Initially Lyra was to be on 10 days of "gut rest". In what has become a standard experience for us during this hospital stay, the 10 days became 14. I try not to get too annoyed by this because they are doing this to be conservative, and therefore it's in Lyra's best interest, but 14 days of no oral feeding was pretty hard. She doesn't really sleep all that well. She'll get a couple of good 2 or 3 hour naps in during the morning or afternoon, but then she just catnaps, sleeping for 30 minutes to an hour. While her interactivity has been getting better (we do get a lot of smiles, and even the nurses and other visitors get smiles), she's still pretty grumpy most of the time. She's on diuretics so she has a wet diaper about every other hour (which wakes her up). She's had 2 fevers, neither of which broke 103F, but both required a bunch of labwork to rule out infections (which means getting poked, usually at least twice, often 3-4 times because she's hard to get blood from, all of which means having her sleep disturbed even more).
Throughout all of this, we were looking forward to having the gut rest end. Lyra was allowed to start receiving fluids by mouth today, just the Pedialyte kinds of liquids at first and if she tolerated that we could move on to breast milk. The challenge in all of this is that she's only allowed 5cc of fluid per hour, up to 120cc for the day, meaning that we're essentially having to feed her every hour, which is fine with us because we avoid Lyra getting a tube put down her throat again. Lyra seems to be tolerating the pedialyte okay, although she's been having these retching fits, but it's always mucous like stuff she brings up, more often than not, she appears to just have some kind of dry heaving thing. We're not completely sure why she does this, but she's been doing it for weeks now and no doctor or nurse who has witnessed it happening seems overly concerned by it. Of course this doesn't stop Maren and I from being worried, not even a little.
Maren did try some breast milk, but while Lyra loved getting it, she didn't keep it all down, so we decided to stick with the pedialyte for now. Maybe we'll try some diluted breast milk tomorrow.
It seems that once you have a child in the hospital over 30 days, you qualify for a parking pass. Yay us.
Website Note: Some of you may have noticed that you recieved an email informing you of this update. If you didn't get the email and want to, please email me and I'll add you to the notification list. If you'd really rather not get the automatic email, also let me know and I'll take you off the list.
Website Note 2: Sorry for the second notification. Ironically, I had my address on the list for testing and I didn't receive it, so I went into troubleshoot mode.
I see that I left that last update on kind of a cliffhanger note, sorry about that.
Lyra is doing fine, not happy, but at least medically she's doing okay. The pneumotosis/infection scare we had last week is about 90% rectified. Lyra has been getting daily x-rays of her belly and they're finally back to normal enough that they don't need to take them any longer. I'd like to think that we're completely out of the woods on that, but I don't take much for granted any more. She's been on "gut rest" for a week now and new information from the docs indicate that they want to go another week.
The IV nutrition that Lyra is getting is actually doing it's job and Lyra is gaining some weight, but her temperment is extremely variable. In the mornings there are times when she's awake for a couple of hours and is relatively calm and even smiley every once in a while, but there are also times at night when she's upset and nothing seems to console her. Eventually she tires out and sleeps a bit, only to wake up and be upset again. As one might imagine, Maren and I don't get much sleep on the nights we stay at the hospital. We think they may decide to go back up a bit on her sedatives (they had been weaning her off of them) and see if that has any effect. Various nurses and docs say that the IV nutrition, called TPN, will assuage her feelings of hunger, but we're not really buying it. Maren definately feels that the kind of crying she hears is the same kind of crying Lyra does when she's hungry. We keep telling ourselves we just have to hang in there for a little bit longer, but it's starting to get aggrivating when "a little bit longer" seems to keep turning from days into weeks.
Okay, new information is that the x-ray showed pneumotosis, which is gas bubbles in the intestinal wall. It is considered a serious problem, in that it can be a precursor to bad things, but it isn't necessarily a confirmation of infection.
Lyra's vital signs and labwork are all normal, so they're being optomistic, but cautious. In my admittedly non-medical opinion, I'm just glad she's not getting the continual feedings any more.
Also, it appears more likely she'll be moving to a step-down room and out of the PICU later today.
Lyra had been doing fine, gaining weight slowly and there was a good chance we would have been able to take her home within the week, but some things were discovered yesterday evening that has her back in the PICU, at least momentarily.
Yesterday started okay, Lyra was as awake as we've seen her in weeks and Maren even got a little giggle out of her. She had been smiling a lot more and becoming a little more interactive. I don't want to get into all the details, but she was still having one problem that we were getting more and more annoyed about (both in terms of the problem and the plans for correcting it), but since she showed no clinical symptoms of having any serious issues with this problem, the docs were moving forward with the feeding schedule. Later on, they saw some things on x-ray that they didn't like and the feedings were stopped. It was determined that Lyra has an intestinal infection, possibly something pretty serious. We're very hopeful that it was caught early enough that antibiotics and rest can get it resolved before it causes any additional problems.
Lyra went back into the PICU last night to get some lines put in so they can give her the antibiotics and other IV fluids. It looks like she won't be staying there for too long, and will probably be back in a step-down room either later today or sometime tomorrow. They're planning on giving her gut a rest for 10-14 days, so in all likelihood, we will not get to bring her home before her next surgery.
We may be moving out of the step-down room today if there's room on the floor, which will mean (hopefully) a bigger room and less activity. If it's not today, it'll be whenever there's room. Maren and I are doing okay too, we're back to our system of alternating days staying at the hospital. As great as the care is in the PICU, it gets very tiring having to wait to get in to see her and to be kicked out when other things are going on nearby. Now that we can stay with her and one of us is always with her it's much less stressful for Maren and I.
Lyra continues to improve, her demeanor is much better today, more curious looks and smiles, less overall grumpiness, but still pretty sleepy. We think she's starting to tolerate the continual feeding she's been getting over this last week. They're also working on weaning her off the medication, and she's doing well with that too.
The current plan is to keep giving her the continual feedings (breast milk fortified with formula) for another week or so and then they'll move her back to breast feeding and if she's okay with that, then they'll let us go home. We won't be home for too long though. The surgical team is planning on getting the second stage surgery done in about 4 weeks from now, so we may only be home for a couple of weeks before having to come back to the hospital. From all reports, the second stage doesn't have the prolonged recovery period as the first does.
Getting past the second stage, the Glenn procedure, is a big milestone and Lyra's physiology will be more like a normal baby's afterwards. Once complete, it could be a year or 18 months before the last surgery is needed.
Yesterday evening we were finally moved out of the PICU and onto the pediatric floor.
Lyra continues to do fine, sleeping a lot, but is still not feeling very well. She is on continual tube feedings and yesterday they increased the rate and the amount of calories she was getting and it didn't appear that she really liked that too much. We're just kind of holding on for the next few days to see this through, but Maren and I aren't likely to allow these continual feeds to last much longer. Lyra simply doesn't seem to feel well with them going and while we've been told over and over about her having reflux, which is likely, we don't think she'd have reflux if she were eating normally.
Hopefully with more rest and more weaning from her medications, she'll start to tolerate the feedings a little more and begin to feel better.
Lyra is finally sleeping. Really sleeping. Before Saturday she would try to close her eyes, but they'd always open back up. I don't think Maren or I had seen her sleep more than about an hour in almost a week. On at least one occasion she was so uncomfortable and unable to sleep, they sedated her.
Friday was a hard day, probably more for us than Lyra. The problem revolved around IVs and drawing blood for labwork. At this point Lyra has almost no usable veins from which to draw blood or to get an IV installed. Later in the day they tried twice to draw blood for labs, neither of which worked. Then her last IV fell out and they felt they needed to get one in, so they called and asked if we would be okay with one in her scalp. Needless to say, we weren't very happy about the situation. After being reassured that it was necessary for her safety, we allowed one attempt and they got it on the first try. The ironic thing is that after all the discussion, Lyra knocked it out about 6 hours later and they decided not to put any more in.
Since that Friday evening, she's also been taken off oxygen and air flow, so she's breathing normally and sleeping soundly. I think she slept most of yesterday, so maybe today we'll get some awake and non-grumpy Lyra time. But if she needs to keep sleeping, that's fine with me. I'd sleep for a week if I went through what she's had to endure.
We may also move to the pediatric floor today. It will depend on whether there is room out there for us. Currently they're not letting Maren breastfeed just yet, so it's not really critical for us to get out of the PICU, at least not now that Lyra is more comfortable.
Well it's day 13 of our PICU stay and we're really just hanging onto the idea of getting Lyra out sometime in the near future. Lyra is doing okay. She was taken off of the ventilator on Monday, but throughout Tuesday she was working pretty hard to breath on her own, mostly because of a lot of junk in her lungs that she has to work to get out. Tuesday evening they decided to put her on CPAP (Continuous Positive Airway Pressure - I think). This allows some air to be blowing directly into her lungs to help her breathe and to expand her lungs more.
The surreal part of PICU existance is that once you get over the initial shock of seeing your baby with all the lines and tubes connected, you start to see that she actually is recovering well from surgery, and you feel better about her being there. However, she's still on pain medication and some sedation, so she is resting comfortably. As she recovers, they begin weaning her off all the medications (and rightly so). What happens to the observer though is that you go from watching a relatively content baby recovering somewhat peacefully to a very angry, annoyed, and confused baby recovering uncomfortably. And there's not a whole lot you can do about it without going backwards in terms of care.
We're doing okay for the most part, but the unknown stuff is starting to get to us. It had appeared early in the week that Lyra was working towards getting out of the PICU, but now we have no idea. Today they're going to be redoing some of her lines because the ones she has now have been in her for 10 days and they're not working they way they should. This means more sedation and time away from her.
I usually don't like to state possibilities as fact, but today I'll make an exception today. Lyra should be taken off the ventilator sometime this morning or early afteroon. There was a chance of that happening yesterday, but with it being Sunday and Lyra still having some fluid in and around her lungs, they decided to wait another day.
Lyra continues to amaze us with her recuperative powers. Last night Maren and I saw her more or less fully awake for the first time in a week. She even gave Maren a hint of a smile (and later we learned was smiling for her nurse). Once she's off the ventilator we hope more things will happen in short order. They're already trying to get her off her IV drugs, which I hope means getting some of her lines taken out. She's not too bad right now, but they're hard to deal with and make holding her difficult.