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More to come, but I wanted to share that Elanor is home. She was released from the hospital today. We are just so happy to have her here with us.
Elanor is HOME!!!
We have a billion dr’s appointments in the next month and a nurse coming to our home 3x a week to check her blood pressure, but our Turtle is home with us.
We are just thrilled.
Thank you so much for all of your support during the past 3 weeks-it was certainly a trying time for our family and knowing you were there for us has helped more than we can express.
This will be the last Care Page Update.
Love
Crystal
Ravi
and
Elanor
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Although I’m not allowed to visit Elanor because I’m still sick, I’ve been keeping in the loop.
The bad news–
1-They are a little concerned that Elanor’s weight has not changed in 3 days. This is a minor concern, but they want to see her gain a little weight.
2-She will be staying another night in the hospital due to the weight issue and her blood pressure (see below)
The good news–
Going off of the antibiotics seems to have done a lot of good for Elanor’s blood pressure. Her doctor has, over the course of the last 24 hours, dropped her blood pressure medicine from 10 mg of labatelol three times a day to 7.5 mgs three times a day to 5 mgs two times a day. However, the doctor wants to make sure that this wasn’t too agressive and that her bp will be okay on the new dose, hence the extra night.
For me the most frustrating part is that I can’t see her or hold her. It’s been more than 48 hours since I’ve done either, and it will probably be at least another 18 or so until I do. I know they will be some of the longest hours of my life.
You know how Elanor is sick, and Ravi got sick…and I was still healthy?
Yeah, not so much anymore.
I somehow managed to catch Ravi’s gastroenteritis (sp?) and then one-upped him by needed to go to the Emergency Room at midnight last night. As of 8pm today, I’m in an observation room. I’m free to go in about an hour or two, but that’s after 7 bags of fluids, multiple doses of zofran and reglan and a CT scan to rule out a blood clot (I didn’t have one). I’m still not in great shape (gastroenteritis being a really nasty stomach bug) but I’m in better shape than I was at this point last night.
Luckily for us, they decided not to release Elanor today, for which we were grateful. Ravi is feeling a lot better but is not a 100% and was really torn about the idea of his wife being in the hospital and trying to take care of his daughter at home.
Elanor is fine…the doctor lowered her blood pressure medication and wanted to monitor how she did on the lower dose (well, that, plus hearing that we were both sick made them want to keep an eye on her for an extra day to make sure she didn’t come down with our stomach bug). They also had some trouble with getting her a blood pressure cuff for home and her medication is pretty complicated as it has to be made into liquid form and only a few pharmacies do that. She should go home tomorrow, assuming her blood pressure stays where it’s been.
If I may be allowed to boast, our little champ had several successful breastfeeding sessions yesterday! Today she’s eating close to 3 ounces with every meal…we’re so proud!
I can’t wait to take her home, even if I am a little nervous. At least this time I know a lot more of what to look for, and being a little over reactive right now, I’d rather take her to the doctor more than she needs. I never want to go through this again.
I had meant to do the “Thankful” thing yesterday, but I don’t think anyone here would be hard pressed to guess what we are thankful for. We came so close to losing our little girl (when I came to the emergency room, they had to wheel me past the pediatric ER and the Acute ER, the latter of the two being where we witnessed the really scary stuff and it was hard not to burst into tears because I couldn’t stop the flood of memories from that room) and we are just so lucky that she is a fighter. She is healthy, happy, smart, and in our eyes (just like every baby is in their parent’s eyes) just perfect.
We’re also thankful for all of you. Your support over the past three weeks has been invaluable and we’re lucky to have you as our friends and family.
Hopefully we will only have one or two more updates on this care page. And that’s something to be thankful for.
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Elanor had an awesome victory last night–she began breastfeeding! She went for 10 minutes at 3/4 AM, did about 10/20 this morning, and about 30 minutes at noon. Each feeding is better. She still needs to finish with a bottle, but I consider it a HUGE victory.
Last night was a bit trying as she snacked and ate every 30-40 minutes from 2 AM until 6 AM. However, this is a good sign that she’s hitting a growth spurt, and other than the exhaustion in the moment I’m happy for the good sign that she’s doing well. Thank goodness for the nurses…I couldn’t handle getting up with her at 5:30 after only falling asleep at 5, so they did the 5:30 feeding, allowing me to sleep until 9, which was enough to get me ready for the day.
Because I slept until 9/9:30 this morning, I missed rounds. However, the doctor filled me in a little later.
Elanor had dropped from potassium supplements from three times a day a week ago to once a day yesterday, and her levels are great, so today they stopped her supplement. Her pediatrician will take some blood in a week or two and check her levels. This means she will go home only on the prilosec, the blood pressure meds (labatelol) and the 3 days of the drug she’s on prior to getting her HIDA scan to see why she still has high jaundice numbers.
She also was taken off her leads today and the only thing attached/coming out of her currently is her central line. That should come out tonight at 10pm–ish after her last doses of antibiotics. This means there are no cords attaching her to anything at the moment! (The central line is basically two heplocked IV’s coming out of her femerol artery.)
The MRI results were mostly encouraging. The bleed itself is showing natural progression and resolution. However, it looks like there may have been some damage to the white matter (which controls movement, as opposed to grey matter which controls thought). Neurology is going to have Physical Therapy/Early Intervention look at her and give us exercises to do to keep an eye on her range of movement. Currently they feel that her arms are a bit stiffer than they were a week ago…I don’t see it, but I believe them. They think her long term prognosis is excellent. Her next MRI will be sometime between March and May depending on when the doctor wants it.
Things are still looking like she’ll be home tomorrow.
In the meantime, I’ve posted some new pictures.
Morning rounds are taking progressively less time each day, which is encouraging. There really wasn’t anything new to talk about in terms of what’s going on with her at the second…most of our time is being spent on discussing follow up care and appointments.
The doctors have basically all said that they’d like Ravi to stay away as long as he’s still feeling sick, so I’m going to say again “Thank god for grandparents.” However, hon, if you’re feeling better, put on a mask and get your butt over here (just kidding).
Elanor’s MRI has been moved up to today. Her head ultrasound came back as stable, but they want to get it done before she’s out of the hospital, which is fine by us, as that’s one less appointment she’ll have to come back for after being released.
We’re still thinking Friday for her release, as her blood pressures were fairly stable last night.
As an outpatient, she’ll be following up with a LOT of departments. So far we’ll be following up with the Kidney Doctors (who are in charge of her blood pressure), the Liver Doctors (as her Liver numbers haven’t returned to normal yet), the Heart Doctors (she has a hole in her heart that ALL babies have, but they want to follow her just to make sure it closes before she’s 5…I think maybe once a year), and Neurology because of the brain bleed. She’ll also be working with Early Intervention and possibly a Physical Therapist to make sure she’s developing physically the way she should and to help her hit her milestones. She’ll also be seeing a lot of her Pediatrician from what it sounds like.
Today Elanor had an MRI. I got to go downstairs with her and I watched them get her ready, which involved a LOT of blankets to stabilize her little head in a giant cradle meant for much larger heads. They also put in teeny little earplugs and these teeny headphones to protect her from the noise of the machine. She was such a good little girl…she slept through the whole thing! We should get the results later today, but yesterday’s ultrasound showed no change so we’re not expecting anything new.
Elanor also got a roommate today. Initially they were going to put a two year old in the room with her, and I had to advocate for us. I had been told by the staff in the PICU that she wouldn’t ever be put with an older child (like older than 1 or so) and a two year old sounded like a BAD idea. The nurses assured me the two year old was “clean” and I argued back that she’s still immuno-compromised regardless of the antibiotics as she has only gotten her Hepatitis B vaccine and no others. We went back and forth as I made my other points (that she still wakes up multiple times a night and that would be very disruptive for a two year old, etc). Finally they moved a 5 week old in with us, which is a much better option. He is supposed to be going home today, so I hope that doesn’t mean I’m going to have to go through all this again at some point tonight.
I talked to the doctor about Ravi and here’s what she said…
Ok…so here’s the scoop
1-Stay away from her until Ravi’s fever has been broken for 24 hours
2-Wear a mask around her (like when feeding/holding/etc her…not when she’s like 3 feet away or in the next room) for the next 48-72 hours (if that includes some time at home, they’ll send me home with some)
3-They suggested seeing a PCP/Urgent Care if he’s still running a fever tomorrow…if he’s not, it’s his call.
When it comes to Elanor…
1-If it’s a bacterial infection, she’s totally covered because she’s on such heavy duty meds, there’s no risk of her getting it
2-If it’s food poisoning, she won’t get anything
3-If it’s a virus, she should be able to fight it off…it wouldn’t keep her here longer…they’d just teach me to suction her nose or whatever
We’ll watch her closely, but thus far she hasn’t exhibited ANY negative signs
1-She is actually eating MORE than usual (she took her 60 and then another 20 about an hour/90 minutes later this last feed)…and they think she might be getting ready for a growth spurt
2-Her temp/pulse/heart rate/etc have been great
If she were getting sick, her temp would be wonky, she’d be hard to wake, and she’d be off her feeds…basically the kind of stuff we saw the weekend before we brought her to the ER.
Thank goodness for my in-laws, who will be backing me up until Ravi’s back on his feet.
So we have the classic good news/bad news.
The good news is, as I noted earlier, that Elanor might be coming home on Friday.
The other good news is that her feeding tube was taken out earlier since she’s been eating like a champ and hasn’t needed any supplementation in over 48 hours.
The bad news…
Ravi is sick. Throwing up with a fever sick.
He was on duty last night, so we are not only worried about his health, but if he may have exposed Elanor to anything. It’s sad but we’re hoping he has a simple case of food poisoning, or a bacterial thing. Either would be things that she’s protected against. If he has a virus, none of the antibiotics she’s on would protect her.
I’m waiting to talk to the doctor to see if they want him to go to our PCP to take a look at him and make a judgment as to what he might have.
This also means I’m on duty 24 hours instead of 12 hour shifts…luckily Ravi’s parents can come and do a few hours for me each day. Tomorrow his mom will come and take care of Elanor for 5 hours or so, which will allow me to go back to the hotel, shower, and nap.
Oy.
The doctors are talking about letting Elanor go home this Friday.
I am cautiously optimistic
Elanor has been doing an awesome job with eating…even eating more than 45 cc’s (her required amount) on a regular basis since midnight last night. She may be able to get her feeding tube out tomorrow if she keeps this up! She even breastfed a little, and we’re talking to a lactation consultant today or tomorrow once nutrition says it’s okay.
The biggest news, however, is that they are talking about Elanor going home on Friday! Personally, I don’t know that I believe it will happen, but it’s exciting to be able to start getting the plan of action together.
She will definitely be going home on blood pressure medication. I gave her her dose this morning, and it reminds me strongly of giving medicine to the cat, except that Elanor is easier to give medication to than Lady is. She actually remains fairly still and swallows her medicine. I actually had to give it to her twice as she spit it (and some milk) up once and since it was within 30 minutes, I had to give it to her again.
She will probably go home still on supplemental nutrition (aka, mixing formula into her breastmilk in a bottle) but the goal is still to get her to breast.
