Baby Maverick

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

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

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

Wednesday, December 31, 2008

Chloe

Chloe started drinking a 5th again. Stress has taken its toll.

Greg sent this to me this evening when I was at the hospital with the caption. It made me laugh.

Happy New Year

Well, little Maverick seems like he is improving. His white count was down a little today and his CRP was about the same. He remains on a little dopamine, his edema has improved, and he was acting like he felt better. As you can see, he was quite awake today. I gave him a bath and changed his clothes. The RT and nurse moved the ventilator to the same side of the bed as his pumps so I will be able to hold him. I didn't today, because I wore him out after the bath and he was fast asleep. This little guy is just amazing - he just fights as hard as he can everyday. I hope things will start to get easier for him.

They began heparin today. It's a "blood thinner" and it's used to treat the protein-losing enteropathy. They are giving it sub-cutaneous (just under the skin), but since he's so edematous it seems like he just leaks it right back out. I'm going to try to find some info on the internet about giving it IV. If any of our Dallas doctors are reading this and have treated this condition with IV heparin, please let me know and give me the dosing you've used. The doctors here and the one they consulted with in Houston have never seen it in a baby. Does that surprise you? It doesn't surprise me at all - little Mav has to be unique in every way. I hope he responds well to the heparin therapy. Keep saying prayers.

I hope you all have a Happy New Year. I received this email from a friend and it made me cry. I thought you all might enjoy it. It seems appropriate for the new year.

Recently I overheard a mother & daughter in their last moments together at the airport. They had announced the departure. Standing near the security gate, they hugged & the mother said,'I love you, & I wish you enough.' The daughter replied, ' Mom, our life together has been more than enough. Your love is all I ever needed. I wish you enough, too, Mom.' They kissed & the daughter left. The mother walked over to the window where I was seated. Standing there I could see she wanted & needed to cry. I tried not to intrude on her privacy, but she welcomed me in by asking, 'Did you ever say good-bye to someone knowing it would be forever?' 'Yes, I have,' I replied. 'Forgive me for asking, but why is this a forever good-bye?'. 'I am old, & she lives so far away. I have challenges ahead & the reality is - the next trip back will be for my funeral,' she said. 'When you were saying good-bye, I heard you say, 'I wish you enough.' May I ask what that means?' She began to smile. 'That's a wish that has been handed down from other generations. My parents used to say it to everyone.' She paused a moment and looked up as if trying to remember it in detail, & she smiled even more. 'When we said, 'I wish you enough,' we were wanting the other person to have a life filled with just enough good things to sustain them.' Then turning toward me, she shared the following as if she were reciting it from memory.

I wish you enough sun to keep your attitude bright no matter how gray the day may appear. I wish you enough rain to appreciate the sun even more. I wish you enough happiness to keep your spirit alive & everlasting. I wish you enough pain so that even the smallest of joys in life may appear bigger. I wish you enough gain to satisfy your wanting. I wish you enough loss to appreciate all that you possess. I wish you enough hellos to get you through the final good-bye.

She then began to cry & walked away. They say it takes a minute to find a special person, an hour to appreciate them, a day to love them; but then an entire life to forget them.

To all my friends & loved ones, I WISH YOU ENOUGH...

I've been busy with Maverick and the kids. Hopefully things will slow down a little and I'll be able to keep this up better. Mav has had us on a roller coaster ride the past few days. His infection seemed to be responding well to the antibiotics and his white blood count and his CRP had decreased. However, yesterday they pulled out his PCL (his central IV) and last night he started dropping his blood pressure. They started dopamine for his pressure and he responded well to a small amount. Then this morning he spiked a temp of 39.2. I think when they pulled the PCL he probably got a big sprinkling of the bacteria that were stuck to the sides of it. That's just my opinion. So, he had a pretty rough day and of course he started getting very puffy again. They've changed his dialysis back to hourly dwells to get some of the extra fluid off. When I left tonight (Tues) he looked much better and hadn't had another fever since this morning. I think he may be turning the corner. He's had us pretty worried the past few days.

I didn't take a picture today, but I will post one tomorrow. When you see it, you'll notice his breathing tube is now in his mouth. That's a whole different story... Greg went to the hospital on Sunday during the day with Carter and the girls and I went to church. I traded with Greg that afternoon and was at the hospital around 4:00 in the afternoon. I went in and started doing my regular things - changed his shirt and changed his linen. He didn't tolerate it as well as he usually does and was dropping his oxygen saturations. He was also breathing a little harder and faster than normal for him. I asked the nurse what his H&H were (his red blood count). She said 8 and 22. I asked if they were going to transfuse him (give him some blood - in Dallas they had been keeping his hematocrit in the 30's). She went to talk to the resident and they ordered another CBC to recheck and make sure the readings were correct - they were and he finally got some blood late that evening. Well, if you don't have enough blood, you tend to be tired. He wasn't his usual awake self, but had been awake for awhile that evening while I was there. I finally left around 11:00pm since he seemed to be settling in an doing better. I got a call at 4:00am and the nurse said she just wanted to let me know that they had decided to do a CT scan of his head and during that he extubated (his breathing tube came out). WHAT? To say I was mad and upset would be an understatement. My first question was "WHAT?" The answer was,"he extubated and he was re-intubated orally." She just wanted to let me know so I wouldn't be surprised when I came in the next morning. Thanks... My sweet boy who loves his paci and was having a rough day because his hematocrit was low was going to be taken through the bowels of the hospital at 2:00 in the morning to check on his head because "he was lethargic". You would be lethargic, too, if you were used to having a crit of 35 and it was now 22. Due to someone's carelessness, he now lost his naso-tracheal tube and had to be re-intubated orally. It's hard to suck a paci being intubated that way - especially the kind of paci he likes. I couldn't go back to sleep, so I got up and dressed and went up to the hospital. When I arrived, I calmly said, "Ok, tell me how it happened." She told me, and it happened as they were unhooking him from the vent, getting ready to bag him to take him to CT at 0200am. At least they were still in the unit and the resident was able to intubate on the first attempt. I still don't quite get it though. I've been doing transport for almost 4 years and have moved many babies to and fro across the state with tubes and have only lost one. The one I lost was in the back of a bouncy ambulance with a baby that was thrashing his arms around and pulled the tube out. If you pay attention, things like that shouldn't happen - especially with a naso-tracheal tube. I then asked why they decided at 0200 that he needed a CT. She said it was because he was lethargic. I told her I didn't understand that decision and it made no sense to me. He was lethargic because he his crit was low. And she knew how touchy he had been, so I didn't see why they decided to trek him through the hospital in the middle of the night if he was in no obvious distress when they could've waited until the morning and had a head ultrasound done at the bedside. She just said the doctor wanted it done. When things like that happen, I feel like I should never leave the hospital. I didn't pursue it any further, but I'm not sure I'm letting that issue die that easily. One of my friends came to the hospital tonight and said I should let it be known that I don't want him transported anywhere in the hospital without me being present unless it is a life-threatening situation. I think that's probably a good suggestion. If you have a better way of handling it, let me know. I certainly don't want to be the mom that no one wants to deal with, but I've come to the point where I really don't care. I just want what's best for him. Sorry, just having to vent a little this evening.

What else? They did a tracheo-esophageal echo on his heart yesterday to check for vegetation again. They didn't see anything obvious. He's still on antibiotics and probably will be for quite awhile. They're probably going to treat it like an endocarditis with his history unless his cultures become negative quickly. The stenotrophamonas is sensitive to bactrim and ticar - so he's on both of those. They also sent his PD fluid (the fluid they drain from his abdomen with the dialysis) off for analysis yesterday to see if that's where he's losing his protein. He's having to get albumin twice a day to keep his level up. Surprisingly, his level was low in his pd fluid. They've sent off a stool sample to see if that's where he's losing it. They are suspecting he has a condition called "protein-losing enteropathy". It's a condition that is usually found in children who have a different kinds of heart defects after a surgery called a fontan procedure. Mav had transposition and had a different surgery (arterial switch). From everything I've read about it, though, it sounds like this is what Mav has. It would explain his low albumin levels, his edema, his pleural effusions, and the continuous need for IVIG (immune globulin). We'll have to see what the results say. They had to send his stool sample to a lab outside the hospital, so it will take several days to get the results back. There was a venous study done today - they were checking for blood clots. His little head swells up when he gets sick. That's just him, though. The preliminary results show a clot in his left femoral area (left groin area), probably from a previous central line. He had one there a while back and when it was removed, his leg turned an awful color for a day or so. That's probably why.

So, that's the catch-up for now. Greg and I are emotionally exhausted, but poor little Maverick. I just don't understand why all this keeps happening to him. This has been horrible. It's awful seeing your child go through all this. I can't believe it's been over three months and we're not closer to being home. I just have to pray that Mav will heal up quickly and that we'll have the endurance to sustain us. Sorry to be such a whiner, but that's just how I'm feeling tonight. Praying for better news and attitude tomorrow - Love you all - jc

Saturday, December 27, 2008

Sleeping like a baby

Here's little Maverick this evening sleeping with his monkey. I was getting ready to leave tonight and I rubbed his head and played his music and he went right to sleep. His CRP is down to 8 today - much better. He's back on feedings - 1/2 strength portagen at 10mls/hr. They're trying 1/2 strength since the full strength gave him diarrhea. His dialysis is still going well. He's still just peeing a little with every or every other diaper change. They weaned his tidal volume on his vent today to 25 (from 30). He looks good, and he stayed awake a lot today. The docs have decided to try him on epogen (it's a medicine that helps with red blood cell production). I guess that will start tomorrow. No other big changes. He's having therapy twice a day, every day. That should help loosen him up a little. His little arms and legs are so tight.

Greg is feeling better. He went to see Mav this morning and then I went this evening. I think that's the plan for this next week. Love you all - jc

Friday, December 26, 2008

mav

Maverick had a good day today. His CRP was down in the 40's and his white count was down to 13 as well. This means he's responding well to the antibiotics. They isolated stenotrophomonas in his blood and he is on the antibiotics he needs (they have him on bactrim and miropenum). His heart echo today showed no growth on his tricuspid valve (yea!). Hopefully he'll just need one to two weeks of antibiotics to get this taken care of. He met his great-grandparents and aunt Cindy today and his great-grandmother yesterday. I don't remember who, but someone commented on how small he is and said he looks bigger on the blog. So, I took this pic with my hand just for reference. He's still pretty small. Weaning from the vent is off until this infection is a little better. More tomorrow - jc

Thursday, December 25, 2008

Merry Christmas!

Here's my wild boy today. The past two evenings he's been awake for 3-4 hours in a row. He's happy just to look around, watch his mobile and listen to whatever we have to say. We've had lots of visitors - thanks to everyone. I enjoy seeing you all.

So, here's the scoop on how he's doing. Yesterday evening he started breathing a little too fast for him. His temp was 37.4. He's been getting a little warm since a few days before we left Dallas, but I had been attributing it to the fact that he's now wearing clothes and he was just getting too hot - especially if I put a hat on him. He's mostly just had his diaper on since he's been born. Hmmm... The nurse tells me his white count was up - up to 20. I ask what his CRP was but they hadn't done one. I told the nurse I was worried he might be getting an infection, so the resident came in and we talked. I told her Maverick has been extremely sick before, but has never had a fever. So, they cultured him and he's growing gram negative rods - already. They started miropenum and vanc, then added gent this evening. They drew another culture from his arterial line after the first dose of antibiotics to see if it still came back positive - if it did they would pull the arterial line out. They pulled the art line out this evening. It grew that quickly. They drew a CRP yesterday evening when they got the cultures - 116. Yes, 116. I had to clarify - not 16? No. Today it was 170-something, but his white count came down to 15. He's not really acting sick other than occasionally being a little warmer than normal, (he's usually around 36.5) like 37.0-37.4, and being tachypneic. I've just been keeping a close eye on him... So, my fear? The questionable endocarditis a few weeks ago was actually endocarditis and wasn't treated for long enough due to no positive cultures. He's getting an echo tomorrow to check for any vegetation. We'll see what happens. He's a strong little guy and doesn't even seem to notice he's sick. They upped his vent rate to 20, but have turned it down to 18. His gases remained great, they just wanted to reduce his work of breathing. Say some prayers that he'll respond quickly and this won't set him back too much. He's had several good days lately.

On to Christmas, the kids enjoyed the day. Greg has had a virus and was laid up in bed. The kids and I went to the hospital to see Mav and then went to my grandparents house for lunch. Then Maddie and I went back up to the hospital and just got back home. I'm tired. I was thinking about the story of Christmas from a mother's point of view. I've had such a difficult time dealing with the "what ifs" with Maverick these past few months. I can't imagine having a son, knowing that someday he would be crucified for others sins - and having to watch it take place. Just something to think about.

Thank you all so much for your continued support, prayers, and generosity. Love you all - jc

Tuesday, December 23, 2008

FW:

This was Maverick this morning. He was resting well. He's had a great day. Still weaning on his vent and his gases have been great. His current vent setting are 35%, R12 (yes, 12!), PS15/5, TV30. His pH has been around 7.4 and his CO2 has been in the 30's. People have asked me why I think he's doing so well - I say he likes Oklahoma.... But seriously, the only thing I can think of is that he's probably had that pleural effusion cooking for awhile and that's why he wasn't able to wean very well from the vent while we were in Dallas. With it now resolved, he's weaning like a champ. So far no re-accumulation of the fluid. The best Christmas present would be for him to be extubated! Keep saying your prayers - we're having lots of them answered lately!

He had a neurology consult today for his continued weakness, and they say he has ICU myopathy. There are several risk factors for it (paralytics, sepsis, steroid administration, and prolonged ICU stays) and he's had all the above. The good news is he can recover from it and the doctor said it doesn't usually affect the muscles used for breathing (which means he should be able to wean off the vent fine). The not so good news is it usually takes about 4-6 months to recover. The doc also said he's never seen it in a patient this young. Leave it to Maverick. He is getting a bit stronger though and is moving his head alot more on his own.

I was able to see many more friends today - thank you all! Maverick was able to see his poppa jellybean (my dad), Maddie, Carter, Chloe, his aunt Jan and uncle Bob today as well. It's been so nice to have him close to home. I'll update you all tomorrow - love you all - jc

FW:

Here's Maverick today looking sweet with his mohawk and his clothes on.

Monday, December 22, 2008

Where am I?

We made it! We left Dallas a little later than I anticipated, but nevertheless, we are all in Oklahoma tonight. Mav did great on the flight. I'm sure it was due to the excellent care from Mike and Kim, and from the superior flying skills of our expert pilot, Max. Thank you all so much for coming to get Mav. When we arrived in the PICU his eyes got wide and he looked at the people around him like, "Who are you and where am I?" He is transitioning quite well. I was a little concerned about my sensitive boy and the big change, but he's handling it like a champ. He was even able to wean on his vent after arriving (TV to 30 from 42). Everyone in the PICU here has been great and it's been nice to see so many friends and familiar faces. We were met on the helipad and escorted to the PICU with an entourage of our Mediflight people. Mav has a little fan club going here. Once he was settled, I was cleaning his mouth and I'm almost positive he smiled. I tried to get him to do it again, but couldn't. I'm going to keep trying. Maybe I'll get it on camera next time so I'll have proof.

I'm sure the next few days will be busy. Maddie, Carter and Chloe haven't seen their little brother since Thanksgiving, and there are grandparents, great-grandparents, aunts and uncles that still haven't seen our little guy. We got a great Christmas present this year - Mav is doing well and we are all closer together. God is good. Thanks to you all for your thoughts and prayers - jc

FW:

Loaded in the isolette and ready to go.

Sunday, December 21, 2008

FW:

This was my view this morning - so sweet. I got to hold Mav again! A special thanks to Lutchmee - she has been Mav's nurse the past several days and she's been very pro-active about getting him in different positions and making it possible for me to hold him.

We have the transport arranged for tomorrow. Mediflight (my friends) will be coming to get him. We should be back in Oklahoma around 12 or 1 tomorrow afternoon. It will take a while to get him settled in, then Greg will meet me at the hospital. I'm excited, but nervous at the same time. He's been doing great, so I think he'll do fine on transport. We've just been here so long and everyone knows him and his little quirks. They know how to deal with him when he gets sick, etc., etc. It will be so nice to have our family together again, though. So, to all Mav's doctors, nurses, therapists and support staff, THANK YOU FOR EVERYTHING. We appreciate each one of you so much. You'll always have a special place in our hearts.

Also, a special thanks goes out to our church. They had a benefit dinner for us tonight. I know it took a lot of people and a lot of time - I know that's precious around the holidays. Thank you all - each one of you have been amazing and we appreciate your support throughout all this. I'm ready for things to be close to normal and for us to be able to be a part of our church again. It's been difficult with all the going back and forth and instability. To be honest, sometimes it's just hard to see people you know - people that care about you and your family. It's just a set-up for lots of tears. Hopefully, the worst is behind us and it will be an easy road from here on.

I'll let you know how tomorrow goes. Love you all - jc

Saturday, December 20, 2008

I'm now in Texas. Mav has had a good day. We're hoping for a good night tonight and another good day tomorrow. Hopefully we'll be able to transfer him soon. He's continuing to wean slowly from his vent (40%, R20, PS 16, peep 5, tv 42). More tomorrow. jc

Friday, December 19, 2008

FW:

Here's our sweet boy today. He's had a pretty good day and they're weaning his vent a little. Greg came back today and I'm going to TX tomorrow. If all goes well, we would like to transfer him to OKC the first part of the week. If it looks like he won't be going to Oklahoma, Greg and the kids will go to Texas on Sunday or Monday. We didn't even decide on this plan until late this afternoon. We truly have to just take things as they come. We're having some difficulties with the insurance approving this transport, but we can still have him transported before their approval and take things up with them later. It just seems like he'll do well for awhile and then something happens and he has a set-back. We would like to catch one of the good windows and take advantage of it. Hopefully he'll stick with the plan this weekend.

I've received many beautiful Christmas cards this past week. I have always loved sending Christmas cards and letters, but I'm taking a break this year. It just doesn't seem right to send one without having Mav home. So, don't take me off your lists - I'll be back at it next year. jc

Thursday, December 18, 2008

FW:

Little Mav slept alot today, but Greg said when he was awake he was very alert and looked like he was trying to smile. Wouldn't that be a great Christmas present? He's had a pretty good day. They've been able to wean his vent a little bit and his gases have remained good. He's back to two hour dwells on the dialysis. He's still putting out a little bit of urine with several diaper changes per day. It would be nice if we opened up his diaper one day and it was just soaked. I would jump for joy.

It was a dreary evening. My sister-in-law, Jan, picked up the kids and I made a cup of hot chocolate, put on some warm fuzzy socks, popped in a Christmas CD, and wrapped Christmas presents. I thought about all the things I have to be thankful for and just praised God that Mav is doing better. Maybe if all goes well tonight and tomorrow we'll be able to get him up here before Christmas.

The kids and I are still unsure about our plans for the weekend. We'll have to see how Mav behaves tomorrow. jc

FW:

This was a pic today from Greg.

Our lil pup resting well

Wednesday, December 17, 2008

Mav's last blood gas was better. His output from his chest tube is only about 2mls/hr (about 1/2tsp) - he had put out over 150mls since it was placed yesterday evening. His vent settings are still pretty high, but they're hoping that they'll be able to wean him some in the next day or so. They think the compression from the fluid in his chest caused his problems. They say his chest x-ray looks better and believe he is re-recruiting some of his alveoli (basically they think his lungs are working better). He'll get better, it just might take awhile. We're just going to see how the next few days go to see when he'll be able to transfer to OKC. We're hoping before Christmas, but I don't want him to go until he's ready. Thanks for all your thoughts and prayers. I'm so blessed to have you all. jc
Mav isn't doing well today. They've had to go up even more on his ventilator. His chest tube output has slowed down, though. I don't know what's going on with him, but all I can do is wait and pray.

Tuesday, December 16, 2008

Just got a call from Greg and the most recent gas is much better. We were hoping to transfer Mav to OKC tomorrow, but due to the recent problems and the weather it looks like we'll wait and just play it day by day. It's just so frustrating that one day he's doing great and the next he's not. I've tried to tell myself to step back and not get so concerned over a few bad results or setbacks, but I think it's impossible not to. It looks like the kids and I may be going to Dallas this weekend. We'll see how things go tomorrow.

Carter had his Christmas program at school today. It was very cute. Chloe, Maddie and I enjoyed it. Chloe talked about it the whole way home and all evening. I've been trying to be "present" with the kids and enjoy them while I'm here (it's hard when Mav is acting up, though). This evening we made some white chocolate pretzel sticks and Christmas cookies. They had fun. For some reason I haven't been able to send pics to the blog from my phone, but I'll try to post one of them tomorrow and I'll have Greg send one of Mav. More tomorrow - jc

Frustrated

Sorry for no post yesterday. I was on my way back to Oklahoma in the afternoon and ran into some weather around Atoka, so the trip back took a little longer than normal. He was having a great day and had weaned down to a rate of 16 on his vent. On the way back I called to check on him and he had taken a turn. They had moved him to a different room and things just went downhill from there. He's back up on his rate, his pressure, and his tidal volume and today was another difficult day for him. Greg left late last night and drove to Dallas. By the time he got there, Mav's gases were better (he was doing better on the ventilator). Sooo... today they saw a pleural effusion and had to place a pigtail catheter (he has some fluid in the space between his lung and the inside of his chest wall that needed to be drained) and they decided to change out his vent tube because the cuff was leaking and they thought maybe that was the reason for part of his problems.

Just talked to the nurse - his blood gases are bad. Please say yet another prayer for our precious baby boy. jc

Sunday, December 14, 2008

FW:

I got to hold Mav today - sitting in a real chair - not just on top of his bed! He's doing well. His vent rate is down to 18. I think they're just going to have to wean him very slowly. He has been putting a lot out of his dialysis catheter and the docs seem to think maybe he's beginning to mobilize some fluid that is trapped in his arms and legs. I really hope so. I can't wait to see him start moving around more. No other changes today. They're going to start feedings tomorrow and give his bottom one more day to heal. It looks much better. Love you all - jc

holding mav

Saturday, December 13, 2008

Santa Baby

Here's our handsome boy in his Santa hat. He had a bad blood gas this morning after they tried to wean to a rate of 10 (for my non-medical people he didn't like them trying to wean him from the ventilator). His dialysis was also changed to 3 hour dwells at the same time and he was sitting up in a bouncy seat. Maybe all that change was just more than he could handle. I'm just praying he's not trying to get sick again.

There was a Christmas party at the hospital today put on by the "Heart n Hands" group. It's a support group for the families of pediatric heart patients. I had contacted them earlier on in the month and told them I wanted to meet someone who had been here for a very long time and had lots of complications and still had a good outcome. I met a little boy and his grandma that were here for six months before he got to go home. He had many complications and had to go home on a ventilator with a trach. Just seeing him walking around without any tubes helped me tremendously (no more trach either). There was another mom I met that said, "Just think, next year you'll be here visiting with him and you'll wonder how you got through it" - I really hadn't thought about it that way until she said it. Mav is such a strong little boy. I know we'll go home and be here to visit at next year's Christmas party. I just hope we're closer to the end of this journey than the beginning.

I was watching a tv show this evening in Mav's room with a little boy who had some severe medical problems and is now better. His mom said, "We walked through a valley, but the ending was glorious - he's just a miracle." Someday that's what I'll say, too. Thanks for everything. Love you all - jc

PS - Thanks to those known and unknown people who have blessed us this holiday season and throughout this time. Your generosity is overwhelming. May God bless you ten-fold.

Friday, December 12, 2008

FW:

Mav is three months old today. The nurses had a little party for him and brought in a cake. He was pretty awake for quite awhile today. As you can see, he now has a shirt on. I put one on him yesterday and just started bawling. Poor Jenny and Sheila (the nurse and RT) had to put up with a crying momma yesterday. All I could think of was the fact that he was almost three months old and that was the first time I'd been able to dress him. I just wonder how much longer this will be.

He's down on his vent to a rate of 12 (40%, R12, PS 12, TV 25, Peep 5). Hopefully he'll be able to maintain that overnight. He's still off the formula. They're going to let his little bottom heal some more and then try a different formula in a few days.

Greg and I made a pretty big decision yesterday. We're going to have him transferred to Children's in Oklahoma City next week. It was a tough decision to make, but we all need to be together. Right now he's just mainly weaning from the vent and they're having to tinker with his dialysis and medications. Since his heart is ok now, we feel like it's a good time to have him transferred. The weaning process and getting him to the point where he can be discharged may be several weeks away or several months. One thing we have learned through all this is that Maverick sets his own schedule. We won't be home by Christmas (which makes me so sad), but at least we'll all be back in Oklahoma together.

We'll really miss the all the great people here. We have received the best possible care and it's a little hard to leave, but it's the right decision for us now.

Thanks for all your continued thoughts and prayers. We appreciate each one of you. Love you all - jc

Thursday, December 11, 2008

Not much different with Mav today. They had to go up to a rate of 16 last night on his vent. They've changed dialysis to two hour dwell times. We're just kind of in a holding pattern today. He was awake and alert for a few hours this evening. I'll send a pic to the blog. Love you all - jc

Wednesday, December 10, 2008

Mav is getting a little better. He's back on full feedings - they've changed his feedings from breast milk to portagen (which has given him diarrhea again and his little bottom is red and raw again) and they've slowly started weaning on his ventilator again. They're not actually sure if it is endocarditis or not. All his blood cultures have been negative so far - usually they would be positive with that type of infection. The doctors say they wouldn't have expected such a quick turn-around if it was actually endocarditis. The area in question in his heart was smaller yesterday - they say it could be a clot caused from one of the lines (central IVs) he has. They're going to treat him with all the strong antibiotics for 7-10 days and then re-evaluate everything. One good thing - he's peed several times over the last two days after no urine output for over a week. It's not nearly a normal amount, but it's better than nothing.

Greg flew back home today to be with the kids. We're coming down here to spend the holiday break. We're going to try to make this Christmas as good a possible for the kids. They have been such troopers through all this, but their patience is wearing thin. It's just been such a long journey and we're so ready to take him home. Love you all - jc

Monday, December 8, 2008

They were able to stabilize litte Mav pretty quickly last night. He has responded well to the treatment and has weaned off the nor-epi. He's just on a small amount of epi. They've restarted his feedings at a lower amount. They think he has endocarditis - an infection in his heart. They could see "vegetation" on his tricuspid valve. That means they see a clump of something on the valve separating the upper and lower chambers of the right side of his heart - probably some kind of bacteria or fungus. They have sent blood cultures to figure out exactly what they're dealing with. They will repeat a heart echo tomorrow and see how it looks. Dr. M came in and spoke with Greg last night and said that this is treatable - it just takes 4-6 weeks of antibiotics. If he regains his strength and is able to wean off the ventilator before then he can go home on antibiotics. They had to go back up on his ventilator during all this. The nephrologist came in today and said maybe this infection is what has been keeping him from mobilizing the fluid (the swelling in his arms and legs). He has been putting a lot out of his dialysis catheter today and they've had to slow down on that. He's back on two hour dwell times for now. He's still a sick little boy, but we're encouraged he's responded so well and so quickly. For my medical friends, his CRP and wbc went down today - yea! Thanks for your thoughts and prayers - love you all - jc

Sunday, December 7, 2008

Little Mav has gotten very sick. He has an infection and is back on the epi and norepi. Please pary for his recovery. I'm leaving for Dallas on SW airlines this evening. jc

Saturday, December 6, 2008

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All played out - the last pic of the night.

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Another one of Mav. video

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Here's Mav in the bouncy seat. video

Here's a pic of the kids today at breakfast with Santa. They had a good time. Chloe kept trying to sneak back up to Santa while other kids were getting their pictures taken. It was nice to see my friends and everyone back in Shawnee, but it seems so odd to be doing something fun while Mav is in the hospital. I'm trying to be "normal" for the kids, but I'm back in that mode where I can't concentrate on anything. I just keep thinking about him. Maddie was insistent on putting up some decorations outside today, so she did. She did a very good job. She lined the walkway and two trees with lights and put our inflatable Santa up in the yard.

Mav had some big moves today. He was moved to a crib from the warmer. Greg says it looks much more comfortable. Mav also got to sit up in a bouncy seat for awhile today. Greg said he loved the toys on it. He took the toy bar off one time and Mav started to cry (you can't hear him cry because of the ventilator, but you can see him do it) so he put it back on and he stopped and just looked at it. They tried to change his dialysis to two hour dwell times, but he didn't like that too well and they had to go up on the vent a little. Just day by day. More tomorrow - jc

Friday, December 5, 2008

Mav is doing well today. They tried to wean his vent a little too quickly for his liking and they had to back off a little. His CRP is back down to <.2. The last BUN that I knew of was in the 30's and his creatinine was 1.3. Greg made it back down there and is enjoying spending time with Mav. He's been doing his therapy thing tonight and really working him over. They gave him some morphine and he was sleeping while Greg was working on him, but he'll probably be pretty sore tomorrow. His muscles in his legs are so tight and his little arms only go up about as much as the other Maverick's (John McCain) - and no that's not why we named him that. I didn't even know that was his nickname until I saw it on a commercial during the election. Greg is supposed to be sending some pics and video to the blog, so I'll post those when I get them.

The kids and I are enjoying our time together. My sister, Heather, came to Shawnee from OKC today and we went out to lunch with Chloe. She brought the kids their Christmas presents since we don't know where or when we'll be having Christmas - and being the softee that she is, she let them open them early. They really enjoyed that. We played Christmas music and I put the Christmas tree up today. I love Christmas music. My favorite song is "Here Comes Santa Clause" with Gene Autry singing. We have this crazy tradition of having a white tree - not like a white flocked tree or even a solid white tree. It is a white wire tree that is actually made for outdoors. I bought it one year when we were getting ready to move and I didn't want to try to find my green tree in storage. I thought if I bought an outdoor tree, the next year we could use it outdoors and I would use the green one indoors. The next year rolled around and everyone - including Greg wanted to use the white tree again. So, this is the fifth year of the white wire tree... Kind of crazy, but we love it. We haven't actually decorated it yet, but maybe tomorrow. We have breakfast with Santa tomorrow at Maddie and Carter's school. It's an annual tradition and we've only missed it once. They really enjoy it and we always get their picture taken with Santa and I think it's always been the same Santa. I have some with Maddie, then Maddie and Carter, then Maddie, Carter and Chloe. If Mav was home, he would be in this year's pic (Ok, so I really wouldn't take him out into a crowd with all that he's been through, but you know what I mean). That makes me sad that he's not home, yet. I think we're getting closer, though. My last day there I spoke with Dr. Mendeloff and Dr. Chemelli about getting Mav home as quickly as possible - like sometime soon after he's off the vent.

I know a lot of you know Greg and I, but I'm quickly becoming aware that an increasing number of people reading this don't really know us at all. Greg is a physical therapist and I'm a Mediflight neonatal transport nurse. How bizarre is that? God knew that we would be able to take care of him. He's still going to have to learn how to eat and he'll have to have a lot of therapy to get him to where he should be since he's lost so much of his muscle tone. He may have to go home on some oxygen, we'll just have to see. If his kidneys don't kick in, then we'll be going home on dialysis, too. But, because of our backgrounds, we'll be able to do these things at home instead of having to stay in the hospital for several more months. The doctors are onboard with this plan. It won't be immediately after he's extubated, but hopefully it won't be more than a few more weeks after that. Greg and I were talking that this has been one of the best weeks - even in the midst of the kidney issues and everything else. It just seems like now we have some hope for getting Mav home and our family back together. I won't say back to normal... I think we'll have a new definition of normal, but that's ok. I'll post more tomorrow - Love you all - jc

Thursday, December 4, 2008

videoHere's Maddie reading, "Brown Bear" to Maverick. For some reason the sound and video are off a little. If you look at Mav's mouth it looks like he's reading part of the time.

videoHere's Mav watching his aquarium. He can't quite decide whether to look at me or the aquarium.

TWO HANDS!

This was Mav today with his little booties on. His face is a little puffier, but overall he looks really good.
This was me holding Mav today. He did pretty well with it. I told him he had to get used to being up more, because the ride home in the carseat is a long one.

This was me holding him yesterday. I just held him with his little mattress and all because it would be easier on him. I didn't want to stress him out too much. He did just fine.

Ok, so the pictures go on here first and I'm not able to change that around, but I am up to six times for holding Mav... That's on two hands if you count with your fingers! I was pretty down on Tuesday with him not having any urine out in 48 hours, so I said lots of prayers and I think you all did, too. I went in to check on him at 5:00am on Wednesday morning and he had peed all over his bed! His nurse weighed the blanket and it was 13mls (about 2 1/2 tsp), and later in the day he peed a little more. He hasn't since then, but at least his kidneys are still making some urine. Home dialysis looks like it will be in the picture if things don't come around pretty quickly. It doesn't seem like it will be that big of a deal, though. It is hooked up at night for about 10 hours and then is off it during the day. If his kidneys don't make a come back, then when he's about 3 or 4 he'll need a kidney transplant. We'll just worry about that later, though.
So... are you wondering how I got so lucky to hold him? I will just say I think Dr. Chemelli (the intensivist) realized there was no stopping me - and I owe him a few quarters. Mav is doing well. He's up to full feedings via the tube and is tolerating them well. His IV nutrition has been turned off - yea! They continue to slowly wean his vent. For my medical friends he's on 30%, rate of 10, pressure support of 14 and peep of 6. We're hoping he can come off the vent sometime in the next week.
I'll post some more tomorrow. I'll be at home, so I won't have to worry about sharing the computers. Love you all - jc

Tuesday, December 2, 2008

Another pic of Mav. It's his first time to somewhat sit up. He has a boppy under him. He did very well with it. He's had a pretty good day today. They've increased his feedings again and he's almost up to full feedings. They're still continuous through the yellow tube that goes to his intestines. Hopefully his IV nutrition will be turned off tomorrow. He's weaned a bit on his ventilator and they're planning on weaning some more tomorrow. His CRP was up a little today (from 0.2 to 1) - when it goes up it can indicate infection. It's still not high enough to be worrisome, but it bothers me that it's up at all. He hasn't had any urine in 48 hours :( There is still hope that his kidneys could kick in... just keep praying. The dialysis is going well, though, and his BUN is down to 49, creatinine is at 1.4.

Greg and the kids are doing well. I'm planning on going back to Shawnee on Thursday and Greg will come down here on Friday morning. More tomorrow - jc

Little Mav looking at his mobile today.

Monday, December 1, 2008

Here's Mav today. He's been pretty bright-eyed and acts like he's feeling better. They've increased his feedings through the tube to 7mls/hour (that's about 1 1/2 tsp per hour), and have decreased his ventilator rate and pressure a little. He hasn't had any urine out today, but is tolerating two hour dialysis well. They're not trying to get any extra fluid off, just trying to keep him about even. He's getting physical therapy every day now - just working on stretching his little arms and legs - they're still really stiff from all the swelling and from the time he was paralyzed. He's been watching his mobile some today and resting well. The nephrologist said he thinks the cloudy peritoneal fluid (the fluid coming out when they do the dialysis) is due to lymphatic fluid. So far the cultures show no growth (that means no infection). So, that's encouraging. It is just concerning that his kidneys aren't really kicking in and the nephrologist mentioned if they don't, Mav would have to go home on dialysis - probably just at night. That's do-able, but to all our prayer warriors out there - pray that his kidneys will start working like they should. More tomorrow - love you all - jc