Mav is sleeping a lot today. He hadn't been sleeping much at all and his blood pressure was trending up, so last night they gave him a dose of methadone and he's been very sleepy since then. They went back up on his vent just to let him rest and gain some strength. They're on every other hour dialysis right now. I'm just ready to see him make some great progress for several days in a row.

Greg and the kids went back to Shawnee today. We had a good time together. Thanks to Heather and Anais for letting us stay at their house. I stayed there a little longer today to clean up after the bunch left and when I got ready to leave I noticed the key left for me was the key to the truck. The car was in the driveway :( My sweet sister-in-law, Shelley, and her kids came to my rescue. They picked me up and took me to the hospital. Greg is going to mail my keys down here tomorrow. I think they're all settling in well. I sure miss them. More tomorrow - jc

OK, I had to give all the kids equal pic time on the blog, so here's Carter getting ready to enjoy his ice cream sundae. He could hardly stay still long enough for me to get a picture.

Here's Maddie reading "Brown Bear" to Mav. He loves his books.

Here's a pic of Mav today. You can probably tell he's quite a bit smaller than the last pic.

"I fix him"

This is actually a post from Saturday, I guess I sent the pic on Friday and it put this update under Friday. This is Chloe on Wednesday. The nurses gave her a doctor bag and some goodies. She put them on, looked at Mav and said, "I fix him". If it were just that easy... He's doing fair today. They had changed his dialysis to every other hour and had to go back on hourly because he wasn't getting enough fluid off. He has been urinating a little bit more overall, but still has a long way to go. His BUN is still in the 60's and his creatinine is 1.4. They did a pressure support trial on his ventilator today (it's a little trial to see if he's ready to come off the vent). He didn't do well the first time, but they did it again this afternoon and he did pretty well. His vent rate is only at 8 right now. Hopefully, he'll be off the vent in the next few days. He just looks a little puny today. His fluid from his dialysis catheter is cloudy. They send cultures on it every day to check for infection (so far they've been negative - no infection), and they were sending a sample this evening to check for triglycerides to see if the drainage is chylous (from the feedings). So, we'll just see how things go. He is on his own time schedule. I'm really thinking that home for Christmas is out of the picture unless something miraculous happens. I'm praying it does, though! More tomorrow - jc

This was a close up of Mav yesterday. Sorry I haven't posted in so long. We don't have a laptop and there are only two working computers in the PICU waiting area and they have been taken every time I've tried to use them. Mav is slowly getting better. His BUN (in 60's) and creatinine (1.3) continue to slowly drop. He's still on dialysis and not making as much urine as they'd like, but some is better than none. Today they're planning on doing the dialysis every two hours instead of hourly. Hopefully that will encourage his kidneys to start kicking in a little more. His bottom is getting a little better and they've started feedings through the yellow tube in his nose - it goes directly into his intestines. We're finally getting to use some of the milk I've been pumping. He'll have enough to last him until he's three! They are slowly weaning him from the ventilator. He's still not moving much, he's just so weak from being on the paralyzing meds and from all the swelling. It will probably take him awhile to recover his strength. He's back down to a good weight - meaning they've been able to get all the excess fluid off him.

Maddie and I came up and spent the day with Mav yesterday. Greg wasn't feeling too well and stayed back at the house with Carter and Chloe. We all got to eat a good Thanksgiving meal, though. Thanksgiving is my favorite meal of the year. I love the sweet potatoes and dressing. They have a support group here called "Heart and Hands" and they provided the meal for the PICU. As Maddie and I were leaving, we picked up plates for the others from the cafeteria. The food here is pretty good. Yesterday evening the kids and I went to see "Bolt" it was a cute movie. The kids really enjoyed it. I haven't seen a 3-D movie in a long time and it was much better than the Jaws 3-D from "back-in-the-day"! We've been trying to balance our time with the kids and Mav. We've all been able to go in and see him together several times this week, but there's only so much time Carter and Chloe can take in the PICU - you know?

The Shawnee News Star did an article on Mav, and it's in the paper today. For my family and friends not in the Shawnee area, you can find it online at www.news-star.com. I'll try to update again tomorrow! Love you all - jc

Turkey day with Tim the RT. Mav is checking him out.

Little Mav continues to do well. His BUN is in the 80's today. His weight is down and they have started weaning him from the ventilator. He's had a few issues pop up - he has diarrhea now caused by an overgrowth of bacteria in his intestines. He's been on so many antibiotics, it's not surprising. His little bottom is very raw as well and has a spot that is draining serous fluid. It looks so painful. The wound care nurse has been in and they're putting a concoction of different things on it. Pray that this will heal and he'll get over the diarrhea quickly.



Greg, the kids and I are enjoying our time together. The little ones get a little antsy being at the hospital too much, so we're trying to split up our time. It's just hard for me to leave Mav, though, especially when he's awake. We're very thankful for the house we're staying at. It's been nice to be together and closer to Mav - it's a little more close to normal. I'm just ready to have him home. Thanks for all your posts - I enjoy hearing from you all - love, jc

FW:

Here is Mav today. Maddie and I were in with him for awhile today and he was awake for about 2 hours. His numbers are looking better. His BUN is 92! It had gotten up to 109 - so eventhough it's still high he's going in the right direction. His creatinine is down to 1.6. He's starting to put more out of his dialysis catheter as well. His white blood count was up today - just pray he isn't trying to get another infection.

The kids, Greg and I are enjoying our time together. We'll probably try to do something fun tomorrow. I'll blog more tomorrow. jc

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Here is little Mav today. He had an IV in his scalp and it stopped working - that's the reason for the dark line on his forehead. His weight is down again today. They've changed up his antibiotics a little, and his BUN and creatinine are finally coming down!!! YEA! I'm back in Dallas this evening. I couldn't hardly wait to see him. It's so heartbreaking to have one here and our other three in Shawnee. Thankfully, we'll all be together this week.

The kids and I had a good/busy week in Shawnee. It was so good to see everyone. We really live in a neat community and are blessed to have such great friends and family. My mom left today right before we did. She's staying with her parents in Tuttle until her plane leaves on Monday. That's the longest amount of time I've spent with her in a long time. Those of you who have your mommas close should be very thankful. I do have a sweet mother-in-law close by and I couldn't make it without her. She treats me like her own.

Keep Mav in your prayers. I'm really hoping we can all be together by Christmas or New Years. Love you all, jc

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Mav is awake more today and looking at his mobile and aquarium. Labs are about the same - creatinine down a little, making a little urine, weight is 4.21kg ( about 9 1/4 lbs). Seems like he's heading in the right direction, just needs to get some more fluid off and start making more urine. I'm missing him. I think the kids and I are going to go to Dallas Saturday and stay through the Sunday after Thanksgiving. My sister-in-law, Shelley, has a sister that has a house in Frisco where we'll be able to stay. They are out of town right now. It will be nice for all of us to be together. It's been a long time since we've been able to hang out as a family for more than a few hours.

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Here's Mav today. He's been opening his eyes and looking around. He's doing well with the dialysis. His BUN and creatinine are still high - just waiting for those to come down. He's had a little urine out today. He had his stitches taken out earlier this week and it looks like his incision is healing well. His weight was 4.3 kg today. He's slowly getting there.

The kids and I are doing well. Mom is still here with me. I had lunch with some of my sweet friends today. It's good to see everyone and catch up.

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Looking good. This pic was from 9:45pm this evening.

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Maddie and Mav on Sunday
Maddie, Carter and Chloe with Mav Saturday - he was a sick boy.

Here is Mav today. They have turned off his vecuronium (the paralyzing drug), so he should be able to open and close his eyes soon. It stays around for awhile so it may be tomorrow before he starts moving. His weight today was down to 4.49kg. His blood pressure is remaining stable. His CRP (the inflammation/infection indicator) was <2 class="blsp-spelling-error" id="SPELLING_ERROR_5">creatinine haven't changed much, but hopefully tomorrow they'll start coming down. He had a total of 6mls of urine out yesterday and has had 4mls out so far today. Greg says his color is much better. This little incident has given us quite a scare, and we're not out of the woods yet, but at least the infection seems to be under control.

I'm enjoying being back in Shawnee with the kids, but I miss being with Mav, too. It's a little easier to leave him when he's a little more stable. I try to go about my somewhat normal day, but it's hard to stay focused on anything. It's also difficult seeing his empty crib and bassinet. As for Greg, it seems as if we just see each other in passing right now. He's keeping an eye on the little one and lets me talk to him everyday via cell phone.

Just got another update from Greg and Gloria, Mav's nurse tonight. He is negative 116mls so far today - that means he's lost almost 4 oz of extra fluid. His BUN and creatinine have risen a little, but he's had 16mls (just over 3 teaspoons) of urine out in the last 3 hours!

Mav is hanging in there. His BUN and creatinine are still on the rise (BUN in 90's and creat 1.8), but the drs and nurses tell us that it's not unusual for them to rise for a few days after being placed on dialysis before they start trending downward. They have increased the amount of dialysate they are placing in his abdomen and he is now having 15-20mls per hour net out his dialysis drain. That is up from yesterday. His weight today was 4.55 kg - down 300gms from yesterday. Through all this they have been able to wean him off the epi drip, so he isn't on any drips for his blood pressure now. He's had 4mls of urine out today so far. He only had 4 out for the entire last 24 hour period - maybe he'll break his record tonight. He is still paralyzed and sedated, but they may turn off the paralyzing drug in the next few days. His CRP (lab that indicates inflammation/risk for infection) is now at 8 - down from 24 yesterday - still not normal (for him it's been <2).

I was talking on the phone this morning and started crying. Chloe was watching me and when I got off the phone she asked, "Mom, why you crying?" I told her I was sad that Maverick is sick and I just want him to get better. She said, "Be happy." I said, "I'll try to be happy for you." She said, "No, for Maverick." Sometimes the best advice comes from your children.

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Greg sent this note and pic to the blog around 5:30 this evening:

Last bun 96 crea 1.8, but they are getting more aggressive good pic his face looks smaller

Mav is tolerating the dialysis well. They have been able to pull off a little bit of fluid and his output has been increasing today. If all continues to go well, his weight should be down tonight. He has also started making a bit more urine. Not alot, but better than nothing. Since starting the dialysis they have been able to turn off his nor-epi drip and have weaned his epi as well. The doctors seem encouraged. His BUN and creatinine had been increasing until this afternoon when they were a bit lower. His color looks much better today. He did have pseudomonas in his nasotracheal tube and in his abdominal drainage as well. They have him on the appropriate antibiotics and think the infection is the cause of his recent problems. He is still a very sick little boy, but seems to be going in a more positive direction. To be honest, I was a mess yesterday. He just didn't look good. I read back through my journal (I've been keeping one since before he was born) and it helped calm me a little and put things in perspective. He has been sicker than this in the past and has pulled out of it. There is one Bible verse that I kept coming across and I realized I had written it in my journal several times. It helped me yesterday. It may help some of you who are having your own battles right now: Do not worry about anything, but pray and ask God for everything you need, always giving thanks. And God's peace, which is so great we cannot understand it, will keep your hearts and minds in Christ Jesus. Phil 4:6-7.

Greg and I switched places this weekend. The kids and I returned to Shawnee tonight with my mom and Greg is with Mav in Dallas. It's hard to leave him and just seems so wrong, but I know he's in good hands (his daddy's and the nurses' and doctors'). I've really missed my other kiddos, so it will be nice to be with them.

On a lighter note, you know how I like funny stories? Here's one for you that happened on the way home this evening. My little Chloe is three and is such a flirt with men. We had to stop at a gas station so she could go to the restroom. We pulled up and were parked close to a "biker." He was by his bike when we got out of the truck and started walking in. She looked over at him and flashed him a smile and said, "HI!" as she waved. He politely said "hi" back to her. She then looks at him with a grin and says, "nice motorcycle" in her little three-year-old dialect. He said "thanks" and I just cracked up... We are in for trouble with this one!

I'll post some pics of Mav and the other kiddos tomorrow. Thanks for your thoughts and prayers. Love you all, jc

They placed the peritoneal dialysis catheter last night. Mav didn't like the procedure very well and had to be placed back on nor-epi and they had to increase his epi drip as well. Those are both medications that help his blood pressure. The nephrologist is planning on starting dialysis today as Mav is not producing urine and is not draining much from the dialysis catheter. One of his lab levels that, when elevated, is indicative of infection (CRP) has gone up again for the second day in a row. Please keep him in your prayers. He's a very sick little boy.

Setback

Today Mav's urine output and the output from his abdominal drain have decreased and his BUN has been increasing (it's in the 70's). The general surgeon is placing a peritoneal dialysis catheter right now. They'll leave it in for a few days before using it for dialysis. They're having to do this to get some of the fluid off. He had one good day with a loss and since he's been slowly gaining. He also had some more blood cultures drawn today and was started on stronger antibiotics again. His culture from his nasotracheal tube (the ventilator tube that goes to his lungs) was positive - they haven't actually isolated what it is yet, but they think it's pseudomonas and are treating it. Keep little Mav in your prayers. His nurse tonight said, "He is so tough. He has a strong purpose in this world, we just don't understand it yet." He's been through so much, and is such a fighter. I'm confident he'll get through this as well. Love you all - jc

FW: mav

Mav finally lost some weight yesterday. His weight was 4.48kg. His bun and creatinine are still high, so they just have to try to carefully manage his losses while trying to give him the fluid he needs for circulation. He's still pretty puffy, but not quite as bad. He's very alert when he's awake and still likes his mobile and paci. He has a new rainforest aquarium toy that he also likes to watch. Poor little guy, I know he has to get tired of just laying around. I just can't wait to hold him. He still has two right atrial lines, two central lines, a right femoral arterial line and his left abdominal drain, along with his nasotracheal tube - so I suppose it will still be awhile before that happens.

I had a fun visit from my Shawnee friends Dianna, Dorraine, and Polly today. They got to see little Mav and then we went to lunch at Blue Mesa. We had a great time and laughed alot. Ask Dianna and Dorraine about their aliases next time you see them... Thanks to everyone who sent gifts, cards, and goodies - you all are so sweet and generous. My mom said I am so lucky to have such good friends and I know she's right. I miss all of you.

Greg and the kids are coming this weekend. It sounds like they've had a pretty good week. I can't wait to see them!

I'll try to post later today - jc

FW: mav

Mav has just stayed pretty steady today. His milrinone is off, otherwise no big changes. His weight was up to 4.7kg from 4.6. BUN and creatinine are about the same. His abdominal drain has been putting out a fair amount and he was negative 44mls for the dayshift (his intake and output). The intensivist says they just have to continue supporting him until he can mobilize the fluid - he sounded a bit discouraged today that things aren't moving more quickly.

Mav is two months old today. The nurses made him a card and gave it to me. I just about cried - not because it was so sweet (which it was), but I just thought, "we should not still be here - he's two months old." To say this has been difficult is a huge understatement. Please keep him in your prayers - we need to get this fluid off.

Greg and the kids are coming down on Saturday. The kids are looking forward to seeing Mav. I'm looking forward to seeing all of them. We're having an early Thanksgiving with my mom and brother on Sunday, then mom, the kids, and I will go back to Shawnee. Greg is staying with Mav next week. More tomorrow - jc

FW: mav

This is Mav this morning. His little eyes are red from all the swelling a few days ago. His weight remains stable. No gains - no losses. They have been weaning the nor-epi today and he's almost off it. He's weaned a tad on his ventilator, too. He's been awake and looking at his mobile today. He's just so sweet. I just wish we could speed things up so we can go home! jc

FW: mav

watching toy and sucking on paci. This is from last night.

Mav continues to improve. His weight is down to 4.6 kg (just over 10 lbs) today from 4.7 yesterday. They've stopped replacing the output from the abdominal drain and his blood pressure is tolerating it so far. He's done well on the new ventilator mode and has even been able to wean a little - yea! Everyone seems to be happy with his progress, however slow it is. He was awake on and off all night and didn't really get any good sleep and he was awake alot this morning. It was like he was making up for lost time. His nurse gave him some ativan this afternoon and he slept great for quite awhile. I put his mobile back up on his bed yesterday afternoon and I think he was happy to see it. He's been studying my face when I talk to him like he's thinking, "I remember you."

Mav had some company this morning from his great aunt Sheila and her son-in-law Justin. Justin is a youth pastor here in Texas and has been checking up on us since we've been here, and Sheila came to Texas to see her daughter. She lives in Oklahoma not too far from us. It was good to see them and I'm sure it's reassuring for Greg's mom to hear from someone else besides us that he's looking good. I know how gramdma's tend to worry alot. We are blessed to have grandma's on both sides and even great-grandmas on my side.

My mom is here now and I'm enjoying spending time with her. I don't get to see her as much as I'd like, so this is great. Things seem better when your mom is around - you know? We got out of the hospital for a little while when Mav was sleeping. It helps to get out a little bit.

Alot of people have asked how I'm doing. Just to let you all know, we have all been well taken care of while we've been here. We've found many new friends in the nurses, doctors, and other staff here. They have been so supportive and understanding. I couldn't ask for more caring people. We have been really blessed.

As for Greg, I'm happy to report his back pain has eased up some. He seems to be feeling better than he has in quite awhile. That's a big answer to prayer. He's with the kids, and they all sound happy. I'm glad we'll be able to start switching back and forth so one of us can stay with them. We're so grateful for our families who have been helping with their care, but I know the kids need us there.

I'll go for now. I'll post a new pic tomorrow. Thanks for everything - jc

FW: mav

he's able to open his eyes today.

They have turned off the paralyzing medicine today. He has his little eyes open and is making sucking movements with his tongue, but he's not moving anything else yet. They're trying him on a different setting on his ventilator to see if he'll tolerate breathing some on his own. He's still pretty edematous, so it's a little difficult for him to breathe. Say a prayer for him -hopefully he'll do ok. He's still on all the drips, they'll wean those if they can. Just very slow progress. Thanks for your comments - I enjoy hearing from you all - jc

Mav is doing about the same today. His weight is stable - no losses, but no gains either. They're trying to wean his paralyzing medicine still to see if he'll tolerate it. He's just starting to try to open his eyes. Greg made it home with the kids. My mom is coming down here tomorrow to stay with me this week. All his drips are just about the same. His vital signs are stable. Progress is slow, but at least we're not losing ground. jc

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Here is Mav today. He's slowly doing better and actually losing a little weight for the first time in a long time. He's at 4.9kg today - just over 10 1/2 lbs (I think his high this week was 5.3kg. They've weaned his ventilator a little today and also his epi drip. They've also turned down his vecuronium (the paralyzing medicine) a little and are slowly going to see how he tolerates it. They've also turned off his diuretic coctail and had stopped replacing the output from his abdominal drain (they started replacing it 1/2ml per ml this evening, though). His face is actually looking a little less edematous. We are very encouraged by his progress - however slow it is. jc

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This is a picture of Mav on 11/5. We finally figured out the email option. I'll be able to post more pics now. He's such a strong baby.

Mav has been behaving pretty well today. During the night last night they were able to turn his ventilator down a little bit and decrease his nor-epi. He's had some more output from his abdominal drain. All these things said, it seems as if he's not hanging on to as much fluid. He's still not letting go of much, but I think it will just take some time. At least he's not continuing to gain alot of weight. They haven't made any major changes today and probably won't tonight, either. Greg is going back home this weekend and will stay with the kids next week. I'm staying here and my mom is coming down to stay with me. The next week we're switching places. I had a dream a few nights ago that I went back to work and he was in the hospital in OKC and I would go by and check on him. I SO hope that won't be the case. Just wanted to thank everyone for the posts, cards and prayer-grams. We appreciate all of you. jc

A bit of a rough day today for Mav, but I think he's slowly beginning to do better. The good news is the heart echo this morning looked good. He's very edematous and still holding onto the fluid they're giving him. His labs for his renal function were increased this morning (BUN 40's and creat 0.9) meaning that his kidney function was decreased. They were going to place a peritoneal dialysis catheter this afternoon (a catheter in his abdomen to try to use dialysis to get some fluid off), but the surgeon came in and said he didn't think it was a good idea right now with all the pressure and swelling in his abdomen. They really weren't even very confident at how well it would work, but they were at the point where they were willing to try. Then, they redrew his labs this afternoon and his creatinine was down to 0.5! I'm happy for the small things. They're hopeful he's starting to turn the corner. He always does this after any surgery or procedure and it just takes him awhile to get better. When he's in the middle of this time, it's hard to remember it just takes time for him to rebound and I worry alot. He's paralyzed and sedated right now and has been since yesterday. It's easier for them to ventilate (breathe for) him now with him paralyzed due to all the edema in his chest. He's back on all the drips - epi, norepi and milrinone. They've restarted the diuretic coctail. I think they're planning on taking out his pacer wires tomorrow and his mediastinal chest tube (the tube draining the drainage from his mid-chest - it was placed during his heart surgery on Monday). Keep the prayers going - we want to be home by Christmas! jc

Mav had a pretty good night and has been pretty stable today. He's still on his epi and milrinone drips. He's very swollen today, but it's just his response to surgery (the whole third-spacing/capillary leak syndrome). Everything looks about how they expected. The next few days will just be supporting him while he gets through this post-surgery phase. More later - jc

He's back in the PICU. He looks so much better. His chest is closed and he has a mediastinal tube. I can already tell he's lost alot of fluid. He's on an epi drip and milrinone, he has pacer wires in and is being paced right now. His capillary refill in his feet is brisk and that's a first for him. They're getting ready to give him some blood. We are so relieved and thankful. Hopefully he'll continue to have a good night. Thanks for all your thoughts and prayers - love you all - jc

New update - patch is complete. Mav is off the heart-lung machine and the right ventricular pressure is 1/3 of systemic (normal is around 1/4) - which is wonderful for him. It was 120% prior to surgery. Looks like they won't have to do the homograft! Dr. M is finishing up and will then close. He should be finished in about an hour or so. He came off the bypass machine without any problems and has tolerated the surgery well. YEA! jc

Kathy just called and gave us an update. Dr. M has sewn in the first half of the patch and is getting ready to sew in the second half. After that they will take him off the pump and check the pressure in his right ventricle. He told Kathy he didn't think he would have to do the graft, but they won't know for sure until he's off the pump. More later - jc

Mav wasn't taken to the OR until 3:00pm. Kathy, Dr. M's nurse practitioner, just called and said they just made the incision. That was about 5:30. They were placing arterial lines and another central line and getting him on the pump (heart-lung machine). We should get an update in one hour letting us know if the procedure expanding the pulmonary artery is going to work. If not, that means there is stenosis (constriction) at the valve area. If that is the case, He will have to place a homograft - it's a cadaver artery that will be placed in a spot on the right ventricle and will bypass the stenosed part of the pulmonary artery. This is a more extensive procedure and will require follow-up surgeries as Mav grows. Please pray that he can just fix the pulmonary artery that is there. Thanks -I'll keep you all updated. jc

Pics and a video

10/24/08
10/24/08

11/1/08 - poor little puffy boy

Here are a few recent pics and a video of Mav. I'll put the dates below them. Greg told me they placed an abdominal drain this afternoon and Mav lost 170mls (almost 6 oz) of fluid from it. He says he's looking alot better now and he's making more urine.

Mav had a bit of a hard time after getting out of the cath lab, but they gave him some blood, sedated and paralyzed him, and changed his vent settings and he was doing better this morning when I left. He was restarted on a little bit of nor-epi. He is still retaining alot of fluid and is so edematous again that he can't open his eyes. His BUN was down to 60, so they restarted the diuretic coctail this morning to try to get some fluid off prior to surgery on Monday. I'm back in Oklahoma with the kids until Monday morning, then Greg and I will both be in TX next week for surgery and the following days. Just say a prayer that he can lose some more fluid and stay stable until surgery. Thanks - jc

P.S. I'll post some pics this evening. We're getting ready to go to the park. The weather is great.