Brother and Sister Visit!

Today has had its challenges, but they are things like pulling drains and lines and really the worst part of that is pulling the tape off of Maya's skin. She's just tired of hurting, so she has lost some of the discipline it takes to be tough.

But, the kids came with memaw and pepaw today and that produced this:



Parker and Rain brought two bags full of toys and gifts for Maya--several of which they'd hand "wrapped" in gift tissue paper closed by Silly Bands. If you have young children you know what those are and wish you'd invented them as they are latest craze. Parker, Pepaw, Maya, and Rain:



We all visited in the room for a while and Maya was tuckered out, but so happy to see the kids. So, she fell asleep for about an hour while we all ate a very late lunch. Then, Maya was ready to play! Brandy's close friend Ashley with the one and only:

The surgical floor has a couple of drawbacks, but it does have a playroom. Maya made me a pizza and a sampler plate of peas, chicken nuggets, and a croissant. And no, that little chair didn't explode. For future reference I now know that it is a one cheek chair.

Then the three of them cooked up all this food for a party. I am still curious about what several of the food items are, but it is the best hospital food served yet!

Maya got tired and we went back to the room. The kids said their goodbyes until we bring Maya home.

We needed to get her last IV out of her leg and change the dressing on her main chest tube, so this was a little unpleasant, but the nurse, Christy was very patient and Maya did pretty well.

After this, Brandy's mom, Lana, stopped by with a really cool book of fairy tales that they spent a little while reading. She also took some PJs that Maya had gotten sick on to wash and bring back, so that's really nice. Then, my dad and Marty stopped in on their way back from Cotulla. They've been there all week doing an enrollment that I was supposed to work as well. They've been very worried so I know they were happy to see her doing well. And Maya always gets a kick out of Mimi and Papa.

Maya looks good but is still not keeping much food down at all. If we feed her anytime close to the times she gets oral medicines of more than a few CCs, she throws it up...almost as a gag reaction or like her stomach is full. But, she gets better hour by hour, so we are hopeful to get home sooner than later. Later being Sunday. I'd think we'd be fine at home tomorrow and will tell the doctors that in the morning. Of course, there is a very long list of reasons why I'm not a doctor, and 'lack of patience' is probably #4 of several hundred.

A new symptom has appeared and I'm not worried too much about it yet, but Maya is not using her left hand much. She says it feels asleep and tingly. I am about 90% sure it is a result of them having removed the central line that was in her clavicle and it is just sore. Tonight we went back to the playroom and built houses out of blocks and made her use her left hand more than she wanted to in an effort to work out any soreness. We had them check her pulses and the circulation seems good in the arm and hand, so it is probably nothing. She's walking pretty well, but tires easily and is uncoordinated.

Compared to what a lot of other people here are dealing with, this whole thing is nothing. But, as everyone knows, when it is you or yours, it is everything. With all the IVs and drains out, now it is just like having a pretty sick kid. We just keep overcoming the little challenges and hope and pray things just keep going well. We're both tired so overcoming them isn't getting easier. The progress is the payoff and looking over these entries makes it easier to see that we are headed in the right direction.

The hardest part remains not being able to take away your child's pain, not being able to stand in their stead as they go through these things. The light at the end of the tunnel is pretty bright now and I think Maya's beginning to see that, too.

Brandy is Brandy and if you know her that's all I need to say. If you don't, well, I can't explain it here as I don't have the words.

If you know me, you know I should have a T-shirt made with "Luckiest Knucklehead Ever" on it.

We are tired and we may have our "moments," but of anyone in the world, this is the person I know was meant to be here with me at this time for Maya. I hope our lives are like that for our kids for as long as we live. As long as we are together I don't care if it's good times or bad times as long as it's time.

Out of PICU

Maya took a little walk and scored a Tinker Bell movie from the Brave Chest. She scored because she loves Tinkerbell and this was one that she hasn't seen before :)


Then we got ready to move to our new room in the surgical unit... YAY! While we miss the constant one on one care of the PICU, being in our new room means we are one step closer to home sweet home. Before we left, the nurse removed the central line near Maya's clavicle. It was stitched in and had lots of tape, so this was not a fun thing. Also, the smell of the hand sanitizer that we all use makes her nauseous only adding to the stress. After that line was gone, Maya got a visit from a furry friend and that was helpful in calming her down. Next came the drain from her chest. At this point she was through with Dr.s and nurses removing stitches and tape, but she powered through it anyway. I think it was thing I most dreaded, but it came out surprisingly well. After that we packed up and headed to our new room where there was a big gift basket of stuffed animals from the Moore Family. Perfect timing!



Next we had a little visit from Mrs. Jackson. She brought Maya a mini-Laptop and we had a nice visit. Kevin was at the hotel catching some z's so it was nice to have a friend to chat with. A few minutes into her visit, Maya asked for food for the first time in hours and has actually kept it down.

Next came a sweet gift from Kids Kare that she just loved! Today we have seen the most smiles and when she isn't feeling nauseated, she's pretty much herself.

Parker and Rain are on the way, so I will update later with the details from their visit. I have a feeling that little dose of her siblings is just what Maya needs. I'm really looking forward to seeing my kids in the same place! I'll post more later...

Brandy

Thankful

It's 6:00 am I just got back to the hospital. Kevin stayed the night with Maya (only one parent can spend the night) so I could go back to the motel and get some sleep. It is amazing what 4 straight hours in a bed will do for you. When arrived they were both asleep so I moved to the PICU waiting room so I wouldn't disturb them. I just read Kevin's post and spoke to Gladys, and it looks like the night was fairly uneventful.

Since I have some quiet time, I thought I would do a quick post about all the things I am thankful for... I know that I will undoubtedly forget someone or thing, but I just wanted to tell a few people how much they mean to me.

First, our friends Moira and Larry Jackson have been keeping Parker for us. I can't tell you how much easier I rest knowing he is good hands! They have been amazing-- taking on an extra 11 year old boy is a lot of work and I just wanted them to know how much we appreciate being able to focus on Maya. In addition, my friend Tina has been taking on extra carpool duties and has made sure everything works out for Parker... football practice, etc. You guys rock :)

Rain has been staying with Kevin's mom and step-dad, or "Memaw" & "Pepaw" to the kids. I'm sure it has been quite the challenge to make it a "business" visit since school night sleep-overs are much different than weekend ones. I am thankful that she is in the most loving place possible... even if she ate ice cream for breakfast, ha! Knowing that I can rest easy because Memaw can handle whatever comes her way, is priceless. Thank you, Bonnie... I love you!

My mom is doing a great job, too! I know it must have nearly killed her yesterday to know that Maya was going to have to work through some difficult struggles. She managed to give us some space and did not come to visit yesterday. I know that it was hard for her, but it was the best thing for Maya. I know she loves that little girl more than life itself. Thank you mom for your continuous love and support... We love you!

My friend Ashley, who like a sister to me, came on surgery day and stayed the whole tortuous time. She is an amazing friend who has this wonderful talent of knowing just what to say and do to ease my mind. She and Maya are super close and have been for awhile... sometimes it's even a toss up on who Maya wants more, me or her :) Thank you for riding out the longest 5 hours ever on Tuesday-- I know that it was difficult for you, too! Maya asked for her yesterday and her little face lit up when I told her that Ashley would be back today. Thanks for loving our little girl :)

To all the folks at Oakwood and Kids Kare... you guys are awesome. We are lucky to be a part of such an amazing church family. Your prayers and visits have meant so much to our whole family... thank you for being a part of Maya's life and loving her so much!

To the doctors and nurses that have cared for her... there are just no words. They are the best by a long shot, and we are thankful for their skill, their care and their devotion to our little girl.

To those of you who have been following the blog and praying for us, thank you. The support and love we have received is amazing in itself. Without the comments, emails and all the well-wishes, this would have been a lonely journey.

To my friend Amber, whose portraits of my children have been a constant comfort. The moments you capture are indescribable and help remind me that this is just one small bump in the long journey. Thank you for being my friend!

To Kevin... I could not ask for a better husband and father. He has barely left Maya's bedside and makes sure that everyone does what they are supposed to. He constantly asks the questions I never think of, and is able to push her when she needs a little nudge. Thank you for being everything I am not-- we are a perfect team and I love you more than words can say. I know that I could not have done this without you. You are my rock!

And most of all, I thank God. For His healing, His peace and His love... He has seen us through some pretty tough days... I have no doubt that He carried Maya yesterday, as we able to see few smiles and a small glimpse of the little girl we know and love, behind all the physical hurt. Our faith is strong will remain steadfast. What else is there to say to besides, "PRAISE THE LORD"?

That's all for now... it was starting to sound like I was accepting an Oscar!

Thanks again for hangin' in there with us,
Brandy

"The grace of our Lord was poured out on me abundantly, along with the faith and love that are in Christ Jesus".
1 Timothy 1:14

Middle of the Night Update

Maya is doing great after having stopped the Lortab. She slept on and off from 1am to about 2:30 and then was uncomfortable. She drank some water, we re-situated her on her right side, and she ate half a popsicle. She was hungry, but when I listed the things she could eat nothing sounded good. Finally, I asked her what she wanted. "Apple dippers." Mc Donald's at 3am?

Then, about 3:30 she started hurting in her chest and I asked for some Fentanyl that Gladys gave. That helped and she is now asleep again just a few minutes after 4.

Ups and Downs

After a rough morning and great afternoon, tonight was a mess. Brandy figured this one out before I did, but it just reinforces that when your child is in the hospital you need to be with them 24-7.

From 11am to 7pm we had Sherry as our nurse and she was very good. The shift changed at 7pm and a really sweet young nurse named Gladys took over. She's also great and today is her last day of work before maternity leave, so she looks like she is ready to pop at any moment. Anyway, the point is that both of them are great, competent, and love their jobs.

Today, at some point after receiving her pain meds, Maya got sick and vomited. No big deal, but with a recent sternotomy, it is very painful. Then, she was fine and you kind of think, "OK, so she threw up. Happens with kids, especially after anesthesia. Happens to me sometimes." But Brandy didn't blow it off like I did, and she also noticed that along with the vomiting was a distinct red coloration across Maya's cheeks and nose. She told me that she thought it was the pain medicine, but we couldn't put together which one or if it was even related because this type of thing is so common even this long after general anesthesia, surgery, intubation, bypass, all the medicines, etc. At one point, Maya also said, "I can't breathe," which got our attention even among a myriad of other complaints.

So, later in the afternoon we start paying better attention. Sherry gives the central line Toradol. Maya is a little sluggish but OK. About 6 pm it comes time for the oral Lortab and Maya absolutely does not want to take it. She says it's what make her puke earlier. We make her take it and she cries. It goes downhill from there. She says her stomach hurts, she feels dizzy, nauseous, the red spreads all over her face and some on her throat. Probably three hours of moaning and misery ensue. Nothing can make her happy or comfortable. I was frustrated because we were seeing a reversal in progress as she wouldn't eat or drink. Brandy said, "Look at her, she has the same look she did earlier, but it's worse." Just a bad evening and night.

The shift change happens and Gladys comes on. Brandy decides to bring it to a head by forcing water on Maya to either bring it back up or dilute it. At some point, Maya throws up again--all over the place--and needs a bath. We bathe her in bed, wash all the stuff out of her hair, and get her re-settled. Brandy tells me it's the Lortab. I agree and we tell Gladys. She knew we suspected it because we'd been asking questions about it and Toradol. But they get that all the time as we are worried parents just like everyone else.

Gladys says it's probably one of the other things I discussed above (anesthesia, etc.) and she will monitor it after the 12am dose. Brandy's not going to have it and I know it so I just say we need to see the doctor; Maya's not taking that stuff anymore because it is making her sick. So, Gladys goes to the doctor who tells her that the Lortab may not be necessary anymore anyway, so cancel the 12 am dose and stop it completely. Here is Maya a little while ago--I missed her big smile but you can see she is well:

Between shift changes of new nurses every 8 hours with medicines on six hour dosages and just not knowing her like Brandy does, Brandy stopped something that was getting worse. So, I looked up the side effects of Lortab when people react badly to it and it is a symptom list for Maya over the past 14 hours: urine reduction, rashes, difficulty breathing, dizziness, vomiting, short shallow breathing, on and on. She tolerated the first dose and just was nauseous and dizzy. The second dose produced that plus a rash, difficulty breathing, and made her sick all over like someone with the flu. When she threw it up, she was great. The third dose was even worse than the second.

Looking back it all seems so obvious, but it's not when you're living it. We don't know anything about medicine, but we know our kids better than they do. Brandy, of course, knows Maya like no one should ever have to know another person because of what they've been through and I think we'd be staying in ICU another day or two if that wasn't so.

Something funny is that when we told Maya she didn't have to take the oral pain killer anymore because we thought it was making her sick, she said, "I know," so smugly it made us all laugh.

It's 11:30 pm and Maya is sleeping like a little angel. Brandy is in the chair next to her asleep as well. Angel and guardian angel.

Day 2 and Day 3 All in One Day

The first part of today was pretty rough. Her chest x-ray showed some congestion in the upper lobes of her lungs and after consulting with the surgeon and cardiologist, the ICU department MD ordered several therapies for today. They wanted her upright and mobile today to start clearing that congestion and to get the blood drained out of the area around her heart. She has a pretty big line there that drains the blood leaking around stitches and any residual blood from the surgery into a clear plastic vacuum bulb. They empty the bulb every hour and measure the output. When the amount of fluid coming out of that drain reduces to a certain level, they can remove the drain. That'll be nice because it bothers Maya to see it and removal of that drain will be another big step to us getting home.

The problem with doing all of this today is that this morning there were still about half the lines still in her. She was in pain and just not feeling well, but her stats were all good. In the pic below you can see the eight way port that feeds the central line into her clavicle vein (right at the neck and clavicle), but at this point only a couple of lines were still active as after the surgery the numbers of medicines being administered were reduced almost hourly:


We did get a couple of the lines out and then the catheter and got her up. She stood up, took a couple of steps, and sat on a little portable potty. She cried the whole time and was miserable. The potty experiment was not fruitful in any way.

Then, she sat in a chair for about and hour and a half and ate a little bit of chicken noodle soup. Any time we moved her around, she complained that she was sick at her stomach. When we put her back in bed, she threw up the noodles and the stuff that had been bothering her all along--probably still a result of the anesthesia. What finally set her off was putting medicines into that central line. Apparently it is somehow connected to the mouth and nose pretty directly because each time it is used, she complains of a bad taste in her mouth and smell in her nose. That, on top of feeling nauseous already, was enough to finally make her sick.

We had just got her settled back in when a very animated therapist named Kate came in. Maya usually reacts very negatively to folks like that, and right behind her came Pastor Jody from Oakwood. I thought, "Boy, this is not going to work out well."

This became Maya's rock star phase and boy was I wrong. She felt really special that the Big Guy on her campus, the Children's Pastor had come all the way over just to see her. He saw that the therapy ladies were waiting to work with Maya so we had a nice brief visit, he prayed with Maya, and he left us to it. Maya beamed. Then, the therapy lady, Kate was awesome. In just a few minutes it was clear that this lady was good at her job and very good with kids. They did some exercises and we got a glimpse of the real Maya (minus all but a couple of lines):


Just as they were finishing her therapy and Maya was already happy, the child services lady, Caley (sp?) from Methodist showed up and talked to Maya about what toys she wanted to play with and games or movies she could bring, etc. I see several games of Candy Land in our future and as I write this Scooby Doo is battling evil on the TV. Anyway, everyone just wanted a little piece of Maya and she ate it up!

Dr. Kuperschmid (surgeon) had two cases today so he brought them into ICU and stopped by. Dr. Brownlee (cardiologist) also came by for a visit. When they saw Maya, they both said that she looked like it was day 3, not day 2. So, it looks like they will move us to the surgical floor tomorrow. The next stop after that is home.

Not too long after the second pic was taken she got tired and is now sleeping. Shaggy and Scooby have just unmasked a farmer pretending to be a vampire to keep people from visiting some area attraction so he could get the land for his own use. I guess Maya had it figured out early on because she got bored and fell asleep. Zoiks!

Brandy's done really well with all this. She's slept about an hour and a half in the past 36 and is right where she needs to be when Maya needs her and does it all like it is easy when it is not. When one of us leaves to get food or something, Maya always says, "I want Daddy to go." In my heart I choose to take that as meaning, "Mommy is awesome and I want her to stay with me," and I'll just leave it at that.

So much more than this happens on a day like this with little victories and failures, but right now we are probably on schedule to go to the surgical floor tomorrow and her walking around on her own within 24 hours. Our nurse today is Sherry and even though I called her Terry the first half of the day and we now have a roommate (also a 4 year old girl), she's been 100% all day.

All in all, things are going very well and we couldn't ask for anything more.

Kevin

Ahead of Schedule

Maya is doing very well. You kind of hate to say it because you don't want to jinx it, but there's really no other way to say it. Brandy and I slept from around 3:30 to 5:30 while super nurse Stephanie Shook watched her. Small world as Stephanie lives in New Braunfels off of 306 and is involved in the MOPS organization where we have a number of mutual friends. Very sweet and good at her job!

Around 7 or 8 last night Dr. Kupferschmid (Kup) came in to look in on Maya. He is also working on the nine day old little boy in the room next door and came in after that surgery. I had a couple of questions to ask him and my first one was to see how he felt about how the operation went. Going in the fears were a failed repair that made a mechanical valve necessary or some setback in the procedure that precipitated other problems.

During the surgery we learned from the OR nurse (who called us with updates at certain times like when they were safely in the chest, effecting the repair, taking her off bypass, closing, etc.) that they had been unable to place a ring in the annulus to shape it properly because Maya's annulus was just to small for the smallest ring used in the US for this, a #24. If I had to guess, I would say that is 24 millimeter or about 1 inch. Instead, he put stitches on both sides of the valve to pull the leaflets closer together to effect a better seal when the valve closes upon the ventricle's contraction. They also did not cut the tethering cords on the smaller leaflet for it to open more as was planned. So, knowing these things, I didn't know how Kup felt about what he'd been able to do. His answer was, "This is the best of all possible outcomes," which brought tears to my eyes and still does as I write this.

He explained that while the stitching he'd used to pull the sides of the valve together don't work on some people permanently like a ring, they also sometimes work for a lifetime. Where a ring keeps the annulus from dilating on a 360 degree basis, it would also have to be replaced during another surgery in 15 years or so. These stitches may not work because unlike the ring they would allow for dilation of the annulus in the unstitched areas if the heart continues to grow in an abnormal way. Or, this could be a permanent fix. Having that as an possible open option was one that going into this surgery I understood was off the table, so that feels sort of like getting pulled over for a traffic violation and the policeman giving you $500 and a get out of jail free card for being his 1000th "customer."

When I asked him why they'd not cut the tethering cords on the smaller leaflet, he explained that it was not necessary and showed us a series of four pictures of the larger leaflet and the repair he made. Brandy may post them later, but the first two pics show the larger leaflet sitting in the annulus (which is smaller than 1" in diameter) and the cleft they thought was like an indention or scalloped area before was actually about 8 millimeters wide! Yes, this is about one third of the entire area to be closed when the valve closed. Looking at it, it looks like a sort of half of a cookie that one of the kids has taken a big bite out of the rounded side. When the heart is full of blood and working, the sides of the cleft were pressed together, so any picture (echo) taken from the side would not reveal it. Looking down on it from the top without blood in the heart, though, it is apparent that Maya has been living her life with a heart that was operating at maybe half its efficiency. I have no idea how she has been doing all the things she has from a full day at Schlitterbahn to jumping on the trampoline in 100 degree weather.

Needless to say, we now know why she was always cold in the water, could not gain weight, and has become more easily tired lately. Poor thing just didn't know she was paddling with an oar with as many holes in it as she had wood in the water. The third and fourth pictures show how he he sewed the two sides of the leaflet together and Dr. Brownlee (cardiologist) showed me on video of the post-op transesophageal echocardiogram that the leakage is now very minor. Pre-op it was considered severe. She now has what most people would call a faint heart murmur. I cannot hear the leak through a stethoscope at all as her heart now has a very crisp beat. Before, the second beat in the normal thump-thump of the heartbeat sound was more like thump-biiiissssshhh.

After the surgery Maya woke up with the normal after surgery misery: sore, dry throat, disoriented with tubes, drains, catheter, EKG type stickers all over including the forehead, IVs in the neck and each limb, pain, etc. The main thing she battled was probably just thirst. Even though they are getting liquids through the IVs, her throat was so dry that she could barely speak to tell us she wanted water. Over the period from about 1:30pm when we got into ICU until about 9pm she was able to hold down first water sponged into her mouth a cc at a time, then three ice chips every ten minutes, then some apple juice, and then before we left her asleep at about 3:30, a popsicle. Mommy, champion that she is, worked through all those tense, tear filled negotiations like she always does everything: beautifully. Our nurse early last night, Lorraine, was a very serious, competent professional. By the time Lorraine left, she was putty in Maya's hands. Thanks, Lorraine!

When we left her, Maya's temperature was hovering around 99.7. Right now the main concern would be an infection. With methicillin (sp?--way too lazy to look that up right now) resistant staph infections out there, this is really scary with heart surgeries. When we came back in at 6am, her temperature was 98.6. So far, so good.

I could write a million other things but I think this covers most of it.
Kevin