Sunday, November 30, 2008
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
Saturday, November 29, 2008
Friday, November 28, 2008
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
Tuesday, November 25, 2008
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
Sunday, November 23, 2008
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
Saturday, November 22, 2008
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
Thursday, November 20, 2008
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.
Wednesday, November 19, 2008
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.
Tuesday, November 18, 2008
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!
Monday, November 17, 2008
Sunday, November 16, 2008
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
Saturday, November 15, 2008
Friday, November 14, 2008
Thursday, November 13, 2008
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
Wednesday, November 12, 2008
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
Tuesday, November 11, 2008
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
Monday, November 10, 2008
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
Sunday, November 9, 2008
Saturday, November 8, 2008
Friday, November 7, 2008
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
Thursday, November 6, 2008
Wednesday, November 5, 2008
Tuesday, November 4, 2008
Monday, November 3, 2008
Saturday, November 1, 2008
P.S. I'll post some pics this evening. We're getting ready to go to the park. The weather is great.