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

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

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.

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