bonnie & jason

Making up for lost time

Since I feel like the twins are getting the short end of the stick in the picture department, I’ve been trying to make amends. Here are some more:

Ashley trying to make her eyes bigger than her mouth.

Amanda reminds me of Charlie Brown with her round head, sparse hair, and frowny face.

Amanda knows the answer.

Ashley looks like she’s about to pounce.

Amanda is getting chubbier

Still has some catching up to do in the hair and cheek department, but making progress.

Don’t let her eat me!

What’s going on over there?

Someday, I’ll be able to reach the top of my head.

Ashley’s cheeks fighting the laws of gravity.

Mini mill has arrived!

I got the mill today. Here’s a crappy phone pic:

I still need to set it up properly, but in typical inpatient Jason fashion, I did make a test cut.

Amanda update

Amanda went back to the pediatrician’s office today to get a quick check up and hopefully remove her feeding tube. Turns out she’s gaining weight fine (7lbs 14oz) so Dr. Langston took the tube out. Now we have our baby back sans any and all tubes.

With tube:

New and improved without tube:

She also got her first proper bath today in a long time:

From here on out, the goal is to keep her healthy for a while as her immune system gets stronger. Otherwise, she’ll continue to be on Zantac (for reflux) for a while to minimize any tummy issues. She rarely spits up though so this probably won’t be an issue long term. Also, we have some follow ups with the pediatric neurologist and the feeding clinic. Aside from that, we just need to keep up with the life having a toddler plus twin infants. No easy task in itself!

Gorgeous day for an Easter Egg hunt

Hottest day of the year so far was spent in Brisbane with a bunch of little rug rats running around for Easter eggs. The Chan’s needed an excuse to host a mah jong party since Uncle Henry, Aunt Lillian, Vanessa, Dylan, and Avery were in town for a visit and we could not have had a nicer day for it. A bunch of pictures below. Here is the entire album.

Here’s Alissa with her fancy dress and hair do ready to par-tay:

Practicing her kung fu moves in case someone tries to take one of her eggs:

Getting some seat time while daddy jump starts his car since it hasn’t been driven in so long:

Prepping for the hot sun:

Mmm… eggs:
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Eww… eggs:

Eggs? Who cares?

“Don’t touch my eggs!”

Megan, totally prepared to dominate the hunt:

Dylan and his basket of optimism:

Megan has spotted another one:

Alissa is just a hair taller than the basket:

Forget the eggs, Abigail wants to slide:

“Yes, my eyes really are that big.”

“I got the chocolate, you can have the egg.”

Good to be home again

Now that we’ve been home for a few days, things are getting back to “normal.” Amanda is still eating well on her own and our pediatrician was happy with her weight gain at our last appointment. Assuming everything continues on track, he’ll take the tube out at our next appointment on Tuesday. I’m trying to make up for lost time in the photos department, so here are a few.

Amanda and Ashley, together again

Amanda and Ashley are twins, but have always been different in size. At birth, Ashley was already 1 lb heavier. Now, two months later, Ashley is probably at least 2 lbs heavier. I’m sure Amanda’s recent stay in the hospital didn’t help, but even without that I’m sure she would still be quite a bit lighter. Anyway, here’s a pic of the two of them. They’re in the same outfit but Ashley is in a 0-3 month size whereas Amanda is in the newborn size.

We’re coming back from the hospital

Hospital?! What?! For those of you who were wondering about my lack of posts over the last 2.5 weeks, we’ve been busy taking care of Amanda at California Pacific Medical Center. I was going to blog about it along the way, but we didn’t want anyone to worry so I figured I’d just post a summary at the end. Here we are, near the end (just waiting for final discharge arrangements now) so here’s the day-by-day-ish diary of our not so fun ordeal. (There’s a lot of detail so I apologize for the minutiae… but it was helpful for me to internalize everything and I almost consider the blogging process a bit therapeutic.)

I took a couple pictures almost every day. She definitely looks very sad in the beginning with all the tubes for the ventilator, feeding tube, IV, O2 monitor, etc. in the beginning but as the apparatus is removed, she starts looking more and more like our little girl again. (As an aside, these kinds of pictures are very similar to what I do when I volunteer with moment by moment. If you’re looking for a local non profit to support, let me know and maybe we can figure out how you can help with either services or donations. www.momentbymoment.org)

EDIT: Saturday 3/28/09

Before anyone gets their undies in a bunch, Amanda is stable and being cared for by some of the best medical professionals in the world. Also, Ashley and Alissa are doing fine.

So what happened? As you know, we’ve all been sick for a number of days now and Ashley and Amanda actually went to see our wonderful pediatrician, Dr. Langston on Thursday. At the time, Ashley was the one we were more concerned about as Amanda seemed less sick. But on Saturday morning, Amanda seemed a bit pale to me, but I didn’t think much of it as she was still able to eat a couple ounces every three hours until the 2:30pm feeding. At that point, she refused the bottle outright and I noticed that not only was her color off, but her breathing seemed a bit erratic. But no fever, and no weezing or anything like that.

I wasn’t super concerned, but I did call the nurse line that we have available to us through our pediatrician and they made an appointment for us to go see the off hours pediatric referral group at 4:50pm. By the time we got there, Amanda still refused to eat and she seemed a bit cold in addition to her other symptoms. We eventually saw the doctor she immediately became concerned because not only was Amanda’s temperature low, but her oxygen saturation (O2 sat)was low, and she seemed both lethargic and not all that good about breathing deeply and regularly.

She immediately put an oxygen mask on her and called the hospital next door to admit her. Shortly thereafter, one of the hospital doctors arrived to escort us to the emergency room. They were waiting for us when we arrived a few minutes later and all of a sudden, we were amidst a flurry of activity.

First of all, there were a lot of people around from the ER doc and nurses, to the PICU doc and nurses, to the resident, and other support staff. Second, it was near shift change so there were practically double the people who would otherwise be around. And finally, since Amanda was not doing very well at all, they had a bunch of tests and procedures they wanted to execute ASAP.

First, they worked on making sure she was getting enough oxygen. This started out as just an oxygen mask, but she soon got a CPAP (continuous positive airway pressure) which was supposed to help keep her breathing regular as whatever was making her sick was causing the erratic breathing. (As an aside, they called the erratic breathing apnea which you may have heard of in the context of sleep apnea where many adults literally stop breathing momentarily while sleeping and don’t start up again until the brain basically wakes them up for a second.) The CPAP ended up not being sufficient as her O2 sat still wasn’t consistently near the 100% range so they ended up intubating her. (If you’re a fan of medical dramas, I’m sure you’ve heard the term “bagging” where they basically put a tube into the lungs and put a balloon type device on the end to help force air and additional oxygen in and out of the lungs.) This was a bit of a stressful time just because we were reacting to all the activity and the O2 sat monitor kept on alarming. Plus, the idea of not breathing put all sorts of bad thoughts into our heads.

Second, they worked on figuring out a diagnosis. This was a four pronged attack. First, they draw blood to look for infections. Second, they did a lumbar puncture or spinal tap to check the cerebral fluid for meningitis. Third, they collected urine to see if she had any urinary infections. I suppose that might also reveal any kidney problems. Finally, they did a chest x-ray to not only look for pneumonia and other infections, but also to check the position of the chest tube to make sure it was not too far up nor too far down. (They don’t show that part on House or ER.) Along the way, they also noticed another symptom. It seemed like Amanda was having small seizures periodically. More fuel for the scary fire.

So what were the results? First, she was positive for RSV which is a specific kind of cold virus that is not particularly dangerous for adults, but can be very dangerous for immune compromised people such as infants. One of the manifestations of RSV is erratic breathing or apnea which Amanda was certainly exhibiting. Second, the chest xray showed a little bit of bacterial infection (pneumonia). Finally, she also had low sodium levels which could also contribute both to the breathing issues and the seizures and was likely caused by her not eating much over the last number of hours.

After the flurry of activity, we were moved to the PICU (pediatric intensive care unit) where they worked on getting her breathing tube situated and started the antibiotics prophylactically in case any of the tests came back positive for bacterial infection. Since then (around 8:00pm) she’s been pretty stable with just some minor adjustments to her breathing tube, some more tests, IV fluid with D5 (5% dextrose for calories), antibiotics, and finally Adavan and some other drug I can’t remember right now to help keep her comfortable and calm and also reduce the seizing.

In the meantime, we talked to yet another doctor, Dr. Tsukahara, who is the attending physician for the PICU. He thinks Amanda will be on the respirator for at least three days and maybe more depending on how her lungs are doing. Also, he expects our hospital stay to end up between one and two weeks, again, depending on how quickly she bounces back.

So now it’s 12 hours (Sunday, 10:30am) later and Bonnie spent the night at her parents’ house with the rest of the clan while I stayed at the hospital with Amanda. Bonnie will come back to the hospital while I go home and shower and we’ll figure out the plan for the next few days.

All in all, it’s been a very stressful time, but I feel very lucky to live in a place with top notch medical professionals and services. Hopefully Amanda makes a quick recovery and has no long term effects. In the meantime, I’ll try to keep you all updated via the blog. (There’s a family room with a computer down the hall where I’m typing this now.) And thanks for keeping us in your thoughts!

EDIT Monday, 3/30/2009 10:22pm:
Not much has changed over the last day and a half or so. The meningitis test came back negative so that’s good news. Another chest x-ray yesterday showed her lungs were slightly worse than the previous day. Per a consult from the pediatric neurologist, they did an EEG today to check her brain out to make sure that the seizures weren’t caused by any brain problems. Also, she’s been on a bronchial dialator to additional support her breathing. Otherwise, she’s been doing ok on the ventilator with just a few episodes where she needs a little extra attention. Also, her IV needed to be moved which was a bit difficult as she has apparently inherited my “difficult” veins. It ended up in her scalp… not pretty, but that’s not the point. If they think she’ll be on the respirator much longer and the IV continues to be problematic, they may put in a central line instead. That’s when they find a larger vein, like the femoral vein, that is deeper and requires a sterile procedure to insert. Poor baby… she’s like a pin cushion.

As for feeding, she’s been getting 18mL of breast milk every hour through a feeding tube. Hopefully, she can get off the respirator in the next couple days and we can start feeding her with a bottle or even at the breast.

EDIT: Thursday, 4/2/09 9:00 am
Amanda continues to get better as her chest x-rays clear up. The pediatric neurologist, however, wanted to rule out any brain issues given she had seizures when we first came in. So they did an ultrasound of her brain. It showed a couple small cysts which could be perfectly normal, or could be from something inutero. It’s probably not related to the RSV, however. In any case, they’re going to do an MRI later this morning to get a better look and make sure nothing is really wrong.

Also, her blood cultures and spinal fluid cultures remained negative so that’s good. However, it turns out she has a urinary tract infection, again, unrelated to the UTI, so she’s going to remain on one antibiotic to treat that. Poor baby.

Otherwise, she’s still on the ventilator but they’ve turned it down gradually over the last couple days so we’re hoping that after the MRI, they’ll take it out.


EDIT Thursday, 4/2/09 7:42 pm
Well, the MRI showed a small abnormality on the right side of her brain which may or may not be an issue. It could be something that happened as a result of the seizures she had when we first came in. It could be a result of ongoing small seizures that aren’t apparent. It could be a result of a defect in her heart that results in blood not going where it’s supposed to (through the lungs) so that unfiltered blood gets into the brain and causes a clot. So they are currently doing another EEG, this time for 24 hours, to see if there are any seizures going on underneath the surface so to speak. Also, they will do an ultrasound of her heart tomorrow to look for any defects there.

She also is was a little hypothermic when she came back from the MRI which is not uncommon with kids with RSV. Plus, coming back from the MRI may have made her a little cold.

Otherwise, her chest x-rays continue to show improvement so that’s a good thing. She’s still on the ventilator though, since the MRI itself was delayed by an hour or so and they would prefer to take her off the ventilator earlier in the day when there’s more support around. She still has moments where she “Brady’s” (heart rate drops) and desats (O2 level drops) and it’s unclear whether those are caused by irritation from the tube or inflammation of the lungs, or just her overall weakened state. Every time that happens, I think I lose a month off my life. Damn kids…

Alissa and Ashley are doing fine though. Both seem to have completely recovered from their colds. Bonnie is also over her cold although her emotional state could use some relief. I’m handling the stress ok. Work is actually a bit busy right now as well but I seem to be juggling it ok. It’s actually nice to have a bit of a diversion from staring at Amanda all day.

So, I’m hoping the next 12 hours go by with no episodes and we can get Amanda off the ventilator finally. Also hoping the EEG comes back entirely clean and the heart ultrasound doesn’t show anything scary. Fingers crossed.

EDIT: Friday, 4/3/09 3:00 pm
Good news is that both the EEG and echo cardiogram came back clean. Bad news is that Amanda didn’t do well without the ventilator so they had to intubate her again. The current thinking is that she still has some inflammation and irritation in her lungs that needs time to improve. They’ll also increase the bronchodialator dosing from once every six hours to once every four hours. So at this point, we need to wait for the frequency of her episodes to go down significantly before we feel confident in her ability to breathe without the ventilator. Hopefully that happens soon. But it’s really just a hurry up and wait kind of situation.

EDIT: Friday, 4/3/09 10:10 pm – random thoughts
Over the last six days, I’ve spent at least 20 hours a day at the hospital and use the remaining hours to drive home, take a shower, play with Alissa, hold Ashley, and then drive back to the hospital. I feel bad for not spending much time with Alissa in particular. She’s becoming such a big girl. It’s to the point that I spend enough time away from her that I notice the little changes during those few hours that I do see her. She seems to have grown a bit. Her hair seems longer. She has new words and phrases. She has a new game or habit. And this is all in less than a week! They really do grow up fast. Even Ashley is different every time I see her. Man is she getting chubby!

All of the cliches about these kinds of situations are true. Life is fragile. Cherish the little things in life. You have nothing if you don’t have your health.

I’ve probably lost about five years off my life expectancy over the last week. That’s not so bad since I plan on living to 100. 95 isn’t too shabby. Then again, I still have three teenage daughters to live through so maybe I should just focus on making through my late forties first.

I need to be a stronger advocate for my kids. This means stepping out of my comfort zone and not just letting things be as they may. I need to be pushy, adamant, insisting, demanding, and an asshole if that’s what it takes.

Hopefully we can take Amanda home from the hospital next week sometime and I can get back to being a daddy to all three of my girls (and a husband to my wife).

EDIT: Monday, 4/6/09 9:20 pm
Over the weekend, Amanda continued to get better and tomorrow, the plan is to take her off the ventilator. The doctors feel she is physically ready for it, she just needs to do it. There is a process to this extubating apparently and Amanda will have a couple extra steps. First, around midnight tonight, she will be taken off the Fentanyl drip that she’s been on for a while now. The Fentanyl is a pain killer and sedative as well. It has a pretty long half life though, so that’s why they’re going to take that out of the equation tonight. It will be replaced by Propofol, which is a sedative that is fast acting. This way, once it’s time to extubate her, they can stop the Propofol and it will apparently leave her system in a matter of minutes, which should make her ready to take her first breaths completely on her own. Also, they will stop her feeding tube a few hours before hand as well, to make sure she doesn’t have anything to throw up. Otherwise, there is risk that she would aspirate whatever she puked into her lungs which we just spent so long trying to clear of any fluids. They will compensate with IV fluids so she has plenty of energy. So hopefully, around 10:00 am tomorrow, she decides she wants to breathe on her own and her heart rate, breathing rate, and oxygen levels all look good. Docs and nurses are optimistic so we’re feeling good that tomorrow will be a good day. We shall see!

EDIT: Tuesday, April 7, 2009 6:00 pm
Good news! Amanda came off the ventilator today and is doing well. She isn’t even on oxygen now. I tried to bottle feed her an hour ago, but it took almost 30 minutes to get her to take 10 cc’s. As such, she’ll go back on the feeding tube later and we’ll get some help from some specialists tomorrow. She’s also off all the meds now so she just has the IV now for fluids. Both Bonnie and I got to hold her a little today which really helped our psyche along with the fact that she doesn’t have a big tube taped to her face anymore.

Hopefully, she can get the hang of eating again soon and we can go home before the weekend.

11:00 pm
Forgot to mention that Ashley had her 2 month appointment today. She is now 9lbs 9oz! So she gained 11 oz in a week! Little chubster.

EDIT: Thursday, 4/9/09 8:20 pm
Amanda had her follow up MRI today and it looks like the effusion is clearing up. The pediatric neurologist also thinks that she’ll be fine as she’s good with eye contact, tracking things, and other basic neurologic basics. He did say that she’ll probably lose a couple weeks in development compared to Ashley since she was sedated for most of our time here. No big deal in my mind. I figure my own development is at least a decade or so behind.

Otherwise, she’s still continuing to get better at feeding, but still hasn’t gotten back to normal yet. So she stiill has the feeding tube in. One change that will happen tonight though, is that instead of feeding her continuously into her intestine, they’re going to bolus feed her into her stomach. I think they’re starting with 44cc’s every two hours over a 45 minute window. Hopefully she tolerates that well and doesn’t throw up or anything. She’s on Zantac to help reduce the risk of reflux.

EDIT: Friday, 4/10/2009 9:08 pm
Not much changed today. Amanda took 20cc without spitting it up though, so that’s good. Still not exactly back to normal, but we have high hopes that we’ll go home this weekend.

EDIT: Sunday, 4/12/2009 10:51 pm
Amanda has been taking the bottle at every feeding today but still not taking as much as we would like. And not as efficiently as we would like. We’ll see what the doctors say tomorrow about what criteria we need to meet to go home. In other news, we did move out of the PICU to a room upstairs. Nice for me since I have an actual bed to sleep on now.

I haven’t taken any pictures of Ashley and Alissa since this whole saga began. I’ll have to make up for it later. Today, Alissa got an Easter present from Benita including a Dora the Explorer backpack which she insisted on wearing to the hospital today when she, Bonnie, and Ashley came to the hospital. She looked very cute with it on. And of course, it held precious cargo… goldfish, coloring book, crayons, and an Easter egg for Amanda.

EDIT: Monday, 4/13/2009 9:20pm
Amanda made some more progress with feeding today. We’re trying to get the docs to let us go home. Hopefully soon!

EDIT: Tuesday, 4/14/2009 5:52pm
Amanda took the whole 66cc’s this afternoon! Hoping she keeps that up. Also, we think the docs are letting us go home tomorrow. We will have the feeding tube and pump just in case.

EDIT: Wednesday, 4/15/2009 2:48pm
Looks like we’re going home soon! Just need to schedule follow up appointments now. I’ll post some pictures when we get settled at home.