Sunday, January 30, 2011
Friday, January 28, 2011
We have been in hospice care for less than 48 hours, and I am in love with it. Making the phone call was difficult--my voice shook, I felt like the operator should burst out "oh you poor thing!" but she didn't.
Two nights ago Bill the night nurse came over and had us sign some papers, looked over Lily and pronounced her pink and precious.
The next day the day nurse, Sunny, came over, with the social worker. We discussed Lily, discussed staying out of the ER, and what might be done to make sure that happens. So throughout the day, I had five new tanks of oxygen delivered, tender grips for those slippery cheeks, tubing, a chaplain for emotional support, and our very own suction machine. No more 3 hour trips to the doctors for a good deep snuffing!
I love the idea that we have someone other than 911 to call in the night if Lily just doesn't seem comfortable. I love that, in that case, we have medications available and on hand to help her calm down. I love that all our needs--from oxygen to feeding supplies to "someone to pray with us" is available at one number 24 hours a day.
I just feel relieved.
It has really helped me get down to the good stuff--enjoying Lily. Taking a long nap with her in bed after an exhausting photo shoot with usually quite photogenic and camera loving Ella. Bathing, patting her, and loosening her goo and then being able to get in there after it! (tmi?) I just feel supported and taken care of and it is so, so comforting.
Last night I fell asleep on the floor at 7:20 and didn't wake up until Zar drop kicked me up to bed at 11. I was tired from the busy day with all our visitors, tired from taking care of three babies (one of whom screamed rudely at me all...day...long...) and tired from the slight illness I picked up after being barfed on two days ago. But also I think I was just relieved, and relaxed, and feeling like it was a safe time to finally just let go and briefly let down my guard.
Although I apologize to Zar for not responding to any of his questions, and not helping get the girls in bed, and not remembering all of this the next morning.
Wednesday, January 26, 2011
We had a rough night. Lily didn't want to keep her sats anywhere near an acceptable range for more than a few minutes. This was a combination of the monitor, wriggling around, the tender grips that just won't stick well on those lotioned up cheeks, and of course, Lily. So although it was not so dire a situation as the numbers would have you believe, there wasn't much sleep to be had.
Went to McDonalds (again) because Ella was asking for the Park...and with the wet and cold back in town, that means Playland. During lunch Lily's doc called to discuss her echo that was supposed to take place tomorrow. There was some question as to whether she was healed up enough from her last PICU admission. I said she really didn't have any sort of infection at that time, but now, on the other hand, she is junky and coughing and I don't know whether it's from a virus or whether more fluid is backing up into her lungs. Either would be totally possible. We decided to give it a few days and see if she improves, and if not, decide whether to go ahead with the echo. I'm not even sure we want to put her through even that. I hadn't really realized that with it being a sedated echo, she would be intubated, something I wanted to be done with...but is it okay if it's for diagnostic and not heroic purposes? And I guess you need diagnostics to even get to heroics. There is no right answer. I don't want her to have another iota of pain in her life, but sitting around waiting for heart failure isn't exactly pleasurable. I decided it's time to call hospice.
Ella had been increasingly clingy today. About ten minutes after talking with cardio, she demanded a hug, and then wouldn't let go. She was sitting on my lap while I talked with a friend when she announced "I wanna feel better!"
"You want to feel better honey?"
So we pushed around the vomit with a rag best we could and headed home.
Our clothes are in the wash and Ava is napping, Ella is snoozing/watching Minnie, and tonight hospice is coming over to assess and admit Lily. I really think it will be a great resource for us, but it's still a hard step.
Deep breath. We are all going to be okay.
Tuesday, January 25, 2011
I'm trying to take a different attitude to our current situation. (Thanks Aunt Carolyn!) I want to look back on this time and say "Remember that cozy special winter when Lily was with us? Remember how we just took it slow, hung out together, did fun things with the girls, and focused on each other?"
And so I'm focusing on just being well. Friends, good food (and a little junk), exercise, reading, taking deep breaths and letting Ella dump out her sock basket every 20 minutes. Only it turns out, if you leave the socks all over the living room floor for the day, she only dumps them out once!
As for Lily, every morning while the girls eat their breakfast I fill up the baby tub and give her a warm bath with coconut oil for her poor sensitive skin. I massage her head and brush her hair, massage her limbs and thump her back to loosen the goo. I dress her in fleecey footie jammies and hold her out for her sisters to kiss. It's a sweet and quiet few minutes.
With three little girls it's not always serene around here, but we have our moments of zen.
Friday, January 21, 2011
Wednesday, January 19, 2011
Tuesday, January 18, 2011
I'm not going to say that anymore.
Monday, January 17, 2011
I haven't blogged in a few days because it seems every time I get it in my mind to do so, something happens that changes our game plan and I have to rethink everything I was going to say. With that in mind, this is where we are tonight.
We had another ER visit today with Lily. It was actually the 2nd time we rushed to PCMC this weekend. On Saturday she was having issues with her oxygen sats, we couldn't get her above 90, so we piled in the car and headed for the hospital. Once in the car she of course started satting at 100, so we headed for homecare instead (which miraculously is open on Saturday) and traded in our pulse oximeter for a new one, thinking the issue was all in our machine. We went up to Park City to do the annual ski weekend with my parents. Lily seemed fine the rest of Saturday, and Sunday. Then last night the same oxygen issues started up again. Turned her up, switched the probe, tried different locations, finally seemed to find a combination where she was doing okay, and went to bed. At around 1:30 it started again and we spent the rest of the night taking turns silencing the alarm. Honestly that's all we did. I really did think it was the pulse oximeter and we would deal with it in the morning. In the morning we did just that, decided it was her, and not the machine, loaded up the kids and came down the mountain. No skiing for us.
At the ER her sats were still at 85 on 1 liter O2, her regular being 0.5 L. We put her up to 2. No congestion. No fever. Moving air well. Chest x-ray actually looks BETTER. We decided she must be shunting blood strangely through her giant, messed up heart and we went home with the plan to call cardiology tomorrow and see if they want to do an echo. When we left she was on 1 L again, satting 99. Now she's on 2 liters again, satting low 90s.
The funny thing is she looks really good. She's active, awake, maybe a bit irritable but if it weren't for the dang monitor we would think she was doing better than ever.
So is this our new normal? Chasing her sats around, up to 2 liters, could even use more but our concentrator only goes that high?
We are tired and frustrated, and unsure what is right anymore. Why is Lily here? She doesn't have much quality of life. She sleeps even more than usual since we started her seizure meds. Her skin is forever breaking out and peeling since the amoxicillan rash. She is covered with bruises from the multiple IV attempts from our PICU stay. Now she is requiring a massive amount of oxygen. I mean, when does this end?
Our only "Hope" as been surgery to fix the multiple holes in her heart, which could potentially bring her oxygen needs way down and fix this latest shunting issue. But I'm certainly not thrilled about putting a tiny baby through open heart surgery when she has so many other issues on top of her heart. Zar and I feel like terrible parents when we look at each other and wonder aloud if she--well...would rather not be here. We keep waffling on the DNR issue; we discuss intubation and what that would accomplish, we change our minds minute to minute.
I guess I'm just looking for permission to completely fall apart for a second and say that this is just too hard. It is too hard with two other little girls. It is too hard when Lily doesn't seem to have much to live for. When it seems like most of her life is either spent sleeping or in pain. When she doesn't even seem to want to be held. When it just doesn't seem worth it, to anyone.
I believe in comfort care. I believe that death is not the worst thing, and focus should be on life, and the quality thereof, and not on just alleviating death. But of course it's different when it's your baby. When you are the one saying "no...do nothing."
My biggest fear is not surgery. It is not even doing the surgery and having it not help. It's this; choosing comfort care only, and then not being able to comfort her. Watching her decline. How long that would take. Just waiting. Just because an option is available, doesn't mean it should be utilized. Unless, of course, it should.
Wednesday, January 12, 2011
We're Home! Hooray for having the experience that convinced the docs to let us discharge from the PICU instead of making us camp out on infant unit for a few days.
Sunday, January 09, 2011
Saturday, January 08, 2011
The Celebration of the Insane--we found a cause for the Blue Spells!
For one, it was very, very long. I cannot believe just this morning I rolled out of bed, put on scrubs and went to work. And told everyone Lily was doing great, and would be out of the hospital as soon as we could finagle it.
Well, since then Lily has had five seizures. And I can say seizure now, not "blue spell" or "episode" because we have confirmed seizures. She had her first seizure this morning before Zar and I got there, then another after Zar arrived, and then another while I was on my way up, having left work early, and then another, after being put on an EEG and c-pap but of course during the time the EEG was paused for adjustment...and finally, the last, which we caught on EEG and quickly confirmed was seizure activity. Which wasn't good news, I suppose, but not bad news either.
Prior to the confirmation we had ordered a DNR/DNI. Which means, we had decided that we didn't want a tube shoved down her throat, or her chest pounded on, if a blue spell was lasting too long and it looked like she wasn't going to pull through. That was rough. We felt like there was no reason to intubate, work to get extubated and then have her turn blue the next day and have there be nothing we could do. She was serious about the blue spells too, dropping to an oxygen saturation of 10 today while on c-pap. We hunkered down to wait for the next one, which we feared would be her last.
Then the docs came in with the news that there are storms in her brain, starting on the left and then traveling throughout, and once her brain gets overwhelmed, her heart rate and respiratory rate drops, her sats drop to nearly nothing, and then she has to fight to get back. Apparently she really wanted us to diagnose them, as this is the first time she has had so many so close together. Or at least that is how we are choosing to look at it.
We pulled the DNR/DNI to give her new meds a chance to work, to see if we can calm her storms. We had ice cream cups from the patient "nutrition" room to celebrate. (This was really more me...Zar had a harder time "celebrating") and we steeled ourselves for more PICU time than we originally anticipated.
Funny that a seizure diagnosis also brought hope.
Friday, January 07, 2011
Lily is in the PICU. She's okay though. At least that's what the nurse said over the phone 20 minutes ago. If you were to ask me I would say "She's FINE! Sheesh." But you learn that everyone has their own definition of "Fine." Apparently our nurse feels that no kid in the Intensive Care Unit can really be considered "Fine" so she said she was just okay, and then proceeded to tell me she was about to wean her oxygen down a little more. That would even get a "She's GREAT!" out of me. But alas, to each her own.
This morning at 4 am Lily started whining. I tried my best to snooze through it and chalk it up to "neuro-irritability" which I learned about from the Palliative care team yesterday, but Zar was up and more agitated than Lily. Yes, her monitor was also beeping a bit but she was Crying for heaven's sake. Anyway, Zar kept waking me up with his "Why is she so sad!?" and "What can we do!?" So finally after I had sent him downstairs for tylenol and albuterol, I decided I had better have a look.
Lily was indeed irritable, and also pale, and pulling for breath, and gagging a bit. Plus her heart rate was occasionally over 200. We started making ER plans, but then after the tylenol, albuterol and a prayer she seemed better and went to sleep, so I put her in bed with me and went back to sleep.
Today was supposed to be a busy day for us, with physical therapy at 9, synagis and doctor appointment at 1030, and hair appointment at 1230, but none of that happened. Instead, although Lily looked better, her heart rate was still too high for comfort and we decided we had better take her in. A few minutes later she spiked a fever of 102.7 so that just hastened things.
I drove her up, got her checked in, went through 7 IV attempts with her, learned that her urethra goes quite a bit "to the right" and ate a soggy english muffin with fake egg. We got to the PICU quite quickly; the hospital is practically empty or so it seems to me. Anyway, no pneumonia. No urinary tract infection. No RSV or Rhino or anything else on VRP. No more fever. Some extra fluid on the lungs, but after screaming through the IV sticks she seemed to open up those lungs and move air better.
So. We are in the PICU. It's all different. This is good as it's easier to separate Lily's PICU from Charlotte's PICU. This is our first visit back in nearly 2 years. Even the room numbers are different. Bed 19 is no longer bed 19. There is a lot more light. Those famed slushie machines I heard tell of were empty. It is FREEZING. Lily has the same mobile Charlotte had, very familiar and dear and somewhat difficult to hear. She's hungry and on high flow oxygen. I am home with her sisters, hopefully Zar will stay there tonight. We are worried about her heart function due to the lack of infection. Her urine output is down. Some question on g-tube drainage. But did get a very nice cream for her amox rash. Looked better immediately.
Hopefully things will continue to be fine, or at least okay.