Looks like Jane’s improvement has taken a wrong turn. All of her labs and body systems have taken a hit and are getting worse. It may be a sign of possible infection, but they dont know.
I use to think doctors knew everything, but given all of the unknowns they’ve proved me wrong.
Because Jane has had a few set backs it takes her a while to recover from them. She is managing and doing ok…not great, but just ok. She is a bit more swollen than usual and a lot more sleepy. The docs keep reminding us how sick she is so all of these set backs are part of the game. We had a conference with our attending doctor yesterday just to get on the same page and see where we are at. The good news is that Jane really isnt a heart patient anymore. Her surgery went well, she continues to recover great and her body has adapted to her new physiology. This is HUGE given how sick she was and how severe her heart condition was. Praise God!!! Jane is truly a miracle!!! Her lungs are still a bit behind, but that is to be expected since she has been on a ventilator since birth. Just think of it like a training program…if you dont use it, you lose it. That is the case for Jane and her lungs. It will just take some time for her lungs to get stronger and when she is ready she will come off the ventilator. The bad news, though, is that Jane is now a liver patient. Every test possible is being run to try and figure what the problem is. In the meantime, Jane is being treated for an infection just to be on the safe side. Infections can go sour really fast…it’s best to be on the safe side with compromised babies… all babies, really.
Daniel is back home, well– back to our new home. He was gone for work for a few days and that was horrible in itself. I’m soooooooooo happy he is back and Jane missed her Papa!! It’s great to be together as a family 🙂 We’ve received some very encouraging words from many people over the course of this time and I have truly been uplifted. A HUGE THANK YOU!!
**Jane had a quick visit from her doctor from CHOC this morning. Apparently, he flies over every once in a while to check on his patients. That was pretty cool. She has not been forgotten about….and they are anticipating her arrival back at CHOC (but who knows when that will be).
I was gone this week for work. I put in as much time as possible so that I can come back to my girls and be with them for as long as possible before I have to go back again. I was planning on coming back Thursday night, but several complications (which I’ll describe) got worse, so I just got on the next plane available.
1. Jane the heart patient is doing great, as far as her heart is concerned. If she didn’t have any other complications, we’d be back at CHOC long ago, and talking about possibly bringing her home before her next surgery.
2. We talked about her kidney has normalized, but things have gotten a bit worse since the docs told us that everything’s perfect with her kidney. She was on a medication that was harmful to her kidney, so they had to stop that, and are looking for an alternative. We’re not too worried about her kidneys, but we know not to take anything for granted, cuz that can change really quickly.
3. From a respiratory perspective, doctors decided her lungs aren’t as strong as they thought they were. So as they were weaning down on her breathing support, her L lung collapsed, and now they are spending time on getting that better. They just realized Jane still has at-least a few weeks before they’re going to talk about taking her breathing tube out. So for the immediate future, they have her on pretty strong breathing support, and are really playing a big balancing game between her oxygen levels and blood quality.
4. From a feeds perspective, wow. She’s a mess. This runs hand-in-hand with her liver problem. They had to take her off feeds (baby formula) because she’s not metabolizing proteins, and it’s building up ammonia in her blood–fasting. Her other liver problem of not processing and removing bilirubin doesn’t harm the body, just indicates liver dysfunction. High ammonia, on the other hand, is very dangerous to her body, brain in particular. It can cause sleepiness, tremors (which got pretty bad yesterday), confusion, brain damage, coma, and ….so let’s just hope her ammonia can get in check. Her feeds are a risk/rewards situation. As it is, food is causing her liver problems. But her liver isn’t processing her feeds. In the end, the doctors just said that her liver is a HUGH QUESTION MARK.
So we just had to ask if we are we running out of options. We’ve asked this before when we feel like she’s getting worse, and they’ve told us before confidently that there’s still so much we can do. When we asked this same question this time, the doctor paused, and said, there’s still some more we can do. That was a far cry from their confident responses before.
On a good note, Jane’s health has improved big-time since I came back. She really missed her papa, seriously. No joke, I came back, and there are tiny little improvements. YAY!!
On another note, regarding transport back to CHOC from Stanford, our insurance considers it “elective” transportation, which is not covered. And at $68,000 that’s a steep price for a plane ride. BUT good news, the director of the insurance company approved it, if/when they decide to move her back. They aren’t even considering moving back until Jane is legitimately stable. My guess is 3 weeks at best.
I’m just glad to be back home.
On my way out to the car, look who parked right next to me!
Please pray tons. Janes looking into the light.
At 4pm I woke up to some nervous faces, a few nurses were in Jane’s room working frantically. A few nurses turned into a dozen doctors & nurses very fast, and we were soon at rock-bottom, with Jane at rock-bottom.
A few minutes prior (while I was sleeping), Elisabeth was watching the nurse suction out Jane’s mouth and reposition Jane’s cute little swollen little 4lb body, which helps getting rid of the fluids. Swelling in infants is bad. What happened next nobody will ever know, but the doctors believe that 1) Jane’s breathing tube got slightly removed, or 2) Jane’s breathing tube got plugged by something, maybe secretion.
Since Jane is extremely sensitive, any little problem can turn catastrophic. We got to watch Jane’s heart rate drop, then drop more, and more, and more, until it couldn’t drop any more–she had no pulse. Jane’s heart stopped pumping. Elisabeth looked at me and said, “that’s it”.
With Elisabeth in my arms, I reminded her that Jane is our miracle baby; God has more in His plans for our baby.
We were both numb from it all, our emotions can only take so much. We’ve experienced horrible events like this several times over the past 5 weeks, but never THIS BAD. We both stood there in awe, not believing what was happening, we weren’t even crying. Just 1 week ago I watched and listened to a crying mother slowly lose her son in the room next door to us– deja-vu.
Shortly after, her heart again started to beat on its own, while the doctors kept with the CPR and manually injected oxygen into her lungs. Her heart rate hovered in the low 20’s for about 20 minutes. They weren’t able to get her heart rate up, no matter what they tried. By Epinephrine (adrenaline) dose #5, there’s just no reason to think that a 6th dose will get her heart beating faster. For babies, if by 2 or so doses the heart hasn’t responded, any more doses have historically shown to not be of any more benefit. The head doctor told us she’s probably not going to recover. So we’re still just as numb as can be. Elisabeth just asked him to get back to work, don’t give up. He came to the point twice just asking out loud, “Does anybody have any ideas?!” Shortly after his 2nd plea, the doctor told us to bring in our family and say our last good-byes to Jane. We didn’t know what to think. “Not now” is all we knew. Since she did have a pulse, though small, we felt encouraged that it can possibly go up. So we asked him if he’s sure she won’t recover. He said he’s sure. I said 100% sure? Then he clearly stated, “I’m 100% sure that she will not recover from this, her heart hasn’t responded to the “epi”, and it won’t now.” And he mentioned that he doesn’t want to keep doing CPR and make her suffer more from the constant compressions. We decided to tell him to not to worry about us, and just get back to work.
Not 2 minutes passed, and her heart rate went up to 27, then back to 23, and bounced back and forth. Then it went all the way up to 35, then 37, 45, and stayed around there. We were getting excited, still scared as can be, because Jane can’t sustain life at 45 bpm, needing CPR forever. Then it went to 50, 70, 90, and hung around the 90’s for a few minutes.
Elisabeth prayed with Luba earlier today, telling God that today is the day for a miracle. She had no idea that she was speaking the truth.
100, 120, and comfortably at 130 the rest of the day, a normal rate for infants.
Jane decided that she wasn’t ready to die.
There’s more details, but I’m done thinking for the night. Over the next 48 hours, the main concern is to reduce possibility of brain damage as a result of today’s event. They’re also very concerned with her other organs, since she went so long with very little blood throughout her body, assuming that for-sure there IS damage, they just need time to see the extent. We disagree with them.
Without getting in to too much details today because we’re so exhausted, we do give glory to God, for coming through in the last minute. Sometimes He seems like a procrastinator.
12 hours later and Jane appears to be recovering well. One of the major concerns of the Dr yesterday was that Jane had way too much CO2 (carbon dioxide) build up in her body and he wasnt sure if the machines would be able to support her to blow off that CO2. Sure thing, within hours, they were already weening her from her ventilator settings. In fact, one of the docs came in just now to make more changes to her ventilator because she was blowing off too much CO2, she actually was in a deficit and they needed to keep some on board. Another thing they did yesterday was to switch the type of ventilator Jane was on. They put her on a machine that shakes her lungs and moves them really fast so that it gets rid of the CO2. Some time soon they will probably transition her back to the conventional ventilator. Another number that the docs follow closely is her lactate level. Lactate is a good indication of how her oxygen is absorbing in her tissues. That number was extremely high yesterday and needed to come down. Dr. Zebrack, our doctor for today, said all she wanted was to come back to day shift with a lactate less than 5. Good for her because Jane’s lactate level is already within normal range at 2. In addition to the trauma from CPR it is expected that her kidney and liver function will worsen the next few days and then hopefully start to make a come back within 48 hours or so. She cleared her lactate levels well and so the doc expects that she will be able to recover and bring those high numbers back down, too.
Overall, Jane is paralyzed (intentionally by a paralytic drug) and in a deep sleep. We all want her calm and sedated. She is very swollen, which is to be expected, but that should come down in the next few days. Following CPR (and during) all precautions were taken to prevent brain damage. Some of the things they do are place a bag of ice on her head, keep her sodium levels high and keep her temperature cooler than normal, ~34 degrees celsius. All of this research is relatively new, but they do all they can for safety.
One of the cutest memories of yesterday is that I kept looking over at Jane and there she was just wiggling her left foot. I kept hearing the doc say,”another dose of Vec.” (vec is the paralytic drug. He was basing the dosage off of her movement) That Jane….she was just letting us know that she is still with it and not ready to go. As heaven and earth is my witness….ALL will give glory to God!!!
Jane, Jane, Jane…..isn’t she something? Well, she seems to be recovering nicely. Janes kidney and liver numbers are back to her baseline prior cardiac arrest and they continue to improve. Her swelling is going down, as well. One of her set backs is that her lungs are a bit more stiff. This is due to leaky capillaries and fluid build up. This should continue to improve as she becomes less swollen. From a cardiac perspective her heart still looks good.
The overall plan is to give Jane time to recover from another major event and just give her time. The great news is that Jane won’t remember any of this. But what she will know is how big her God is!!!
Click on the link to hear the song created for Jane by her Ts. Piklz
So about 6:30am I woke up with an anxious feeling that I needed to call the hospital right away. When I called I was told that the nurse was busy…..hmmmm that seemed weird. (usually at that time the nurses are wrapping up for the day and settling out) I called back 15 minutes later and was told Jane had just had another episode of bradycardia and de-satting. About the same time that Jane was having her episode the dr walked by her room. Wow- talk about perfect timing!!
The Dr and nurses were all impressed and amazed at my timing. I don’t know what to say about that except… Wow, that was really neat!