My mom and Brown left today. My sweet friends Kristi (from St. Louis) and Kim (from Houston) left today. I was with the kids and Greg at the house, but it was lonely. Greg and I are at about the same place. We really don't have anything to say. I went to the cemetery and sat by Mav's grave in the cold. I held his brown monkey and cried as I looked at all the flowers covering his grave. When I got too cold, I sat in the car and looked at it some more as I wrote in my journal. The only prayer I can utter now is, "Why?" I know all the verses about God's way being different than ours and how we can't understand, but that doesn't change the fact that a piece of my heart is no longer with me. I am thankful that he's no longer in pain, but I really just wanted him to get better and come home. My 11 year-old, Maddie, reminded me tonight that he is home. I have so many things to be thankful for - my husband, three healthy kids, my family, and all my wonderful friends. I realize that, but it doesn't change the pain.
I saw three of my friends through the course of the day after everyone left. One thing I have learned throughout the last 5 1/2 months is that friends really are the family you choose for yourself. I don't know what I would do without them. Some help me get my mind off things, others let me vent, and some cry with me. Thanks to all of you. jc

Today was our sweet boy's funeral. Greg is concerned about me not having an outlet anymore - since writing on this blog has been my "therapy" for the last 5+months. I think I'll just keep writing... Maybe it will help someone else along the way if they have to go down this torturous road.
It was a tough day. I went to the funeral home this morning to hold Mav one last time. I think placing him in the Moses basket, knowing it was the last time I would get to hold his little body, was the hardest thing I've ever done in my life. I hated to leave. I remember going through pictures at my grandma's house and coming across pictures of funerals and the bodies of the deceased. I used to wonder why in the world anyone would want to do something like that. Now I know.
The funeral was just as I wanted it. No depressing music or funeral handouts. If I can figure out how, I'll post one of the cards that were handed out. There was a sweet slide show - I'll post that, too. We had lots of friends and family there. It was nice. After the funeral, we went to Resthaven Cemetery for the graveside service. My friends at Mediflight arranged a fly-over tribute to Mav with all three helicopters flying in formation. It made me cry. I think someone took pics and I'll post those as well. It was hard to leave his little casket there, especially knowing where it would be tonight. I'm crying just thinking about it. This has been such a difficult week.
I'd like to thank our friends and family who have been so helpful through all this process. We have been truly blessed. I'd also like to thank everyone who was able to attend. I know I didn't get to see all of you, but it means a lot to us that you would take the time to be there (thanks, Perky, for coming all the way from the big D - wish we were able to spend more time with you). To everyone who sent flowers and plants, they were beautiful. Thanks again, love you all -jc

Maverick's Obituary

Our precious baby boy, Maverick Donovan Clark, went to be with the Lord February 24, 2009 while being rocked by his mommy with his daddy at his side. He was born September 12, 2008 at Medical City Children’s in Dallas, TX. He had a congenital heart defect called Transposition of the Great Arteries. He had his first surgery at three days old and forged through several other operations and procedures in his short life with an intense fighting spirit.

The week of Christmas, he was transferred to Children’s Hospital of Oklahoma by our sweet friends at MediFlight of Oklahoma. He maintained his fighting spirit there and captured the hearts of many before he passed away. He overcame numerous complications and was a great inspiration to all who knew and loved him.

He taught us to enjoy each day with our children as if it were the last. Through his hospitalization we also learned how much we took for granted the simple things in life - like rocking a healthy baby and even hearing one cry. Even though we didn’t get to hear his little cry much, he let us know what he was thinking with his expressive big blue eyes. His eyelashes were the longest we’ve ever seen.

He leaves behind his mommy and daddy, Julianne and Greg, along with his three siblings, Madeline, Carter, and Chloe; grandparents Don and Marilyn Clark, Mike and Teresa Carter, Brown and Sandy Cabell, and James Champeau; great grandparents Alma Carter Dixon, and Pete and Vanita McGuffey; and numerous other family and friends. Maverick was preceded in death by great-grandparents Charles Carter, Doyle Dixon, L.G. and Jewel Clark, and uncle Donnie Clark. He was a member of the Citizen Potawatomi Tribe, the Navarre Clan. We will all miss him dearly, but look forward to seeing him in heaven.

We would like to thank the amazing doctors, nurses, therapists, and support staff at both Medical City Children’s and Children’s Hospital of Oklahoma for taking such good care of our sweet baby boy. We would also like to thank our families, friends, our church – Immanuel Baptist, and our community of Shawnee, OK. We could not have made it this far without all the help, support, and prayers we’ve received. We would like to encourage those who would like to help to give blood. Mav required a lot of blood and blood products in his life and there are many other babies and children in similar situations. A blood drive will be held in Mav's honor on Wednesday, March 18th from 3:00 - 8:00pm at Immanuel Baptist Church in Shawnee, OK.

Public viewing times will be available at Cooper Funeral Home 210 W. Walnut, Tecumseh, OK 74873 on Thur. Feb. 26, 2009 from 11:00am to 8:00pm, and on Fri. Feb. 27, 2009 from 9:00am to 12:00pm.

Funeral services will be held Friday, Feb. 27, 2009 at Immanuel Baptist Church 1451 E 45th St, Shawnee, OK 74804 at 2:00pm.

In lieu of flowers, gifts for the purchase of a 3-D heart echo machine for Children's Hospital of Oklahoma can be made through Immanuel Baptist Church 1451 E 45th Street, Shawnee, OK 74804.

Multimedia message

I'm posting today knowing this may be morbid to some of you, but this is the first time since the day Maverick was born that I held him without any tubes or wires attached. It's the first time in a long time that we've seen his face without tape on it. I know that you all have shared in many of our ups and downs and realize that many will not be able to go to the funeral or see Mav at the viewing. I posted this for those specifically. The outfit he has on was the one I was planning on taking him home in, and he still had his signature mohawk. Nothing can prepare you for seeing your baby that way. It was so eerie to touch his cold skin and feel how different he is now. I know that he's in heaven, but this little body is the only tangible remainder we have of him now and I just wanted to hold him as long as I could.

Today was busy and difficult for us. We had to go to the funeral home this morning and finalize everything. We then went to the flower shop, where I cried because all the arrangements looked so depressing. The florist is going to do things a little different for Mav. After that, we went to the church to finalize things there, then back to the funeral home for Mav's viewing.

The funeral will be Friday at 2:00 at Immanuel Baptist Church 1451 E 45th Street Shawnee, Ok 74804. Viewing will be at Cooper Funeral Home 210 W Walnut, Tecumseh, OK on Thurs Feb 26th from 11:00am to 8:00pm and on Friday from 9:00am to 12:00pm.

Just to give you a little background on myself, I hate funerals. I have only been to a handful of them in my entire life, so it is very difficult for me to go through this process. When I do go to funerals, I have to find distractions (like counting ceiling tiles or lights or panels on the walls, etc.) to keep myself from bawling the entire time. Seriously, I could go to a complete stranger's funeral and cry the entire time if I didn't distract myself. So, with that said, we're trying to keep things very nontraditional - no hearse, no limos, no little depressing fliers, no Amazing Grace (although I do like the song, but it just makes me cry). If you're planning on attending, please wear something cheerful. Like I said before, please just tell me something positive about Mav instead of telling me you're sorry. If you are one of our medical friends or staff who've cared for Maverick, there will be special seating for you.

To close for today, I would like to thank everyone who is helping us through all this. We've had such an outpouring of love on our family and we are so thankful for each of you. In lieu of flowers, I would like to raise funds to go toward the purchase of a 3-D heart echo machine for Children's Hospital of Oklahoma. They had one in Dallas, and I could tell a huge difference in the quality of the pictures. Maverick had to have a trans-esophageal echo here (where they had to sedate him and place a tube down his esophagus to see his heart) and the quality of the picture was less than that done with a non-invasive echo in Dallas. This machine could potentially lessen the frequency of invasive procedures on babies like Maverick. These machines run in the neighborhood of $400,000. I don't know how close we could come to meeting that goal, but it doesn't hurt to try. If anyone who's reading knows how to start up some kind of fund for that type of thing, please let me know.

One more thing, our church will be having a blood drive in Mav's honor sometime in the near future. I'll post more as details become available. If you live out-of-state, go give some blood and help save a baby! Thanks again. We love you all - jc

Arrangements

The tentative plan for Mav's funeral is Friday at 2:00pm. We have to go to the funeral home tomorrow to make certain that will work. The service will be at:

Immanuel Baptist Church
1451 E 45th St
Shawnee, OK 74804

If you plan to attend, please know that casual dress and/or jeans are welcomed.

This is really a strange time. It's almost unbelievable. I kind of feel like I'm walking around lost. My routine of getting up, calling the hospital, getting kids ready, going to the hospital and spending time with Mav, coming home and spending time with the family, calling the hospital, and going to bed will be no more. I can't believe he's gone. We felt almost numb going to the cemetery today to pick out a plot for our baby. We'll miss him so much. He was such a sweet baby and so expressive with his big blue eyes. You could always tell what he wanted by the look in his eyes. We know he's in a better place, but it really doesn't make this any easier right now. If you plan on talking to us, I know you are sorry. We are sorry, too. To keep me from crying so much, please just tell me something positive about the way Maverick has impacted your life.

I know a lot of you are wanting to help in some way. I would like to ask you to give blood. Mav required soo much blood and soo many blood products during his little life and there are many other babies and children in similar situations. He couldn't have made it as far as he did without the help of the selfless donors. We would also like to thank all the doctors, nurses, therapists, and support staff at Medical City Children's in Dallas as well as those at Children's Hospital of Oklahoma. Mav was well loved and cared for at both facilities. Thank you all so much. We love you all - jc

Our precious Maverick went to heaven this morning. He has been such a fighter, but he is finally at peace and without pain. The bleeding continued and wasn't controlled with blood and platelets. We stayed the night last night and Greg and I both held him. I was able to crawl up in the crib and sleep snuggled up beside him. This morning his heart rate started to slow, so I rocked him and read him Brown Bear while his daddy was holding his hand. We told him how much we loved him and a few minutes later his heart beat wasn't detectable. I was holding his hand when the doctor took out his ventilator tube so we could see his beautiful face. He squeezed my finger and smiled before he took his last breaths. Thanks for your thoughts and prayers during this difficult time. I will post details of the arrangements later.

Just a quick update - I don't have time to let it all out right now. Over the last six hours Mav's H/H and platelets have remained the same - which means for the time being the bleeding has stopped. He's on a lot more ventilator support due to all the swelling, but his last two gases have been improving. He's negative on his I/O's for the night shift which means he has gotten more fluid off than they've put in. Thanks for your prayers and concern. I'll update more later. Love you all - jc

Say some extra prayers for Maverick. He's having a rough time. He's bleeding inside from the attempted heart cath. He's getting more blood this morning, and all that extra volume is making him swollen. He can't open his eyes this morning. The swelling makes it hard for him to breathe, so his vent is back up to a rate of 22. He's all purple from the bleeding - for my medical friends/family he's not in DIC - his coags are fine this morning. They stopped the heparin drip yesterday and gave him some vitamin K then to help with clotting. This is so unfair and I certainly don't understand. The procedure we were hoping would turn things around for him didn't even happen and he's having complications from it. Please pray that the bleeding will stop. He's such a fighter and deserves a chance.

Me and Mav rocking today. His gas was good this morning, but he was breathing fast, so they didn't wean him. We weren't sure if he wasn't tolerating the four hour cycles on the dialysis or what, so that was changed a bit. This afternoon a CBC (blood count) was drawn and his H/H were low - he was low on blood. That explains why he was breathing so fast. He should be better tomorrow morning. Some good news - his white blood count was 14 (that's the count that can indicate infection). That's the lowest it's been in quite awhile. Thanks for the prayers! The cardiologist came back in today and the tentative day for the heart cath is Monday - if Mav seems ready. Other than that, there are no real changes. We'll just hang out over the weekend and work on weaning the vent. Thanks for everything - you all are great and we couldn't do it all without you. jc

Pics from yesterday and today

Greg and Mav yesterday - you can see Mav looking at the camera

This was when I was holding him yesterday.

Sleepy boy trying to rest today after a tough day yesterday.

Poor little guy... His right leg was bruised and painful today. He would cry whenever we messed with it, so he got his pain medicine whenever he could today. I held him and rocked him on my chest for a couple of hours today. That's one of the best parts of my day. He had the vascular study today, and it showed both his femoral veins are blocked - probably from the previous procedures and lines. That's why they weren't able to do the cath yesterday. I'm going to find out tomorrow if they need to change his dose of heparin to help alleviate the clots. He had lots of little changes today. His gas was good this morning so he got an extra wean of two breaths per minute. He should be at a rate of 15 by tomorrow morning. His white count was up again. So far the cultures are negative and he's not acting like he's sick. His steroid type and dose was changed this week, so that may be the reason for the increasing white count. I asked Dr. Gormley how much it could go up if it was steroid-related. He said a hematologist (blood doctor) told him it could go up by any amount at any time. Hmmm... Hopefully that's what's happening with Maverick. I found a case study on the internet last night about the viagra for treatment of PLE and the dosing for it was quite a bit higher than Mav's dose, so we increased his dose today. His feedings have also been changed. Yesterday when he went to the cath lab they had to pull out the carefully placed feeding tube :(. Today he needed feedings started again, so we're trying a different approach since the continuous feedings weren't working so well. He's now getting bolus feedings every 2 1/2 hours with just a regular feeding tube to his stomach, and so far he's tolerating them without vomiting - and he's had no residuals (nothing left in his tummy prior to the next feeding)! The nephrologist asked the lab to change the way they were measuring the protein in Mav's dialysis output (they were reporting in grams per deciliter instead of milligrams). When they did, that showed exactly how much protein he is losing in his dialysis output and it is a very large amount. So, we're changing his dialysis today. He had been on hourly dialysis and now he'll be on hourly for four hours and off dialysis for four hours. This should decrease the amount of protein he's losing in half. Maybe that will help a little. The protein-losing in his dialysis is probably related to the PLE as well. It seems like the loss through the stool is under control and his stools now are actually pretty normal. They've always had a watery component to them, but they don't anymore. There is not a date set yet for the next heart cath. I'm thinking sometime next week. I would like to give the higher dose of viagra time to work to see if it helps any before we subject him to the cath. Maybe that's the reason it didn't happen yesterday...

Still hopeful - jc

No Luck Today

Well, it's been an emotional day. Maverick went in for the heart cath at 2:00 and around 5 or 6 the doctor came out and told us they were unable to do the cath. They weren't able to access the veins in his legs. I just keep telling myself, "there is a reason this didn't happen today - it wasn't the right time." That doesn't make it any less of a disappointment, though. So, the plan is to do a vascular study on his leg veins tomorrow and see if they are there and accessible or if they're not (if they have a clot or clots) in them. Then, if they aren't, they will have to do the cath through his right side and go in through the hepatic vein (a vein in the liver) to do the procedure. It's a bit more difficult and more risky. We'll just have to see what happens over the next couple of days. I know there is a reason for this delay. I just have to figure out what it is.

Maverick had an excellent gas this morning (7.39, 45), so they have decreased his pressure support to 12/5 and are now decreasing his rate by 2 every 12 hours. Curiously enough, his serum total protein level was actually low-normal this morning. That fact coupled with the normal alpha1-antitrypsan level in his stool have me wondering if the drug therapies are just taking time to work. He also had a blood alpha1 antitrypsan level drawn and sent out on Monday - it came back this evening and it was normal as well. I found an article online about the viagra this evening that talked about it taking 6 weeks for resolution of PLE.

Little Mav knew something was going on this morning. He was wide awake and would drift off to sleep and wake back up and look around. Greg and I both held him for quite awhile this morning before he went to cath lab. He really enjoys it now and doesn't even get upset when we're moving him. He just looks around like, "I know what's going on, this is snuggle time." I was able to take pics with my phone, but now I don't have the memory to send them to the blog. I'm going to have to have some help with that issue.

Keep sending your thoughts and prayers. Mav's white count was up again today - pray for no infection and for answers on Mav's condition so we will know whether or not he truly needs the procedure. Thanks so much - jc

Tomorrow's the big day

Well, everyone is on board with the procedure to create the hole between Mav's right and left atrium. It will be happening tomorrow around 12:30. Mav had a pretty good day today. His vent is down to 22. His white count is still hovering around 19 which means he still has some infection brewing. He was awake quite awhile today and I held him for about three hours. He's so sweet. He got a new PICC line today, too. Ok, so tomorrow is a very big day for Maverick. This hole in his heart has to be the right size. Too small and not enough blood will shunt across, so it won't help. Too big and too much blood will shunt across and his oxygen saturations could be too low. This still isn't a sure fix, but it's the best option we have right now. If it works and corrects the PLE - hooray! Please keep him in your thoughts and prayers tomorrow. We need:
1. The hole to be just the right size
2. The pressures in the right heart and his central venous pressure to decrease after the hole is created.
3. His oxygen saturations to remain at an acceptable level
4. The infection to clear completely
5. The PLE to resolve

The PLE won't immediately resolve, but within a few weeks we should start to see some improvement (his albumin level, total protein, immunoglobulins and lymphocytes to rise). I'm praying this is Mav's big chance to make a turn-around. Thanks for your continued thoughts and prayers. Love you all - jc

Busy Day

It's been a busy day for Maverick. Today he went to radiology to have the feeding tube placed even further. It didn't work. They haven't been able to get it past the duodenum, so the radiologist left some slack of the line in his stomach and they're going to start him on some medication to increase the movement of his intestines and see if it will migrate further on its own. His vent rate was decreased to 24. His gas this afternoon was good. Maybe he'll wean some more tomorrow. His white count was at 19 today. That's the first time it's been less than 20 in quite awhile - yea! It just needs to keep going down. He should have a PICC line placed tomorrow. One of the IVs in his scalp is still working well. Greg bought some dressings for his bottom today and we were actually able to get them to stick. They will stay in place as long as possible and hopefully allow his body to heal.

As for the PLE... we got the alpha 1 antitrypsan level back and it wasn't elevated. The doctors think it might not be in Mav because he probably doesn't have much circulating in his blood to lose in his stool. Basically, he still has PLE. His albumin level is still low, he's still losing his lymphocytes and his immunoglobulins. It's a pretty serious condition. They have been trying the treatment with meds and heparin, and the diarrhea has gotten better, but his protein levels aren't nearly what they should be. Everyone kept saying that this usually happen after the Fontan surgery. I started researching fontan surgeries. It seems that fenestrated fontans don't usually have the issue with PLE - I kept thinking, "what does Mav's heart have in common with a fontan heart, and how could a fenestration help him?" I spoke to the cardiologist yesterday about making a fenestration in Mav's heart to help with his high central venous pressures and hopefully alleviate the PLE. He said, "Hmmm, it just might work." He went to look at Mav's last heart cath and called me back and said he thought it might work. Ok, this gets pretty medical (sorry to my non-medical friends, just skip to the end of the paragraph). He said the right side of Mav's heart looks like a fontan heart (with the higher pressures) and said the atrial septum is actually bowing to the left, which shows him making a hole in the atrial septum would create a right to left shunt, which would decrease the load on the right ventricle and reduce his central venous pressure. So, Mav will probably have another heart cath this week where they will go in through his groin and create a hole in the wall between the top chambers of his heart. Please pray this goes well and will alleviate the PLE (protein-losing enteropathy). If this works, it would be HUGE in Mav's recovery. It would allow his body to heal and grow. It would allow his immune system to function better and would probably decrease his edema greatly. Seriously, this would be the greatest thing to happen for Mav in a long time. Keep little man in your prayers - and pray for no more infections! Thank you all so much - love ya - jc

Our little Valentine

This is us with our little guy today. We were having computer issues yesterday, so I couldn't post. Friday Mav didn't act like he was feeling too well. His color was off and he was pretty sleepy. However, on the bright side, he kicked his right foot! The nurse saw it as well, then later that night his cousin, Debbie, who was sitting with him saw it, too! He moved his right leg from the knee about two inches. He is getting his movement back!

Greg was with him this morning and he started acting up. His color was bad and he started vomiting. It looked like poo. They took him down to radiology to give him some barium through his feeding tube to see if it looked like anything was blocked. So far, all is fine. They were going to take one more x-ray after I left - they're following it all the way through his bowels. So, why is he vomiting? That's the question we've been trying to get answered for about a month. The resident tonight said sometimes when the intestines get an overgrowth of bacteria this can happen. We'll see what Dr. G has to say tomorrow. He told Greg today that it's like trying to empty an olympic-sized swimming pool with a dixie cup and when they start making some progress the roof starts to leak. No one has ever accused Mav of being an easy patient.

He did have a good night last night. His gas this morning was excellent for him (7.31, 39), so they've started weaning again, but they're being pretty cautious - maybe even stingy. They're weaning by one breath per minute every 12 hours. I'm hoping that his gas tomorrow morning will still be great and they'll wean a little quicker.

So far the peripheral IVs are still working. We just need them to last until Monday. They're going to put in another PICC line then. Pray that goes easily for Mav.

Want something else specific to pray for?

1. No more infections and that this one will respond quickly to the antibiotics. 2. He will wean quickly from the ventilator without any problems. 3. They will find a solution for his feeding issues and he will be able to tolerate them without throwing-up. 4. He will stop losing protein and the edema (swelling) will improve. 5. His bottom will heal (this isn't just a diaper rash - it's a wound).

Thanks so much to all of you - more tomorrow -love you all - jc

5 Months Old

Our sweet boy is five months old today. Never in my wildest dreams would I have imagined he would still be in the hospital. He had a good night last night. His gas was pretty good this morning, but Dr. G didn't want to start weaning yet. His white count was 24 today - that's down from earlier in the week, but not as low as I'd like it to be. He wasn't quite as awake today and his bottom looked a little worse, but the bottom bed wasn't being used right when I got there this morning and his diaper was next to his skin. Hopefully it will look a little better tomorrow. Baby steps day-by-day - that's all we can hope for, but I'm ready for the full-blown run. I keep telling Mav "We need to make a plan to make a break for it - we're going to run fast and get out of here. You just have to get rid of some of these tubes first."

The kids are out of school tomorrow and Monday. Maddie will be going with me to the hospital tomorrow and we'll take Carter and Chloe to see Mav on Saturday. Chloe really wants to see him. Thanks for the thoughts and prayers - more tomorrow - jc

A Video of Mav

just a little video of Mav today

Sweet Boy

I thought this was a cute pic from today. I took it with the camera - you can see his eyelashes.

A better day

Mav's gas was a little better today, but not good enough to wean, yet. He looked and acted like he felt better and was awake quite awhile today. The peripheral IVs are still working, but one was a little puffy. Another one of my Mediflight friends started another one today in his scalp (thanks Marla). We're trying to get by on peripheral IVs until the first part of next week. I just want to make sure the infection is really cleared up before another central line is placed. The pillow is working for Mav's bottom. It doesn't look any worse and looks less red. It's going to take awhile to heal, though.

Mav got a bunch of valentines from a first grade class today. My friend, Gaynell, brought them by with lunch today. Her sister is a first grade teacher and the whole class has been praying for Mav. They made pictures for him last month. I have them all over his room. They're so cute. It's funny the things kids think of. One picture has Mav on a hospital bed frowning and there's a skunk by the bed. Another one has me throwing Mav up in the air and there's a pink pig under me; then there's one with Jesus calming the waters and he's saying "be cwiite." So cute.

Thanks to Holly for sending the pic to the blog. She's sitting with Mav tonight. I tried to take a picture today, but it wouldn't work. I need to get a memory card.

I've enjoyed hearing from you all and finding out who's keeping up with us. Keep them coming. Love you all - thanks for everything - jc

I forgot to mention on the earlier post that Mav has a new mattress to keep the poo off his bottom. His PT, Peggy, and I rigged a pillow so the poo has a place to go now and it doesn't even touch his skin. Maybe we'll patent it some day...

A bad gas was the way the morning started. The vent rate was increased to 30. His white count was actually down a little (29), but he spiked a temp in the afternoon. Cultures were drawn, but I think it's probably just more of the same infection. All I can say is at least I was prepared. Dr. G had written auto-wean orders yesterday (to wean his rate by one breath every 6 hours) and normally I would be thrilled. However, yesterday I asked him to stop. I told him I knew he would get sicker after the line was pulled and was worried it would be too much for him. So he d/c'd (stopped) the auto-wean. I was expecting today to be worse than yesterday, because that's just how Maverick responds. I remember a day back in December when I went in to see Mav in the morning in Dallas and they had increased his vent rate by 2 breaths per minute and I started bawling. I guess I've just gotten to the point where I realize he needs support when he's sick and he'll wean when he feels better. Hopefully that will be in a few days. It's gotten to the point where I sometimes feel like an observer watching all that's going on, but hardly believing this is my life. I know that God is good and he doesn't give you more than you can handle, but come on now...

They are only getting CBC's (blood counts) on Mondays and Thursdays, so I won't be able to tell how he's doing number-wise until Thursday. That's always been something that's helped me feel better about his progress (or has made me apprehensive when it's not going down). So, I'll just keep a close eye on him (but I always do that, anyway) and pray for the best. Speaking of praying, thanks for your thoughts and prayers - whoever you all are. I know a lot of you, but I'm curious who some of you loyal readers are. There are places listed on the web-tracker that I've never been and don't know anyone who lives there. I'd love to hear from you - you can do an anonymous post and sign your name in the text (that way you don't have to create an account). If you want to keep your anonymity, that's fine, too. It seems like Mav has quite a few people pulling for him.

I was talking to one of my friends the other day and we got on a subject that I'd like to share. I just want people to know that we're not blind to this entire picture of what's going on with Maverick. I've done countless hours of research on all his conditions and have searched for treatments for them all. We're prepared for the battles we'll have to face knowing that much of his future is uncharted territory. No one has ever heard of a baby with PLE, no one has ever heard of a baby with critical illness polyneuromyopathy, no one knows why his kidneys quit working. All I know is God gave him to us for a reason. He knew his momma was a hard-headed find-the-answer optimist and his daddy was the perfect one to get him moving again. When I look in those big blue eyes (with the longest lashes I've ever seen), I know he's a fighter and he's here for a reason. He's a smart boy and knows who we are and knows what's going on around him. His nurse and respiratory therapist said he smiled at them the other day when they were retaping his tube (see, I'm not making it up), and he's getting more movement every day. It's him and God that keep me hopeful. One of the cardiologists asked me the other day if the GI doctor gave me a prognosis for the PLE. I respectfully told him, "No, but I didn't ask. I've done all the research on it, but the truth is any one's prognosis is just their educated guess and my educated guess is just as good as theirs because no one has seen it in a baby." Then I asked him "What chance of survival would you have given a baby to make it through all that Mav has been through?" He just smiled, nodded and said, "You're right."

When we found out we were expecting, the thought never entered my mind that we would have a baby with a heart defect - or any defect. I somehow thought I was immune to those types of issues since I took care of sick babies on a daily basis. What was the chance? To have a baby with a heart defect is one out of 125. To have a baby with TGA the prevalence is 20-30 per 100,000. When we met with Dr. Mendeloff before Maverick was born, I remember him telling us that the survival rate for arterial switch operations was 95% with the 5% mortality coming from difficult coronary artery anatomy. I know I didn't expect our baby to have a difficult coronary artery anatomy. My point to all of this is that statistics mean nothing to me now. For an individual, it's just as easy to be in the 5% as it is to be in the 95%. I haven't asked anyone statistics since that day.

Enough for tonight - more tomorrow. Love you all - jc

PS The memory on my phone is full. I need to delete some stuff so I can take some more pics and send them to the blog. I'll send one tomorrow.

Questionable Progress

Today was a busy day for our sweet boy. I got to the hospital to find out his white count today was 32.5 - that's doubled from just two days ago. I was sooo frustrated. He still had a PICC line in (like a long IV that goes further in your vein) that was there when his blood cultures were positive for pseudomonas. No one wanted to pull it at that time because he is a hard stick (it's hard to get IV access on him). When his blood cultures turned negative they wanted to believe the line was cleared from infection (that PICC wouldn't draw blood, so a culture couldn't be drawn from it). I think today probably proves it wasn't cleared. SOOO, Dr. G said if someone could get two IVs in him, he would pull the line. I asked if I could call the girls (some of my friends from Mediflight). He said "Sure, I don't think you would be stepping on anyone's toes by doing that." My friend Lori came up and was able to get two IVs in two sticks. YEA!! The line was pulled this afternoon. I'm bracing for a higher white count tomorrow - that's what has always happened after his infected lines have been pulled. However, Mav got a dose of antibiotics about 2 hours before the line was pulled. Dr. G said that would be a good time to pull it, because the antibiotic level should be at its peak. I would love to be surprised by a lower white count. The feeding tube is still an issue - he didn't go to radiology today. Dr. G tried to replace it this afternoon once and it wasn't in the right place. He tried again after I left, but I haven't heard the results yet. His bottom is still bad. They are adding zinc to his regimen of medications to see if that will help. Greg and I talked about it tonight and I'm going to Walmart tomorrow before I go to the hospital to find a somewhat firm pillow that I can manipulate to make a hole in so his bottom doesn't come in contact with the poo. We'll see how that works. Mav's blood gas was pretty good this morning - they have weaned his rate to 21. We have to get this infection under control to get him weaned off. Thanks for you thoughts and prayers - jc

Just in - the tube is in the right place!

Wide-eyed

Here's Mav today. No labs other than an Istat this morning (a blood gas with some chemistry). His blood gas was a little better than the day before, so they weaned his rate to 24. I'm hoping tomorrow's is even better. As of now, the plan for tomorrow is to go to radiology to get the transpyloric tube placed in the right spot. There is a new attending tomorrow, so he may decide to try to place it in the unit - I'm not sure. Greg was with him today and I was up there this evening. I held the little guy again. He's so sweet.

Guess what this week is? It's Congenital Heart Defect Awareness Week. I'll try to post some facts about it tomorrow. jc

Greg holding Mav

As you can see, Greg held Maverick today. It's been quite awhile since he has - we were still in Dallas. I know he enjoyed spending time with his boy. Mav acted up a little this morning - he desaturated a little and threw up a few times. He was doing well this evening, though. They were able to get labs and his white count is 16. I was hoping it would be lower. They're going to draw another blood culture tomorrow morning. I'm just so ready for this entire infection to be cleared so he can wean from the vent again and we can get home. His little bottom is still bad, but it wasn't bleeding when I was there this evening. I took some different diapers to the hospital to try. The Pampers they use at the hospital are very nice for most babies, but the mesh-like liner in them sticks to Mav's sore bottom. We'll see if another kind will help.

I was kind of having a rough day today - just wishing he could be home, thinking about how long this has been going on, etc., then I got a call from a sweet friend on my way to the hospital. Kim was in town from Houston, TX and came to the hospital with her sister to see Mav. She cheered me up. I have so many great friends to be thankful for. God always seems to know when I need one to call.

Here's a bit about the kids. Chloe tells me everyday, "We need to get that baby home." Maddie went to a cookout at a friends house this evening and Carter had a friend spend the night last night. All the kids are doing pretty well now. Carter and Chloe both had ear infections this week and Carter's been wheezing. I know this crazy weather has something to do with it. It was 70-something degrees here today - but I'm not complaining.

Enough for now. More tomorrow - jc

Feeling better

Here's the sweet boy today. He was watching his mobile when I took this. He seems to be feeling pretty good. They weren't able to get labs this morning, so I have no numbers to go by. They'll try again tomorrow. His culture from the third is still negative - that means the antibiotics are working for the infection. They are planning on putting in another PICC line (a central IV) on Monday and taking him to radiology to place the feeding tube in the right place. It will be a busy day. Greg is going to be spending the day with Mav tomorrow. It's time for his daddy to get to hold him! More tomorrow - jc

Dr. Mendeloff with Maverick

Dr. M came to see us today and Mav slept the whole time. It was so good to see him and catch up. We miss all of you in Dallas.

Holding Mav again

My phone is finally sending pics again. Here's one from today.

Fairly uneventful day

Mav had another fairly uneventful day today. No CBC was drawn this morning, so no numbers to compare. The blood cultures from the third are negative so far. The cardiologist came by today and said they are planning on treating him for the pseudomonas for six weeks just to be safe (IV antibiotics for six weeks). I held him again today and he seemed less stressed being moved. He stayed awake for just a little while and then fell asleep while I was holding him. We rocked and rocked. His poor little bottom is still painful. We've scrapped the coatings of various things and have gone back to no-sting barrier and oxygen. At least when the oxygen was on it wasn't getting worse. We've had lots of visitors this week and I've enjoyed seeing everyone. We're having a special visitor tomorrow. Dr. Mendeloff will be at Children's in OKC to help with a surgery and he's coming to see Maverick while he's here. We'll be happy to see him.

My phone is still giving me problems sending pics, sorry. I'll post one as soon as I can. Thanks to everyone for sitting with Mav in the evenings and for the great food. Love you all - jc

Me holding Mav

This is a pic from yesterday that I was finally able to send from my phone. That's the same look he gave me today. Isn't he cute?

A Good Day

Maverick had a good day today! His white count was down to 15 - no CRP drawn today. No vent changes. They're only doing labs once a day since he has no access to draw blood (that means he has to get stuck everytime he needs labs). They're doing daily blood cultures until they're negative. The one from the second is positive, but the number of bacteria has been decreasing. That's good news. I held him again today, and he did great. He just looks around and looks back at me like "What's going on?" Hopefully more of the same tomorrow, but with great blood gases - the labs and gas are drawn at 0400. His bottom is still bad, maybe it will be better tomorrow. I'm still having issues with my phone not sending pics, but I'll keep trying. More tomorrow - love you all - jc

Holding our boy!

Ok, I tried to post another video and it didn't work. I let it run all night and it still didn't post. My phone isn't sending pics to the blog either for some reason - sorry. I held Maverick today! It took a bit of manuevering, but luckily my friend Michelle and my stepmom Teresa stopped by just in time to help, film, and take pictures. Thanks to Mav's nurse, Grant, for helping set the room up so holding him will be easier in the future. Mav wasn't sure about what was going on, but he eventually just fell asleep. He acted like he felt better today. He hasn't been able to wean from the vent any, yet, but hopefully soon. His white count and his crp went down today (32 and 124) and his blood cultures from yesterday are still negative. All that means the infection is responding to the antibiotics. We got more good news today, too. The second alpha1-antitrypsan level came back and it was normal. That means there was no protein loss in his stool, which means the heparin - or something - is working to manage the PLE. YEA! His poor little bottom is still bad, but I'm going to try something new tomorrow if it's not better.

More tomorrow. Thank you all for everything! Love you - jc

I took a little video today, but for some reason it won't send to the blog. I'll try again tomorrow. Mav's white count was way up today (39) and his CRP was too (202). They pulled the infected line yesterday and I think that's why. It happened the last time they pulled a line. He was pretty puffy this morning, but Dr. Turman changed his dialysis concentration to 2.5% and he seemed a little less swollen this evening. So far his blood pressure is tolerating the higher concentration. The feeding tube is finally down far enough (transpyloric), so hopefully his NG output (the output from his stomach through the other tube in his nose) will finally decrease. He actually looked better this evening when I left than he has the past few days. He had been sleeping alot, but today he was awake quite a bit. He got a special air mattress this afternoon and I held him while they were placing it on his bed. I'm planning on holding him tomorrow, too. Greg and I were talking about it last night and he said most of the touching he gets is painful (changing his diaper, position changes, etc), and he just needs to be loved on. He did well with it today, so I'm going to try to do it everyday. If one of my other kids were sick, they would want to be held.

I don't know if I posted this or not, but his triglycerides had been high - over 400 last week. The GI doctor recommended starting him on omega-3 fatty acids (fish oil). That started on Thursday and today his triglycerides were down to 199. For those of you with high cholesterol, it might be worth a try.

Speaking of trying things, the bag balm for his bottom doesn't seem to be helping much. His bottom just looks so painful. He starts crying when you undo his diaper. We're back to using oxygen and some of the hospital stuff.

Well, that's all for now. Hopefully I'll have better news tomorrow. Thanks for your thoughts and prayers. Love you all - jc

Just trying to rest

Mav had a pretty rough day today. His PICC line (his central IV line) in his right arm quit working. He had it taken out and then he still needed lab drawn. That meant he had to be stuck several times:( Since he has the infection, he can't have another central line put in now, only peripheral IVs - and those won't draw blood. He was asleep most of the time we were there today. One thing about Mav, when he's sick he sleeps. That's probably for the best. His white count is down today from 18.4 to 17.2, and his CRP dropped from 132 to 42. That hopefully means he's responding well to the antibiotics and the infection is getting under control. His little bottom still looks pretty bad. We've tried everything at the hospital, so I went online and started looking for mom-suggested remedies for raw bottoms. There were several posts recommending "Bag Balm". It's a cream used for cow udders. I went to Atwoods and bought some. We're trying it now. Maybe it will work, what do we have to lose?

Back to the regular routine for everyone tomorrow. That ice last week had all our schedules messed up. Hopefully I'll have some good news tomorrow - jc

Not too happy

Here was Maverick on Saturday. We were changing his shirt and he didn't like it too much. I hate to say it, but a few more setbacks happened yesterday. Mav's white blood cell count was up and so was his CRP. Mav had a blood culture that was positive for pseudomonas. That means he has an infection in his blood. They changed his antibiotic yesterday, so hopefully he'll get better quickly. Along with the infection came an increase in ventilator settings. He's now at 50%, Rate of 20, Pressure support of 14/5, tidal volume is still 24. It seems like every time we see the light at the end of the tunnel something happens and things go black again. He didn't have any fevers yesterday or last night, though. They finally got the feeding tube in the right spot yesterday evening, so hopefully he'll be able to keep most of his feedings down and start growing. His little bottom is looking a little better. We're trying to keep it dry and have oxygen blowing on it. That's about all for now. Greg is up there this morning and I'm going this afternoon. More later. jc