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!