One Month

As of today Daniel and I have been in Palo Alto for one month. I haven’t been home for 6 weeks; this is by far the longest vacation I’ve been on (and I can’t say it’s been a fun one, adventurous, but not fun). 

Jane had a pretty decent night. She dropped her sats a couple of times but with re-positioning of her tube she was fine. She is so sensitive!! So far this morning she has been doing well. We have started her on a daily dose of Ativan to take the edge off and she has responded well. She is no longer on diuretics and is still peeing well. Her lungs continue to need time to recover but are making slight improvements. Her liver and kidney numbers have become elevated over the last 2 days. We think it is due to starting her on TPN but that is one of those things that we have to find the right balance between. She needs nutrition because she is malnourished and can’t tolerate food, but when we give her TPN it is rough on her liver. So…. do we let the liver suffer a little while we get her stronger?? These are the things the docs have to figure out and weigh the risks and benefits. The next issue on the table is her high blood pressure. Her tiny, cute body won’t be able to tolerate a high blood pressure for long so she will have to get that treated soon. A high blood pressure causes the heart to become enlarged over time and takes a toll on the body. 

We have come to realize that every organ in Jane’s body, with the exception of the appendix, has been affected. (we should probably just remove it before it becomes a problem, haha) This is to be expected given that the heart is the primary muscle that controls the body and has an effect on all the body systems. Isn’t God amazing….how this coincides with scripture so perfectly!! I can’t handle how perfect God has created life. He is remarkable! It boggles me to know that their are unbelievers walking this earth. Our bodies are so perfectly and intricately put together with our physical (and spiritual) heart at the center of it all…wow, wow, wow!!! In order for us to have life everything in the body has to be working perfectly and in unison: the heart pumps blood to the body, the blood carries all of the nutrients to feed the body and carries all of the toxins to the organs that excrete the toxins, the blood supplies oxygen to the lungs, and in the background the brain is telling every organ and muscle how to respond and I can go on and on—its perfectly amazing! The team continues to be amazed at how Jane is doing. One of the NP’s told me that Jane is remarkable given everything that she has gone through. I think so, too :)

Progress

Elisabeth has been doing most of the posts lately, since I’ve been spending most of my computer time doing work stuff. I’m glad to be doing an update this morning.

We had our weekly meeting yesterday afternoon with the head cardiologist, very caring and informative guy, actually a stellar guy. Along with our surgeon, he is a transplant from the world’s best pediatric cardiology center, Boston Children’s Hospital. We have an incredible staff.

There were several issues that we talked about with the cardiologist. The main points are what we’ve basically been concerned about over the last week or two:

1) her liver is still a HUGE question mark, they don’t know how well it will function when put to the test. Two weeks ago when they really gave her liver some work to do, fats and sugars from mama’s breast milk were too complex and difficult to metabolize, so Jane just pooped them out without gettin any nutrition from the milk. They put an end to that real quick, and gave her a formula alternative. One day when they try out mama’s milk again, how will it perform? That’s part of the huge question. In the meantime, she’s on feeds that are actually making her liver worse! But bad food is better than no food. Nonetheless, her nutrition is of utmost importance right now. Lower down on her list are liver and kidney function. So they are goin to keep feedin her and will suffer the consequences later.

2) Jane has passed the big test of heart surgery. They’re reasonably encouraged at her ability to adapt to her new plumbing inside. Her other organs are still recovering from that trauma though. Ultimately, the big concern right now is for the machines she’s hooked up to; technology just isn’t flawless. Jane has had 3-4 episodes this week, all associated with the her breathing tube. If only she can get rid of that dang tube, she’d be so much more comfortable. We naturally cough as a response to the junk in our windpipe (trachea), and because of the tube, Jane doesn’t have that luxury. So the respiratory therapists have to go in and suck out all the secretions, and boy does she HATE it. When they go in to suction her, her heart rate drops, pressure rises, and oxygen saturation drops. Liz and I have similar symptoms when we watch it. Now, if they took out her breathing tube, she wouldn’t be able to breathe, because her lungs aren’t quite strong enough. So her breathing tube is a necessary evil right now. Every night we pray for her lungs to improve so that we can get that breathing tube out– kinda for her benefit, but mostly so that we can see her face hiding behind all that tape and tubing. We’ve only seen her face twice. And man, it’s breathtaking. Cosmo is asking to get her on the cover.

I’m going to pat myself on the back right now. The nurses were ready to give Jane some morphine to calm her down, because they wanted to do some work on her (clean lines, change diaper, check IVs, etc). I said wait 5 minutes, I’ll calm her down, then you can go in and do your thing slowly and quietly. All work is done, and she’s happy, staring at her mama right now.

Tomorrow is the big day for Jane’s hubby, we’ll definitely be there with them (in spirit) as they dedicate their baby to God.

Update

Jane had a huge event over the last couple days: she’s been boring. So mama and papa have had the best day yesterday in a month. The doctor told us in rounds today that it’s an event when Jane’s uneventful. This is our little sigh of relief. Not to say that everything is a breeze now, she’s in the ICU cuz she needs to be. BUT she’s alive, somewhat stable, and so ADORABLE! The nurse agreed with us that even her x-rays are cute, with her tiny little bones, stubby little shoulders, and no neck!

Jane from a clinical standpoint can be very misleading. She’s stable right now, but we were told the other day that she’s still at high-risk for another cardiac arrest and many other complications, and she will be at risk for quite some time. Right now, though, she’s a trooper.

Her liver and kidneys are both question marks, with the former a big concern. They have been improving this week, after thought that they may have been severely damaged from lack of blood on Saturday. Post-code, her numbers have improved–until TPN. TPN is her main food source this week, fed intravenous to bypass her gut. This food actually progresses her liver damage. Not a good thing, but Jane still needs to get fed somehow. Her gut suffered the most damage from Saturday’s event; blood naturally knows which organs are most important. For example, her brain is more important than her intestines. So doctors were worried she can’t digest food. A couple days ago, they introduced a tiny amount of predigested formula to see if she can take it, with hopes she can eventually get off TPN completely. That went okay, Jane’s digesting the food, and they’ve been slightly increasing her formula feeds. Tomorrow the doctors think they can take Jane off TPN completely. Next step is to get her fat, and slowly introduce her to mama’s breast milk. First time around with mbm didn’t work so good; Jane wasn’t able to digest the fats and sugars.

Respiration is another concern, as her breathing tube seems like a huge risk, but she needs it until her lungs are strong enough to breathe on her own. Doctors started giving her caffeine, so that when they have to clean out her tube, she can keep her heart rate from dropping like it has been. That is working wonders, she just loves caffeine. They hope to be able to start weaning down on her respirator this week, but that’s still undetermined.

Goodbye Stanford, for now!

I’m about to get on the road right now on my way back to orange county. Assuming that there won’t be any complications between now and noon, the girls will be getting on an ambulance jet. CHOC has a bed waiting for Jane.

UPDATE 2pm girls are on way to airport!

Flying High

Jane and I had a very nice flight. She slept the entire time and I stared at her vital signs until we landed. She did so well! Our ambulance ride from John Wayne went smooth, as well. As soon as we got out of the ambulance at CHOC Jane decided to drop her heart rate and blood pressure. At the same time the amount of oxygen in the tanks on her gurney were running low…. Ahhhhhhh!!!! Her flight nurse and respiratory therapist helped Jane recover and we wheeled her right up to the NICU. I guess Jane was just trying to say, I’m baaaack! She sent my heart racing….we were way to close for something crazy to happen.

She is all settled in and resting now. The staff here at CHOC was expecting us today so they called Ronnie Mac in advance and got us a room. I am overwhelmed with joy to have arrived safely!! That plane ride was nothing glamorous. Thank God for a safe arrival…and to be back home. The plan is to keep Jane comfortable for the night and then work on a plan of attack tomorrow.

Last Night

Jane is just happy to be alive. Last night we left late evening cuz Jane was sleeping happily, sharing her nurse with another baby. Got a call half-hour later, saying she was having complications.

We arrived to a dozen people working on a coded baby, Jane. She had a really slow heart rate for approx 45 minutes and intermittent CPR. It took a long time, but she came around somewhat. She’s still on the meds to keep her heart rate up. So all was clear, not great, but clear.

At 4am, Mama and I were waiting thru the night, and once again Jane was having difficulties. She couldn’t quite get her lungs working up to par, so her blood had only a fraction of oxygen needed. After another half hour, Jane pulled thru once again. This second episode last night wasn’t considered a “code”, my guess I that everyone was already in the room while it was escalating.

Now, Jane has 2 nurses of her own today.

And we still haven’t got any sleep.

Safety First

Jane is in very critical condition today. The team of docs have been in here room all morning and afternoon making sure they are keeping her comfortable and safe while they work on stabilizing her. The doc told us this morning that safety is the number one concern right now. Once she becomes stable and recovers from her code in a few days then they will begin to make further plans for her care. But, right now the focus is to treat her symptons and keep her vitals stable so that her body is able to recover. In the meantime, Jane’s TWO nurses have been working non-stop today. During rounds the Dr. kept hammering out questions for all of the team….poor girls were so nervous and stumbling over all of their answers. Even the fellow was questioning her knowledge. BUT- I’m glad they are focused and serious about taking care of my daughter.

The CHOC team has welcomed us back “home”. The docs are ready to dive into her records and fight this out with us and with Jane. We’ve gotten so many complements from all of the staff of how involved and knowledgeable we are about Jane’s history and condition. In fact, one of the docs said I gave him more information about Jane in 5 minutes than he would have received if he called the staff over at Stanford. I’m so proud to be Jane’s mom!!

Trauma

From Monday night to Tuesday afternoon, Jane had 5 life-threatening emergency events, 2 of which were “codes” announced over hospital intercoms. These codes were followed seconds after by trauma specialists and support staff flooding Jane’s room to revive her. Yesterday afternoon’s code was as bad as it gets, and surviving. 

With tons of indicators, tests, x-rays, symptoms, and episodes, doctors strongly believe that Jane has an infection, which is often fatal in the ICU. 

What happens now is be as gentle as possible to Jane and hope she powers thru this infection faster than it breaks her down.

She had an “episode” every 4-5 hours. It’s been 17 hours since her last one, and there’s very little that can be done if she has another one, since she’s maxed out on the medications used to help her get thru the episodes.

“If people had 1% of the will that Jane has to live, the world would be a better place.” -The world-class doctor that told us 12 hours ago that Jane wouldn’t make it thru the night. 

Update

For starters we couldnt have asked for a better doctor here at CHOC. Dr. Cleary is on top of his game. He is no BS kind of guy—precise, focused, informative, careful, exact…definitely a Godsend at this point of time. He is so precise that he was making sure the nurses are drawing their blood gases consistently. Drawing blood gases is something nurses do second nature, but he is so exact that he wants to make sure all draws are exact so that they dont treat something based on the wrong lab numbers.

After rounds this morning it was decided that we will continue to make forward steps as Jane allows. Yesterday Jane was put on NO (nitric oxide), a gas that decreases the resistance in the lungs. She was at 80ppm (parts per million)—a dose that the nurse and respiratory therapist have NEVER seen before all their time working here. The nurse said that when she gave report to the night nurse on Jane and told her she was on NO of 80 the nurse questioned her and said, Did I hear you correctly, 80??? Since then we have been able to come down to 20ppm which is the normal therapeutic dose used. So far Jane is tolerating the move. Her chest xray this morning shows a very small improvement in her lungs from yesterdays xray. Overall, there arent very big plans for today. Jane is so critical that any big move can cause her to fall in either direction so the team may make a wean on her life support and then give her several hours to see if she tolerates it. Slow……………..and…………….. steady…………..

The overall consensus this morning is that they dont know what the exact issue is with Jane. They arent even 100% sure that it is an infection causing her to have major lung issues now. What they DO know is that Jane has a very critical and rare heart condition. All of her other complications are made worse because she has such a sensitive heart. If a healthy baby had an infection in her lungs they would start antibiotics and most likely see improvements in the next 24-48 hours. Not the case with Jane…it takes much longer. If a healthy baby has liver disease they would treat it and see improvement quickly….not the case with Jane. In addition to all of her complications she has this underlying heart condition that adds to the mystery and severity.

We have not lost hope….she is the STRONGEST baby I know.