Saturday, September 28, 2013

Friday 9/27/2013

Ava is a cutie pa-tootie today. She seems so much happier. She hasn't vomited or retched since they stopped the lasix and potassium chloride. Speech therapy let her have 5mL from a bottle today of breastmilk mixed with babyfood bananas as a thickener. Ava did really well, and she is allowed to do this 3times a day when she is awake and alert. Of course nursing won't do it unless they have to or are feeling motivated, depending on the person,but its a big step for Ava. They put a second tube down the other nostril into the stomach. So she has a little breastmilk going to the stomach and the rest going down the other tube into the small intestines. The one going to her stomach started at 2mL per hour and is increased by 1 mL every 12 hours to a maximum of 15mL. As the feeds to the stomach are increased and the feeds to the small intestine are decreased. Everything is still on a continuous feed which means she doesn't feel hunger-which isn't really good for practice bottle feedings. She does not associate eating with the comfort of feeling full. After the food has all been transferred to the NG tube into the stomach, then the timing will be condensed so she is only eating every 3 hours, and we will feed her every 3 hours at home.  The NP said that she wanted another swallow study next week to which I pretty much said - "no thank you," so she consulted with therapy to see what they could glean from the last 3 studies.   We are going to finish weaning the morphine soon and possibly start weaning the clonidine this morning. It will take 14 days to wean the clonidine- then we will see where we stand from there.  The ativan hasn't been touched. She is all smiles lately. Shaun and I think that the potassium chloride really bothered her belly. The poor baby is bored sick and needs to come home. There are already 4 other babies on the unit with RSV or respiratory disease so we want OUT of there. I guess RSV season hit early this year-beware. This may prevent the twins or anyone under 14 from visiting babies in the NICU. 

Wednesday, September 25, 2013

Wednesday 9/25/2013

MRI was normal. I wasn't surprised. I wasn't really worried about it. We are going to finish weaning the morphine since it's almost gone anyway, then may start weaning the clonidine this weekend. The clonidine will take at least 14 days to wean. Then we will reassess the feeding methods and whether or not she'll get back on the schedule for a g-tube or go home with Jejunal (small intestine) feedings. 

Tuesday, September 24, 2013

Tuesday 9/24/2013

Today was a better day. Ava was lethargic in early afternoon but by evening her temperature was normal without tylenol or ibuprofen and she was acting more like herself. This, I predicted, because it is exactly what happened last time. More labs were drawn this morning. I think it took them 5 tries to get blood for a CBC and CRP, both of which were fine. I reallllly think that she is allergic to the contrast dye. It is my understanding that the NP was going to come back in on her day off tomorrow and explore Ava's reaction to previous procedures with contrast dye.  That was my plan for today, too. I looked at it a little bit with the nurse, but didn't look at every single test. An allergic reaction would be one in which her reaction would be worse with each exposure. If this is an allergic reaction another exposure could induce anaphylactic shock.

This morning, in rounds, the big concern was with Ava's physical development and lack of muscle tone, especially in her neck and trunk. The concern was that she was doing pretty well before heart surgery and now she seems weaker and more stagnant. She isn't moving as much or grabbing at toys. So, I was sort of blindsided when I came in at noon. The NP told me that she scheduled an MRI tomorrow to make sure her brain and spinal column are normal even after heart surgery. This will be a 2 hour procedure tomorrow morning under heavy sedation controlled by the NP.   This led me to dig into her meds a bit. I have a sneaking suspicion that clonidine might be partly to blame for her change in behavior with respect to her movement. It is a blood pressure med but it is prescribed for a variety of reasons. For Ava it was prescribed to help wean her from the morphine, and it was added to the mix right after heart surgery. One of the side effects of clonidine is muscle relaxation. I believe that this med keeps Ava too relaxed. It may also be a contributing factor to smooth muscle relaxation which could contribute to her vomiting. I stopped by the pharmacy on my way out of the hospital this evening and spoke with a pharmacist about the drug. She was taken a little off guard by my specific questions so she is going to leave some information at Ava's bedspace tomorrow about clonidine. I told her that I didn't want the basic drug book definition, so she'll probably have to do some digging.    It will be nice to have an MRI before discharge to have on file in case any questions should arise later. Pray that it is normal. 

Also in rounds they brieeefly discussed the possibility of us taking her home with the g-tube AND an NJ tube in her nose. They asked the nurse if she felt comfortable with the parents doing this. She said she would as long as we had access to monitoring equipment and oxygen. Yay- Good plug for us, Jaelynn. That's exactly what I wanted. It wasn't discussed too in-depth because the conversation was shifted to her physical development. Cardiology also signed off on Ava today. They will no longer be rounding on her. We will just see them for checkups on an outpatient basis, probably in Pocatello. 

I took Sam with me to the hospital to visit Ava this evening. Ava was content and looking around. That was good for Sam to see. I explained all of her scars and tubes. The playroom didn't have enough volunteers for me to check Sam in to the playroom, so he had to spend the next hour with me, watching Ava's ipad while I held Ava. Ivy screamed for Great-Grandma the whole time Sam and I were gone. William was happy to have the ipad all to himself at home with G.G.

Monday 9/23/2013

An irritating day in the NICU. Friday I coordinated with the NP and radiology a time for the upper GI study, a time where I could be present. The therapist and NP didn't want to do it that day because a primary nurse wasn't working with Ava..but I said I didn't want to delay so that as long as I was there it should be fine. So I dropped the boys off at school and literally ran out to my car, drove to the hospital, and jogged into the hospital to get to the scheduled GI by noon. I got into radiology and they were doing an esophagram. I found out they had done the upper GI earlier that morning. I wasn't called about this change. I was NOT happy, NOT happy. On top of that the therapist I was expecting wasn't even there..it was some substitute that I had never met. No one in the room knew about Ava's bottle feeding, or rather, non-feeding ability. They told me that she aspirated during the upper GI study that afternoon. They had to squirt the contrast dye out of the bottle and into her mouth...because she wouldn't suck on the bottle..duh..she never has, why would she magically start now with this nasty tasting stuff. They asked "how much does she usually take?" " USUALLY?! Nothing! The most a therapist has been able to get her to take was 2mLs under perfect conditions, and that happened only once...with breastmilk-NOT contrast dye.".  Additionally, it really bothers me that all her bottle "practice" is in radiology with people squirting nasty contrast dye down her throat. If that doesn't create a worse oral aversion..I don't know what would.       She did not reflux in the GI study. I don't know why...perhaps if I were there, we could have better mimiced the conditions that cause her to reflux so that we could see how well she handles it under x-ray. I felt that the results from both the GI and the esophagram were pointless and useless. We wanted to know if she aspirates when she pukes..and we still have no idea. 

We came up from the esophagram and Ava was absolutely miserable. I couldn't calm her. She wouldn't take a pacifier. She would try to fall asleep and wake up in pain. It seemed like abdominal pain. We put a hot pack on her belly, finally I consented to an extra dose of morphine. The morphine worked and I went to pick up the boys. 

Today was William's special solo day with child life therapy. I scheduled him his own session without Sam, and at Ava's bedside. Of course I didn't know she would be miserable when we got there, nor did I think they'd be doing a SEPTIC WORK UP and STARTING AN IV when we got there either. Apparently in the 2 hours since I had left she spiked a temperature of 39 degrees Celsius (102.2F). So they ordered several labs, a blood culture, and a urine culture. It took the IV team three tries to get an IV. I called at 1am tonight and everything is negative. Of course we need 48 hours to confirm a negative blood culture and urine culture because that's how long it takes to grow bacteria. I have a theory that I want to look at harder tomorrow. I think she is reacting to the contrast dye from the study. Her demeanor changed so drastically from before the studies to after, that I don't think it can be ignored.       As a side note...I have made it clear AND it is written on the cardex that I wanted to be present for her next straight cath. Today was the THIRD one that I wasn't called or informed about until after the fact. The nurse could have waited the 15 minutes for me to get there. This makes me pretty angry. There are some serious communicaton issues. Because of her abnormal anatomy, I want to observe at least one urine collection (straight cath) so that I can explain to nurses how to do it if/when it needs to be done in Idaho Falls. 

The lasix (diuretic) has been reduced again. Today the potassium chloride was reduced as well. This I was happy about because I think that this med really bothers her stomach/intestines and I think she vomits worse when she gets it.      She was supposed to get 5mL of breastmilk every hour into the stomach with a second tube down the other nostril today..but that order was cancelled when she spiked the temperature. I predict that her temperature will be gone after 24 hours. 

I am very uncomfortable with the prospect of a NIssen surgery or the placement of an G-J tube. A Nissen is where the stomach is wrapped around the esophagus. This procedure is routinely done for babies with severe reflux but it is not ideal for babies like Ava who have poor motility in the fragile esophagus. The G-J tube is a feedings tube that goes directly into the small intestines. It is more complicated to place in surgery and can become dislodged later. We would have to be readmited to the hospital (at primary children's) to have it repaired if it were to become dislodged...and given that Ava has 3 young siblings and 2 dogs, I am not confident that it would stay perfectly placed. If it becomes dislodged it can cause a perforation and massive infection.     At this point in time I am suggesting that they let me take her home with a G-tube and an NJ tube and that I can titrate her feedings with her primary physician at home as she becomes stronger and can handle her severe reflux better. 

As a side note- I really like the nurse on today. She is not a primary nurse for Ava but has worked with her several times. I felt bad that she was on shift when I was so frustrated about so many things. It could have been any other non-primary nurse and the day would have gone the same way. 
 This is Ava right after William startled her awake. She is pale and sick in this photo. 

Sunday, September 22, 2013

saturday 9/21/2013

Long overdue update.
Ava's esophagram, a precursor to G-tube surgery, was moved up a week....as was the surgery. Her esophagram was on Traday at the exact time I had to pick up the boys from school, so I missed it. She also didn't have a primary nurse that day. I only mention that because not so good things happen when her primary nurses aren't working with her. The contrast dye was administered by radiiology by bottle! It should have been done by sending the dye down her tube. She aspirated the dye and they cut the study short.  There are so many problems with this I didn't know where to start. One, she has never had a bottle feed in her life. She has maybeee taken 2mLs by bottle about 2 weeks ago with a therapist and radiology somehow got 5mLs in her. Well NO KIDDING that she aspirated. They had NO BUSINESS giving her a bottle. Two, they cancelled her practice bottle feedings that therapy so painstakingly mapped out after a big swallow study and many sessions of therapy. Cancelled-based on the aspiration in radiology. Because they gave her the bottle and had to cut the study short, the results were sub-par. Four- EVERY SINGLE feeding experience for Ava is supposed to be positive. The moment she is uncomfortable, we quit. Nasty tasting dye forced in does NOT help this oral aversion that has been created already. I found out these details on Wednesday and about 9pm I spoke with the NP and then I spoke with the attending. I really ranted about my concerns. I also ranted the next day to the therapist, the next nurse, and the surgical team who was rounding. Aspiration like this can cause horrible horrible things for Ava-like lung infection, oxygen support, IV access and heavy antibiotics and even intubatn if the lung can't inflate. We've been down this road more than once.      Also That day (Thursday) and that night- Ava did not have a primary nurse who knew her OR one of her primary NPs - OR even an NP that knew her at all. So when I got there I found that they had a bunch of labs ordered and another urine analysis. I pulled the mommy card here and vetoed all of it. You cannot randomly order labs on Ava. They haven't been able to get enough blood for most labs ordered for weeks. They've even had to get blood that would normally be found in a heel stick-from her finger tips instead. ouch!   I did not feel that "being fussy" all day warranted multiple jabs for labs that likely would be for naught anyway. She had 2 other urine analysis done within about 8 days so that seemed pointless too.  Anyway- that was thursday-- actually Thursday night.

Friday I went in with a little bit of fire. She's been gagging and retching even with the food going right into the small intestines. We have not gotten to the bottom of this, but yet had a scheduled G-tube surgery for Tuesday. That did not seem Ok to me. WHy would we go through the trouble of placing a G-tube when she would need to be fed into the small intestines anyway. Within about 2 hours I was able to talk to the NP, a 4 man surgical team, the attending, and the therapist. THAT is impressive for a Friday afternoon!! I told them my concerns. They agreed and cancelled the surgery and ordered an upper GI Study instead. Thankfully the NP hopped right on that and got us scheduled for Monday at a time when I could come...because of course a primary wasn't working that way. Her primary nurses are so important at this point that we were going to reschedule it for a day a primary nurse was working if I couldn't make it. So Monday, they will back her NJ tube up into the stomach, making it an NG and feed her through that. The food will have contrast dye in it. We will watch her reflux (probably vomit unfortunately) and watch the food on X-ray and decide if she aspirates it into the lungs and if she can handle the reflux. It does not seem like a pleasant test. This is the next step- there are multiple roads based on the results of this test.  I feel a little guilty about getting the G-tube surgery cancelled, but it was scheduled without respect for the current situation which is a severe reflux and it must be addressed first. 

The nurse tonight was talking about equipment we'd have at discharge and how important it will be to watch her if she vomits because she could stop breathing and that she might have to be on nearly continuous feeds at home.....and telling us that we wouldn't be leaving the house much except for doctor's appointments. We kind of already knew that..and it was kind of no fun having someone reinforce it. Not bad that she said it, but just kind of sucked to think about more seriously since we are closer to discharge. This sounds so corny because in reality every single day is closer to discharge no matter where it is in the process. It's a nonsense way to feel better about your situation. Everyone seems to be prematurely excited about us coming home in October just because that is my prediction. Really, my prediction is just fantasy and no one should get their hopes up based on my predictions. They really don't mean much as I have learned. No one working with Ava is mentioning any timeframe for discharge. No one will even offer speculation because Ava keeps pulling out surprises...like this puking thing-out of the blue. 

On other fronts: The boys had a rockin' birthday party today. Since Ava had heart surgery 2 days from their birthday last month we postponed their party until Ava was stable and until the boys made friends in their new pre-kindergarten class. We invited 18 kids from their class and 7 kids plus a few siblings came. It was at the park by our apartment which the boys LOVE because it has a merry-go-round. The pavilion was rented so shaun brought tables from Idaho for the food and gifts. It was super hero themed. The boys wanted a hulk/captain America party. It just so happened that the Avengers party-ware was on clearance at zurchers (meant to be)  and I cleaned them out costing me a whopping 18 dollars. We got everything from decorations to plates to favor boxes to table cloths to the scavenger hunt and much more all in one shopping trip-lovely! We had the whole playground to ourselves except for one little boy who pretty much assimilated into our party anyway. The kids painted shields that Shaun had made with cardboard and silver duct tape and I had painted white. Then I made balloon swords to go with them. We abandoned our scavenger hunt game because of the wind. We had LOTS of good food and two cakes-a green one for the hulk (William's) and blue for captain america (Sam's). They had a blast and the parents had a good time too! As usual we will be eating party food for the next week..and eating party chicken for the next month out of the freezer.    As a side note- it is 1:15 in the morning and I just saw William come out of his room and get his new remote control car. I told him he could sleep with it but not play with it or else he'd wake G.G. (great-grandma). William said that his favorite part of the party was the merry-go-round which shocked me because he said this with his coveted new car in hand. Sam said that his favorite thing about this party was "that Alexis and Aurora came." I though this was very cute. During this season,  I think it was important for the boys to see their parents go out of their way for a special party just for them. The boys helped fill the favor boxes, decorate their cakes, and decorate the playground. They were so excited all week that they kept making "lists" of things they needed for the party. They'd call out something and then say "check" and make checkmarks on a piece of paper. 







 

Tuesday, September 17, 2013

Tuesday 9/17/2013

Nothing new for Ava today. She still has retching episodes that her oxygen desaturates with, but nothing is really coming up because the feeds were advanced to the small intestines. They talked about doing a KUB (abdominal ultrasound) today to see if she had pyloric stenosis, but the doctor said that it wasn't likely so that would be a waste of resources. He thinks all the vomiting might just be due to the increased volume.          She seemed a lot happier today. Her nurse had her sitting up in a chair..it's kind of like a carseat trainer to me..I forgot what it's really called. I got to hold her for about 30 minutes before I had to leave to feed Ivy and pick up the boys from school. I just couldn't get back today. I've been so busy doing things that had just been backed up. 

Monday 9/16/2013


Ava is just not herself today. I sat with her about an hour at noon and couldn't calm her. She finally got an extra dose of morphine and then she slept from 1:30 until about 6pm. But unlike last night-she is sleeping well tonight. Early this morning they decided to advance her NG to her small intestines..which is called an NJ. Instead they pulled the NG, and put a new tube down the other nostril. Her breast milk volume is the same but now it bypasses the stomach and goes directly into the small intestine. This way she has nothing to throw up. NJ feeds are also always continuous, so she is fed around the clock. Her multiple episodes of vomiting are looking like severe reflux. They doubled her prilosec dose. I think the plan was to keep the NJ for about a week and then try the NG again. They tell me this won't affect her surgery date for the G-tube, but we might not be able to use the G-tube until the reflux is under control, IF it is indeed reflux.  For severe reflux a Nissen is performed. This is where the stomach is kind of wrapped around the esophagus. I'm told that this is not ideal for TEF (transesophageal fistula) babies like Ava.   Ava is also off oxygen as of today. All of her other meds are being slowly weaned. Her morphine is weaned by 0.1mg about every 3 days. 

The boys had a session with child life today. They worked with the same child life girl that works with Ava. It was pretty cool. I wasn't there, but Sam got a little doll that he was able to draw scars on, put on a real ostomy bag on its stomach, and a real NG tube to go through a hole in its nose so that it was just like Ava...but its name is "Samuel." I think William needs his own session. He needs one on one attention. He is kind of struggling with behavior and focusing issues in school. They have only seen Ava once since being here. They are so ready to go home. They talk about it all the time. They miss their toys, their own beds (they sleep on little cots now), their friends, and their dogs. 


Sunday, September 15, 2013

sunday 9/15/2013

Ava is having a strange few days. She has been throwing up pretty regularly. Shaun and I got serious about it today. I feel like they are kind of complacent on the weekends thinking "we'll figure it out Monday" or "Her primary NP will look into it when she gets back." Throwing up is very scary to Shaun and I because it has indicated serious sickness in the past, and she has aspirated due to throwing up. Shaun said that the NP today didn't know that this wasn't normal for Ava AT ALL. I thought her diaper smelled funny and she was definitely not acting normal. She had little bouts of extreme pain. I was just speculating that it might burn when she pees.  It appears that she throws up like clockwork an hour after sodium chloride and potassium chloride meds that go through the NG. So they got a bunch of labs and urine culture, switched feeds back to over two and a half hours, and decided to mix the nasty meds in with the breast milk. We'll see . I'm hoping we can wean her from the lasix faster so she can get off the potassium chloride and sodium chloride.     She's up to 92mLs per feed which is every 3 hours. It is nearly continuous, which means she doesn't feel hungry..which means she has little motivation for bottle practice. I don't think we're going to make any headway on oral feedings before discharge. The feedings are optional, and most nurses opt out of the bottle feed for one reason or another. I'm not pushing it either, because I can't be there regularly to be consistent.        Shaun and I are very worn down. We are feeling very detached from Ava. I'm sure there's some psychosocial sense to this-but its rough. The older she grows the more apparent the developmental differences are between she and Ivy who we see and interact with every day. My time is so limited at the hospital and it is not always when Ava is awake. 

1am update: Ava has thrown up twice tonight. They tried to get blood twice but couldn't get any. So she got poked for nothing. The doctor cancelled all the labs and the urine culture that the NP ordered. He looked at her and said she looked fine. Ava was wide awake playing at 1am. He said they'd discuss it in rounds Monday. Grrr, it's not like there's something magical that occurs Mondays!


Wednesday, September 11, 2013

tuesday 9/10/2013

Ava passed her swallow test with regular . Yay!. It didn't even have to be thickened. yay! The nurse and therapist kept saying how cute she looked with barium all over her chin, like a baby drinking milk would. So there wasn't evidence of aspiration but she definitely struggled with the organization of muscles and actions her her mouth. She will start training with bottles. She gets to try 10mL twice a day by bottle. It will be a slow process and she will get loads of therapy when we get home. She is staying awake most of the day. She was awake from 4am until 2pm when she took a short nap. She is so bored. Ava is such a good baby though and hardly ever fusses. 

On other fronts: All three kids at home are sick with colds. I kept Sam home from school yesterday and William had behavior problems at school today. Sam's asthma flairs with viruses so he's getting extra inhaler doses of 2 different things. Ivy had a 100.7 fever tonight. It came right down with tylenol, but she's been cranky all day. 


Monday, September 9, 2013

sunday 9/8/2013

Ava is doing well. She is almost done with her course of antibiotics for this UTI. Cardiology cleared her fluid restriction enough that she can have higher volumes of food. now..so she should start growing again. Right now she is only 10 pounds. Currently she is still on the lasix to dehydrate her a little, but she is so dependent on it to urinate that I am not sure how we'll wake up her system to urinate without the drug. Everything she is taking is being weaned- verrrry slowly.    The heart surgery incision looks good as does the IV infiltration "burn" on her left forearm-which will leave an ugly unnecessary scar. Her anatomy is such that we will have to be hyper-vigilant to watch for signs of UTI infection at home.. They said that our pediatrician will know us well and possibly the ER. 
Swallow study is this Tuesday. We will see if Ava can protect her airway when swallowing and the thickness of feeds which will be safest for her to start learning how to eat. 
Esophagram and G-tube surgery are scheduled for the end of the month. Of course there are a million complications that can accompany a surgery, but if all goes well we could go home by the second week in October I think. 
We were told that Ava's cloaca reconstruction will be done at about 1 yr of age.
We're coming along. We can just barely see the light at the end of the tunnel

Thursday, September 5, 2013

wednesday 9/4/2013

Ava is tolerating the nitric oxide wean very well today. She will be completely off it by tomorrow. We may just avoid the heart cath yet. She will get an echo tomorrow. When I came in this afternoon the therapist was working with her. She was all smiles for the therapist. I loved watching it. Then, of course, she was all worn out and slept in my arms for most of the time I was there. The therapist said that she wants to get a swallow evaluation next week when Ava is down to at least 2L of flow on the nasal cannula. I think her oxygen flow will be easily weaned after the nitric is off. She has been breathing really well. 

Wednesday, September 4, 2013

tuesday 9/3/2013

Ava has been pretty sleepy lately. She has slept through my last 5 visits in a row. I spoke with cardiology today. THey are going to attempt to wean the nitric oxide that she is inhaling along with the oxygen. If she can tolerate the wean, great, she may only have needed it for the transition after heart surgery....if not they will bump the nitric back up to a tolerable level. Then she will get another echocardiogram. Then, likely a heart catheterizaton. This is an invasive heart procedure where they place a wire through the femoral artery in the thigh and go all the way up to the heart and measure the pressures inside the different chambers. This will help identify the specifics of the pulmonary hypertension and help the doctors decide exactly which meds she needs, because she cannot go home on the nitric oxide. I am not looking forward to this. I called the night nurse tonight and it seems Ava is sweating quite a bit more after the first step in the wean, which means she is not tolerating it very well. The nurse told me that she may get an echo as soon as tomorrow. 

When she lost her latest IV they switched her IV lasix to oral. By keeping the same dose but changing the route it was essentially weaned. The problem is that Ava is OnLy peeing with the lasix (it's a diuretic). The rest of the day her diaper is dry. They doubled the oral dose today.  I don't understand how she goes back to normal after this. I am told that she will likely go home with lasix. She will then have to get her blood drawn as often as weekly in Idaho Falls to monitor her electrolytes which can really be goofed up by the lasix. 

On other fronts: Boys had their first day of pre-kindergarten today. It is 3 hours a day 4 days a week.,It was absolutely effortless. The boys did awesome. Their behavior before and after school was excellent. I didn't notice any anxiety when dropping them off too. I told them bye and both said bye without even looking up from their paper. They gave their baby carseats to their teacher who is 6months pregnant with twins. She seemed very thankful. We were happy to be able to bless someone when we have been blessed by our friends over and over. 
Also my mom got a part time job at a charter school in Idaho Falls.  I am happy for her. I also will have to get creative again coordinating childcare so I can see Ava. The 3 hours of pre-k in the afternoon also makes my coordination times very "tight" to be able to maximize time with Ava..because it takes 20 minutes to get anywhere in salt lake. So by the time I drop off the boys and drive to the hospital, I have exactly 2 hours before having to get in the car and drive back. If I have to drop Ivy off anywhere, that would only leave me with only 1 hour with Ava. 


Monday, September 2, 2013

monday 9/2/2013

Ava has a UTI (urinary tract infection). She is on zosyn antibiotics. It was through the IV, but she's blown through 3 IVs in 3 days so today they switched it to an oral dose. It is apparent that the ampicillin antibiotic prophylaxis isn't preventing UTIs so they are going to pick a sulfa drug antibiotic when the zosyn course is done and she will take this for the next year or two until her reconstruction is done. She is finally old enough for sulfa drugs. Ava hasn't really grown in the last month. They keep her feeds very restrictive to minimize the fluid in the blood so that heart has less to pump. They have been using a diuretic, lasix, which makes her pee, to keep her a little dehydrated. This helps keep the blood volume down and also helps to draw fluid off the lungs. The problem right now is that Ava seems to be dependent on the lasix to pee at all. She pees after those two doses, but her diaper is dry the rest of the day. I will dig into this issue more tomorrow. She is down to 3L of high flow and is still on the 80% oxygen to dilate the vessels in the lungs. She is also still on the inhaled nitric oxide. The last 4 times I have been in to see her she has been sleeping..HARD. I hope to catch her awake tomorrow to play with her and so she knows I'm there.   Another day nurse added herself as a primary for Ava, which we were very thankful for. It will help bridge the gaps when the other two primary nurses are off schedule or on vacation. We felt this infection would have been caught much sooner if she had a primary nurse who knew her. Her heart incision looks great. That is more than I can say for the sore on her arm resulting from an IV infiltration down in the cardiac ICU. That is where blood and fluid leaks into the surrounding tissue causing damage until you pull out the IV.  I think she will have a big round scar there.

Sunday, September 1, 2013

saturday 8/31/2013

Mother's intuition was correct. Ava spiked a 103 fever last night and looked terrible this morning. No one had called Shaun so he found out when he went in this morning. She got a full work up today including a lumbar puncture to check for meningitis. She has a UTI. They stopped her feeds at 10am this morning because she had been retching. Since it is a UTI we got her restarted on 1/3 feeds when I visited tonight. It will help her sleep better. She has significantly perked up since the antibiotics have been running through. UTIs are going to be a major concern for her for the next 2 years until she can have urology and plastic surgery reconstruct her genital region. The urethra needs to be moved forward about 1.5 centimeters. Shaun had a rough time the last 2 days, especially since I was camping with the kiddos with no cell phone service. There are a lot of little details but I am just too exhausted to stay up any longer.