No Procedure

   Happy to report that the surgery scheduled for today was cancelled! Lyla's output continued to decrease, yesterday totaling 40ccs. So things are looking good. Feeds are restarting tomorrow and we are hoping all will go well. We will be able to have a better idea if the Chylothorax has repaired itself once she starts getting milk. If the drainage comes out clear we are good. If it comes out whitish or milky, then there is still a problem.
   Ears, nose, throat Dr. said the throat is swollen and the left vocal cord moved fine, but the right has limited movement. Basically nothing can be done and we are to schedule an appointment in a month to get it checked out again.
   Morphine was changed to .023 the last couple of days and will be changed to oral tonight to continue weening.
   High flow is the same 4L 30%- she's still doing quite a bit of "tugging" when she breathes so they are keeping it the same.
   Ativan .7
   Lipids
   Last couple of days has had a cough and on and off fever 38.5+c
   Milk tomorrow!

 

4 Weeks and Counting

                                      
   Our last 2 hospital stays Lyla was released at 4 weeks... We are going to surpass that record this time around. Her main issues right now are still the chest tube output and her lungs. Dr. Raff has scheduled a surgery (procedure) on Thursday to basically close the tear himself  IF her output does not decrease in the next couple of days. I'm hoping we are getting closer because yesterday her total output was 75ccs where last week she was around 200+ccs. Praying it continues on this path so we can avoid another surgery. Although it will not be even close to as scary as heart surgery.
  As far as her lungs, they are continuing with the same treatments since post extubation. I don't know generally how long it should take, but with Lyla it's always longer then it should be.
   She has not been seen by opthamology and probably won't be because the Dr today told me with the sedatives she is on it's making the Nystagmus (eyes constantly moving) worse. So optha will probably say they cannot make an accurate assessment. Ugh
  Her voice is still gone, although I can hear a little bit more each day. The ears, nose, and throat Dr. is suppose to come and take a look with a little camera that goes down her nose to look at her vocal cords. She will not be sedated for this, but I think they give her some numbing stuff?
   Lyla has had some good days and some rough days, but overall continuing to move in the right direction. Just slowly. I'm convinced that the albuterol she receives with her respiratory treatments is what is keeping her awake for long periods of time (hours). I know she needs it for her lungs and sooner that clears up the better. But it's really frustrating because she gets bugged so much during the day between the nurses, doctors, respiratory, ultrasound, X-ray, physical therapy, and whatever else specialist is called (ears nose throat) that she doesn't get good sleep. Some days she's got these horrible bags under her eyes and she just looks miserable.
   Morphine is down .03ml it's been about 3days at that rate
   High flow at 4L and 30% o2
  Ativan .7
   Lovanox shot 2x a day :(
   Lipids
   No milk still I think this is week 3 :(

Look how long her hair is!

 
 

Day 24

  Yesterday was a much better day for Lyla. She had a lot of sleep and hardly cried. I'm hoping that means she was feeling better and that made me feel better too. She had some bouncy seat time and then I got to hold her. While holding her yesterday I noticed the pillow was wet. At first I thought it was just sweat, but it was a lot and she wasn't that hot. Turns out the line in her shoulder was leaking. Only one of the two lines going in was leaking, but dr. Raff wanted to move it to her other shoulder anyway. The good thing was that they were moving it because of a leak rather than a clot.
                      

   So today they sedated her to move the line and she became too relaxed and they had to intubate. Luckily it was only while they put the line in and then they took it back out. But I think she was/is a little uncomfortable from the process because she seems a little fussy and easily irritable. While sleeping she was grimacing and crying out (still no voice). But she got an extra dose of Ativan and I think that helped. Then after that I noticed some nasal flaring, which usually means she is working harder to breathe. At first the nurse was going to ask about going up on the high flow, but then she realized she was due for a respiratory treatment. There isn't any nasal flaring now, but her breaths are shallow. O2 is hovering around 99 and 100.

She has smaller nose cannulas now. Also, she looks like she has a mustache and a beard, but it's stuff they use to help tape (from being intubated) to stick well. 

 

Day 22

                                           
We have passed 3 weeks since surgery. The road to recovery has been long and slow. We are grateful that Lyla's heart function is good. But her lungs and chest tube have been a bit frustrating. It seems like every time her lungs kind of clear up, they fill back up again. She is on several different respiratory treatments (at least 3) that are helping but not making huge outcomes. They have been able to bring the high flow down to 6L. But I think because of her lungs, her breaths seem to pull in her stomach right at the bottom of her sternum. (As opposed to stomach going up and down) this means she is working harder to breathe. The extra air coming through her mouth from the high flow, is not as gusty, but she is constantly moving her tongue and making bubbles and/or foaming around her mouth. I think that would drive me crazy! The treatments today have been pretty successful in getting some clear breath sounds. Hopefully it stays that way! There was some blood in the secreations after being suctioned. and after Lyla's second treatment while I was there (treatments are every 4hours) Lyla got super upset and blood clots came up from her gtube (tummy). Not sure why yet. Her voice is still gone but you can see her trying to scream. It's heartbreaking.
   She is losing a ton of important things, like proteins and vitamins, from her chest tube drainage. The output has lessened, but it's still too much. It should have stopped two weeks ago. And because of this drainage continuing, she has not gotten any milk in the last 2 weeks. And that just Sucks.
   She also seems really unsettled. She's not as squirmy as she usually is when feeling unsettled/uncomfortable, but she is awake for really long periods of time. Anywhere between 2-6 hours! Something has to be bugging her. It's likely some of it is because of withdrawal, but I really don't know what else...maybe because she's hungry?  I just want her to sleep and not be awake in this hospital for very long. It was very frustrating today. I can see her eyes so sleepy. And she's yawning (which apparently is something they measure as a sign of withdrawal). It was almost like she was trying to keep her eyes open, and not fall asleep. It just makes me so sad. I don't want her to be there anymore, getting bugged by the nurses, alarms dinging, people loud in the hallways, respiratory therapists, X-rays, high flow blowing so fast... Just want things to be normal, and it's just not going to be that way.
   Since Lyla was born she never was able to really focus on an object. Her eyes move constantly. Lately they've been moving faster and more consistently faster. We aren't scheduled to see the opthamologist until May and that is just too far away. So Cheryl mentioned something to the attending and hopefully opthamology can come sometime next week and check her out. On the list of things to worry about with Lyla I suppose this is pretty low, but I'm concerned and I really want to know what's going on. I also worry that her moving her eyes back and forth so fast could be giving her a headache or making her feel sick. Because I think that's how I would feel.

A Big Step Forward!

Monday, February 18, 2013
 Today was a big day for Lyla. Her breathing tube was removed! The nurse (Cheryl) said she was "middle ground" after it was removed. They have her on high flow, at 10L. Throughout the day she did a little better and her "gasses" (blood gas) checked out good as well. So hopefully all will continue through the night and they can turn down the flow tomorrow. There is a lot of air flowing through the nose cannulas, and fast. It was kind of funny when Lyla would breathe out, it was like a gust of wind and would blow my hair around. She also was making lots of bubbles from her mouth because of this.
.

   Heart rate was kind of low today, 85-120. Cheryl seemed to think because she was really relaxed and more comfortable without the breathing tube.
   The pacers wires were also removed.
   Had a hard time peeing today. Her bladder was really full, so Cheryl did a quick catheter to get her pee to come out. She got 68ccs! Her lasix is given Q12, so she is only getting it twice a day. And she is very dependent on that in order to pee.
   Weening her off morphine. Now at .04

Oh yeah, and I got to hold her:)

 
  

Slowly but Surely

Not a whole lot to report. Which is good. They are bringing down the vent help and giving her "sprints" (periods of time off the vent") to measure how well she can handle it on her own. The results have been "marginal" so it may be another day. I really hope it's soon!
   Today she was super upset being on her tummy. I was hoping she would settle, but it took her awhile (and with the help of some drugs). She would lay on her tummy at home for a little bit and be ok, but I think between her chest (incision from surgery), chest tube, gtube, and the tube in her mouth (vent), it probably just is NOT comfortable. Really hoping we can get some better results getting that extra fluid out of her lungs!

  The other day we got her into a bouncy seat. It was a nice change of scenery and I think Lyla really liked it!
 

Happy Valentine's Day!

   Today Lyla had another bronchoscopy and the post chest x-ray showed results! I saw the before and after x-rays and could see the difference with my untrained eyes;) below is a picture of the  'after'.

The 'before' picture was foggier in Lyla's upper right. So they are slowly bringing down her vent settings to work on getting the ventilator removed. I will be so glad for that thing to be out. There is almost always something Lyla is being sedated for (since she's so wiggly) so she is asleep a lot, but when she's awake I can't help but think about how that feels in her mouth and how much it's probably making her unhappy. She actually was awake for awhile today and she was upset. She doesn't make any sound because of the ventilator, but she kept wincing and her shoulders were shrugging like she was crying. And every once in awhile she would make a coughing sound like she was trying to get a really big cry out. Broke me heart to not be able to do anything to help her. Can't hold her, can't hear her, can't comfort her.
   Fluid in chest tube is having a little less output. Unfortunately, I think that is something that might take a while to stop, but hope it's soon so they will start talking about feeding her again.

 

2 Weeks Later

  Because of the kylo (sp?, fats coming back in body the wrong way) Lyla has been taken off her feeds for about 6 weeks. I believe this happened on Saturday. They want to try and lessen the amount of fluid draining into her chest tube from the leak inside by stopping her feeds. This tear/leak should repair on its own, but knowing Lyla, it probably won't. I've become quite the pessimist;) She was also taken off the milrinone sunday? which is great, but she's been having trouble regulating her body temperature. This could be a result of her, once again, having the rhinovirus (confirmed today). Ugh. On top of recovering from heart surgery, she is now sick which kept her in the hospital 4 weeks last time. Hopefully with her fixed heart it won't be as bad....
  Yesterday was a busy day with Lyla getting a slightly larger ventilator tube and then later a bronchoscopy. Since her right lung was not clearing up with the IPV treatments, the Dr. went in with a scope to check it out. It was really interesting to see the inside of her lungs. She had a large audience between respiratory therapist, nurse, 3 Drs, a resident, and the pulmonary nurse all of which got excited when they found some mucus and grunted for the suction to get it all out. Dr. Wayment was able to get a couple chunks that have been sent off to the lab and suction a few other areas that were nice and gooey. Unfortunately the X-ray shows not much of an improvement but drs are hoping that things have been loosened up enough from the bronch and will really start moving out with the IPV treatments and her being proned (on her tummy).
   Today they moved the central line from her left leg to her shoulder. The line in her leg has been difficult the last couple of days to consistently draw blood from and apparently was leaking around the site. Her shoulder was the alternate spot from her neck. They also had to adjust her vent tube because it was too far in. So today has been pretty busy as well.
  Kidneys overall are looking much better so hopefully dialysis has been put off the radar.
  Catheter removed this weekend, peeing and pooping some into diaper.
  In and out of sedation between all the stuff they've been doing to her the last couple of days.
 

Recovery Day 11 - Heart Good, as other organs struggle

The doctors and surgeons are happy with Lyla's transition from the heart lung machine back to normal heart function, but some of her other organs have struggled in the process. Her right lung has struggled to recover, although she is making slow progress. Her lymphatic system has been damaged during her procedure, and has whats called a kyia thorax (sp?), which leaks fat from her food into her body. And her kidneys are having a tough time after a urinary tract infection, she is still being supported by lasix to help her pee.

Along with these, she has a temperature, and has been put on isolation. Things look better for lyla everyday, but she's recovering so slowly, its hard to see the progress on a daily basis.

Recovery Day 8 - First day off the ECMO

Lyla's heart is doing well today and has seemingly adjusted after being on the ECMO machine. She's got a fever of 38.6 C, which may be attributed to withdrawl from morphine and ativan, but as a precaution, her nurses are taking blood samples and cultures from the ventilator to test for bacterial infection. The one infection she does have is her urinary tract and is now under control.

A blood clot was manifest today in her right leg again. Because of this, she's now on heparin, and will have to get shots again once she comes home. During her previous clot, she developed a collateral line in her leg, so this will help while she continues to thin her clot. She's still got a lot happening on a daily basis, but her development is in a positive direction.

Recover Day 7 ECMO Removed

  Well it's been a week. Most AVSD repair recovery times are around a week, but Lyla does things on her own time. So here we are.
  Today was a big day for Lyla. The doctors and surgeon felt comfortable to wean Lyla from the ECMO. Essentially they "bridged" the lines to only pump into Lyla and not back into the machine giving her heart a chance to fill up with blood and pump the blood throughout her body on its own. She did pretty well, so the surgeon decided to remove the cannulas in her neck and completely take her off the ECMO! It left a yucky sore and some scratches:( poor girl. But it's out! So far her heart rate is good and her blood pressure is good. So we are very hopeful!

(Look! No tubes in her neck!)

  Yesterday I reported that the fluid in her chest tube had cleared up. Well.... it's  back to being foggy and now even discolored. To compare it to beverages, it should be a kind of clear red like Gatorade.  The other day it was foggy like tomato juice, and today it is like a foggy pineapple guava juice... She will have to switch to another formula that should break down the fats that are getting pushed in the wrong direction. (Not sure if i have that explanation correct, may come back and change that later) This formula apparently tastes yucky, but lucky for Lyla she won't have to taste it since she is still gtube fed.
  Urine is doing well, but looking a bit bloody from being on the ECMO machine. They're treating her for a unrinary tract infection, and plan to remove the catheter and try for her to pee on her own into a diaper.
  Stopped feeds for all the excitement today, but should get back on tonight.

(Mom & Lyla immediately after ECMO removal)

  Now that she is no longer hooked up to the ECMO, the nurses are able to position her in ways to help the fluid in her lungs drain better. The lower part of her right lung looks better, but the upper part is not improving the same. Dr. V is hopeful now that Lyla is "free" that things will start moving along faster.

   Her breathing tube still in.

Fingers Crossed!

  Even though the Drs originally thought weaning earliest Tuesday, they have decided to try doing it today. I'm happy to know they think she is mostly ready, but very nervous that if she doesn't respond the way she needs to, that she will have to stay on the machine longer. There is concern for her kidneys if she stays on and the catheter will be in longer, as well as her breathing tube... Getting her off this machine would snowball her recovery process in the right direction, so we are praying Lyla's heart will pump the way it needs to pump!

Recovery Day 6- IPV and tract infection

    Fluid draining into chest tube is back to being clear, so that's not on the radar anymore. But the fluid/mucus build up on the right side of her chest is still a concern for the Drs. They've started another treatment to loosen up the old mucus build up called IPV. In non technical terms, they hook up the machine to her breathing tube and it pump these quick puffs of air into her lungs for a couple of minutes. It looks really weird, and I didn't like seeing her chest move like that. But it's helping...
  Yesterday the nurse noticed maybe some blood in her urine. The Dr confirmed today that Lyla has a urinary tract infection. Bleh... Since she's on the ECMO and her blood is real thin, removing the catheter and inserting a new one (what they would normally do with an infection) may cause internal bleeding. Removing the catheter and letting her pee on her own wont work because of the drugs she's on, her bladder will just expand and fill up and not release. So she is getting some antibiotics.
  Weening from the ECMO probably will be Wednesday at the earliest.
  Started getting breastmilk on Saturday. 3ml. Not much at all, but they've been slowly increasing her intake and she's up to 10ml/hr. so glad she's getting something, she's much happier with food in her belly.
  Dr. mentioned something about lylas thyroid levels from one of the labs. Thyroid issues are a concern for Down Syndrome so this could be a life long concern for Lyla that she will be getting medicine for.
  With the constant blood draws, Lyla had to get another blood transfusion today.

Recovery Day 5 - lots of pee

Not too much to report. Lyla is maintaining and peeing a ton! She was at -375cc just from in the morning. Still extra fluid in the right side, but the therapies are helping. Today the fluid that collects in the chest tube bulb looked a little cloudy. The nurse thought it was probably a result from the formula/breastmilk combo she was giving Lyla, but she wants to keep an eye on it for something else. However, tonight the night nurse said it looked clear, so hopefully that has passed.
  She's squirming around more, not huge movements, but figity. Every once in awhile she opens her eyes for a split second. Sometimes after hearing my voice, which is a nice feeling but sometimes makes me sad.
  Night nurses switched the ventilator tube from the right side of her mouth, to the left.
  Echo was done and heart function looks better. We did not talk to the cardiologist regarding this yet.
  Looking less puffy. And her fingers aren't as hard either from being full of fluid.

Recovery Day 4- switching ecmo

For the most part things have been pretty stable since being switched to the ECMO. Yesterday the cardiologist reported that the kidney function looked better, but the heart function was about the same, no worse. Right now we are mostly just waiting for her heart to get a good rest and then talk about weening from the machine. The nurses (she has 2 at all times) are working constantly monitoring Lyla and her meds, making adjustments as necessary. We've heard them talking about her temperature a lot and trying to get that where they want it. Maintaining pain control, blood pressure, constant blood draws for labs, etc.
  Today we got a call giving us a heads up about switching out the ECMO. Several blood clots had formed in the lines (normal) and the risks to keep that machine with the clots outweighed the risks to switch out. Dr. Vlautin said it went well and now it's back to readjusting since switching out was kind of a shock to the body. Dr said she saw the heart pumping ok during the switch and that a was good. Her color is not pretty, but should be back to pink again soon.
  We were told before bypass was in the picture that there was extra fluid in her right lung and that they would possibly insert another chest tube to help drain. But with her being on the ECMO, her blood is too thin to try that. Today Dr. V said her right lung has collapsed because of mucous build up. They've made some adjustments and started a therapy (tapping on her chest) to help loosen the mucous and drain it that way. Since she's not moving (paralyzing drug) and coughing etc, it makes the process slower, but the paralytic drugs have been stopped as of 11am today and we've been able to see some movement (very slight twitching).
  Still really puffy, should take a few more days for that to go down.
  Echo tomorrow to check on heart and reasses where she is and a plan for weening.