Baby Maverick

This blog was created to keep family and friends updated on what's going on with the pregnancy, birth, and surgical plan for Maverick. We'll also be able to keep everyone updated during his surgery and recovery and hopefully be able to show you some cute pictures of him, Maddie, Carter and Chloe along the way.

This was the original intent; however, when we started this blog we had no idea the twists and turns our lives would take. Our sweet baby Maverick was born September 12, 2008 with Transposition of the Great Arteries, ASD, and VSD. We expected to have a baby boy to bring home three to four weeks after his surgery. He had numerous complications after his arterial switch and fought through many that would have taken the life from an adult. He passed away February 24, 2009 - without ever coming home.

This blog is now a place I share my feelings, work through the grief, remember Maverick, and try to make sense out of our life without him. I hope in doing so I am giving a name and a face to babies everywhere born with congenital heart defects.

Friday, January 30, 2009

Sleepy day

Here's our sleepy boy today. He had a fever today:( They drew a blood culture and sent a sputum sample from his breathing tube. I'm pretty sure it's still the pseudomonas in his lungs. He also had some older cultures from his tube come back positive for stenotrophomonas. That's what he had in his blood at one point. The infectious disease doctor said it's colonization. He's already on the right antibiotics for both. The only real cure for the stuff in his lungs is to get rid of the tube and continue on the antibiotics. We were getting close to getting rid of the tube, but his blood gases last night and this morning weren't the greatest. They had to go up on the pressure support to 14. So, his vent settings are now 55%, rate 10, pressure support 14/5 and tidal volume of 24. They are still pretty low settings. I hope this is just a little setback and doesn't turn into a great big one. Other than that, the day was pretty uneventful. The feeding tube still needs to be inserted a little farther. My favorite resident said she would take care of that tonight. Hopefully that will help with the output from his ng tube. His bottom has been open with oxygen blowing on it for the past few days and it seems like it is getting better.

I spoke with one of the cardiologists yesterday and another one today. We've been having lots of consults lately. We have a lot to think about... It's good that the future comes one day at a time, because that's about all we can handle right now. More on that later.

We had some sweet people from our church come to see Maverick today. We didn't even know them, but they have a granddaughter in the hospital so they came by to say hello. The lady started crying when she saw Maverick. It's alot to take in, but we've gotten used to it. It's strange how such an abnormal situation becomes your normal daily routine. Thanks to all of you who are coming to visit, sitting with Maverick, bringing great dinners, and helping with the kiddos. We love and appreciate you all. jc.

Thursday, January 29, 2009

Not sure about the kisses

Here's our sweet boy today with Maddie. The kids were out of school today due to the weather - again. Mav had a great day. He's still on a rate of 10 and his pressure support is at 11. They'll probably do some volume support trials tomorrow - Yea! If all goes well, he should be extubated in the next few days!!! I am sooo excited.

Here's the rest of the scoop. His white count is down to 15 - that means the infection is getting better. We had a few different consults today. One of the GI doctors came to see Mav. She made a few suggestions for his feedings and we talked about the PLE (protein losing enteropathy). His alpha1-antitrypsan level came back and it was high, so he is losing his protein through his intestines. It's a pretty complex problem, but he's on heparin now for it and it seems to be getting a little better. Another alpha1-antitrypsan level was sent 2 days ago to see if the amount of protein in his stool has decreased any. One of the cardiologists came to see Mav as well. Just checking in and will be checking on some type of home dosing for the heparin. We saw Dr. Turman, the nephrologist (we see him every day). He decreased the amount of dialysis fluid that goes into Mav's abdomen to 60mls. Mav was breathing fast toward the end of his cycles and we need him to be very comfortable right now so everything will go smoothly with the ventilator weaning. He's on manual dialysis for now; the cycler wasn't working well with his small volumes.

So, I'm hoping Mav is extubated soon. He'll have to be on high flow oxygen for awhile, and there are some other issues that need to be managed, but if all goes well I'm hoping we can have him home within a month. Here's my disclaimer - that is just my timeline. We all know Mav has his own. I'm sure the doctors have their own, too, but I've let them know that I want him home as soon as possible. I don't care if we have to do IV meds, continuous feedings, or manual dialysis. I just want him home. I think they understand. Keep sending your thoughts and prayers. The next few days will be important ones for little Maverick - and us. Love you all - jc

Wednesday, January 28, 2009

Just sleeping with his monkey

Ahwww, isn't he sweet? Well, sorry for no posts. I've been at the hospital since Monday morning. Those of you from Oklahoma know the weather here has been terrible - lots of sleet and ice. I just camped out at the hospital with little Mav. I'm back home now and it will be nice to sleep in my own bed. It's kind of hard to sleep up there. Greg told me when I left Monday to take some extra clothes just in case, and I'm glad he did.

So, we've had some good days. Maverick is now down to 10 on his ventilator rate! That's as low as they go. His pressure support is at 14/5. They usually wean by 2 to 10/5, then they'll start some volume support trials to see how he does before they pull the tube out. If all goes well, my conservative estimate for extubation is Monday. That's very conservative - it could be much sooner. We'll just have to see how the little guy does. He was pretty tired when I left today. I'm not sure they'll be able to do much more weaning today, but he may surprise me.

It really ended up for the best that I stayed in OKC with Mav for the past few days. God knew I needed to keep an eye on him. I was able to be with him constantly and figure out some of his little issues of late. A few days ago he had an episode where he started breathing fast and looked a little panicked. They increased his vent rate to 15 that day. Turns out he does that like clockwork 1-2 hours before his methadone dose is due. His methadone had been weaned from every 8 hours to every 6 and I guess he just didn't like that too much. They changed it back to every 6 hours today, so hopefully that will work better for him. He's on it because he was on the fentanyl (narcotic pain med) drip for awhile.

The nephrologist changed the dialysis volume to 100mls yesterday with two hour cycles. It was an attempt to get Mav a little closer to a home-friendly schedule for dialysis. It started yesterday evening. His gases last night and at 0400 this morning were worse and he was breathing fast, so Dr. Turman changed him back to the previous volume and his gas this afternoon was much better.

I spoke with a GI resident today about some of Maverick's feeding issues. They're supposed to come back tomorrow morning and hopefully have some better ideas for his feedings. Right now he's on continuous feedings, but over 1/3 of his feeding volume comes out through his NG tube. If the tube isn't in, then he vomits. His triglycerides have been high, too. So, we'll see what input they have tomorrow.

Mav's little bottom is still pretty raw and sore. We just keep trying new things to protect his little bottom as much as possible.

His white count is still high, but is coming down (20). His CRP is getting lower, too (4).

All in all - good news. Keep praying for no set-backs. We're getting closer! Love you all - jc

A little video

videoJust a little video from last night.

Tuesday, January 27, 2009

Another attempt to catch a smile

Greg gave me a hard time and said he was yawning.

Trying to catch a smile

Almost got it. My camera phone has a delay.

Sunday, January 25, 2009

Resting with the animals

Here is Mav relaxing today. He had a good day!!! His white count was down to 20 and his CRP was 24. He is down to a rate of 12 on the ventilator and now they're weaning his pressure support. It started out at 18 and now he's down to 14. Dr. Gormley actually said we may be extubating soon if he keeps this up!!!! It's nice to not be the only one who thinks it will be happening. He's still on the cycler for dialysis and I'm going to talk to the nephrologist tomorrow about the plan to get him on a more home-friendly schedule. They're going to try to get the new formula sometime this week and give him more calories in less volume. It has all the extra good stuff babies need. I'm hoping the new formula will help with the frequency of his stools and help his little bottom heal. Mav has a venous ultrasound tomorrow to see if he has any blood clots in his legs since his platelet count keeps going down. He had one in his left groin from a previous central line. We'll see what that says. He's beginning to move a little more. It seems like he gets stronger everyday. The nurse was suctioning him today and he got so mad. He had his arms and legs going. A little adduction of the hips, a little flexion of the knees - not great big movements, but movements. More baby steps.

I went to see my new niece today. My sister had baby Addison on December 23rd. She was five weeks premature and had to stay in the hospital awhile herself. She's doing great now. I got to feed her today. My sister, Heather, wasn't sure if I'd want to. I said, "Are you kidding? I haven't been able to feed Mav yet. I want to feed a baby!" She was so sweet. Maddie was with me and held her, too. It's driving her crazy that Mav is four months old and she hasn't been able to hold him yet.

Well, enough for now. Thank you all for your thoughts and prayers - they're helping us get there. Love you all - jc

Saturday, January 24, 2009

Love that paci

Our sweet boy loves his paci. He had a good day eventhough his white count is still high and his CRP is even higher (32 and 42). He's still occasionally running a fever. All his blood cultures are still negative and he still has the pseudomonas in his lungs. He's trying hard to get that ET tube out (his breathing tube). He's still weaning from the ventilator like a champ. His rate is down to 14 and his gases are still good. They were having some issues with the cycler (dialysis machine) last night. The dialysis nurse was coming in today to see if he needs to go back on manual dialysis. She hadn't been there yet when I was there this morning. Greg is there now, but I haven't heard from him. He's trying to spend as much time as possible with him on the weekends since he's back at work during the week.

Carter had a birthday party to go to today and is spending the night tonight. Maddie, Chloe and I are hanging out at the house tonight. We've played Candy Land and painted fingers and toes. I've been on the internet trying to find some more info for Maverick. I think I've found a better formula for him - I'll run it by the doctors tomorrow. I'm always in a quest to find some answers for our complex little guy. Keep praying for him to respond to these antibiotics. We need to get this infection under control. More tomorrow - jc

Friday, January 23, 2009

Resting and trying to heal

This was Maverick before I left this evening. He had a good day despite his white count and CRP being up again (32 and 9). He continues to wean from the ventilator - his rate is now 18. His blood pressure has been higher and his peak pressures on his ventilator are lower (20-23) - that's all good news. A report from the lab came back this evening and he has two types of pseudomonas growing in his lungs. They are both treatable by the antibiotics he is on now. I'm not sure why his white count and CRP are rising. None of his blood cultures have come back positive for anything (no infection in his blood). I'm just praying we'll get some good news when I call to get his labs in the morning. He's doing his best to get better. He was put on the cycler today for his dialysis (that's the machine we can go home on), and they increased his dwell volume to 80mls. The first cycle on the machine was happening when I left this evening. Hopefully it's going well. More tomorrow - jc

Thursday, January 22, 2009

Almost a smile

What a sweet baby boy. He looks like he's about to smile in this one from today. He looks a little better today and was acting like he felt better. Ok, so here is my official apology. I'm sorry and I was wrong. The sensitivity came back from the pseudomonas (the bacterial that's growing in his lungs) and it is sensitive to the antibiotics he's on right now - that means he on the correct antibiotics. But it is a different psuedomonas than what he had earlier this month - or it's just become resistant to more antibiotics. Nevertheless, his white count was down to 24 today. His CRP is still 2, and he had another fever today. His peak pressures on his vent are lower and his gases are better. I don't know what to think. I'm just glad he's not getting worse. So, some good news - he's on the lowest % of dialysis fluid and he's still getting enough off. They changed his dialysis to 60mls today and 2 hour cycles. He has to have at least 60mls to be switched from manual dialysis to the cycler (the machine that we can go home on). So, if all goes well for the next day or so they will be switching him to the cycler soon. That's one step closer to going home. They went up on his ventilator rate a little last night, but went back down today. He should be in the teens on his rate sometime tomorrow if all goes well. He's tolerating his continuous feedings well, but his little bottom is worse. We're trying a new cream on it today. I'm just so ready to get him home. On the way to the hospital today I was making a mental list of the things that need to happen for us to go home. The ventilator is a big one. Thanks for the prayers. More tomorrow - jc

Wednesday, January 21, 2009

Frustration

Here's our precious boy today. His white count was up to 26 and he's had a fever. The culture from his ET tube (breathing tube) had a moderate growth of pseudomonas which is what he's on antibiotics for right now. His peak pressures on his ventilator are higher than they were in the past few days - in the 30's and he's needing a little more oxygen at times. His blood gases aren't quite as good either. All that said, I'm not a doctor, but I think his pseudomonas has become resistant to the ceftazadime. The problem is I'M NOT THE DOCTOR. No one here is convinced that's what the problem is, so they're waiting on the sensitivities to come back before they change his antibiotics. I understand this in theory, but this is OUR BABY. He doesn't have a big window of time where you can sit back and mull over the options. I just want them to give him the strong stuff now until the results come back. So, the doctors in the PICU turf the call to the infectious disease doctor who I'm told says that it would be unlikely the pseudomonas has become resistant to the ceftazadime. Ok - we're talking about Maverick here, and this has happened to him before. If I am wrong, I will post a formal apology here on the blog. I'm just so frustrated right now and that's the only thing that makes sense to me. I don't want him to get so sick that he starts getting edematous again, and has blood pressure issues again, and, and, and.

Enough about that - I have to throw in some good news. Focus on the good. His lymphocyte count is up to 4. I know that's not even close to normal, but it had been 1 or two the entire time we've been here. One of the problems with the PLE is that you lose lymphocytes - I guess through your stool. I'm encouraged that the number is starting to rise.

Well, enough for now. Hopefully the sensitivities will come back tomorrow. Keep saying your prayers. Love you all - jc

Tuesday, January 20, 2009

Bright eyes

Mav had a good night last night and a good day today. The only issue we had was that his white count was up to 19 today. His CRP was 2. He's been a little warm the past 24 hours as well - his temp has been up to 37.8 a couple of times, and he's usually around 36.5. Dr. Gormley ordered cultures of everything and gave him a dose of vancomycin - I'm very thankful for that. He's still on several other antibiotics as well. He still looks good, but that's how he looks until things get really out of hand. We just have to catch things while they're sneaking up, not after they're staring us in the face. He had some poop issues today and was worrying me. His stools were completely serous (yellowish liquid). The GI doctor came in and looked at the diapers I had saved and said they looked like stools of someone with a virus. He left, I felt a little better. The next diaper was huge and normal and had a big mucous plug in it. I think the boy had a plug in his plumbing. He continues to be negative on his intake and output, but his cheeks look a little chubbier to me. I think he might be putting on some good weight. Weaning continues on the ventilator. He's now at a rate of 25 and his oxygen is at 30% - no other vent changes. Nor-epi is off, his blood pressure is still a little low at times. Dialysis is going well. I'm just praying he'll continue on in the right direction. More tomorrow - jc

Monday, January 19, 2009

Watching his mobile

Here's Mav today watching his mobile. He had a good night and has had a good day, as well. He was awake alot today and seemed pretty content. Maddie was laying her head on his bed, talking to him, and tickling his chin. She started calling for me to come see him, but I was talking to Dr. Gessouroun. He had been smiling at her. How sweet. So, here's what's going on today... They are weaning the nor-epi and have decided to tolerate a little lower blood pressures due to the propanolol. They gave him some synthroid today to help his thyroid out which may also help his blood pressure. His nitric vent is off and he continues to wean on his ventilator settings (40%, R29, 18/3, TV 24 - he was up to a rate of 42 when he was so edematous). So far, so good. His white count was 15 this morning and his crp was 3. You know that makes me nervous. He has to stay on the right track. I'm not giving him a choice this time. They changed his dialysate to the 2.5% from the 4.5% today and they were going to increase the volume from 40mls to 55 mls. That's also a step in the right direction. He has a left femoral arterial line in from the heart cath, and they may take that out tomorrow. He got some IVIG today as well.

Maddie wants me to tell this story. She thinks we're famous. We were listening to 89.1 this morning on the way to the hospital - she was out of school today and went with me. The DJ was wanting people to call in and tell him their "dream" - as in "I have a dream..." She kept on and kept on bugging me to call in. She dialed the number and handed me the phone. I told the DJ my dream was to bring my 4 month old baby home. He asked me some questions and threw in a few jokes about not having another child and naming him "goose" (from Top Gun). Anyway, we got to listen to the call on the radio before we arrived at the hospital. Maddie was just beaming.

More tomorrow - hopefully all good news. Love you all - jc

Sunday, January 18, 2009

How did that happen?

Speaking of laughing, Carter came to me this evening saying, "Mom, I got gum on my eye." I look up and he has gum caked on his eyelashes on his left eye. I said, "How did that happen?" First he said, "It fell out of my mouth and landed on my eye." HMMM, I thought. Then he said, "It fell out of my mouth and landed on the floor and my eye landed on the gum." If anyone else has this dillema, peanut butter will loosen up the gum and allow you to remove it from the eyelashes.

Sleepy boy

Maverick was just worn out today. I'm not sure what kind of excitement he had last night, but he was resting well today. He would wake up for his vital signs and when we turned him, but other than that he was out. His numbers still look good and he's still getting the fluid off. He's on more than full feeds now so he can get some weight on. So far he's tolerating the ventilator weaning well. The nitric vent should be off this evening. He's still having some issues with his blood pressure and he's still on nor-epi. His propanolol and viagra could be causing some of the blood pressure issues. They are weaning his fentanyl drip and started him on methadone today to help him come off the pain med and that will hopefully help with his blood pressure. His little bottom is looking much better, and today when I was getting ready to change him he made a slight little kick with his left leg. It was very slight, but I saw it. The therapist, Peggy, says he's getting some hip movement and deltoid movement back as well. Don't get me wrong, he won't be swinging at us anytime soon, but it's slowly coming back. The neurologist said it could take 4-6 months or longer - the official name they used was "critical illness polyneuromyopathy". I've learned all kinds of big words so far. I'm sure Maverick has too. With the other kids, we would listen to a CD in the car that had an abc song on it. They sang a word and then made the letter sound three times behind it. I'm sure Mav's "ABC" song will go something like this:


Albumin, albumin, a a a; Blood pressure, blood pressure b b b; ceftazidime, ceftazidime c c c; dialysis, dialysis, d d d; enteropathy, enteropathy e e e; flaccid, flaccid, f f f ... You get the picture. I just have to laugh.

Saturday, January 17, 2009

Sleeping with his gecko

Here's little Mav today. He had a good night and was 500mls negative yesterday. He has shrunk and is now 4.2kg. He was a bit fussy today and they increased his fentanyl drip from 2mcg/kg to 3mcg/kg. He was really interested in his paci, but had a hard time keeping it in his mouth with his tube - he has many stuffed friends to help keep it there if Greg or I or one of his adoring fans are not there to hold it for him. They moved his tube to the other side of his mouth when they retaped it, so now the saying is upside down. I guess I just need to cut a hole in the other side of the paci, too. They are continuing to wean the nitric vent and he should be off it tomorrow. They have also started weaning his ventilator rate by 1 every four hours. Baby steps. His white count was down today which gave me some relief. His CRP is still hovering in the 1's - I know that's not high, but his has always decreased to less than 0.2. They increased his feedings to 24mls/hr - I hope he tolerates it. I feel like I'm holding my breath, just hoping and praying everything goes well.

The kids and I went to Walmart this evening while Greg was with Maverick. It seemed like everyone had a baby. Greg told me that the last time he went, too. I'm sure there hasn't been a baby boom or anything - we're just noticing it more. All those sweet babies make me smile. I want to tell the parents how blessed they are to have a healthy one. We were blessed three times with healthy babies, but never realized it until now. We just expected them to be healthy. All the times I complained about one of them not sleeping, or being fussy all day, or dealing with all the ear infections or bouts with croup... I would love to have those issues with Maverick. I wouldn't complain at all. If I do start to complain one day and you hear me, feel free to slap me. I won't slap you if I hear you complain, though. I know that any difficulty is still difficult, no matter how big or small. I think I'll appreciate the small difficulties from now on. Well, enough for now, more tomorrow - jc

Friday, January 16, 2009

Sleeping like a baby

I thought this was a cute one from today. His bruising is starting to fade.

"Encouraged by his numbers"

"I'm encouraged by his numbers," those were the words I heard from Dr. Gessouroun this morning. His albumin level is at 3.5 - which is very high for him. They are only giving him 1/kg of albumin when needed for his blood pressure. He got it twice yesterday. Even when he was getting two per kg twice a day his levels weren't that high - I like to think that means the heparin is working for the PLE. His total protein level is also higher. He's tolerating his feedings pretty well. He still has the NG tube down for his gastric secretions, but the amount is decreasing and his stools are getting larger - no diarrhea either. His white count was up to 14 today, which makes me a little nervous, but they've been doing daily blood cultures for several days and so far all those are negative. His CRP was 1.3 today (I think that's what it was - sometimes it's hard to keep track of everything from day to day). They are weaning him from the nitric vent and he doesn't seem to notice at all. The dopamine wasn't working well for his blood pressure, so now it's off and he's on nor-epi. He's still on the propanolol. He continues to lose more fluid as well. His blood gases have been good. I asked Dr. G about weaning the vent today, but he said he doesn't want him using lots of calories on breathing at this point. After the weekend was the answer I got. PLEASE, NO COMPLICATIONS, INFECTIONS, OR SETBACKS!!! He just needs a smooth road. The nephrologist spoke to Greg yesterday and said the progress he's made from last week to this week is nothing short of miraculous. Honestly, I think everyone is surprised. He's such a strong boy. He was awake for several hours this morning and watched his mobile,listened to me talk, and looked at and listened to his books. It's good to get a good view of his pretty blue eyes. I need to get my real camera so you all can see his long eyelashes. Everyone who sees him in person comments on them. It looks like he uses an eyelash curler. Another thanks to everyone for everything. If I had to write thank-you notes to everyone who's helped us in different ways, I'd be writing them for the rest of my life. You all are great - love you all - jc

Thursday, January 15, 2009

Losing weight

Here is sweet little Mav today. He can see again! He was over 200mls negative for yesterday and, as you can see, he can open his eyes pretty well. He was happily looking at his mobile today. His white count and crp continue to go down. They're tinkering with some of his heart medications and have started weaning the nitric vent today. His bottom is looking a bit better. His abdominal x-ray this morning looked better, so they started feedings back up. He's still having quite a bit of green secretions coming from his NG tube, though.

My darling husband had a disheartening concern that he expressed to me today. He said I always refer to Mav as "MY sweet boy" or MY whatever I call him that day. My answer to him was that I am the one writing all this, so I put MY. So, to everyone out there keeping up with Maverick, he really is OUR sweet boy, and I am not trying to omit my husband from the equation when I'm writing all this. Sorry, Greg, no harm intended. And, just to let you all know, MY sweet husband got up early this morning and helped the kids get ready, made arrangements to get them to school, and went to OKC for an appointment, then went to see Mav. He did it so I could sleep in. It was nice. Thanks, babe.

Well, keep praying for no other complications. We'd really like to take the little guy home soon. Love you all - more tomorrow - jc

Wednesday, January 14, 2009

Still puffy

Mav had a good night last night, and was having a good morning today. His blood gases are still good, and peak pressures on his ventilator are 20's-low 30's. His output from his dialysis had slowed down some, but this evening for the past 3 cycles it has been way up. Maybe he's finally ready to let go of some of this fluid. His CRP was down to 2 today from 8 and his white count was ok. He had an episode this afternoon - he was vomiting green. We looked at the xray from this morning and he had some bowel loops with stacking, but he's still having stools - just not as much as he should be having. They're going to restart feeds this evening at a slower rate and keep an eye on him. The kids came up to see him today. They're going to start weaning the nitric vent tomorrow. I'm hoping he has shrunk by the time I see him tomorrow morning. More tomorrow - jc

Tuesday, January 13, 2009

Paci time

Here's Mav today. He is actually looking better - yes, this is better. The bruising is starting to fade a little and he's slowly getting less edematous. He has his paci back and was actually interested in it today. We had to cut the side off and file it so he could use it with his tube. He was about 100mls negative on his intake and output for the past 24 hours. His central venous pressure was 9-13 today - that's low for him. His blood pressure is a little on the low side, so I'm not sure if the lower CVP is related to that or if it's because the viagra and nitric are working. The plan as of today is to leave him on the nitric vent for about a week. His white count is down, but his CRP is hovering in the 8 range which is odd for him. Usually after an infection starts to clear it goes down pretty quickly to <0.2.>

Thanks to all our friends and family who have visited, those bringing us the great meals, and to those who are keeping an eye on Mav in the evenings. I'm able to get a few things done around the house, help with homework, and hang out with the kids for a few hours before bed without worrying about Maverick. I wouldn't be able to keep my sanity without you all. I'm so blessed to have each one of you. Love you all - jc

Monday, January 12, 2009

4 months old

My precious boy is four months old today. Guess what he got for his four month birthday? A nitric vent and some viagra. Wow, what a great gift. The attendings change at the beginning of each week, and Dr. Gessouroun has some new ideas for Maverick's little heart. He's trying him on inhaled nitric oxide, it's a gas that goes through his ventilator and it dilates his pulmonary arteries. The thinking is that by dilating the pulmonary arteries, his right ventricle won't have to work so hard. He has also stopped the milrinone and is starting him on viagra - yes, viagra. It is used the same was as the nitric, just in an oral form. They're starting the viagra today and in a few days will wean him off the nitric vent. FYI - viagra was first used for issues like this, but the side effect caused a lot of attention... He is still very puffy and his output was slowing down when I left today. Just keep praying - there has to be a reason for all this. I did get to talk to the infectious disease doctor today, and he's not going to start him on ampho-b, but he is going to have an itraconazole level drawn to see if it's in a therapeutic range (that's the med he's been on for a long time for mold infection). He talked about switching it to IV, but couldn't because of Maverick's kidneys. He's also having his urine collected from tonight and spun down. They'll take the sediment in the lab and see if there is any mold growth. There just has to be an explanation for all this. I just want him to get better so badly. jc

Sunday, January 11, 2009

videoThis was a video of little Mav from 10-17. Greg had it on his phone and he showed it to me today. Guess what it made me do - one guess - yes, I started crying. I just can't believe all this little guy has been through. He really needs some good days, free from any complications or setbacks. He is doing about the same today. He is getting some of the fluid off. My grandma called me and said she started praying for him this morning, then my aunt Jeanne who is a Methodist minister called her and said she stopped the choir in the middle of her service today to have the congregation pray for Maverick. The 12:20 dialysis cycle yielded 110mls net of output. I remember only one other time it was more than that. That's something to be thankful for. I ended up going to the hospital around midnight last night. The resident called and told me they had given all the blood products and he had had a couple of little dips in his blood pressure - to the 60's systolic. She was concerned because he was oozing quite a bit of bloody secretions from his mouth. I went up there and it wasn't as bad as I had expected. When he gets really edematous he tends to have lots of serous secretions from his mouth and nose. I think someone got a little rough with the suctioning and it caused it to be a little bloody. His H/H were good today and so were his platelets. His white count came down and the results from the ET culture showed a moderate growth of pseudomonas, so at least we got the antibiotics started yesterday and it seems as if he's responding. They increased his feedings again today and he's tolerating them well. No diarrhea so far - I hope that's a sign that the heparin therapy is working.

So, remember last weekend when we thought he perforated his bowel? No one ever knew what the green coloration was from, or the dark flecks that were in the drainage. The flecks didn't look like stool. They were flat. I think I know what they were. Stay with the story for a minute and you'll understand. Last night I decided I was going to soak in the tub. We have a whirlpool tub, but we hardly ever use the jets. The kids take baths in there alot, but the jets just don't get used much. I turned them on last night and looked down and there were some dark flecks coming out of the jets. They looked exactly like the ones that came from his dialysis fluid at the time of the questionable perforation. The explanation? Mold. Maverick had a mold/fungal infection back after his first surgery that was on his mediastinal incision. He was on ampho B for quite a while and then switched to oral medications for it - and he continues on those. The infectious disease doctor in Dallas said the mold infections can be difficult to treat and can hide out and kind of encapsulate themselves then cause problems later. The day of the drainage, I had held and rocked him and I think an area of infection was disrupted, causing the color and flecks in his PD output. I told this to the resident last night and she added on a fungal culture to those from a couple of days ago. I asked them to switch him back to ampho-b, but they want to talk to the infectious disease doctor here first. I'll make sure we talk to him tomorrow. There must be an explanation for the color and flecks in the fluid and this is the one I think is most probable. That may also be why he continues to hold on to this fluid. Usually, little man will let go of the fluid after he starts recovering from an infection and I couldn't understand why he continued to get more edematous. The PD issue happened on Friday, on Monday he turned bright red like he does when he's septic. They drew regular cultures and only found light growth of pseudomonas in his et tube - not really anything they wanted to treat at that time. No fungal cultures were drawn. He's continued to stay puffy.

So, just continue to pray for my precious boy. We love him so much and want to get him home. He'll be four months old tomorrow. This is just unbelievable. More tomorrow - jc

Saturday, January 10, 2009

A little bit negative

Here's my sweet boy today. He's still very puffy, but his fluid balance was negative around 300mls yesterday. That's good - it means he's getting some of the fluid off. He's just still so puffy and bruised, it hurts me to look at him. He's on a fentanyl drip to help keep him comfortable. He was still opening his eyes today and listening when we spoke to him. They are having to tread a very thin line by keeping him intravascularly dry while supporting his blood pressure with the dopamine. Today they've had to give him blood, platelets and ffp. I'm not sure he'll have a negative balance tomorrow with all that extra fluid. We'll see. His vent settings are still high as they are having to support him due to all the edema. His peak pressures are usually in the 30's to 40. His blood gases are pretty good, though. Today his white blood count was high and his CRP was 6. His chest x-ray was a little questionable - they've drawn blood cultures and took cultures from his dialysis output and his ET tube (his breathing tube) and started him on antibiotics. I think the pseudomonas that grew from his ET tube on Monday is probably not just a colonization, but was an early infection that is now causing some problems. We don't need any more problems. Just pray that he responds quickly and well to all the treatments they're doing. While you're at it, say a prayer for his little bottom as it is still very raw. They've now placed a duo-derm on it. It's a dressing that stays on for several days. They've also increased his feedings today to 8mls/hr of portagen. Yesterday they switched from 5mls of 1/2 strength to 5mls of full strength. So far, so good.

Ok, so on the bright side... You won't believe this, but he had 18mls of urine out yesterday! I would have to look back, but I think that's the most he's had since he's been on dialysis. I was wondering if it was the high dopamine - he's at 10mcg/kg. Dr. Henry (the attending) said maybe one of the heart meds - but she would just be guessing. He's just such a complicated little boy, no one really knows what makes him tick. Whatever the reason, I'll take it. Dr. M always said there was no reason for his kidneys to quit working.

I wanted to let everyone know how much I appreciate your help. We have people signed up to sit with Maverick in the evenings through Friday (and I need to call some of you back for further out - I just need to take it about a week at a time right now), and our friends and family have been a tremendous help with the kids. Thank you all very much. More tomorrow - jc

Friday, January 9, 2009

Precious boy

This sweet baby is my little fighter. I told Maddie he looks like he's been in a fight in this picture and Maddie said, "He has." She's right. He was actually looking better this evening than he did this morning. This picture was from this evening. The darker areas on his face are bruising from the swelling. He was able to open his eyes just a bit today. He would hear me talk and open them as best as he could. His blood gases have been good today and his vent pressures have been better. They were able to wean his vent a little last night and this morning. The doctors are being aggressive at trying to get the fluid off. He is still on the highest concentration of dialysate and is pulling off quite a bit, he's just intravascularly dry. They want him to be dry in hopes that he'll pull back in some of the fluid from his tissues. They're keeping his blood pressure up with dopamine - it's at a pretty high dose. They've had to give him a couple of boluses when he dropped his pressure, and honestly, I don't really understand all the reasoning behind it, but I think they have a method to their madness. They also started milrinone and propanolol today to see if they would help with his stiff little heart. I didn't say yesterday, but he tolerated the heart cath without any problems. I was bracing for the worst - he didn't do too well after the last cath, but he surprised me with this one.

Speaking of surprises - I opened a diaper this afternoon and saw pee. I just about screamed when I saw it. He had just been having a little drip every now and then. Today he had 2 mls once and 4mls the next time. I don't know if it has something to do with the dopamine or what, but I was excited. It's the little things, you know?

Speaking of pee, the dialysis nurse came in today and taught me how to change his set-up and his bags of fluid and how to change his dressing. I'll be able to do that from here on. That took some anxiety away from me. I had been stressing over the inconsistency of the way different nurses were doing it. It's just difficult watching people take care of things dealing with your baby, especially when you know you could do it yourself.

Well, it's late and I'm ready for bed. Thanks again for all your thoughts and prayers. I'll update tomorrow. jc

Thursday - cath day

Well, Mav's day didn't start out so well (Thursday). He had a bad blood gas this morning and his peak pressures on his ventilator were in the 40's and up to 50. He was even more edematous and his eyes were bruised from the swelling. We decided to let him have the heart cath today since the swelling wasn't getting better. Dr. Ward did the cath around 4:00 in the afternoon. Prior to the cath they had tried transducing a pic line in his right arm and the pressures were in the mid-upper 20's. He had another pic placed in his left arm a few days ago and those were transducing in the mid - upper teens. On the heart cath, his central venous pressure was 18 - which is high - which is not good. They didn't find any structural abnormalities, but his right ventricle was very stiff. Maverick has had that problem since his first surgery. There is really nothing they can do about that. So, with all that said, we just need to be able to get the fluid off him and support his little body the best we can. Hopefully he'll get some fluid off and the heparin therapy will start working and he'll be able to do alright with the high central venous pressure. I also wonder if it's maybe a little higher than normal due to all the swelling he has right now. His weight was 4.6 kg Wednesday. I know this news isn't the best, but I keep thinking of everything he's been through and how he's pulled out of it. He's done well in the past, and that was probably with the same CVP. When I left tonight, he had 110mls of fluid off with one hour of a dialysis cycle - he's never had that much out with one cycle before. I think he's starting to let go of some of the fluid. I think he'll look better tomorrow. His peak pressures were in the 20's and 30's when I left. Why the sudden turn? I think it's all the prayers. Some of my friends from church came and prayed for him today and my sweet friend, Kelly, did the same. I know alot of my other friends and family were doing the same from their homes. Thank you all very much - love ya - jc

Wednesday, January 7, 2009

Happy Birthday Carter

This is my other sweet boy, Carter. He turned 8 today. We had pizza at home and sang "happy birthday." Carter requested carrot cake (one of my favorites), so that's what we had. We may have a party this weekend, but we're going to have to plan it last minute because Maverick is having a rough day.

He's still very edematous. They changed his dialysis percentage to 4.5% - that's the highest - to try to get some of this fluid off him. His first cycle on it yielded 55mls which is better than his other cycles today. He's having some ventilator issues due to all the edema. They may have to sedate and paralyze him tonight. We'll just wait and see how he does. His last gas was actually better than the previous ones, but his peak pressures are high. We're just praying the dialysis works and that will resolve some of his vent issues. If he doesn't get some extra fluid off in the next 24 hours, they're wanting to do a heart cath tomorrow to see if there is some kind of structural issue...

My mom flew in today. I was so glad to see her. I was having a rough day yesterday and she sent me a text last night asking if I could pick her up at the airport at 3:30. Thanks for sharing her, Brown. More tomorrow - jc

Tuesday, January 6, 2009

Sweet puffy boy - keeping it in perspective



This was little Mav when he was on ecmo.
This was a picture of his room. Yes, there's a baby in there.


Oh, Little Mav... He's puffy again. This was him yesterday. He really can't even open his eyes today. They've changed his dialysate to 2.5% and are doing hourly dwells to get some of the fluid off. He continues on the heparin for the suspected protein-losing enteropathy. They got a call from the lab yesterday about the alpha1-antitrypsan level - that's the test to see if he's losing the protein in his stool - and guess what they said. The quantity of poo was insufficient. They waited a week to let everyone know that. So, we're back to square one on that test. Other than that, not much has changed. They are wanting to do another heart cath. I just don't think he's up for that right now. Maybe after they get some fluid off. His little bottom is so bad right now. We're trying everything and it's just not helping. He's just not at a prime state for healing right now.

Greg started back to work yesterday. He's doing well, but is very tired and his back is sore at the end of the day. This week has been challenging so far. I didn't get home until 8:30 yesterday evening, so the kids were upset that they didn't get to see me longer. I left the hospital today at 4:00 so I could see the kids more this evening. Then I felt bad for leaving Mav. I just hate the thought of him being awake and just staring at the wall or his mobile with no one to talk to him. I'm sure the nurses talk to him, but I'm sure you know what I mean. They have other things to do. My aunt Cindy and my granny went to sit with him for awhile yesterday evening and my stepmom, Teresa, is sitting with him tonight. If you'd like an evening shift and know my numbers, give me a call. He likes his head rubbed and will listen to anything you have to say. You can't be scared of machines, lines, and tubes, though. I'm used to seeing them, so they don't bother me. I've had visitor in this week and several have commented on all the pumps and tubes and machines. My response is always, "This is nothing compared to what he was on after the first surgery." The above pictures just help me keep things in perspective. He's doing better now than he was on ecmo (thanks for all the gentle reminders when we were in Dallas, Mr. Perky).

Thanks to everyone for your thoughts and prayers. Love you all - jc


Saturday, January 3, 2009

Chloe and her baby

Here is a pic of Chloe and her baby. If you look closely there is tape on the baby's face. I did a close-up of the doll - just scroll down. Here's the story behind it. The other night we all went to see Maverick at the hospital. She's always been fascinated by all the tape on him. They were changing the tape on his breathing tube when we were there. The next night Chloe came to me holding her baby with the tape. She said, "My baby sick. She not come home. She need more tape." She handed me the scotch tape and I pulled some more off for her. She taped the baby's arms (Maverick has tape on his arms from his IV and PCL). Last night when I came home from the hospital she asked me to take the tape off the baby. She said, "She all better. She come home from the hos-a-paytal." I just thought that was a cute story. It almost made me cry when she brought the baby to me with the tape on her face - then I told myself to just suck it up. I'm crying too much lately.

As for Maverick, he had a pretty ok day. I'll take that. His dialysis output looks normal now. The cultures are still negative. They started him back on a little dopamine last night. He's responded well to that. He got some blood and platelets today and a dose of bicarb, so he's positive on his I's and O's - which basically means he's very puffy. I'm sure the nephrologist will change his dwell time to hourly tomorrow to try to get some of the extra fluid off him. His WBC's are at 16 - they've been there for the past couple of days and his CRP went from 2 to 3 today. I'm just a little nervous. I'll have to keep a close eye on him. Other than the edema he looks good. His color was good today. He has been a little mottled the past several days, I think it was probably related to his acidosis. They have his blood gases in a pretty normal range now. They are slowly weaning his ventilator. I don't think they'll be able to do much more until the extra fluid comes off, though. I really think he's getting a little more movement in his upper extremities. He still can't do much above his wrists, but I think he's getting a little better. I had a dream last night that I was changing his diaper and he kicked me. That would be great. I'm taking that as a sign of things to come.

On the home front, Greg starts back to work tomorrow. The kids go back to school, so I'll be hanging out at the hospital during the days with Maverick. It's been challenging keeping everything balanced. I feel like I'm holding plates on both hands and on my head and standing on one foot and that foot is on a ball. All my friends, family and church have been helping keep the ball steady. Thanks for your continued thoughts and prayers. Love you all - jc

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Here is a close-up of Chloe's baby.

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This was Maverick this evening. He's such a cutie. You can't see his pretty blue eyes with these pictures - and his eyelashes are so long - they look fake. The past couple of days he's had us on yet another roller coaster ride. He had some issues with his blood gases Thursday night. Friday he was doing really well and I held him. Friday night, I was getting ready to leave and looked at his dialysis bag. The output was green and had some flecks of dark stuff in it. His has always been a peachy color. I started to panic. The attending came in and looked at it and thought the same thing I did... It looked like he may have a perforation in his intestines causing his stool to leak out into his abdomen. They called the pediatric surgery resident in and took some x-rays. Thankfully there was no free air in his abdomen - that is a sign of intestinal perforation (or a hole in his intestines). They would've wanted to do surgery. That in itself would be very complicated for Maverick and would've meant he would've had to be put on a different - riskier- type of dialysis if he made it through surgery. They started him on antibiotics and sent a culture and gram stain. Greg and I stayed close to the hospital last night. His vital signs were still looking ok. This morning we found out there were no organisms on the gram stain and the cultures were negative. This means he probably doesn't have a perforation because your bowel has lots of bacteria and there was none in his fluid. This evening his dialysis output looked pretty normal. The nephrologist hadn't ever seen anything like this and no one really knows what it was. They have thrown out that it might have been a pocket of old blood or something that got disrupted and caused it. I'm just thankful and continuing to pray that it clears up and he has no more issues like that. Through all this, his vitals have been stable. He had his best blood gas in a couple of days this evening. A lot of his blood gas issues are metabolic. They're having to tweak his IV nutrition to help with that. As I'm sitting here typing this I get a call that they've had to restart the dopamine. More when I can - jc

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Here's a pic of me holding Maverick yesterday before the issues started. We pulled a rocker up beside the bed and I got to rock my baby. It was my first time to rock him. I did it for about 3 1/2 hours. I sat there and rocked him and cried for a little while. He did really well - his sats stayed upper 90's - 100%, his vent pressure were low, and his heart rate went down. He slept. I'm ready to start doing more of this.

Thursday, January 1, 2009

Greg went to see Mav this morning. He called me and said Mav didn't look good. I spoke with the nurse and asked about his labs. H&H were fine, WBC down, CRP down. I asked about his blood gas.... His pH was 7.19, bicarb 20, and base deficit -7. "He needs some bicarb" I say. "Are they going to give him some bicarb? Please go tell the doctors his mom is on the phone and his pH is usually 7.35ish and his base deficit is usually treated if it is greater than -3 to -5." He's gotten 2 doses so far and was getting ready to get a third one when I left. The past 24 hours he's only had IV fluids. They made him NPO (no formula) and he has no central IV access, so he couldn't have TPN (the IV nutrition). I'm guessing without the acetate in his TPN, his pH has drifted down. The nurse said he had a standing order for bicarb with a base deficit of -3 or greater, but I guess no one had noticed it... Hmmm...

One good thing today. They switched the heparin to IV. He's on a continuous infusion of it. I'm hoping we see a quick turn around with his protein losing and IGG deficiency. Some of the articles I've read said you can see improvement in two weeks. He still needs lots of prayers. His infection is improving and he's had no positive blood cultures for several days. They placed a PCL (a peripherally placed central IV) today and he's back on TPN. This little guy just needs a break - I hope the heparin works so we can start moving in the right direction.

The first day of the new year. I was thinking about that this morning. About a month ago I thought that 2009 would be a better year for us and this would be the year I get to take my baby home. I hope I'm right. I've had people ask how much longer he will be hospitalized. Honestly, I don't know. I'm pretty sure he'll be there at least a couple of more months. This has been agonizingly long and painful. I can't imagine how it's been for Maverick. Love you all - jc