Lyla's First Haircut

At 14 months old, you would think Lyla is well overdue for a haircut. But because she hasn't been able to hold up her head for long periods of time, she's constantly rubbing her head on the floor. As a result the hair around the side of her head is very short (about 1" or less), and the hair on the top has grown incredibly long. Sheena cut off a total of 5 inches just to even it out with the other hair on her head.

Steps

Lyla is truly taking Lyla-steps. She progresses at the rate she wants, but she seems to be on a slow and steady increase. Her biggest concern right now is growth. She's had a very hard time keeping down her formula, so we've switched her to 'neocate' formula, but so far there's no noticeable difference other than maybe a very slight improvement. With our visit this week to her Infectious Disease doctor, it was concluded she does not have a reoccurring fever syndrome (which would be terrible if she did), but weight concerns will leave her with increased susceptibility going into the winter months.

This week she's been to the ID doctor, had a blood draw, and scheduled a consultation with a surgeon regarding a potential for Fundoplication surgery (the same surgeon who installed her g-tube).

Transferring Toys

This month Lyla has been transferring toys from one hand to another and then back again! It's been so amazing to watch her do this intentionally. She is rolling all over the place and doing really well keeping her head up. When on her belly she likes to lean onto one elbow and throw the other one back behind her. She is still spitting up, and we hope this ends soon! Her weight is teetering and 12lbs.

Catch Up

This blog has sadly been neglected. We know that a lot of you out there still check this blog and we wish we were better about keeping it up to date, but in a way it was a little easier when Lyla was in the hospital because we had more down time sitting in there with her while she slept.  I'm going to try and do recaps of the last 3 months.  This might get pretty lengthy, but I really do want to have a record of all this craziness to look back on.

May:
  After almost 2 months at home post OHS discharge, Lyla got really sick. She had been getting a lot of runny noses and fevers and combined with spitting up and not gaining any weight, we were asked by her doctor to bring her in to the ER. Both Trevor and I were optimistic that this wouldn't be a long stay, but I don't think we realized how sick she was. We were luckily admitted to the PICU. I say "luckily" because that is the 10th floor and that is where Lyla has spent all of her time at UCD. At first it was with the general doctors, and not ICU/cardiac doctors, but in less than 24 hours we switched over to the cardiac doctors. This was a good change because they know Lyla more, but scary since it meant she was sicker than we thought. She had human metapneumovirus amd diagnosed with bronchiolitis and pneumonia. This stay was 10 days long and we went home just in time for mother's day. The rest of the month was filled with Dr. appts. Ophthalmology, cardiology, pediatrician, and a blood draw.

June:
  June was going to be all about fixing Lyla's eyes. First with a nasolacrimal duct surgery, to help with the drainage in her eyes. And then cataract surgery

 

to remove cataracts in both eyes and hopefully give Lyla some vision. But unfortunately, we had to cancel and reschedule appts due to fevers. We had an appt with ENT (ear, nose, throat) for a swallow study. This was really neat to see in x-ray, Lyla drinking and swallowing. I wish I took a video! Anyway, she passed! So we have officially been ok'd to bottle feed. Unfortunately, Lyla gets sick so frequently that we haven't been able to get a good consistent feeding schedule. She is still being fed continuously through the gtube and takes water and formula occasionally from the bottle. 
She's also been getting really good at lifting her head! It's been amazing to see the change. 








July:
  As a result of Lyla's frequent fevers and spitting up, she wasnt gaining weight like she should have been so her cardiologist scheduled for us to be admitted on July 1st. The plan was to have her checked out by GI, ID (infectious disease) to check immunity deficiency, and get some blood drawn. We were there for 4 days and I was ready to leave after the first night! It seemed like a pointless admission. ID didn't feel it was necesary to check Lyla out, and GI didnt have much input since the issue of her "button" leaking resolves when she's not wretching and spitting up. There wasn't anything the hospital stay was doing that we couldn't do at home. Very frustrating. We brought Mabel and Parker to the hospital to watch the fireworks at Cal Expo from the 7th floor. It was amazing how many different firework shows we could see. The Kids got bored however. One good thing was that they could do test runs of Lyla off oxygen and closely watch her sats. She was pretty consistant around 90- mid 90s so they advised us to keep her on oxygen at night while she sleeps and as needed during the day. So wonderful!!! I can't believe how much easier it is to leave the house without the oxygen tank. We had been carting that thing around since April.  We went home on July 5th.

  After discharge Lyla was able to have the eye duct surgery on July 8th. The picture to the right is how the Dr. checks if the eyes are draining correctly. The right eye drained really well and the left eye was way better than pre surgery so we could prepare for cataract surgery.









 We had to wait until the end of July to have the cataract surgery because the Dr went out of town! picture on the left is what Lyla had to wear for 28 hours!









 Picture on the right is what Lyla is currently wearing for 3 weeks. Plus 2 different kinds of eye drops 1 drop in each eye 4 times a day. She's surprisingly been so good about the eye shields and hasn't tried to rip them off. Below is what Lyla's leg looked like after the nurse flushed her IV (wrong) for about 4 days. It still is really purple right at the IV site on her ankle. I'm hoping that starts to clear up soon.

 We had the normal appts between cardiology, pediatrician, and ophthalmology. and cardiologist requested for us to be seen from ID. So Lyla got her blood drawn. The ID Dr's were pretty confident (still) that these frequent fevers/illnesses were due to her age, cardiac condition, and Down syndrome. But the tests were borderline, so more blood was drawn for more specific diseases and now we wait.

  We did take a nice trip to Lake Tahoe in between surgeries and it was really nice. (aside from the mile hike down to the beach) Lyla slept most of the time on a blanket on the sand. I think the sound of the waves lulled her to sleep. Parker and Mabel had a great time too. Mabel wanted to be buried in the sand and Parker wanted to swim out and explore the Lake with Daddy. It was something that we really needed as a family. 

New Epoch

Lyla is home, and feeling pretty good about it. I feel like we've entered a new phase of our lives, moving out of the birth and anxiety for surgery phase, and into the post surgery phase of Lyla's life. Organs are now functioning as they should, so we're working to develop stronger muscles in her, including muscles she'll need to hold her head up.  The hardest thing so far has been that in the hospital "sleeping good at night" means only getting up 2 or 3 times. But add in 2 feeding pump changes, and meds at 10, 12, 3 & 6, you're talking about getting up and out of bed about 9 times overnight. Luckily our calendar is wide open in the wee hours.

Sheena, however, is kicking butt at her new job as nurse. It seriously  is a full time job involving tons of planning and preparation. In the picture, you can see how intense our list making has been of late.

We're starting to get glimpses of what Lyla's 'likes" are. We constantly have a wide variety of music playing in the house, everything from latin reggae to Vivaldi, to The Muppets soundtrack, but of course her favorite is the fake computer music that comes out of her leap frog doll 'Violet'. She also loves the babbling brook white noise sound from her sleep sheep that we repeatedly turn on for her while sleeping.

And We Are Home!

  A day short of 8 weeks, we brought Lyla home from her long recovery of heart surgery. We are relieved that the doctors feel she is well enough to be at home and that we don't have to split our time between kids and each other! But we were also sent home with some new equipment, medicines, and concerns.
   Lyla was sent home on oxygen. She is on 1L and we feel comfortable with the equipment but wonder how long she will need it for. She is now going to be followed by a pulmonary doctor. Her lungs are a new concern and still have not completely cleared from all that went on at the hospital.
   We need to be followed up with Ears, Nose, Throat doctor to check on her vocal cord that damaged during intubation.
   We will continue to meet with GI and figure out what's best in how to feed Lyla and other GI concerns. GJ Tube is still an option for Lyla and could be more realistic if she is not gaining weight and continuing to spit up.
   Lyla is on two drugs that we will be in charge of weening; methadone and Ativan. We will do this one at a time and start with methadone. So far it's going ok, but it may be more difficult once we cut it down to once a day and smaller volume.
   Her feeds were set at 25 while in the hospital, but the dietician told us once we got home we could go as low as 20ml/hr. since she was having more spit up at 25 we decided to go down to 20ml and slowly work up. She has still been spitting up but not nearly as much. It is tricky with Lyla because it's hard to tell how much the spitting up is related to withdraw, how much it's related to upping her feeds, or how much it's just normal baby spit up! She is still on the special formula with low fats and will be for another week or two.
   She is taking 5 different medicines: Ativan, methadone, lasix, Pepcid, and ibuprofen. Multivitamin and vitamin D. Albuteral inhaler and QVAR inhaler. This means Lyla is getting something every three hours. Which means no sleep!
   On top of doctor appointments, we will be starting physical and speech therapy with Lyla. I am excited for these to begin and hope we can make up for lost time. Lyla has very low muscle tone, which means hardly any head control and her body is so floppy when holding her. Speech therapy will help her to eventually get to eating orally.

   She will also see an ophthalmologist in May and hopefully get some answers about her eyes.
   Overall things are going good at home. We've jumped right in to a routine and have her meds and feeding routine down. The kids are happy that Lyla is home and excited that mom is home all day too!

Will post some pictures later!

   

We Are Getting Close!

Feeds are at 25ml
Methadone ween still on hold.
Oxygen still at 1L. We are told she will be on oxygen at home.
Still having some spit up.
Antacids switched back.
Echo scheduled for tomorrow. If all looks good (no worse than previous one), we will be sent home!

Weening

   Today Lyla was up to 25ml on her feeds. She has been doing great with the increase but today she spit up. Dr.V thinks it had something to do with the weening of methadone and the switch in antacids. So the weening (from .6ml to .5ml)  will hold another day and the antacid dose will double along with adding back the previous one. There is talk again about getting Lyla a GJ tube which will allow feeds to go to her small intestine from the mic-key button which she already has. But there could be a tight fit internally. I really don't want her to have to get her food that way, but if its going to help with the wretching and keep her happy, then I guess that's what we will do.

Dsat and Brady when wretching

Feeds are Increasing

   Because of the inflammation around Lyla's heart, they are giving her ibuprofen. Her feeds moved up to 23, which was interesting since I was asking about it. So far she's doing great with no spit up!
   Switched to a stronger antacid.
 

Echo and Feeds

   Lyla continues to do great on her feeds. I learned today that 20ml is her "goal" and that there are no plans to add more. I hope to talk to the Dr. tomorrow to figure out why this is. She was at 27ml at home, but with a different formula. Perhaps something to do with the special formula she is on (monogen-no fats to help with the kylo). Right now they are talking about adding fat oils to her feeds instead she has been missing out on those for several weeks now. Being reminded of this, makes me worry about all the other essential things that Lyla has not been receiving while in the hospital. And I just get so worried about how much all of this is going to affect her health, her body, mind, and physical abilities. Only time will tell, but I function much better having a general idea about the future and there is just no way of knowing. There isn't a way of knowing with Parker and Mabel either, but at least with them I can kind of picture the future.
   Other things going on: echo done yesterday shows a little bit of inflammation around the heart. May just be more fluid, so more details/info with that to follow.
Dr. S had a hard time drawing blood today. It took 2nurses to hold Lyla down (one of them being a large male nurse) and she even had numbing cream with the hopes that it would keep her calmer... She was soooo upset. It is really heartbreaking to hear her and watch and do nothing.

So Much Better

   Lyla is doing great with her feeds and is already up to 20ml! Her lungs are sounding better and instead of respiratory treatments every 4 hours, they are now every 6. So more time in between being bugged and having her sleep interrupted. Her lungs look "better" in X-ray, but they are still cloudy. And she is still pulling in when she breathes but it's not as bad. I think once her lungs are cleared up that should get better. She's looking really good, but I can't help but be a little skeptical. The Drs want to see her go home real soon!

ND Tube is Gone

    Well this morning Lyla pulled out her ND tube! This is her 3rd time doing so all together. Trevor and I were talking last night about how it would stink for her to come home with a ND tube because she would try to pull it out, and have to keep her in mitts, and worry about the tape on her face... But apparently first thing this morning (for day nurse), Lyla pulled it out and squirmed all the way down her bed. Crazy girl! So this kind of sped up the esophogram to today. Thankfully Lyla passed (Dr. V was sure she would fail) and is back to the Gtube at 15ml/h (as of 3pm). Hoping all goes well with no spitting up!
  This is the last day for lovanox shots! I thought Friday was going to be the last day, so this means we won't have to give them to her when she comes home.

   Also thought it was funny to note the nurses and Dr.s here are grateful for how "normal" we are. Lol There are a lot of interesting people here in the PICU!

No IV, Happy 7 Weeks Post Op

                                                        
 Lyla's IV in her foot was taken out today. It was in for about 4 days and started to go bad so Cheryl took it out. Dr. V said that Lyla does not need a new one put in this time. Before the Drs always wanted her to have one for "emergencies" so I'm hoping this means things are looking good...
  We had a good visit today. Lyla is so much more alert and awake and her nystagmus is not nearly as bad! It's still difficult to hold her comfortably because of her lead wires, IV (when she had one), oxygen, and nears. It is just unnatural. But it is also really difficult because she is so floppy! Babies with Down syndrome are low muscle tone and therefore have hardly any control of their neck. And because of Lyla's hospital stays and surgery, she hasn't had much tummy time to help strengthen. But we have had a couple good snuggle sessions and that has been real nice.
   Today she was batting at her face a lot and snagging her nasal cannulas and even hooked her ND tube. Even with gloves on she can manage to move things on her face. She must have some good control of her hands at least. She has been known to pull her ND tube out. Not looking forward to being sent home with that, so hopefully she can transition back to Gtube. So she will probably have an esophogram done Friday?
                                        
(from day before, she grabbed her oxygen line and I swear she was trying to pull it to her mouth!)

   Also, I heard her cry! It was the sweetest sound ever! It is very strange when your baby doesn't cry or make eye contact, or smile at you. It's very sad. It's hard to explain the feeling, but it's almost like she's not a baby or maybe it's just that you don't get those same feelings as you would with a typical baby. So when Lyla cried, I could almost feel those feelings. It made her more real. (I'm sure that sounds so strange, but I don't know how to describe it really). I'm just glad that it doesn't seem that her vocal cord is permanently damaged!
   Gave her a nice bath
   O2 at 2%, but Cheryl turned down to .75% as I was leaving,  to see how she would do
   Feeds still at 19ml, hopefully tomorrow bump up again.
   Medicines:
      Lasix 1x (but will probably switch back to 2x)
      Ativan
      Methadone
      Lovenox shot 2x, ending on Friday!!
      Done with antibiotics for pneumonia (mycoplasma)
      Multivitamin
      Respiratory: albuterol as needed, and another inhaler with steroids ( don't remember name)

   

   

Fevers Subsided

   Yesterday Lyla finally had a full day without a fever! All cultures, so far, have come back negative which is great because we don't have anything additional to deal with, but also confusing since she clearly was not feeling well. She had also been throwing up, and we know it was non feed related since she is being fed ND.
   She has also been off sternal precautions (no lifting under armpits or excessive moving because of surgery) which has been very beneficial to her respiratory treatments. They are able to move her around a bit more and get a little more aggressive. She is now on regular oxygen support at 2%, instead of high flow (which gave pressure and oxygen). So great! I was extremely worried after she was extubated that it was too soon, but her breathing and O2 have been good the last couple of days.

   We are so grateful to those that have continued to pray for Lyla and her recovery. I have such a testimony of prayer and we just can't thank you all enough.

Fevers

  The last week (?) Lyla has had a fever about once a day. Usually it goes down on its own by uncovering her. But last night she spiked a really high fever of 105 and the nurses haven't been able to get it lower than 100.5. Infectious Disease ( ID) was called to evaluate and more cultures have been taken; blood, urine, saliva. And we wait a couple of days for results and things to grow. Really hoping there isn't anything serious going on, but would also like some answers to whatever is going on.
   When I arrived at the hospital, I noticed lylas breathing was slow and long. I mentioned to the nurse, and she said she would evaluate but I'm pretty sure she never did. When the night nurse came on I mentioned it again and she said that's the first thing she noticed. She was thinking possibly Lyla is dehydrated. Nurse is going to talk to Dr and probably pump her with some extra fluids.
   Her average respiratory rate is 35 and it was around 17 today.
   Heart rate high in the 170s, usually 130-150

It's Out! ... Again!

                                       

   Today Lyla had the breathing tube removed. This is her second time being extubated and luckily only after 5 days. It has only been 8 hours, but so far her numbers are looking good. Right before the tube is removed they check for airflow and couldn't hear anything. The Dr was really hesitant about removing the tube for fear that Lyla would "fail" but because of the tube size and Lyla's numbers, the Dr felt it would be ok. So I'm really hoping Lyla continues to do well on her own.
   Other updates:
       Getting fed ND ( tube through nose down to small intestine)- concern for micro aspirations and therefore feeds are ND rather then in tummy
       Off morphine on methadone to help ween
       IV in neck was removed today after I noticed it looked swollen around the site. Cheryl successfully got one in her right hand. (And on the first try!)
       Replaced mic-key button with a smaller length- this is the "button" in her tummy. It is being held inside with a small inflated "balloon". The part that is inserted into her tummy is now shorter and therefor will help stop any food from leaking out.
      She has a sore on the right side of her mouth from the tube. Left side is red.
      Rash under her neck ("looks yeasty") cream ordered.
      Seems to be more comfortable without breathing tube, and without line in her neck.

      We can hold her again! 

relaxing weekend

 Now that Lyla is on the ventilator, she should have a relaxing weekend while the vent does most of the breathing for her. It's not a positive step to go back into this, but access to her lungs has allowed the nurses to get a lot of mucus out this morning, and it will help her support increased feedings and hopefully get her back to full feeds soon. Because the breathing tube is more invasive, she'll be a bit more heavily sedated, and will be sleeping most of the weekend so she won't have to battle medical tubes all day.

Lyla Breathing: Before and After Intubation

 

The video above is Lyla breathing before intubation. Watch right under her rib cages, it pulls in pretty far.

This is after intubation. Her tummy moves up and down rather than pulling in.

Day 38, New Line

      

 This morning Dr. S tried to rewire the central line so we could avoid having to put a new one in somewhere else. I know this is a teaching hospital, but I wish they wouldn't teach on my baby. It's just not comforting to know that this dr has never done the procedure before and hearing another dr telling her what to do. In the end she wasn't able to rewire... They are thinking the wire kept running into a clot, keeping it from going in correctly. So now there is a line in her neck for drugs, but they had to go into her groin for the other stuff. But they still need the central line (to her heart).
  Also, her g-tube site is leaking, so they are going to deflate and refill the balloon that is keeping it from coming out of her belly in the inside and hope that solves the problem. I am not optimistic.

    She's pretty heavily sedated, which is nice because she doesn't have to feel all this stuff going on, but just stinks. We need her to keep her body moving around to help her lungs clear up! She is able to receive IPV treatments (puffs of air into her lungs) again since she's intubated, and that treatment is pretty effective. 

   I had a lot of "How are you doing?" And "How are you holding up?" Along with, "I'm so sorry you have to go through this" from the doctors and nurses today. I'm not 100% sure if it's just because they feel sorry for us that we will have to be there even longer now or if they know something that I don't. 

 We have so much support, prayers, and friends and family thinking about us and we are grateful to know we haven't been forgotten about! 5.5 weeks is a loooong time!

Feeling Like We Are Back at Square One

   Today's events have been interesting. Lyla's breathing has been very labored the last couple of days. Her tummy has really been pulling in while breathing and her oxygen levels have been low and get really low when she's mad (Desat). So after trying a cpap mask (see picture below) to try and help, Dr. W decided it was best to intubate (tube down her mouth). Thus the feeling of "back to square one". As much as it's suppose to help Lyla, it usually sets her back in other ways. It's just so frustrating to feel like she's not getting anywhere! And to top it off, her central line is leaking. She's already had this issue before with another central line in the opposite shoulder. So tonight they will watch the leakage and either rewire or find another site.

I'm going to try and figure out how to post videos to see the difference in breathing

2 Steps Back

   Just when we think we are finally getting somewhere... Lyla gets sick... Again. A couple of weeks ago when she was sick it was mostly fevers, but this time she is really flemy and coughing a ton. The coughing is great because it's loosening up that stubborn stuff in her lungs, but she's coughing up all that mucus and she's having a hard time getting it all the way out (she can't spit) or swallowing it back down. Which is making her upset and miserable. We are able to get some of what comes out with the wall suction (like a vacuum) but not always helpful. You can hear her rattling when she breathes and she's having some nasal flaring. Her high flow has been moving all over the place the last couple of days. From 4L 30% to 6L to 6L 60% to 8L 50%, you get the idea.
  As far as her feeds go, she was started late Friday afternoon at 5ml and was already at 10ml the next morning. However she spit up because she was upset and her gtube was not vented, so they turned the feeds off for a little and was back on at 10ml until this morning she had a huge blow out (poop) and she also spit up so she's back down to 5ml. So, not too great but I'm glad that she's at least getting something in her tummy.
   The chest tube apparently came out on its own Friday morning. It was not what the Dr.s were planning since they wanted to be able to check the color of the output, but since her output of ccs were low they decided to keep it out. It was still leaking some however and it just pooled in the tape. See below.

   And something else really fun, she had her Pulse ox wrapped around her hand/palm ( rotates between big toes and palm) and this time it left a red mark. It could be a burn from the light. It's suppose to rotate every 12 hours and I just don't know if that happened yesterday or not. Can't remember where it was before. She doesn't seem too bothered by it, but it still breaks my heart.


Here are a few pictures from the last couple of days 
          
Daddy's first time holding Lyla after surgery
 
For Dr. Suess' birthday!      

Blood transfusion #5

Caught her without the forehead sensor 

Snuggling with her puppy! 

 

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.