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.