Still Here, but Hopefully Not For Long

We are still at the hospital.  At 5:00 this morning, the nurse pulled up more residual formula than they wanted to see, so they slowed down her progress.  Fortunately, all the other feeds left the appropriate amount of residuals, so Lily is making progress.  Early tonight, they gave her a bolus (where her feed is given quickly) of 45 ml.  She held that one down.  Now she's getting a 90 ml bolus--and sucking the heck out of her thumb!  (This could be a sign that she's quite hungry!)  I'm anxious to see how she'll do.  Still, the doctors want to get Lily to the point where she's taking the amount she takes at home before they let her go home.  I'm fine with that.  


Despite being in the hospital, today has been a lovely day.  Around 7:00 tonight, I was holding Lily, and we were playing.  She kept batting me with her right hand which not only has an inactive IV in it, but also has a board holding her hand straight.  I made noises as if she was hitting me--"ooh, ooh"--, and she'd just smile the biggest smile.  Then I'd pretend like I was going to get her, and she'd cringe as if she was trying to keep away.  I also got a sweet laugh out of her as I tickled her feet.  She stood for a few minutes and danced while standing.  This little girl is feeling so much better!


It's so amazing to see.  I'm pleasantly baffled.  Since we've been in this step-down room, her heart rate, SATs, and breathes per minute have been wonderful.  She's not required any oxygen, even when sleeping, which is not how it's been at home.  It's quite miraculous! 


So I want to say that God is good.  But it almost doesn't sound fair to say that because what if something bad had happened to Lily?  I would like to believe that you would still hear me say that even if something bad had happened.  How could I not?  We have been given (so far) three amazing years with Lily.  In our sorrow, we have learned what it means to be held by God.  We have received the kindness of strangers and those we know.  We have held our family together when statistics show that we could be broken.  And the list goes on.  I acknowledge this for the better and for the worse.  Yes, God is good.  So I struggle with this because it's not just about the answered prayers.  Because I think a lot of people want to give God credit and call him good when the prayers are answered.  But sometimes, they're not, and how easy it would be to say that God failed when the prayers aren't answered.  But I think if you take a keen look at the little things in between, and you count those blessings, and you let God take over your life when things aren't going well, that's where you find His goodness.  It's there.  Always has been, always will be.

This Girl's Not Taking Baby Steps!

Yesterday was a good day!  Lily has had so many cords and tubes attached to her, that it does my heart good to watch them slowly go away.  Before she left the PICU, they took out the central line that was in her neck.  Once we got to this step-down room, they took off the blood pressure cuff and only put it on when they needed Lily's blood pressure.  Before I left and let Dave take over, they took out the high pressure oxygen cannula.  Oh, that was a horrible one because it was so big and heavy, and the tubing pulled at the tape that was on Lily's face.  And Lily does not like tape to be pulled from her body!  They decided to leave the oxygen off completely since Lily's sats were high and said they would use it when she was sleeping once she needed it.  Well, little miss I'll-Show-You decided she didn't need her oxygen AT ALL throughout the night!  No cannula!!  Shortly after I got home yesterday evening, Dave texted me to say that they had also taken out the ng tube that was sucking bile from the upper portion of her stomach.  That left nothing on her face!!  (She also has a tube at her button site, taking bile from the lower portion of her stomach, just so you know.)  I didn't get it until this morning, but Dave also texted me a picture of Lily sitting up like a big girl. . .and happy about it!  I'll include that picture below!


These are big steps!  But they get bigger!


This morning, the PT came in.  She was very encouraging, saying that therapy should be able to continue (conservatively) and that she should still be able to attend Pattison's Summer Camp.  She had Lily sitting up, and after I told her how much Lily loves to stand, she had her standing, and Lily was making herself dance!  Is this really characteristic of a child who, five days earlier, had bowel surgery?!?


I think the best news is that since Lily did so well off of the oxygen (she was considered critical care because of her lungs and not the surgery), she might be transferred to yet another room--basically a step down from the step down.  :)  AND (drum roll, please!). . .provided she tolerates her feeds (which they started this morning), she should be able to go home TOMORROW!!!  What a nice birthday present that will be for her daddy!


Speaking of her feeds. . .they've started her on a continuous feed that will give her (I believe) the normal 5 ounce feed that we give her at home but within a four hour time span.  After they see how well she does with this, I believe they are going to try the regimen we do at home.  Wow!  (Honestly, I'm not sure if this is the best course of action, but we'll see.  It just all seems so fast!)


I think I should also add that Lily has been getting nutrition and not just fluids.  They put her on TPN feeds on Saturday or Sunday, but the nature of a TPN feed is that it bipasses the digestive process as it is fed straight through the veins, so it's much harder on the liver.  They've been drawing blood and checking various levels to make sure Lily is ok with the amount she is getting.  But with every formula feed she gets, they are able to decrease the amount of TPN feed.  Hopefully, we'll be TPN free soon!


I'm amazed!  What a strong little girl I have!  For those of you who have been praying, thank you, yet again, for taking your precious time to do that!  We are surrounded by your love and your prayers, and boy, is that a nice, comfy blanket to have wrapped around you!  

I hope to follow up with more positive updates!  For now, I hope you enjoy the pictures!

This Will Warm Your Heart

Lily was moved from the PICU to a step-down room last night.  I really think she likes this new room.  After she got settled, she started playing with her toys, something she wasn't doing in the PICU.  She even gave me high-fives and reached up to touch my face.  Aw!!!  Dave stayed with her last night, and she did well, moaning a little at one time, but when the nurse came in to give her some medicine for the pain, Lily was asleep.  When I got here this morning, she was awake, but not wanting to play and fighting sleep.  It's 8am, and she's sleeping now.


Here's a video of Lily playing with one of her toys:

Moving!!

I can't remember if I said this, but one of the reasons they decided to keep Lily in the PICU this morning was because her CO2 levels were higher than they liked.  This is normal, but it still made them want to keep her a little longer.  They drew some blood about an hour ago, and her levels have improved, so Lily will be moving to a regular room!

The process will start after shift change, which is actually happening right now, but it may be 9:00 before she's moved. 

Oh, this feels like a good thing, but I'm so hesitant now to get my hopes up.  I know the nature of a hospital stay can be up and down, so I'm trying to ride a constant middle line.  It just seems healthier emotionally at this moment.

Still in the PICU

Well, we thought that we were going to be moving into a regular room this morning, but there were a few setbacks in the night.  So here Lily stays, in the PICU, but they may move her later this evening.


Overnight, her blood gas levels were off.  She had too much carbon dioxide in her blood.  They changed her nasal cannula to a higher flow one, weirdly enough, she desatted into the 80s.  They lowered the flow, and now she's at 99-100s.  Her heart rate and all other vitals are good.  An x-ray showed pockets of lung collapse, but the doctor said that can be normal, especially givin her apnea history and the fact that she's very stationary.  We brought in her feeder seat and put her in that for a while, but then she started getting cranky.  She's back on the bed and just received a dose of pain meds.

The doctor said that being on the higher flow of oxygen didn't necessarily warrant her staying in the PICU, but that wasn't enough to warrant her staying here.  Still, they want to watch her and her blood levels and make sure that a regular room will be the right choice.

 As for now, she sleeps.  It's such a catch 22.  She's calm and not in pain, but she's still, and when she's still, the fluid just might not move the way it should, and that doesn't help her lungs.  But it's hard to argue with the numbers on the screen.  They look good.  So what do you do?


Thank you for your continued prayers. 

A Moment of Wakefulness

What Led Up to This Episode. . .

Thank you, Cathy, for asking what led to this episode.   I think it's a great idea to share this part of Lily's story because it's could be a great source of information for someone who's potentially facing a situation like this.


I should preface by saying that she had done amazingly well the few weeks leading up to this incident.  Her vomiting had pretty much gone away.  Really, we had to watch her more for gagging because she kept putting her fingers in her mouth, and that would cause her to vomit.  So all was well. . .


Late Wednesday night/early Thursday morning, Lily vomited in her crib.  We didn't know this until we woke up with her the next morning.  Of course, our first thought was that she had gagged herself.  Dave gives her her water/Miralax combination as he's getting ready for work, and I think she spit a little of that up.  So again, I was thinking that she gagged herself.  When I fed her the formula, she vomited.  My initial thought was that she had gotten congested from vomiting in her crib, so again, no real worries, just the sinking feeling that the vomiting would again not be predictable.  She was quite lethargic, so a little while later, I took her out of her feeder seat and laid her on a pillow on the floor.  About 30 minutes to an hour later, she vomited.  That led me to believe that she had a stomach virus. . .again.  (She has a cousin who had recently possibly had a stomach virus, and Lily had been around her, so naturally, I thought Lily had caught what she had.)


I put her on a Pedialyte and water regimen, and she had trouble throughout the day keeping that down.  Still, I thought stomach virus.  That night, she was flinching a little from pain, but I still thought that this was just pain from the virus.  I wanted to check her oxygen levels, just to be on the safe side, and put the pulse ox on her.  Her oxygen levels were great, but her heart rate was in the high 170s.  I know that dehydration can cause a high heart rate, and being that she had vomited so much, we figured she needed water.  After we gave her the water, her heart rate went down in the 160s, so that led me to believe that the problem was that Lily just needed water.  I might add that all day she was lethargic and her poor little eyes showed that she was not feeling well at all.


One other thing was that her stomach looked distended.  Since I had recently increased Lily's 1.5 calorie formula and lowered the 1.0 calorie formula, and her face looked a little puffy, so I thought that maybe she was gaining a little weight.


Dave slept in the living room with Lily to listen out for her in case she vomited overnight.  In the morning, I woke up to her making this cooing sound that was very happy sounding, so I thought that maybe she was finally feeling better.  But that cooing sound kept going and sounded the same each time.  It was quite an eery sound.  Dave asked me to give Lily her water/Miralax combination.  When I picked Lily up, when I carried her over to her seat, when I set her down--she flinched and her eyes got big as if something hurt her.  She even seemed quite uncomfortable sitting in her seat.  I pulled out the pulse ox again, this time to check her heart rate.  It was in the 190s!  I had even watched as it got above 200.  That told me that something just wasn't right, so I made arrangements for Soleil and headed for the ER.


I'll save the details of the ER for a later date, for there's one part of that story that I'd like to share.  But I will say that I truly believe that Lily's recent diaphragmatic hernia diagnosis helped the ER staff to consider her problem a bowel problem, which it was.  It was also helpful that Lily had not had a stool since Tuesday or Wednesday, when she's normally at least once a day.  It all rushed on us so quickly, it seems.


But Lily is doing well.  She is extubated!  Her sats were at 100 when they pulled the tube out, but they put oxygen on her since she was asleep and that's what we usually do when she's at home.  Although her heart rate has gone up a little, she's had pretty good numbers with that throughout the day.  The doctor is talking about her going home around the middle of next week, but I'm wondering about that.  I know of other T-18 children whose recovery from bowel surgery has been a much slower process, so I'm at least keeping that in mind.  Trying not to be negative, but trying not to have false hope as well.


Thank you so much for the thoughts and prayers sent Lily's way.  I hope to report with more good news in the next day or so.