saturday 8/24/2013

Ava was uncomfortable this afternoon and until 11pm when I left. She slept maybe 20 minutes all afternoon. The nurse gave her extra morphine doses which didn't seem to help. She had three labs drawn (which, incidentally, required 3 heel sticks by the new guy grrr). All her labs were normal. They were wondering if she might be getting an ear infection. I kind of doubt that but they'll check her ears again tomorrow. She has been weaned to 4Liters on the nasal cannula and is still on the 30% oxygen. The added oxygen will be used indefinitely until the pulmonary hypertension no longer a concern. It is being used more a a "drug" rather than something to keep her oxygen levels up-which she is capable of doing on her own. As a drug it is a pulmonary vasodialtor- it helps the vessels in the lungs expand so the blood can easily pick up oxygen. 

friday 8/23/2013

Ava is extubated- YAY! They took her off the ventilator at 4pm this afternoon. She really did well. Her lungs have a lot of mucus that she is going to need to clear by coughing. She transitioned to the high flow nasal cannula well. Her pain is under control, it seems, and so she is getting better rest and not sweating as much. After she was extubated she was crying this soft little hoarse cry. Her little throat must be soo sore, poor thing.   Shaun was with her all morning, and she had a rough morning. She threw up 3 times!  They were thinking that the breathing tube was gagging her.  I have requested that we switch her feeds from continuous back to intervals/bolus feeds so that her NG tube can be open to air between feeds. At least with the CPAP she seemed to get a lot of air in her belly making her uncomfortable, it's not as bad with the high flow. She is on 5L of flow and about 30% of oxygen. The goal is to get her back to room air. She needs lots of healing and recovery so that she can be as optimal as possible going into this next surgery (g-tube placement). 

thursday 8/22/2013

Today was fairly stable for Ava. Her work of breathing increased in a sense.  Her heart rate is high and her respiratory rate was really high. The ventilator is set at 12 breaths per minute, but she is breathing between 60 and 80 breaths per minute. A big problem with this, aside from the energy it takes, is that her breaths are very shallow. She could not be extubated because, at these rates, she wouldn't be able to inflate that damaged lung. She needs to take slow deep breaths. They were thinking that she may have been in pain so they adjusted the morphine and made it more frequent. I think they are tackling the withdrawals better because she is no longer sweating profusely or having periods of crying. The night nurse tonight says that she looks a lot more comfortable. There is a possibility of extubation tomorrow, but I am not counting on it. They increased her feeds again and she is still on continuous feeds so she never feels hunger- which is probably a blessing for now. The room was obnoxious again with 6 babies, 6 nurses, surgical teams and lots of family members. In that tiny little room I overheard the entire conversation about the baby next to us. (So much for HIPPA when you're 2 feet from someone else's doctor). That baby has a couple vacterl issues too, not nearly as severe as Ava though. The mom was having a hard time yesterday. We're kind of in the "newbie" room with new moms and new babies. Our primary nurse assured me that we'd be moved because, like I said yesterday, they wouldn't be able to have her huge crib in the middle of the room...and she shouldn't have to put up with such chaos while we are just sitting here waiting for the next surgery. 

wednesday 8/21/2013

Ava is still intubated with the ventilator. She hates it. She was transferred back the the NICU today, thank goodness. Her orders were tuned upside-down again to the NICU's liking- and mine too for that matter. She saturates very well on just room air, but I guess on her latest echocardiogram, there was evidence of pulmonary hypertension so now cardiology ordered that she be on 30% oxygen even though her saturations are 100% (which is usually an unacceptable number for babies getting oxygen because it can damage the eyes). Ava had a bit of a hard time with the move today. I think there was a lag in medications, because she was extremely sweaty and cried a lot when she got to the NICU. The sweating is probably from withdrawals. The NP said that she may need to be weaned from medications with methadone when we get to the weaning point. After her pain and withdrawals are under control, they will think about extubation. She really is doing well considering what she's been through.  We were put in the most awful spot in the NICU..in a really busy room, in the middle of 2 babies..there are 6 babies in the room. It is just chaos most of the time. I'm hoping we'll be able to move once she can upgrade to her big girl crib. I'm hoping that a big girl crib will be too impractical for the middle of such a busy room and I REALLY want a window spot- if we are going to have to be sitting on our behinds staring at a wall for the next 8 weeks, I'd rather watch the construction across the street. 

Monday 8/19/2013

Ava has two main challenges today. One is that her chest x-ray looks worse than yesterday and she has a ton of mucus in her lungs. The other is that she is having to put up with symptoms of withdrawal. She had a spontaneous trial on the ventilator, which is  where they turn off the rate to make sure that she will breathe on her own. She will breathe on her own just fine, but she will not take deep enough breaths to keep her right lung inflated. She'll have another spontaneous breathing trial sometime tonight. Even if she's not ready to be extubated, the trials are good for her to use her own breathing muscles and remember how to breathe. Ava was on a steady dose of ativan and morphine in the NICU  and she was stopped pretty much cold turkey down here. she has "as needed" doses available now but she doesn't really get them until she has the signs of withdrawal. This has been a source of contention between me and staff. We hope she'll be extubated tomorrow, but I wouldn't be surprised if she isn't.     Her heart echo looked good today. She has a small leak across the patch and still has some blood flow through the smaller hole in her heart that they couldn't find when they were doing surgery. These leaks aren't causing problems.   Her white blood cell count is up, but her temperature is just fine. She may have a little cold virus. If she spikes a temperature, then they'll suspect other bacterial infection. I'm not going to update every tiny little medical thing now because I don't want to explain all the medical jargon. So, this is all the big stuff.

I finally registered the boys for preschool. I'm extremely irritated that I have to pay so much more than other people for public preschool just because I live in non-title one boundary lines. But the elementary school on this street doesn't even offer pre-kindergarten any more because everyone up here sends their kids to private preschools or ones with extended daycare. So, I have to pay so much to go to a rich-kid preschool that doesn't exist. If I lived pretty much anywhere else in the city, we'd probably pay about 50 bucks a month, but now I'm stuck with 200 a month to go to the exact same low income school. They gave me a discount too, it should have been 450 a month. The boys are desperate to interact with some other kids though, and they need some stability and predictability, so I think it will be worth it. 

sunday 8/18/2013

9:00am Ava had a good night. Her chest x-ray this morning looked good. The ventilator is effectively inflating the right lung. They think they will try to extubate tomorrow. They will probably pull the pacer wires, IV that is in the chest, and the 2 chest tubes today. Her surgery antibiotic is finished and she has been restarted on amoxacillin which is preventative for urinary tract infections. Her feeds are increased again. She is up to 9mls per hour or so and will increase every 4 hours by a tiny amount today. 

(If you haven't noticed, I update each days post throughout the day, rather than adding a bunch of little individual posts about events occuring in the same day. So if you check our blog frequently during the day refer to the same days' post. If you like, you could even check the previous days' because I often post things late at night)

saturday 8/17/2013

8:00am Dr called this morning. They had to re-intubate Ava, which is kind of a disappointment. She wasn't breathing well enough on the CPAP. Her right lung is collapsed and the Dr. said that she probably is just weak from surgery and from being a NICU baby and isn't able to inflate that lobe on her own. He hopes that she will just be intubated for another day. 

  He also mentioned that she has rib anomalies and vertebral anomalies which I am a little frustrated that no one has mentioned to me until now. He said he'll show us on the x-ray. These anomalies are common in VACTERL babies and I don't know the implications of them yet.

3:00 pm: spoke with Dr. Buonaito (pronounced Bon-a-Uto, phonetically written here for my own benefit). Ava has been given some mucomist through the breathing tube to try and help break up some of the mucus in her lungs. She'll get another chest x-ray in the morning to see if the rigt lung looks better. Her feeds have been started. Breastmilk is given continuously through her NG tube, starting at 5mls an hour and going up by 2mls every 4 hours to a maximum of 19mls per hour. That will probably help her feel better. It looks like they want to keep the lines and drains in today because of her limitted IV access, in case she needs blood or something. I learned that the drains (chest tubes) are pulled after the pacer wires and atrial IV line because sometimes those can bleed a little, and the chest tube drains away that blood. He showed me the xrays of her ribs and spine. It looks like her ribs on the right are just a little close together, but not problematic. Her vertebre look like they developed fine but the spine as a whole is a little curved, so she potentially has a mild scoliosis. We'll go to specialists for this down the road, after we are done with all the life threatening issues. 

8:00pm: nurse "slammed" some meds down her NG (this is my take on it), including oral potassium. She almost immediately puked it up. I've been pretty angry since then. Why the HECK would you order oral meds all at once for a pt who essentially has an empty stomach, who has a history of puking up her multivitamins, who only has an NG NOT an NJ, and who has a strong history of aspirating. Even moreso, why the HECK would you give the meds so dang fast. IF we've determined that her little belly can only handle a fraction of a feed why do they think it can handle all that extra volume at once (anatomically- she also has a small stomach) It should have been diluted and given over a long length of time in the first place, ESPECIALLY for the first administratn. If this gives her aspiration pneumonia, I will be so angry. The doctor didn't cancel the oral med, but instead cut back on her breastmilk to 3cc per hour. After she puked, the nurse gave her a sponge bath and changed out her linens. It was obviously very painful for Ava. The look on her face was heartbreaking, as was the silent intubated cry. I don't know about you, but I pre-medicate ADULTS before rolling them around for a bed bath after surgery. I would expect the same for my baby with big fat chest tubes! I'm not a happy camper tonight, and can't wait to get back to the NICU where routines were predictable, breastmilk is preserved, and where the nurses are more invested in my baby.