The following posts include a real-time, first-person account of the world through Apollo’s eyes (as interpreted by his father).
Hi, I’m Apollo. I know there aren’t many 3 week old kids that need their own website to keep people up to date on everything I have going on, but I am pretty special. And I have a lot going on.
My dad is going to help keep you updated. He doesn’t sleep, work or exercise much, so he should have plenty of time to get my updates to you.
I have been in the hospital since I was 3 days old. I started with a little fever and some fluid in my lungs. Now I have lots of tubes, wires, and all kinds of crazy gear around me. They had to put me on a machine called “ECMO” so my lungs could rest and heal. ECMO puts oxygen in my blood and circulates it through my body for me. My first week on that was great. Lots of rest and I got rid of some unwanted water weight.
I tried to get better a little too fast though. I should have just rested more because my lungs were still a little fragile. They leaked a little air and the doctors had to go in and get it out. Unfortunately, my ECMO uses lots of blood thinners and I had some pretty bad bleeding when they did. They gave me some more fluids and stopped the bleeding.
Putting all those fluids on again put lots of pressure on my little belly though, and the doctors had to help me with that. They put an “abdominal silo” on my tummy to take care of that. I won’t get into many details, but I am going to have a pretty cool scar to impress the ladies in preschool.
I don’t want to bore you with all the details, but let me just assure you that I am pretty lucky to be here dictating this background. At the risk of plagarizing Kurt Warner, I really just want to thank God for watching over me through all of these procedures. I know that my mommy and daddy have been praying with me every day. They also tell me about all of my family and friends that have come by to visit me, and the calls and texts they get from people sending their prayers and thoughts.
I appreciate all of it. Even when I am not really in the mood to have visitors, I know it means a lot to mom and dad to have people reach out to them. They have gotten so much help from people taking care of my big sister Story, and from people bringing them food and all kinds of other things to help them stay by my side as much as possible. I also appreciate the Ronald McDonald House that is letting my family stay next door to the hospital. I doubt my dad ever knew what a great charity that was when he had disposable income.
I am going to wrap up before I get too far off track. I will try to keep you up to date on what the doctors have planned for me every day, and how conditions are here at the hospital. I do like all the attention, so please keep praying for me to make a full and quick recovery. I like to think I am pretty tough, but I can’t do this all alone. The support from God, family, friends, and the staff here at Phoenix Children’s Hospital has to keep doing their part to get me home to my big sister as soon as possible.
Thanks for everything. Looking forward to meeting all of you in a more personal setting.
(dictated not read)
THURSDAY, MAY 28, 2009 4:19 PM, MST
I have been waiting for almost two weeks to have my mouth and nose cleaned up. When I was bleeding back on that second Saturday some blood came up and out of my nose and mouth. They didn’t want to mess with it for awhile so I look a little bit like a below average heavyweight boxer coming out for the 12th round.
Anyway, we keep expecting them to finally clean me up any day. We finally scheduled that for tomorrow (Friday) at 11:30 am. I can’t wait for my mommy to kiss me on my lips again.
They were also going to close up my abdominal silo that day, but they just decided this morning to hold off on that. They say I am healthy enough to have it closed, but I have had a little problem with bleeding in my left leg this week. I had an IV that came out last week and my leg keeps bleeding in that spot. They stop in fast and give me some more blood if I need it, but with all these blood thinners it hasn’t clotted enough to stop for good.
I think they will close up my silo once I am off ECMO, or at least when they are more comfortable that it won’t cause any bleeding. I’m not in a hurry. It doesn’t bother me and I try to encourage the doctors to err on the side of caution.
Please keep me in your prayers. Hopefully my dad will learn how to upload a picture soon. Once my mouth is clean maybe my mom will even let him use a current photo. In the meantime, the best description I have heard is that I look like my dad and Brad Pitt (I guess they look very similar).
FRIDAY, MAY 29, 2009 4:30 PM, MST
Handsome and popular. 3 weeks old and I already have two big steps on my old man. It is great to see that over 50 people have checked in on me. Thanks for all your thoughts and prayers.
They cleaned my mouth today. My sister gets her face scrubbed 15 times a day, but for some reason my mom and dad let me sit with a mouthful of blood for almost 2 weeks. They finally got an ENT to come in and clean me up. I think everyone had forgotten what a handsome devil I am.
Everything went very smoothly and I didn’t have any new bleeding. Even my leg has stopped bleeding for over 24 hours, so I am really happy and looking forward to a peaceful weekend. My dad promised me that my Saturdays were going to be better and better from now on. I could still use all your prayers over the weekend though.
I would send a picture of my pretty face, but may dad doesn’t have IT support and my mom still won’t let anyone take pictures of me. I think she is afraid they will get sold to the tabloids.
I don’t expect much to happen over the weekend other than more rest, but I will have my dad update you anyway. It keeps him busy and makes him feel useful.
SATURDAY, MAY 30, 2009 5:29 PM, MST
Weekends are quiet here at PCH so I thought I would give all you ladies out there a little thrill. Got the old man to upload a picture of me from back in the day (Day 1 that is). I wasn’t lying about my good looks, was I?
Not much news from the hospital today. They did put a new tube in my mouth today. This is a good one though because they are going to start giving me some breast milk. I’ll get about 1 cc per hour for a couple days to see how my tummy handles it. I haven’t eaten real food for awhile, so I am looking forward to this.
This has been the best Saturday of my life by far. Mom is always rubbing lotion on me and singing to me. Dad read me Yertle the Turtle for the first time today too. There is a good message in that one. I recommend it highly, especially for anyone in powerful positions that might be disregarding all the little people out there who helped them get where they are.
Have a great weekend. I’ll keep you posted on how my first hospital meal goes.
SUNDAY, MAY 31, 2009 7:45 PM, MST
I had a really great day today. Not much to report. I pretty much laid in one place all day and did nothing. My dad said it was ironic that Uncle Al came to see me today because that is what he does every Sunday too. The rest is good for my little lungs to heal and recover.
I started getting some breast milk yesterday and liked it so much that they doubled up on it today. 2 milliliters and hour doesn’t sound like much, but it adds up when you haven’t eaten in weeks.
I have to run now. My big sister is yelling at my dad about these ducks on the screen. I can see who is in charge around here.
MONDAY, JUNE 1, 2009 7:10 PM, MST
Big day today. They had to give me a new ECMO circuit today. Apparently I am a little hard on the equipment. It may not sound like much, but changing the ECMO circuit is sort of like a pit stop at the Indianapolis 500, except that the tires are pumps and filters that give me oxygen and the fuel is A+ blood. I have gotten pretty attached to oxygenated blood, so I am grateful to have a good pit crew. They did a great job today and got me back on the road to recovery.
While I am on the subject, I have to say that I get the feeling that most people take the responsibility of giving blood too lightly. With a few transfusions under my belt and a daily boost of extra blood to keep my circuit going, I am clearly going to be a net borrower from the Blood Bank in my lifetime no matter how often I give blood when I am old enough.
I think most people are more fortunate on that front than I am. I sure am grateful to all the anonymous people out there who have been donating the blood that has been keeping me alive all these weeks. I know my mom and dad have a new appreciation for how important it is to give blood regularly.
Am I being subtle enough?
Now that the circuit change is done, I am going to rest and relax some more. My mom has really done a great job healing up my fingers and toes from some circulation problems I had awhile back. My left toes are still not quite there, but I think all the rest are almost back to normal.
The breast milk has been great the past couple of days too. Not to gross anyone out, but my stomach handled it just fine and I added a diaper change to the pit stop today.
I think that is probably more than enough detail for today. I had an electrocardiogram (how about that vocabulary for a baby?) today too, but I will update you on the results tomorrow. We are hoping that my ductis is closed, or at least closed enough that the doctors won’t have to mess with it until I get off my ECMO run. Your prayers for that are appreciated.
TUESDAY, JUNE 2, 2009 10:52 PM, MST
I don’t know how, but the nurses are on to me. They found this site and I think they may be trying to intercept my messages. They all really like me and give me blankets and stuffed animals. Some even make signs for me and decorate my room. All of that is great, except that I am paranoid that if they like me too much they might leave me on this machine and never let me leave the hospital (wasn’t Kathy Bates a nurse in that James Caan movie?).
Had another good day today. They took off about 130 cc’s more than they gave me during the day shift. That’s what the next few days are all about — dropping some fluids to get to my fighting weight.
My echocardiogram came back today too. My doctor says there is a small left to right shunting or something, but that it isn’t impacting my ECMO flows and there is nothing that needs to be done about it. It is a relief to hear that. Didn’t want to scare you yesterday, but I was a little afraid of needing even a minor cardiac procedure with all these blood thinners I am on. Thankfully we don’t have to discuss that again.
Did I mention that I pooped again today? I don’t think my dad emphasized enough yesterday what a big deal it was that I pooped yesterday, and especially that my mom got to change my diaper. I hope my mom told him at least three times what a dope he was for not shouting that from the roof of the hospital.
Seriously, though, my mom has really become a qualified nurse. She does most of my wound care on my hands and feet, and she watches everyone who comes into the room to make sure they are doing their job. I hope she knows how much I appreciate everything she does for me.
I expect the next few posts to be pretty short while I rest up, drop fluids, and heal my lungs some more. The doctors are talking about a bronchoscapy or something next week. Dad better get on that and start doing some research so I understand what they are planning next.
WEDNESDAY, JUNE 3, 2009 10:10 PM, MST
I hit a milestone today. One month old. The first one is the toughest, right? Even though I haven’t experienced all of the “normal” things an infant does in their first month, I have been networking with some very talented medical professionals and am building a strong rolodex that should serve me well in the future.
Everyone around me was pretty excited today to see my X-ray. For the past couple of weeks my lungs have been what they call “whiteout” on the X-rays. Today my right lung clearly showed some black spots. That means they are slowly starting to clear, and that my lungs are improving.
Dad told everyone that I decided to start healing myself because the doctors were taking too long. I hope they just throw him out when they finally get sick of him. There’s no reason for them to take it out on me.
I can’t access the hospital network to upload a picture of my X-ray, but I did take a picture of the window to my room. The nurses decorated it to celebrate my 1 month birthday. I am going to get serious about healing and maybe I can celebrate the 4th of July at home.
I’ll keep you posted on fluid status and how the lungs are coming the next few days. We got another 300 cc’s today so I am starting to look a little more svelt.
THURSDAY, JUNE 4, 2009 11:04 PM, MST
Sorry for the late post today. My dad promised to watch my first NBA Finals game with me, plus he keeps typing my posts and then loses them. He isn’t quite incompotent enough for me to fire him, but we are going to have a talk.
Today was a bit of a roller coaster. Started on a down note when my x-ray was a whiteout again. They say its normal and not to get upset by it, but I know mom and dad were hoping to see more of my lungs. Tomorrow is another day though.
The upside for today was that they got 600 ml of fluid out of me over 24 hours. Think about a 2 liter bottle of Coke. I dropped one-third of one of those in a day. That wouldn’t be a big deal, except that I ONLY WEIGH 8 POUNDS. Think about that for a minute.
The worst part of the day was that I threw up. Twice. Talk about humiliating. They stopped giving me breast milk in case I had too much of that, but I can tell you right now that it was because my mom and dad tried to soothe me by rubbing my hand and whispering to me every time I woke up. Throwing up was my hint that the extra shots of morphine are a little more soothing right now. Ask anyone who has heard my dad try to be gentle and kind.
They can wean me off the juice once they put my stomach back together and sew me up. Until then, load me up!
One last positive note was that they removed both of the IV lines in my feet. They had been concerned about bleeding before, but I came through like a champ. Now I only have one foreign object sticking out of me below my beltline. I don’t like to talk about that one.
I need to run. They are messing with my breathing tubes too stop my snoring.
FRIDAY, JUNE 5, 2009 9:44 PM, MST
What did I tell you? I said tomorrow is another day, and here we are with a little fresh air peeking out of my right lung today. You could even see a faint bit of the airway leading to my left lung. I might be psychic. Or, as my mom would say, I may have “ESPN”.
I also had a visit from my pulmonologist. That’s right, I called him “my” pulmonologist. He explained the bronchoscopy to mom and dad. They are going through my nose down to the lungs to check out how I am healing, and hopefully to clear out any little obstructions in there. We are planning for Monday or Tuesday, but I think Monday will be the day.
That gives me a couple of days to rest and maybe clear my lungs on my own a little more. The procedure costs as much regardless of how bad they are, but if I can make it easier I’ll try.
One parting thoght for anyone that happens to visit me or another kid in the hospital: A little glance into the rooms as you walk down the hall is natural. Staring into the rooms, stopping and pointing, and saying “Oh, look at that little baby” could make the people in the room feel a little uncomfortable or even upset.
I know you probably don’t need a 1 month old kid lecturing you on hospital etiquette, so we’ll call this a reminder.
Have a great night. Please keep me in your prayers again for a wonderful Saturday.
SATURDAY, JUNE 6, 2009 10:38 PM, MST
One month. That’s how long I have been in this hospital. Even more amazing, I am about to pass 700 hours on ECMO. I am expecting to break records during my life, but I was hoping they would be most major tennis championships, most downhill skiing Olympic gold medals, or something like that. I do not want the record for longest ECMO run.
That’s why I decided to take matters into my own hands today (you know what they say about wanting something done right….). I focused hard last night and cleared a little more space in my lungs so you can clearly see them both on my X-Ray today.
Now that I got the ball rolling, the doctors are helping out by re-positioning me more, suctioning me more, and even giving me some medicine straight into the lungs to loosen some of the stuff down there. Now I just have to keep getting it out. They say they can even hear faint breathing sounds tonight.
I am going to focus on some more clearing of my lungs for the next day or two, and then they can try to clean out those “hard to reach areas” in my bronchoscopy on Monday.
Thanks for thinking about me and praying for me again today. I am still superstitious and get nervous about Saturdays. This one was great.
SUNDAY, JUNE 7, 2009 11:22 PM, MST
Sorry I am running late again. You would be amazed how messed up your schedule is when you take large doses of morphine and other drugs. But I have heard so many people thanking me for keeping them updated every day that I will fight sleep for a few more minutes. Besides, I have a lot to tell you today.
I have been hearing how tough and strong I am for so many weeks. Today I figured out that I must get that from my mom because I could see my dad choking up when the doctors starting talking about weaning me off of my ECMO machine. I know he was holding back tears, and I know he let loose with some crying as soon as the doctors and nurses left.
I’ll have to deal with toughening him up later. There is way too much going on now with this weaning stuff. All of a sudden they say my lungs look so much better that they don’t want to do the bronchoscopy tomorrow. I’m all for one less procedure, and I’m sure my insurance company will agree with me there (although I bet Infectious Diseases finds some way to charge me still).
Now they are tinkering with my ventilator to make my lungs do some work on their own. Plus, they stopped giving me Dopamine, started reducing the flows on the ECMO circuit, and even stopped my hemodialysis. That means I need to start peeing on my own. Hopefully tonight I can get that done.
I think the next several days are going to be hectic. When they mess with all these things it is going to alter the balance they have been keeping for me and they are going to have to adjust things to get me balanced again. We have a long way to go, but before today nobody had ever even mentioned that I might be able to come off the machine at all. I thought I might be taking it to college with me.
I am starting to feel the morphine kicking in again (I hope they don’t turn that off anytime soon), so I am going to sign off. I’m not out of the woods yet, so please keep praying for me. I’ll be right here dreaming of rivers, waterfalls, relaxing in the pool…
MONDAY, JUNE 8, 2009 10:25 PM, MST
To: All PCH Doctors and Nurses
From: Apollo Lamb
RE: Who’s In Charge
It has come to my attention that during your routine caregiving activities some of you may have misinterpreted my improving condition as a signal that I wanted to begin weaning from my ECMO circuit.
To avoid confusion, I am issuing this statement to remind you that timing for my recovery is at my sole direction. Accordingly, I instituted the following changes today:
1. Re-activation of my Dopamine drip;
2. Increase of ECMO flows back to yesterday’s levels; and
3. Re-activation of my dialysis.
I hope you don’t view these changes as setbacks since I am only going back to yesterday’s settings. However, I am quite comfortable on my circuit and am not in a hurry to do everything on my own.
I will consider slow weaning activities over the next few days. However, the pace of change will continue to be driven by me. Now that we are back to my comfortable settings, I am resting peacefully and trying to focus my energy on improving my lungs.
Thank you in advance for remembering the chain of command when attempting additional weaning this week. Further attempts to rush me to recovery without my prior consent are not appreciated.
Apollo Lamb (dictated not read)
TUESDAY, JUNE 9, 2009 11:12 PM, MST
I am filling in for Apollo today. He is resting and will hopefully feel like writing tomorrow.
Being a baby in the hospital is like a roller coaster. You have good days, bad days, and consent form days. I feel for any parent that ever has to sign a consent form to have a major procedure done on your child. It is one of the most painful things I have ever done, and I have done it four times now.
Apollo found out today that he has an infection. With a baby in his condition, any infection is serious. Right now, we believe and hope that it is just in his lungs (possibly pneumonia). While we don’t know the specific bacteria or fungus, he is on 2 antibiotics and one antifungal medication.
He also had his abdominal silo replaced and the site washed with a second antifungal medication this afternoon. The procedure went well. They are testing fluid from that site to see if there is additional infection there.
We won’t know more about how well our medicine is fighting the infection for a few days. In the meantime, Apollo’s blood pressure and other vitals were very strong after the procedure so we are taking advantage of our time to take off fluid to reduce his size.
Christa and I are totally confident that Apollo can make a full recovery with the attention he is getting from the great staff here, and with the love and support from God and all of you. He is so much stronger than anyone I have ever seen, and seems to come out of the major procedures even stronger than he goes into them. Being with him and watching him this month has been the most inspirational experience of my life.
Thanks for your continued prayers. They mean a great deal to us.
WEDNESDAY, JUNE 10, 2009 7:30 PM, MST
I may not be better than ever, but I am back today. I am still battling a very serious infection, but I am feeling better today and have really surprised some of the skeptics here over the course of last night and today with my progress.
If it wasn’t enough to find out about the infection yesterday, I had to endure the silo change that my dad described to you last night. They gave me a new silo and washed the area around it with some medicine. I am now getting 4 different antibiotics for the infection I have. I have kept my blood pressure and the rest of my vital signs very stable today, and didn’t even need more of my blood pressure medications to do it. I think that is a good sign for me.
To add insult to injury, this morning they decided that I was wearing out my ECMO circuit too fast, probably becasue of all the extra blood products I am getting to fight the infection. So they decided to change my circuit today.
I think I explained this before when they changed my last one 9 days ago (pit crew, hurry up I need oxygen in my blood, etc.). Anyway, they did it this afternoon. The last two times they did this (I wish that was a joke), it set me back a day, added about 500 cc’s of fluid to me, and scared the crap out of my parents.
This time I came out of it with barely any change in my status, and only 125 cc’s of extra fluid that will probably be off me again by the time you read this. It did scare the crap out of my parents again though.
I am resting comfortably and focusing on fighting my infection now. As of this morning my lungs were unchanged from the last couple of days so they seem to be doing well. With my new circuit and improved lungs, I just need to get rid of the excess fluid and get rid of this infection. That is the priority for the next few days.
I still have a long way to go and really need the support and prayers you have been sending me to beat the infection. At least my spirits are up and I felt good enough to get back online to let you know how things are going.
THURSDAY, JUNE 11, 2009 11:42 PM, MST
I really enjoy the “resting and healing” days for the most part, but if my dad reads me “Finding Nemo” one more time I am taking a hostage. It is getting to be ridiculous. I get it. Son is really important to father, father would do anything to help, blah, blah, blah. I don’t care if it is Dwight Howard’s favorite movie.
I’m not sure why my mom even keeps him around. I used to think it was because he was the one spending so much time with the doctors, but she seems to be doing a lot of that now too. That’s probably for the best. I think they are both getting a full medical education, but my mom is still young enough to put it to use. Dad may need a new career, but he better pick something that doesn’t require additional education (or debt).
I don’t have much to update on today. The doctors are fighting the infection as best as they can. It seems like my blood pressure is stable (they just took me off the Epi medication so I am down to just Dopamine again), and my platelet and white blood cell count are better than they were yesterday. I think these things are signs that my body is fighting the infection pretty well.
I still have work to do. They are going to wash and change my silo again tomorrow to try to help fight the infection from above. I don’t like more procedures, but I think this is going to really help get this infection out of me for good. That means I have to wait anxiously again tomorrow for another procedure. They did a great job last time and I have a ton of confidence in this surgeon (we have spent a lot of time together).
I will let you know how the procedure goes and what the update is on this infection. I think we are going to be holding our breath for several days waiting to make sure we got rid of it, so please keep thinking about me.
I apologize if this post was longer than usual. I pooped while I was putting it together and dad need to buy time to make sure he didn’t have to be involved in changing me. I better get used to that.
SATURDAY, JUNE 13, 2009 12:01 AM, MST
Did you have a detention room at school where some of the permanent residents had their own designated space that they got to use for the entire year, decorating it and leaving their things like it was a cube in an office? That’s what my ICU room is like. Some of the other patients go upstairs, come back down, move to different rooms, go to operating rooms, etc. I have been in this same room with the only change being a 30 degree rotation one way or the other. That is for 5 weeks.
I have signs on the wall, a full bookshelf, stuffed animals everywhere, and a picture of my family 12 inches in front of my face. And, of course, my parents sleeping on a couch 5 feet away from me. I even have my first poster up on the wall. A team photo of the 2008 NFC Champion Arizona Cardinals. No autographs yet, but I keep looking for Kurt or Larry to walk by my room so I can grab them. I think the value of those autographs (if I can get catch them) will go up once they win the Super Bowl this year. Dad promised to take me again.
You get used to whatever surroundings you have, including my 300 pound cart with the rotating pump attached to my neck. I guess that’s why I get a little separation anxiety when they start talking about slowly taking it off of me (or is it me off of it?) sometime during the next week or so.
I guess its good news that they believe that the antibiotics are winning the war with the two bacteria strains in my body, and that my blood pressure is allowing me to shed excess fluid now. And my favorite surgeon gave me another new silo today, including a complimentary bowel washing. He was out of “new car” scent so my room (and my bowel) smells like bleach.
They are SSSLLLLOOOWWWLLLYYY turning down the flow on my machine this weekend to see how I tolerate things. I have talked it over with dad and am going to let them gently wean me off the ECMO machine. Once we do that I can get my chest tubes and silo closed for good and work on my lungs without the constant bleeding and infection risks that seem to keep slowing me down.
I’ll let you know how the weaning is going. They promised to do it so slow that I won’t even notice.
Have a great night and weekend. Thanks for the prayers.
SATURDAY, JUNE 13, 2009 11:59 PM, MST
I’m not so sure about this big sister thing. I have been sitting here in this hospital my whole life and suddenly she gets a little fever and now all the attention is on her. I guess I can understand mom and dad being a little on edge, but the nurses — MY NURSES — are asking how little Story is doing.
I can tell you how she is doing since I hear my mom calling to check on her constantly. Her fever is gone, she is eating full meals (with her mouth, not a tube), and she is probably playing with my brand new untouched toys. I bet she is sleeping in my crib.
Meanwhile, for any of the nurses that can pull themselves away from Story’s 1 hour fever saga to stop the beeping on one of my 6 medication pumps, I am doing just fine thanks.
We did have a couple of early morning scares today. First, I had a little bleeding in my neck where the cannula’s for my life support enter my vein and artery. Story’s fever was 101.5.
Then, we took a second x-ray (second for the day that is) and confirmed that I have a very small pneumothorax in my right chest. Mom and dad were both really scared this morning because I had a pretty bad one of these back on May 16th. We really think this time it is a lesser concern, and we are praying that it resolves itself, and that my lung has healed wherever the leak may have been. Story got Tylenol and took an unscheduled nap.
All the indications are that this new development isn’t impeding my progress. They are still slowly reducing the flow on ECMO and easing me into “weaning” mode. I am on board with the slow process the doctor has laid out, so I am consenting to the changes and keeping my blood pressure and other signs strong.
I should also update you on my infection since that was the topic du jour most of the week. They did get positive results on the tests of my stomach fluid and the film on my bowel when they took samples yesterday. However, the bacteria ratings were 2+ Staph and 1+ psuedonomus this time (last time it was 4+ and 3+). The sample was also taken before they washed out the fluid with some strong anti-bacterial bleach. I think Story skipped half a meal. Have you seen how much she eats?
I am not declaring victory over the bacteria, but I am feeling much better about our campaign against it. With a few more days of this kind of progress I will start working on my victory speech.
Anyway, back to really important things, Story seems to be feeling much better. Since it seems to be all about her you may be getting a new Caring Bridge website announcement to update you on her getting back to her normal napping and feeding schedules.
I am only teasing. I love my sister very much and can’t wait to be home watching her play with all my stuff while I try to get out of my mother’s grip.
SUNDAY, JUNE 14, 2009 11:04 PM, MST
I just learned something pretty amazing from the father of one of the other inmates in my cell block. His kid, Caleb, came really close this morning to using my spare ECMO circuit (I already know how to share). Luckily, the doctors got him stabalized and he had a pretty uneventful day after about 5:00 this morning. My dad was up and saw the scramble down the hall. It gave him flashbacks to May 9th.
Anyway, Caleb’s dad was pretty frustrated about all the ups and downs of the healing process. I’ve been there. He said that he really drew a lot of strength from seeing me fighting my battle, and felt positive about Caleb’s prospects from watching my strength.
It is pretty amazing that a little guy like me can have a positive effect on other people in the world, even complete strangers. All I am doing is laying here and focusing on fighting my personal fight, and surviving. I think it is great that I can provide that kind of positive force in the world. How many kids can have that kind of impact at 6 weeks old?
I hope that my little story is helping some others out there too. It is great to see over 1,000 visits to my website. If even one of those has had a positive impact on someone’s life, my time spent talking about myself will have been worth it.
I have lots of time to think about these things as I sit here resting today. They think I don’t know it, but I have heard them come in here a few times to turn down the dial on my machine. I can tell that I am having to do a little more of the work myself. I am just going with the flow. Literally. It has come down from 550 to 380. Now they have it down to about 330. I think they are trying to inch me down to 280 by morning.
I am going to ask the doctor about when they can turn off the ECMO tomorrow. Say an extra prayer for me so I can sprint hard to the finish line. Also, say an extra prayer for Caleb. We are hoping he gets better quickly.
TUESDAY, JUNE 16, 2009 6:40 PM, MST
What? I can’t take one day off? I don’t know what it is like out there in the “real world”, but it must be true that there is nothing to do in the summer in Arizona when my only competition for attention is the Diamondbacks. I am glad everyone missed hearing from me yesterday.
My goal for Monday/Tuesday was to get off ECMO, to be on either a ventilator or oscillator to assist with my breathing, and to get on a regular dialysis machine for fluid replacement.
When I set my goals going forward, I am going to try to be a little more specific about how I get there. The very good news is that I have been off of ECMO since 2:00 this morning, I have been breathing with the help of an oscillator all day, and they are priming the dialysis machine as I type.
As an added bonus, I got to leave my room for the first time in over a month last night at about 1:00. I was looking forward to my first excursion, but didn’t think it would be to go to the operating room for emergency surgery to decannualate me from ECMO.
I think that all the stars were aligned last night because if one of any number of things had gone just a little differently they tell me that we could have had a catastrophic incident. Everything was fine until about 9:00 last night when the slow oozing of blood from my neck became a steady flow.
They were planning to wait until morning to do a trial off and then take the cannulas out. They were going to keep giving me blood to replace the outflow from my dressing, but it accelerated pretty rapidly. All of a sudden they decided that they couldn’t wait and we paraded to the OR with my ECMO circuit in tow (not an easy thing to do).
To put things in perspective, they gave me about 3 liters of blood last night between 9:00 and 1:00. I think my body holds less than 1/2 of a liter in total. You could do the math on that for yourself and I bet you figure out that I am lucky to be here.
The surgery went as well as they could have expected. Luckily, the vascular specialist was the surgeon on site last night. The old saying “ther’s never a great vascular surgeon around when you need one” doesn’t apply for me. Dr. Egan has always been my preferred surgeon for life-saving procedures, but Dr. Lacey did great things for me. He closed up the cannula site, and gave me a new line in my left leg for medication.
I am not one to argue with results, so I guess I can’t complain about getting off of ECMO after exactly 900 hours on the circuit (which is a Phoenix Children’s Hospital, and possibly State of Arizona, record by the way). I can’t even give justice to how traumatic this was for mom and dad. They have been really positive through everything, but I think I better lay off the Houdini acts for awhile. This one was a little more extreme than some of my earlier stunts.
Like I said, if you told me Sunday I would get off ECMO and be getting more stable on the oscillator, I would have been very excited to hear it. I guess I just have a flair for the dramatic.
THURSDAY, JUNE 18, 2009 12:05 AM, MST
Today was all about finding a balance. I hear that my whole life is going to be about finding balance. Dad says it took a long time for him to find a balance between his work life and personal life. He says he finally figured it out when he met my mommy and finally had something in his personal life that he was passionate about. I literally haven’t seen him work a day in my life, so I suspect he is lying about ever working hard.
I, on the other hand, am trying to balance some of the real basics. Carbon dioxide, bicarbonates, potassium, oxygen, blood pressure, epinephrine, dopamine, vessoprassin, fluids in and out, morphine, ketamine, versed, paralytics. The list goes on and on. The good news is that these doctors really seem to have this medicine thing down to a science.
Lots of my levels are still a little too high or a little too low. Much better than yesterday though when there were lots of double arrows next to my chemisty levels. I get lots of attention while we are doing this tweaking. I think we are getting things more stable and that everything will be “copasetic” as my Chinese Malaysian primary physician for the week calls it (at least that’s what I think he called it). He is really sharp and gives us lots of personal attention and explanations for everything. One of my favorites, plus he has a sense of humor (he says I am going to look like him if I don’t get my billirubin level down).
Hopefully the rest of the week will be more of the same. I would like to get the carbon dioxide down, keep the blood pressure up (with less medication for it), get some fluids off, and keep letting my lungs rest and heal. I am hoping to have some boring reports the next few days. Maybe I can get some good hospital gossip to pass along to keep readership levels up.
THURSDAY, JUNE 18, 2009 10:42 PM, MST
Some days it is so tough to put words to what goes on in this little room. I hope I am right that almost nobody reading this can really appreciate how it feels to be on the edge of the abyss teetering back and forth for so long.
Worst of all, after today I am going to have to go through my entire life with my parents holding it over my head that they saved my life. This isn’t one of those “I brought you into this world” kind of things that any teenage mother can claim. This is an absolute, unequivocal “the doctors told us there was no way to save you, but we knew what was right for you and pressed them to act and it saved your life” things.
Owing my life to the countless doctors and nurses that have saved me at one point or another is one thing, but my parents? I have to live with these people. And I hear that my dad has a long memory.
Hard to believe that I went to bed last night planning my steady recovery and woke up at 4:00 this morning with so much pressure in my chest. I had an air pocket for the past week that we were hoping would go away. We thought it was outside my lung and hoped it wouldn’t get bigger. Last night it got bigger and started interfering with my blood pressure and oxygen delivery. They took an X-ray and it looked to the experts like the air was actually all in my lungs in small pockets that had expanded.
Mom and dad were sure it was outside the lungs. The doctors were sure it was inside. Turns out they were both right (I’ll get to that). The doctors told dad that if they didn’t do anything the pressure would keep building and they would eventually lose me. They said if they did do something it would be placing a chest tube in my right side (I’ve already got two in my left). But, they said that the air was in my lungs and the tube would likely go into my lungs and it would be impossible to ventilate me, and they would lose me even more quickly. They said that there was a chance they were wrong, and that the tube might help release pressure, but it was “slim”.
Daddy likes those kind of odds. He told them the air was on the outside and asked them to place the chest tube. The doctors gave him the ethics speech about doing things to me versus doing them for me, but agreed to do the procedure if mom and dad would regret not having done it later. I do appreciate having good doctors looking out for what’s best for me, but today mommy and daddy knew best.
As soon as they made the tiny hole the surgeon “felt a rush of air” and my vital signs instantly improved. She placed the tube without a problem. Talk about a relief. It was great to have some extra space in my little chest to expand my lungs and my heart.
On the new X-ray there was clear improvement. It does still look like there are a couple of pockets in the lungs that might be over-inflated spots. Those were what the doctors were seeing. They seem to have gotten a little smaller after the procedure, but we are going to have to watch them carefully. They could still be a problem and we are praying they shrink or go away.
I went through a lot physically today. Mom and dad went through a lot emotionally. Being told that we were in a no win situation was crushing for everyone. I am just so thankful that God had the right doctors with me today to let my parents have input, and for giving me another chance at this. I know I can recover and get better if I just have a little time with no more setbacks.
We all really need a few days of peace so I can rest and get back in position to get better. I am still in the woods and have a long recovery ahead. Please keep praying for me, but if you could add in a prayer of two for my mom too I think she would appreciate it. She is a little on edge.
FRIDAY, JUNE 19, 2009 11:50 PM, MST
“He was a great neighbor and seemed perfectly normal.”
That’s what they are probably going to say about my dad after the arrest. I can’t get into it in case he is monitoring my communications, but he is CRAZY. I hope it isn’t hereditary (please do not comment on that in the guestbook) because I have enough crap to deal with right now.
It was bound to happen after so many weeks in this place. I had another “episode” today that must have finally been the last straw. This was a new one for us. On the type of ventilator I am on I have a hard time exhaling all the carbon dioxide I produce. When I retain it, my pH goes down and I get acidotic. When that happens my blood pressure can drop dramatically and it can be lethal. They took the ventialtor off for a minute and bagged me to give oxygen and try to clear my tube.
The doctor says that usually kids go the wrong direction when that happens, but I kind of enjoyed it. Got my oxygen levels back up and they gave me some “THAM” stuff for my pH. My levels are still out of range for what we want, but I have been much better since 11:00 this morning.
I think the breakdown my parents are having is coming from the pressure and time we have been here, but also from the regular “ethics” discussions we have with the doctors. There have been several. They had one today with mom and dad about how far they should go to save me if I continue to face this kind of crisis.
I know mom and dad don’t want to see me in pain. And I know for sure they want me to have a good quality of life when I get out of here. So far, they don’t think believe for a second that I am going through more than I should. I think they can see the love and recognition in my eyes when I am awake, and they believe that I belong here with my family.
They also get ultrasound and echocardiogram results that show that I have good brain function and a good heart (that comes from my mom’s side – dad’s family is all lawyers). I think dad feels pretty strongly that as long as I have the head and heart I need to have a good quality of life that we should keep fighting this together, as long as keeping me around isn’t hurting me.
I don’t know exactly what all that means right now, but he has a funny look in his eye all the time now. I wouldn’t be surprised if he hired a hunchback and wheeled me up to the roof of the hospital during the next thunderstorm. I hope for the sake of the other kids here that I don’t need any new parts because I just don’t know what he is capable of these days.
I am still here fighting though. I desperately need a few days without issues. The nurses are constantly watching over me and we are trying to make small tweaks to improve things. I know I can get better if I just have a little time.
As always, thanks for your prayers. They are really appreciated and I know they have been heard. That’s why I am still hear looking forward to fighting another day tomorrow.
SATURDAY, JUNE 20, 2009 11:07 PM, MST
I caught my mom trying to take some of my morphine this morning. I feel bad about putting her through so much, but seriously. She needs to find her own source for now. If I have any left over I will be happy to share. From what I hear about the neighborhood around this hospital, she doesn’t have any excuses if she can’t maintain an artificial chemical balance.
My chemistry looks quite a bit different today then yesterday. I don’t want to brag, but I focused some energy on my recovery today and made some measurable progress. Most importantly, I have gotten my carbon dioxide levels down pretty significantly, and my pH back into an acceptable range.
I am also getting used to this oscillator. They moved my pressure down from 34 to 28, much safer for my fragile lungs. They also moved the hertz from 3 to 4 (180 “beats” per minute up to 240), also gentler on the lungs. Most significantly, they reduced the amplitude from 90 down to 78. That was important because the doctor today had never gone above 90 for a kid my size. It isn’t good to be on a high wire without a net.
They were also able to reduce the oxygen level from 70% down to 50%, and they reduced two of my blood pressure medications down to lower levels. My pressure and oxygenation has held in there pretty well despite the change. They have been giving me some volume (blood products) to keep my vessels filled. I am still too big, so if I can keep my pressure up tomorrow I am hoping for a little weight loss.
All of this was just today. I’d call it a good day for anyone in here, but especially for someone that had housekeeping knocking on the door talking about checkout time just yesterday. Always remember that probabilities and statistics exist because there is no sure thing. I am living proof of that right now.
I am hoping that we can keep slowly improving all these metrics over the next few days. We are still taking things day by day, but at least we aren’t hour by hour for now. If we can keep the winning streak going, we might be able to get moved to a normal ventilator in a few days. We aren’t getting our hopes up yet, but it is great to see some optimism from the naysayers.
I forgot to mention something huge from yesterday. My big sister came to visit me for the first time since I came down to the ICU yesterday. She held my hand and then she kissed my hand. I’m glad mom and dad let her finally come in to see me. She has known I was behind those big doors for a long time.
I’ll be honest, I think seeing Story gave me extra encouragement to start getting better today. Especially since she literally grabbed 3 of my stuffed animals and one of my best blankies and walked out of my room with them. I’m sitting here with nothing to prop my legs up and two blankets covered in dried blood and pareneital fluid. Even worse, the blood isn’t even mine. If I understand this “banking” concept, I think I have to give it back to the blood bank when I leave (dad says I should make them come and get it).
I am going to let them keep dialing down my settings really slowly so I can keep getting better. Please keep me in your prayers for the next week. I really don’t want to take any steps back.
SUNDAY, JUNE 21, 2009 10:58 PM, MST
Holidays are tough around here. Regular days are tough enough, but holidays amplify everything. I got here just before Mothers Day. Mothers Day was my first full day on ECMO. I didn’t realize at the time how hard that must have been on my mom. Dad and I both feel bad about being insensitive about that.
I get it a little more with Fathers Day. Maybe because I am a man (actually, some say I am THE MAN). I don’t think Fathers Day and Mothers Day have the same meaning. In fact, I don’t think these holidays mean the same thing to anyone. For most they are probably just a reason to have brunch, buy a gift, or make a phone call.
My dad found new meaning for Fathers Day today. I can tell that he realized just today that for him Fathers Day is a holiday where we should be celebrating how our father has sacrificed and worked so hard for the whole year to take care of our family.
My dad didn’t feel much like celebrating that today. How can you feel like taking credit for taking care of your family if you have been living in a hospital for 7 weeks, and you feel almost totally out of control of a situation you think you should be managing and handling for everyone?
I know deep down he is doing everything he can, and that he is working hard to take care of me. I just know he isn’t going to be satisfied celebrating success as a father until I am home and safe. That’s why I decided to reschedule Fathers Day for later in the year when we can do something to really celebrate. Naturally, I’ll be doing the same for Mothers Day (I wasn’t born yesterday you know).
In the mean time, I still have serious work to do. I was so focused yesterday on fixing pH, carbon dioxide, and other issues (which are all back to “normal” today) that I may have let my infection set back in. I can’t say that for sure since there is no concrete evidence, but we all saw the signs today — lower blood pressures, low platelet counts, low white blood cell counts.
We are already attacking any potential bacteria or fungus with new medicines. Unfortunately, I had to take on more fluid to keep my blood pressure up. Not exactly what I needed right now. Frankly, I was already bloated in the stomach/chest area. Now to top it off I look like I am trying to smuggle a grenade through security in my diaper. Yes, you know exactly what I am talking about.
I know everyone gets very scared when we talk about infection. I also know that I can beat this infection again, and maybe the drugs I got are already starting to do that. I am bound and determined to keep fighting and not give up. Look me in the eye and you’ll see that.
Thanks as always for your continued prayers. I will let you know tomorrow if we find out exactly what we are fighting against.
MONDAY, JUNE 22, 2009 10:53 PM, MST
Writing to you tonight is very hard. Over the next couple of days I may be delegating this responsibility to my dad, or I may even take a day or two off. I just want you to be prepared and to understand that everything that happens is according to my plan. I don’t usually clue people in on my plans so directly, but I decided to make an exception today.
I had an extremely rough hour from 5 to 6 this morning. I had been really improving all night after a bad day yesterday, but lost all my hard earned progress in a heartbeat. My problems now are cardiac issues. My blood pressure dropped and they had to give me lots of fluids to sustain. My bloodstream isn’t healthy enough to hold them right now. I stabilized and have had adequate pressure all day, but still required more fluid and high doses.
I can’t afford another incident like today. Each time it is more difficult to get me stable again. I took the opportunity today to see lots of family. Most of dad’s family is here and visited. Mom’s family is in Virginia, but I heard from them all day, and I know they are with me. I was just staring wide-eyed at mom, dad, and Grandma Clapper for several minutes. I know that they are with me, and they know that I will always be with them. No matter what.
When you face what I have faced you reflect back on what you have done in your life. My life has been very short, but incredibly meaningful. In barely 7 weeks, I have done incredible things.
I have earned the devotion of countless doctors, nurses, staff, and other patients and families at the hospital. Several of these people have gone to extreme lengths to help me, many have cried because their feelings for me are so strong, and I have made them believe in the strength of my soul. I have even made some very knowledgable doctors remember that you can’t make all of your decisions based on the odds because someone like me will prove you wrong from time to time.
I have touched hundreds of lives outside the hospital as well. People I have never even met. People that my family has never even met before. I think I have inspired many of them to believe in me, but more importantly, I have hopefully opened their eyes to some of the challenges that are going on all the time around them while they are wrapped up in their own lives. Hopefully, I have sparked a change in some of them that will make them do great things for themselves or others. Things that they never would have thought to do without hearing from me.
Most importantly, I have forever changed the lives of my family. I see the love in their eyes when they look at me. And I know they see the love in mine. They also see the recognition when I look at them, and they know I will remember them forever, no matter what I decide to do over the next few days. I know they will live the rest of their lives with me as a big part of them. No matter what happens to me, they know we will always be together. I have given my father faith in something that he may never have gotten without me.
In my spare time, I also learned just about everything there is to know about 6 or 7 different medical specialties. I have spent countless hours studying, asking questions, and gaining an understanding of everything going on around me. Frankly, I think I have probably put together a sufficient body of work to merit an honorary degree from Arizona State University. If you have connections there, please do what you can to get that rolling.
My family has a hard time knowing my wishes, but I trust that they are making the best decisions for me. They do everything based on what they think is best for me. I am trying to slowly start a rally towards recovery. If for some reason that isn’t the path I take, I think my parents are going to make sure I am comfortable and that I leave this wonderful life full of love that I have had the way I entered it, in their loving arms.
This might be hard to read, but you got the easy part. Writing it has been difficult, but it does help me to make sure I am not just doing this for practice. I count on the people who hear from me to act when I might have a hard time doing it myself.
Stay tuned. I may still have a surprise or two up my sleeve.
WEDNESDAY, JUNE 24, 2009 2:01 PM, MST
Apollo wanted me to pass along a message today. We were very busy last night because Apollo decided that it was time for him to be with God. He fought so hard for these past weeks because he knew how much Christa and I love him, and how much we desperately wanted to give him all of the love in the world.
I know that he continued his fight every day waiting for Christa and me to be OK with his leaving us. I also know that he is still right here with us and will be forever. That doesn’t lessen the pain or help us understand why things have to happen the way they do, but we are comforted to know that he is at peace, the he loves us as much as we love him, and that we spent enough time with him to learn so much from him. We know that someday we will all be together again.
Apollo left on exactly his terms. He waited for both Christa and me to tell him he could go in peace. He waited until a day where the three most supportive and helpful doctors, Drs. Egan, Tellez, and Cheah, were in the hospital so he could get the dignity and respect he deserved last night.
Most important, he gave us a warning that it was time and allowed Christa and me to hold him in our arms for 4 hours while he slowly and peacefully went to sleep. None of us are lucky enough to depart the way he had the opportunity to go.
I may have to delegate to Apollo’s Uncle Phil the next post with some information about how we plan to honor Apollo this week. However we do that, I know that the most important way that any of us can honor his memory will be to continue to remember him and to try to emulate the strength that he showed me every single day of his life.
This is probably the most unusual way to work through some of my grief, but it has been helpful to me to start working through things. Christa and I are not as strong and brave as our incredible son so I know this is going to be a lifelong process, but we know that together we can make it through this to continue to take care of our little Story.
Thanks for all your thoughts and prayers.