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.
Friday, October 31, 2008
Mav just got out of the cath lab. They were running behind today, so he didn't go in until around 4:15. Just to cut to the chase, Mav does need another surgery and they're going to do it Monday afternoon. The good news is it is clearly evident that this is what is causing his problems. They measured the pressure in the right ventricle (the chamber of the heart that pumps blood to the lungs) and it was 120% of his systemic pressure. It's supposed to be about 25% of his systemic blood pressure. His little heart was having to work very hard to get the blood through the narrowed area of his pulmonary artery and to his lungs. Dr. M says he'll go back in through his previous incision on his chest (it is another open heart surgery), and place a patch on the pulmonary artery to make it larger in diameter. This should allow the blood to flow out of the right side of his heart more freely, and alleviate the"backing up" of blood into his tissues. This should also help with his chest tube output. Dr. Mendeloff (the surgeon) and Dr. Kao (the cardiologist) were both very optimistic for Mav. They were glad that it was so obvious that this is what is causing his problems. Dr. M says Mav will have to go back on the pump (the bypass machine), but he won't have to stop his heart to do this surgery like he did with the switch. He says the actual time it will take him to do this should be only about 30 minutes (this doesn't include the time for anesthesia, getting him on the pump, or closing), and he says the mortality rate is around 2%. They fully expect Mav to get out of surgery and do much better and start losing some fluid fairly quickly. The cause of the narrowing is most likely due to scar tissue - which explains why he has been able to lose fluid and come off the vent in the past. The scar tissue has just slowly been forming in his pulmonary artery (where they did the switch) since the surgery and is now at a point where it's causing a problem. I hate for him to have to go through another open heart, but am encouraged that it seems like this is the answer we've been looking for. Their plan is to let him rest this weekend and try to get a little fluid off him. His BUN was down a little today (66) and his creatinine is holding steady at 0.5. My plan is to still go home tomorrow to see the kids and leave early Monday morning. His surgery won't take place until 1:00 or after. Dr. M has one surgery before Mav's, so that time is subject to change. Thank you all so much for your prayers. I'm so glad we have an answer. jc
Mav continues to swell. His BUN is still about the same. The nephrologist wanted to start him on a renal dose of dopamine, so they started it earlier today. Looking back over his labs, he's been this elevated before and it took anywhere from 2 to 10 days for it to come down. He's always been on diuretics, though, so I don't know how this will work out. He had a heart echo today. Dr. M said they just need to look at everything and see what else may be the cause of the continued swelling. The heart echo showed there is a narrowing of his pulmonary artery. They weren't able to tell if it was at the valve area, around the place where he re-attached the coronaries, or at the spot where the switch was performed. They've decided to perform a heart cath tomorrow at 2:00 to tell exactly where the obstruction is. The problem with the cath is that the dye they use can be toxic to the kidneys, but they need to do it. We're praying that the problem is at the area of the switch, because it is easiest to fix. If the interventional cardiologist is able, he can attempt to balloon the area. If he can't, Dr. M will have to go back in through his sternum and fix that area with a patch to make it larger (another open heart surgery). If it's at the area around where the coronaries were reattached, we're in for something much more complicated. For all my non-medical friends and family, it's kind of like plumbing. If you have a pipe that's too small to handle the flow in your bathroom or kitchen, the water/sewage/etc. will back up. Mav's pipe in his heart is too small in one spot, so the blood backs up and leaks into his tissues instead of going through his heart in a normal fashion. This may be the cause of the swelling. They're not sure, but they're looking at everything because something has to be causing this. They're just trying everything they can think of. It's been a very emotional day, and I know tomorrow will be even more difficult. I'm not going back home at least until Saturday, but that still depends on how Mav is doing. Greg is coming back tonight - we'll be here together tomorrow for the procedure. This is just so scary. Please pray that the problem will be evident and easy to fix and that he'll tolerate tomorrow without any problems. He's been through so much already, I just can't imagine going through another major surgery. Thanks to everyone that's helping with the kids. We appreciate it. Love you all - jc
You know, some days are a little more difficult than others. This has been one of those days. I can truthfully say I wouldn't wish this on my worst enemy. It's just been up and down for 6 weeks. He's off the epi and nor-epi and his blood pressure has been holding steady. His BUN was 73 today (it's a lab value which means he's dehydrated in his circulatory system), so he continues to be on only one diuretic (diamox for my medical friends). He received some blood today and all that volume made him puff up like a marshmallow. The third-spacing (extra fluid in his tissues instead of his circulatory system) has made it more difficult for him to breathe (most of the swelling is in his head and chest) and so they've gone up on his ventilator settings. A nephrologist came in for a consult yesterday and had some urine sent off for electrolytes. The results were back today and the nurse said they were fine and the nephro says the problems are pre-renal (meaning his kidneys are functioning ok). The infectious disease doc was in today as well and they have taken him off the ampho-b and placed him on oral itraconazole for the fungal infection they discovered when closing his chest. He'll be on that for quite awhile. He's still having some output from his chest tube. It's not as bad as before, but it's around 140mls over the past 36 hours. I'm praying this will stop on it's own soon. I sure don't want him to go through the pleurodesis again. I had hoped he would be off the vent before I go back to Shawnee on Friday, but there is no way that will happen. I also had hopes having him home by Thanksgiving, now I think Christmas will be a more realistic target. Thanks for all your continued thoughts and prayers. If you've read any good books lately, let me know what they are. Nothing serious - I like things that make me laugh. If you have any good Bible studies that would be beneficial in this situation, share those as well. Thanks - love you all - jc
Today he's making a little bit of progress. They tried a pressure support trial on his ventilator today, but he didn't tolerate it. Maybe in a few more days. He is still edematous in his chest - they say that's probably why he didn't do well. They had to stop his lasix drip due to some labs, so he's not going to get rid of the fluid as quickly. He's off the nor-epi (for his blood pressure) and they're weaning his epi. He's had some output from his chest tube today, but not much. They've also started some tube feedings, so hopefully he'll tolerate them. I wish I could give you all a great progress report, but little Mav is just taking his time. I think he likes it here in Texas. I keep telling him, "We don't live here. We want you to get better so we can take you home and you can sleep in your own bed." I guess he just has selective hearing... That's a boy for you.
One of my best friends from high school, Brenda, took me to lunch today. We had a great time and some great Italian food. It's always good to catch up with friends. Thanks, Bren!
Mav had his foley catheter taken out today - I'm sure that's more comfortable for him. He's still on his epi and nor-epi - they haven't weaned them any further. They added milrinone today for his peripheral perfusion. They turned his ventilator rate down a little. He's off the diuretic coctail and remains on a lasix drip. He's looking more edematous, but they don't want to diurese (get the fluid off) him too quickly. The good news is he's had no output from his chest tube in the last 24 hours! Happy Dance! His left post-tibial art line stopped working today and they took it out. They're planning on leaving it out unless he starts misbehaving since they've used all his distal extremity sites.
I've decided while I'm home next week I'm going to try to make a positioner for Mav. He somehow seems to slide back on his back when he's positioned on his side - sneaky little guy. Who knows - maybe this will be my one good idea. More tomorrow - jc
Mav has had another pretty good day. They have taken him off the diuretic coctail and placed him back on a lasix drip (it's not as strong). His weight is down quite a bit, but he still has a way to go. They've weaned his ventilator a little bit - hopefully he'll be ready to be extubated sometime next week. His chest tube output is pretty stable at about 30-40mls/day. No big changes, but that's ok. He's looking alot more like himself.
My oldest daughter, Maddie, had her first school dance last night. Greg took lots of pictures and video before he dropped her off. The theme was "Dancing through the Decades." The kids could dress up from any decade they chose. Maddie was an 80's queen - complete with big hair and purple eyeshadow -thanks to my sweet friend Meredith. She had a blast - thanks, Meredith! I can't wait to see the pics. I'll try to post some when I go back to Shawnee next weekend. jc
Mav's chest tube output remains low today. They've started hydrocortisone today (an IV steroid) to help Mav with his blood pressure. They've been able to wean his nor-epi and epi once today. They're weaning them very slowly. He's six weeks old today - can you believe it? I never thought we would be here this long. He's staying awake and alert alot more now. When I get back to Shawnee next week I'll post a video of him watching his mobile. He just loves it. I might have carpal tunnel syndrome by the time we get home from winding up that mobile!
The infectious disease doc came in this afternoon and said they would stop the ampho-B and start him on an oral antifungal when he's back on feedings and tolerating them. The intensivist says that will be after he's down or off his drips and after he gets some fluid off. Thanks for your posts - I love hearing from you all! More tomorrow - jc
Chest tube output is still down - yea! It has dropped from 1/2 liter per day to under 2 ounces per day. They are slowly weaning his nor-epi and they have started the diuretic coctail back up to try to get some of the fluid off. He was so edematous last night that he couldn't open his eyes. Today he is still very swollen but is able to open them. He's gained about 2 1/2 pounds since Monday. They're not going to make any major changes over the next few days. More tomorrow - jc
His chest tube drainage has markedly decreased. They've been flushing it to make sure there are no clots and his x-ray looks good, so it seems like it's working this time! He's still on his epi drip and they had to add nor-epi for his blood pressure as well. He's still very edematous, but we're thankful for the outcome of the procedure. Now we'll just have to watch him for a few days and hopefully he can start weaning off some of the drips soon. Thanks for your prayers!
Just a side note - today is the 15th anniversary of our first date. Greg is going to be leaving tomorrow to go back to Shawnee. He'll stay with the kids for a week, then I'll go stay with them for a week. This has just taken alot longer than we expected and they need us, too. I'm just guessing we'll still be here about another month... More tomorrow. jc
He's still having alot of output from his right chest tube. The tube was blocked for quite awhile yesterday and gave us false hope that the drainage was ceasing. Dr. M wanted to do the pleurodesis again today. He's about out of options for correcting this output. He's gone up on his epi drip and has required a few fluid boluses, but his reaction this time doesn't seem so severe. He's pretty edematous, though. If you are a praying person, please pray that this will work. He's been through so much. I'm just ready for him to get better... They're placing the doxycycline right now. jc
Sorry it's been so long. I was busy with the kids. I really enjoyed my visit home. We just did fun things and hung out together - I even let them ride bikes in Walmart when we went. That is so not me...
So, little Mav, little Mav - he is just on his own schedule. The latter part of the week was good. Greg took a video of him looking and talking to his mobile. If I can figure out a way I will post it on here. Greg held him again while I was gone, then Saturday night he started having a hard time breathing. They placed him back on a high flow nasal cannula, but he continued to have difficulty. He had gotten pretty dehydrated due to all the chest tube output - they had been replacing the output 1/2 ml for every 1ml he had out, but that wasn't quite enough. He also needed some blood. They messed with his meds and everything until Sunday evening, and his breathing was still very labored, so they intubated him. He's back on the vent now. They were going to place him on it this morning for the procedure anyway, but I would've rather that it was just for the procedure instead of him needing it - know what I mean? He did have the pleurodesis at around 11:30 this morning. He was in alot of pain at first, but many doses of fentanyl later and after an increase on his fentanyl drip - he now seems to be pretty comfortable. They had restarted his epi drip yesterday and his milrinone because he needed them, and he probably would've been started back on them today after the procedure anyway. So far he's tolerating the procedure, but the next 48 hours or so will be the testing time. Hopefully he won't have as bad of a reaction this time. Keep praying. Love you all - I'll be better about updating this week. jc
Mav is still having quite a bit of output from the right chest tube, but it was down a little from the previous 24 hours. His oxygen is down to 1/4lpm and was at 80% this morning. They were weaning him as he tolerated it - I just forgot to ask Greg what it was down to this evening. His left chest tube was removed today and Greg got to hold him for awhile! They also took out his foley catheter yesterday. The plan is still to do a pleurodesis on the right on Monday. I'm just praying he tolerates it well and doesn't have the same issues he had last time.
The kids and I have had a great time together. This evening the reality of me leaving tomorrow started to set in. We had some tears and a tummy ache, then we talked to Greg and we all decided that I would stay until Sunday. Greg is planning on coming back Thursday and staying until Monday. I think it might be better to say goodbye once per weekend. This has been so difficult. I feel like I need to be in two places at once - and I know Greg feels the same. I think once we get little Mav home with the other kiddos we won't want to be away for quite awhile. I'm going to go snuggle with the kids - more tomorrow... jc
Mav was up to full feedings last night and his chest tube output started turning chylous again. They had to stop his feedings and start him back on TPN (IV nutrition). They are taking his left chest tube out tomorrow, though. He's down to 1 1/2 lpm of oxygen.
The kids and I went to the park for awhile and ran around some today. My dad and grandmother came to visit. They hadn't seen me or the kids since Mav was born. I did some laundry today and didn't mind it at all. It's nice to be home - it would be better if Mav and Greg could be here, too. I'll keep you all updated - jc.
I left the hospital this morning after seeing Mav and went to Shawnee to see the kids. I'm staying here until Friday morning and then Greg and I will trade places. It was great to see the kids. We didn't do anything productive this evening - just all fun. We played basketball, frisbee, went to eat at the new McAlister's Deli (it just opened in Shawnee today!), and went to the park. My mom is here until tomorrow morning, so I'm getting to spend some time with her, too.
About Mav: He's on 3lpm nasal cannula oxygen at 35%. He was almost to full feedings (he's getting them continuously down the yellow tube) when I left. His chest tube output on the right is pretty high. He had 700mls out the past 24 hours. They're going to try an octreotide drip - it's a medication that can decrease chest tube output. If they can get it decreased then Dr. M will probably do another pleurodesis - this time putting doxycycline in the pleural space - on the right sometime next week. I'm hoping and praying the drip will stop the chest tube drainage altogether. He got so sick the last time they put the doxy in. Greg is going to keep me updated while I'm here, so I'll keep the blog going. More tomorrow - jc
Little Mav was taken off the ventilator at 11:00 this morning. He's doing fine so far, and I got to hold him for a little while this afternoon! Nothing else has changed. He's still having alot of output from his right chest tube, but they're just going to watch it for now. I'm going home tomorrow until Friday morning (as long as Maverick cooperates) to see the kids. They start fall break on Wednesday. Greg is leaving when I get back and he'll stay with them until Monday. It will be nice to be home and see them. I'll be able to upload some pics while I'm there. More tomorrow - jc.
Mav had a good day today. They're hoping to extubate him tomorrow or Tuesday. They started him on feedings down his tube and so far he's tolerating them without difficulty. His chest tube output on the right is slowly getting less and the left chest tube isn't having much output. Many things to be thankful for. He's off his epi, and is just on a small amount of milrinone. Have I mentioned how thankful I am for all our friends and family? I cannot tell you how blessed we are to have each one of you in our lives. My sweet friend from Missouri, Kristi, flew in today and spent the day with us. She flew back out this evening. We had a great time. We just sat in Mav's room and watched him alot and talked and talked and talked. We also left the hospital and went to lunch. We had Mexican food. She says there are no good Mexican places in St. Louis (isn't that sad?). I'll go for now and let you know how tomorrow goes. Thanks again to each of you - jc.
Mav has had a better day. They are weaning his epi a little and have been able to go down on his ventilator rate. They started the diruetic coctail back up and he is losing alot more fluid. He's pretty fussy when he's awake - they've turned off his fentanyl drip - but he's getting doses of ativan and morphine when he needs them. They're planning on starting some small feedings down his tube tomorrow. Hopefully he'll tolerate them without any difficulty and his chest tube output won't turn cloudy with the feeds. I'll let you know how tomorrow goes. Love you all - jc
Last night was pretty smooth, then today was kind of rough. He had an episode where he dropped his blood pressure. They did a heart echo, and things looked ok. They replaced his left chest tube and placed a new arterial line in his left wrist. He hasn't been able to wean any on his epi or milrinone. They turned off the dopamine and increased the epi. They are placing him on a lasix drip tonight to try to get some of the fluid off. Two nights ago they drew blood cultures when he wasn't doing so well and they came back positive tonight (meaning he has an infection in his blood). He's already on vancomycin and mirapentum (very strong antibiotics) (sp?) - they placed him on those the same night they did his cultures. It's good he was already on them since he does have an infection - things could've been worse. He hasn't been able to wean any on the ventilator today. Maybe tomorrow will be better. He'll be one month old on Sunday - it's hard to believe. We have so many things to be thankful for, but sometimes it hard not to think about all the normal things we're missing (normal baby things, normal time with the kids, etc.). Enjoy your normal things and your routines. That's one thing I definitely won't take for granted after leaving here. I am thankful he's still alive and fighting, and I'm thankful for all your thoughts and prayers. Love you all - jc
Mav started having some blood pressure and perfusion issues last night. They had to start him back on milrinone and epi. They started dopamine last night as well. He's having an inflammatory response to the procedures they did yesterday, which means his little capillaries are leaking and he's retaining fluid again. He's still on the ventilator and is on a fentanyl drip for pain. Poor little guy. It's just heartbreaking to see him going through all this again. The doctors are hopeful things will start to turn around tomorrow. One thing about Mav is that everything seems to be on his schedule and not the doctors or mine. They've restarted some strong antibiotics just in case he's getting an infection, but his labs are good and they don't think that's the problem. His chest tube output has decreased quite a bit, which means the procedures they performed yesterday seem to be working. Say some prayers for little Mav - I know you all are. I'll update tomorrow. jc
Little Mav is still pretty out of it from surgery. They're keeping him sedated. So far, so good. He hasn't needed to be put on any meds for his blood pressure or anything. I'm so tired - I'll get back with you all tomorrow. jc
We got to hold little Mav tonight. It was the first time Greg had held him, and I hadn't held him since the morning of his surgery. It was very nice. I've always taken for granted being able to hold my babies - this has given me a new appreciation for it. I now know what many of the NICU moms have to go through. His surgery is still scheduled for 1200 tomorrow and shouldn't take very long. I'll post when the surgery is over. Dr. Estre - the infectious disease doctor came and spoke with us today. Mav is probably going to be on the IV ampho-B for several more weeks, but he did say that we could probably have home health finish the course if he was otherwise ready to go home. That's encouraging. Keep little Mav in your prayers - we're hoping this will take care of the chest tube output. More tomorrow - jc
Mav had a good day today, but we talked to Dr. M today and he needs the surgery. The surgery is a thoracic lymphatic duct ligation. Dr. M calls it "the appendectomy of thoracic surgery" and says as far as surgeries go it should be no big deal compared to everything else. He will go in through the right side of his chest and find the duct that is leaking and tie it off. This should take care of the chest tube drainage, hopefully. He's been having between 800-1000mls (around a liter) out per day. The poor little guy only weighs 3kg. When the drainage slows down, his need for blood products and electrolyte replacement should slow down as well. He'll have to be re-intubated for the surgery, but Dr. M says he should be weaned back off the vent in 24-48 hours. If his chest tube drainage falls as they think it should, he'll be back on tube feedings a few days after surgery. He's having the surgery on Wednesday around 12:00. I'm praying this is the road to a speedy recovery.
Greg has some tests scheduled on his back this week to see if there is a problem below the fusion, then he has an appointment with the spine specialist next week to go over the results. Hopefully we'll be able to find the cause of this continued back pain. Keep him in your prayers as well. Thanks - jc
The kids and I went to the fair today. Greg stayed at the hospital with Mav (he can't walk around that much with his back). We had a great time. It was so hard to see them go this evening. We all cried. Fall break is next week. I'm sure we'll work something out for that time. They all saw him, and he was awake and looking around one of the times they were in his room. It was so cute to see them interact with him.
He's had a pretty good day. His chest tube output is still high and they're having to give him extra sodium and FFP (plasma). They're planning on giving him another day or so before deciding what/if something needs to be done surgically. I was pretty bummed about the idea of him having another surgery and his nurse looked up over her glasses and said, "You know it's a miracle he's still here..." to which I said "Yes, I know." Then she said, "This surgery will just be a minor blip on the radar compared to everything else." I know she's right, and I just have to keep all this in perspective. He's off ecmo and his chest is closed and we still have him. God has been so good. We're so thankful for those things. We're just wanting to get him home. I didn't have time to upload pics. I just enjoyed my time with the kids. I think there's a way to send them here from my phone. I'll try to figure that out and post if I can. Thanks for your thoughts and prayers - love you all - jc.
It seems as if every time we move two rungs up the ladder we slide back down three. His chest tube output was climbing and today it turned cloudy indicating once again he's not tolerating his feedings (they were still going down the tube from his nose to his stomach). Since he was already on the best formula for this problem they had to stop his feedings altogether. So, he's back on TPN and lipids (IV nutrition). They're going to give him a few days rest, then try again. If it doesn't work next time, they're talking about a procedure or another surgery. We'll just hope and pray this resolves on its own. We didn't get to hold him today - maybe tomorrow or Monday. The kids did come down, though, and we're going to the fair tomorrow. I've really loved seeing them. I didn't have time to download pics on mom's laptop today - I'll try before she leaves tomorrow. jc
The computers were tied up all day yesterday, so I didn't get to post. His mediastinal tube was removed yesterday - yea! He still has his two chest tubes and they are putting out quite a bit of drainage, so they aren't going to be able to remove those for awhile, but Dr. M said we can hold him this weekend! I think they are also going to try to start bottle feedings today. I was just in to see him and he was wide awake. He just looked at me while I was talking to him. We had a good conversation for about 20 minutes, then he fell back asleep. He's still on high flow nasal cannula and doing well - no threats of re-intubation. His electrolytes are still messed up and they're having to replace his chest tube drainage ml for ml with a special concoction, and he's getting doses of calcium and has bicarb in his IV fluids. They've stopped his lasix for now and held his dose of ampho-b yesterday due to his electrolytes. I spoke with the infectious disease doctor yesterday and it seems little man has a pretty rare fungal infection (curvularia). He has had the lab send it off for sensitivity to see what all drugs can be used to treat it. The good news is so far it looks like it's limited to his incision. His blood cultures have all been negative. The bad news is he says it will probably be a longer course than 2 weeks like we were initially told by the intensivists. So, you know what that means... Greg's parents and sis and bro-in-law came down yesterday and saw little Mav for the first time. They were just smitten with him, of course. They brought us some prayer-grams from our IBC family. Thank you all for your continued prayers. It's so uplifting to read your words of encouragement. I'll try to post some pics today. Mom is bringing her laptop. Love you all - jc
Yes, finally, he was extubated (taken off the ventilator) at 5:30pm today. He's pretty hoarse, but so far, so good! He's having some electrolyte issues, but they're taking care of those. Greg's mom, dad, sister and brother-in-law are coming down tomorrow to see the little guy, then the kids on Saturday. We should have a good weekend! I'll post some new pics this weekend. Love you all - jc
Mav had another good day today. They turned off his epi drip and he tolerated it without any problems. His milrinone is still on, but it's just on the minimum dose. He did pressure support trials on his vent today and has tolerated those without any problems. He should be extubated tomorrow or Friday! His mediastinal tube will come out as soon as the drainage slows down - hopefully in the next few days. We're slowly getting closer to holding him. The kids are coming down this weekend - we can't wait to see them. More tomorrow - jc
I am a mother to Maddie, Carter, Chloe, and of course Maverick - who is now in heaven. I am wife to Greg. I am an RN and worked for Mediflight of Oklahoma transporting critically ill neonates throughout the state prior to Mav's birth. I am currently taking some time off to enjoy my kids before I start nurse practitioner school in the fall.