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!