaid!!!

The title is really the sum of my post. I got a letter yesterday saying that Cataleya was approved for Medicaid and we will be receiving her card in the mail. They will reimburse us for covered expenses incurred since March 1st- which is perfect since we've only been home since March 16th.

There is some messy name stuff that I'm sure will be annoying, but I think I can handle it. Cataleya was known in the hospital at birth by "Baby Girl" and her Mother's last name- the MediCAL that covered her medical expenses until she was placed with us was under that name. When we got to California, the hospital changed those records to Cataleya **Mom's last name**. Since we've been in New York, everything official has had Cataleya **Our last name** on it- including her medical records and our private insurance. However, her birth certificate and social security card have the name that the first adoptive family picked for her and their last name. So I don't know if it will be a problem for medicaid to pay for Cataleya's bills with a policy in another name. I honestly am not worried about it because we got medicaid and that is awesome.

I got a letter in the mail from Social Security as well and literally thought I would die and go to Heaven with 2 approval notices in one day- but it was just a letter for a scheduled phone appt on Tuesday. I'm not really sure why they would do a phone appointment with me since they were very clear that I could not apply for SSI for her, but I'm interested to hear anything from them. The letter had no information as to what the call would be about. Mystery...

Our 1st two weeks home have been very turbulent. We've been in emergency twice, the pediatricians office 3 times, the outpatient lab once, Pulmonary, Hematology, 3 nursing visits, 4 sleepless nights, seven days of 103 fever, diarrhea blowouts, irritability (both Mama and Cat), an ear infection, Methadone, oxygen, and teething.

Our pediatrician- who is great- looked me in the eye after I had been up all night, in emergency since 4am, and in her office at 2pm, with a baby that wouldn't stop screaming. She asked me if I was OK and I couldn't stop crying if I had tried. tI was really embarrassing because I wasn't sad or scared- at this point we knew that Cataleya was having withdrawls from all the meds she was on in hospital and putting her on Methadone at home and weaning very slowly would stop most of her symptoms (which it did)- I really needed a nap and a sandwich and the Dr didn't get it. She gave me a really pitiful look and held my hand. She said, "It must be really hard to go through all this. You didn't know how involved her care would be when you took this on."

I nodded. I really didn't know how involved Cataleya's care would be when I said yes to her. In none of my extensive research about Congenital Heart Defects or 22q11 did I read about babies who couldn't be in public places or clot properly with out transfusions. I didn't know I would have to stop my whole life and devote every second to her medical care. And if I was going to sit here and be completely honest with myself and you, I would tell you:

Had I known then what I know now about Cataleya and her health....

.....I would have said yes even faster than I did.

Cataleya has made me a better person for the selflessness she requires. I love her more than I've ever loved anything. She smiles and it makes every aggravation worth it. When I cry, it's not because I wish for less burden, it's because I wish to be more for her. I complain a lot about all the hardships we are going through with her, but I have a very solid understanding that this is how miracles happen. The situation must be difficult for the turn around to be amazing. If everything was great and then it stayed great- this would be a very boring story.

My Heart

6 Months

It's Complicated

Every day that we're in the hospital, the Dr's come to talk about Cataleya in "rounds". It's the only time that I see them together or get a complete picture of what's going on. When they round on her, it always starts like this, "Cataleya, 25 week female, Hypoplastic Right Ventricle and DiGeorge, admitted for difficulty breathing- cultures confirmed Rhinovirus. Course complicated by..."


Every day there are more complications than the day before. Are you ready? Remember, we are here for a COLD- Rhinovirus is the common cold. Since we have been here: Cataleya was intubated after a poor reaction to sedation and was ventilator dependent for a solid 2 weeks. She has spiked fevers as high as 105 degrees that do not respond to Tylenol or Motrin- she has had to be iced down several times. Trach and blood cultures revealed 2 different bacteria- Staph (suspected MRSA) and something that sounds like "meta-sloppy- caca", both are bacteria that are picked up in hospitals and they are responding well to antibiotics.  She has had apnea episodes while trying to wean off the vent, and unexplained drops in her O2 saturation while breathing well. She has a large stress ulcer that was bleeding in her stomach. After 3 weeks and 20 chest Xrays, the Dr found a healing rib fracture.

Fever- 40.2

Edema- her eyes were swollen shut

The absolute scariest thing that has happened is listed in the complications list as, "... a severe upper GI bleed". This happened last week. I was sleeping on the pull out chair in her room when the nurse woke me up at 4 am. She said, "Her stool is black. I'm going to have the Dr come in and take a look.". The night before, her blood work showed her hemoglobin was down a little bit, and they were going to watch it. The Doctor came in and pressed on her stomach. She never looked uncomfortable at all. The Dr asked the nurse to vent her Gtube because her stomach was distended a little bit. As soon as they opened her tube, it poured blood- first old dark blood then red fresh blood. Cataleya ended up having 2 blood transfusions and 2 Fresh Frozen Plasma transfusions to get her blood count back up and help her ability to clot. The GI team did and endoscopy at 1pm (Please! Take your time! My baby's only been bleeding since 4am) and saw a large ulcer in her stomach that was the culprit. They called it a stress ulcer- like middle aged men get when their office job gets to be too much- My baby has jammed so much stress into her 5 months that it gave her an ulcer. After adding 2 new medicines and all the blood product and stopping her feeds for 48hrs, the bleeding stopped and she should be fine. But, Oh My!! All this from a cold?!

This was the day of the GI bleed

 The Second most aggravating thing that happened while we were in the hospital is related to the GI bleed. During the endoscopy, the Dr took out Cataleya's Gtube to let the blood and air that was in her stomach out. He replaced it with a new one. The GI attending, his 2 Residents, the Fellow from the PICU and one of the PICU Residents were in the room when this was happening. Not even one of them checked the size of the new Gtube they placed back in my baby. It ended up being a 12 French- one size smaller than the 14 French she originally had. It probably wouldn't have been a big issue, except we were planning to transition Cataleya to a Mic-Key button. We have missed 2 GI appointments (where they were going to switch the tube) since we've been in the hospital, but I had the Mic-Key in the room if the opportunity presented itself while we were inpatient. Anyway, no one noticed or mentioned the change in Gtube size. When Cataleya was back up to full feeds and we were going home, I asked for GI to come down and put in the Mic Key. That's when they realized their mistake and said her stoma had healed around the smaller tube, so our button wouldn't fit. They could dilate her stoma- where they literally stick a metal stake in her stomach and stretch the hole (unmedicated to boot) or we could order a smaller MicKey. Obviously I'm going to order the smaller button- but here's why I'm irritated: First, Could you make sure you are implanting the proper medical equipment into my child? I'd appreciate it. Next, My co-pay for these freaking buttons is $60 and we 2 of them in case on breaks or falls out. So I bought these 14F and now I'm ordering the 12F- we're $240 in and Cataleya still has the full Gtube! Lastly, We can't get an outpatient appointment for GI until Aug 30th. The whole reason I was asking for the MicKey button to begin with is, since it falls at the exact place on Cataleya's stomach as her chubby little hands, she constantly pulls and plays with it. She has popped open the Medport several times and then it leaks everywhere and the whole house smell like partially digested Neocate. The Gtube also looks terrrible under clothes and it's heavy on her little body. I wanted her to be able to go in just a diaper in the Summer, but having the tube means having to cover it with clothes. Now we'll be getting the button right as summer has ended and clothes are once again necessary.

Awake, but having apnea episodes

Extubated!! On room air flow

Breathing with no help

The most aggravating thing that happened while we were int he hospital is related to the "broken rib". We're still not sure it was a broken rib- which adds to the insanity. Cataleya was admitted into the hospital the first time on Memorial Day. During that 8 day stay, they did 3 chest Xrays to monitor the fluid in her lungs. When we came back in June, They did 2 initial chest Xrays in Emergency, then they did one everyday after we were admitted to monitor the fluid in her lungs and the placement of her breathing tube. Were in the hospital 16 days before any Dr noticed a "bony abnormality" on one of Cataleya's ribs, although it was later confirmed it was present on all 20 Xrays. It looked like a healed rib fracture. The Dr came in and told me that it could be from the chest compressions she needed that first night she was intubated or it could have been from her heart surgery when she was a newborn- they were going to look into it.


I never heard anything about it for the rest of the day, and it wasn't mentioned at rounds the next day. I asked about it later that second day and the Dr said that the placement of the the fracture doesn't seem consistent with the heart surgery, but maybe the chest compressions. He said it wouldn't be surprising if it wasn't a fracture at all since kids with 22q11 can get these types of things and there is not test they can do to figure out if its a healed injury or not.They were going to do some labs, though, to make sure she was absorbing her calcium and if her numbers were off, he would reccomend adding Vitamin D to her regimen.
The following day at rounds (day 3 since it was found), no mentioned it again. I asked if the labs had come back and if they were going to start her on vitamin D. The Dr said they weren't going to start the Vitamin D and not to worry about it- that was at 8am.


 At 9:30am, a Dr I had never seen before came into the room and told me they were going to do a skeletal survey on Cataleya. She explained that they would take several Xrays of every bone in her body to see if there were any other findings like they saw in her chest Xray. She said "Do you have any questions?" I didn't. X-rays- bones- got it. She said, "You do realize that we typically only do this extensive study when we suspect non-accidental injury?". What?! Now I have questions. I told her that I'm still Ok with the survey being done, but I don't understand why just an hour ago no one was concerned about the fracture- that might not even be a fracture- and now they think she's been abused. The Dr. said, "I understand this is upsetting, but this is really going to be helpful to you to have her condition documented." Helpful to me?! Why do I need help? Like help in a child abuse case? I was very collected in front of her, but as soon as she left I broke down.


I was crying next to my sleeping baby for a few reasons, but mostly this: With her adoption not finalized yet, an accusation of abuse would absolutely put Cataleya's placement with us in jeopardy. Further, it would cause our Foster Care license to be suspended and my son would be removed from our home. It's not the same as having biological or adopted children where it would have to be proven that abuse or neglect occured before the child could be removed. It would actually look bad for an agency to let their child remain in a home that is being investigated for a severe injury (ie- broken bone). Add to that the fact that I have made waves over at the Agency of Disappointment, and I couldn't see how this could turn out well. The Dr came back in when she saw I was crying and asked me what was wrong. Really? You're intelligent enough to make it through medical school, but not to figure out what's wrong? She said that they weren't suspecting that  we had abused Cataleya, but maybe the people who had her before us. She realized how stupid she had sounded all morning when I told her that she has only been with me since her release from the hospital. She doesn't go to daycare or stay with babysitters. If someone hurt her, I would be the only suspect. Then she left me to cry because it was serious. She said something about not involving CPS, which doesn't matter because Agency of Disappointment has full access to her medical records and Dr/nurse notes. On a different note- if they thought a child was being abused and didn't report it to CPS- that's not good either.

Waiting to be  inspected for "non accidental injury"

So they did the skeletal survey while the social worker contacted the hospital in California to see if they had any chest Xrays from her stay there. He had me sign the consent as we left for the Xrays. The skeletal survey was 45 minutes of positioning and taping down Cataleya's limbs with masking tape (I guess because masking tape doesn't show in the films- interesting..) She screamed the whole time. They did 4 films of her skull. the thought of her having a skull fracture upsets me so much, and then someone thinking I'm responsible is a nightmare.


About 20 minutes after the Xrays, the Dr came in and happily let me know that they had not found any other injuries or abnormalities in the survey. She said that Cataleya's bones look very transparent and weak on the Xrays. They call it Osteopenia. Endocrinology was being consulted to come up with a plan to build those up.


The next day, the Dr informed me that the bony abnormality was present on the Xrays from California before we even met her. It is unlikely that it was ever a fracture and it rules out non-accidental injury. Congratulations! You're not a child abuser!

Desatting all night

Just wants to go home!

Finally -Discharge Day

We finally got home on June 30th- after 3 solid week in the hospital and 4.5weeks total for this complicated cold. Cataleya is not on oxygen at all and she's feeling very good. Thank you for all the support and encouragement through all this. We hope to be home with no excitement until her heart surgery that has been rescheduled for October.

Still here.

No changes with the Princess which- after the first 2 days we had- is perfectly fine with me.Cataleya's still not breathing on her own. She's on heavy sedatives that will be pulled back slowly as long as she remains stable. Still the same story from the Docs: Its a virus, just wait it out. So that's what we're doing.

Sweet Girl

I nabbed this photo from Shut up about your perfect kid 's Facebook page. It made me laugh. I don't know anything about the book this page is created about, but I've put it on my list because sometimes it's nice to laugh about the craziness our kids put us through.

Progression of a Cold:

Monday at 9pm- oxygen

Tuesday at 5am- BiPAP

Tuesday at 7am- Ventilator

Yesterday, Cataleya's blood gas came back acidotic- she wasn't expelling her carbon dioxide and it was building up in her system. They put her on a BiPAP machine so there could be some assistance taking quality breaths. She did great on that, but was wiggling around so much when they were trying to get a good IV in that they gave her some sedation.

The sedation made her stop breathing. Out of nowhere, The Dr was yelling into the hallway- 5 other doctors came in with gowns and masks. They threw all her bedding on the floor and laid her flat on a hard board. She was completely limp and purple. I stood back against the bathroom door because the knob in my side helped keep me from crying. They intubated her and all of her breathing is done by the vent now. They never even got that damn line in.

She spiked a fever again last night and they wanted to get some bloodwork done. As soon as the nurse tied the tourniquet, all the machine alarms went off and she turned blue. They started CPR and called for "pads" to revive her. She came back without the defibrillator. I went into the hall as teams of Dr's and nurses came to the "Code" aka the dead baby in room 6. That was the 1st time I for real cried in the hospital. The receptionist brought me kleenex and asked me how she could help. All I could say was, "She only had a cold".

Cataleya had 4 more of those episodes overnight. The Doctor said that Cataleya is trying to breath over the vent (a good thing), but when she does, she's not doing so with the vent, but against it (a bad thing). If the ventilator senses too much lung pressure, it will stop delivering breaths and then she stops getting oxygen and then her heart rate drops Any little stimulation is making her clamp down. The answer is to prevent her from breathing over the vent for now. They tried a paralytic med that worked for maybe a minute, then they increased the doses of the sedative, paralytic, and pain med in the continuous drip and added a muscle block. SHE'S STILL MOVING. She's like a little hulk baby or something- nothing can keep her down.

I'm glad she's a fighter. It's good she's strong enough to be causing trouble. But I wish she'd cooperate because I miss holding her. I need to see her awake and smiling again soon. She's going to make me old before my time.

Too Fast To Keep Up

I was in the middle of writing a post about how we were home from the hospital and how I was super irritated with having Cataleya on oxygen and monitoring because its a giant pain and I never know if I'm doing it right.

Home Finally

Trying to have some floor time with her 3 machine friends

Before I could proof that post and get it up- we're back in the hospital. Such is life with a cardiac cutie like Cat. Here are my Facebook updates from today. I seriously don't know how anyone stays friends with me on Facebook when all my status updates are about medical stuff that only I care about:

11hrs ago-

"We just can't stay away!"

8hrs ago-
Since we've been home, Cataleya has needed increasingly more oxygen everyday. Last night I was unable to get her oxygen sat where it needed to be even with our highest O2 setting at home. I brought her in and the chest Xray shows more fluid in/around her lungs than last week-mimicking heart failure. She didn't have a temp when we got here, but after an hour or so she was burning up at 102.9- mimicking an infection. So we're back square 1- something's wrong but it could be anything. They were going to send us to the PICU, but later decided she'd be OK on the regular unit. Thank you for keeping C in your thoughts. We appreciate it.

7hrs ago-

Finally getting some rest in the humidification tent

about an hour ago:
Remember when I said Cataleya was burning up at 102.9? Try 104.2 AFTER 2 rounds of Tylenol and a round of Motrin. The Dr said, "She's tricky.." Round 3 of Tylenol through the tube- let's see...

Now:
Temp down to 100 after a cool bath and tylenol #3. We did another chest Xray and some blood gas to double check everything. I think she's perking up though :)

The Cardiologist said she has to be 6 weeks fever free before surgery, so that's cancelled.

Looks like we're in here for a while...

5 Months