Saturday, February 28, 2009
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
Friday, February 27, 2009
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
Thursday, February 26, 2009
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.
Wednesday, February 25, 2009
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
Tuesday, February 24, 2009
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
Monday, February 23, 2009
Sunday, February 22, 2009
Friday, February 20, 2009
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
Thursday, February 19, 2009
Still hopeful - jc
Wednesday, February 18, 2009
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
Tuesday, February 17, 2009
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
Monday, February 16, 2009
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
Saturday, February 14, 2009
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
Thursday, February 12, 2009
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
Wednesday, February 11, 2009
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
Tuesday, February 10, 2009
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.
Monday, February 9, 2009
Just in - the tube is in the right place!
Sunday, February 8, 2009
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
Saturday, February 7, 2009
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
Friday, February 6, 2009
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
Thursday, February 5, 2009
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
Wednesday, February 4, 2009
Tuesday, February 3, 2009
More tomorrow. Thank you all for everything! Love you - jc
Monday, February 2, 2009
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
Sunday, February 1, 2009
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
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