Playing Legos (a favorite pasttime)

Recovery - Day 7 (one week in)

Everyday brings ups and downs. On the up side, Blake had another great night and morning. He's feeling terrific and playing all the time and practically back to normal in terms of activity level. His stats continue to remain good. We have been testing his blood sugars (on a meter that Bryan says is from 1940) before every meal and two hours after meals and all have been within normal range. And as a super-duper surprise Aunt Noo Noo showed up to say hi on her way from Austin to Louisiana; Blake was excited to show her the playroom!

On the down side, in order to do the full diabetes screening they had to draw a large amount of blood. Blake's veins are notoriously hard to draw, so he got stuck 3 times and every moment was pure torture. To top it off, they send some of these tests away, so we might know the results until after we are home which is an awful waiting game. His right chest tube is still draining quite a bit (although still clear). They will be upping his diuretics today to try and dry him up some more, but the docs said that Sunday would be the earliest we would possibly go home and it could be as late as Wednesday (ugh).

So, we have a plan in place to celebrate Mason's 5th birthday in the hospital, and we continue to wait.

The better Blake feels the harder it is to stay cooped up in the hospital with the endless tests, it's just too difficult for a three-year-old to understand why he can't play like normal at home.

Thank you all for continuing to pray for Blake!

Two peas in a pod.

Recovery - Day 6

Blake is feeling great, he is up and around and more active everyday and his mood is generally great (except when the hoards of doctors descend on him). He did get another chest tube out today (out of his left lung), and the immediate x-ray showed that his lungs are looking great. Unfortunately, the right tube is still draining considerably, so our previous hopes of a Friday release are looking to be more and more remote. The good news is the drainage is still clear (indicating he is not draining fat). They are going to increase his diuretics in order to try and speed up the drying out of his right lung. The waiting for this is really difficult, because otherwise (although his breast plate is still fragile), he is back to his old self so being trapped in a hospital is frustrating to him and he is staring to ask to go home.

Now on to the turn of events that is really difficult to talk about. Blake gets a full blood chemistry every day so the cardiologists can monitor his electrolytes and white blood cell count (which all look good), but over the past three days they have seen two elevated glucose levels (blood sugars) that have caused some suspicion. Because Bryan is a Type 1 (juvenile) diabetic, this history causes some concerns. We got a special consult with the TCH endocrinology team today (ironically this is the same hospital where Bryan was diagnosed at age 10) and we really don't know yet what is going on. On one end of the spectrum, it could be nothing - the fluctuations in sugars could be a result of stress-induced hyperglycemia or this could be really early indication of type 1 diabetes (although this is very young to be diagnosed). We are going to do two things to try and get some answers 1) 48-hour monitoring of glucose levels via normal finger prick 2) full diabetes screening panel, and we will go from there.

It's fair to say I am a bit of a basket case because of the roller coaster of emotions. I felt we had come so far making progress with his heart and I just don't want him to have this additional medical and physical burden in his life. I know Bryan too is scared and is feeling guilty that this is something he could have passed on to him. As a mother it is so hard to be so out of control of the situation; I wish more than anything in the world that I could take these things on for him so that he could be healthy.

We ask for your prayers that this glucose issue will resolve on its own and that Blake's chest will start to cease draining and that we can maintain his good spirits while these issues get sorted out. Thank you.

Dinner Time!

Blake finally has his appetite back and thinks it's super awesome to get to watch TV and eat at the same time. Awesome!

Recovery - Day 5

It is so good to have Blake's old personality back. He's a silly monkey and everyday he is getting so much stronger.

All of his tests are looking good and the drainage from his chest tubes continues to decrease. He is getting out of bed to go potty and we are taking lots of walks around floor 15 which all help his fluids to be equal (or even) out and in. He hates the fluid restriction, but I think he's slowly getting used to it. His oxygen saturations remain constant at 93-95.

He is not getting any more medication via IV and only getting pain meds when he requests them (which is very infrequently).

They expect to take one or both chest tubes out tomorrow if we keep trending the same, then they will observe him for 24 hours, get an echocardiogram, and then we could be released. We are trying not to get our hopes up, but think that getting out of here Friday could be a real possibility.

Last night Blake insisted that he needed to tell his sweet little friend Elle goodnight and he loved her, so he recorded a video and sent it to her. She sent kisses back via video and he made us watch the video 100 times (almost as many times as we have watched Toy Story 1-3)!

Today Mason came up and played again which is always brings a smile to all our faces, and Lindsey from Child Life at TCH set up a Toy Story-themed scavenger hunt for Blake which thrilled him to pieces!

On his scavenger hunt

His prize for a successful hunt!

So now, we just wait. Thanks for your continued prayer and good wishes, we have no doubt that is why Blake is doing so well.

Recovery - Day 4

Apologies to all that have been looking for a post, there wasn't a lot new to report last night physically, but yesterday was very difficult emotionally. Blake has been super lethargic and almost seemingly depressed, and watching him like that when he was so full of life and energy coming into the surgery creates a lot of grief and doubt about putting him through such a big operation. But, today, Mason came to play, and her presence completely turned him around. He was talking and laughing and joking around like his old self, which was so needed for the soul. He loves his sister so much, and I am so happy she could come up here to lighten his spirit.

All smiles after playing with Mason

We have taken lots of walks (begrudgingly) around the floor over the past day or so and visited the playroom a couple of times. Blake is really getting around great, and although the effort is a little harder because he still has chest tubes, he's a trooper nonetheless

He still gets mad at us that he can't drink as much as he wants, but he is starting to eat a bit more now (grilled cheese and green beans seem to be the clear winners) which also helps with his energy. They have taken him off of the Motrin-like IV and now are giving him oral Motrin and Tylenol w/Codeine as needed for pain - but (knock on wood) he hasn't complained about pain all day today. The reduction in pain meds I think has cleared some of the cloudiness and allowing him to be more like his old self.

He still has his two pleural chest tubes and his right side is still putting out a bit but it is still clear (which is good, because cloudy would indicate that he is draining fat). They do think that the increased activity and walking might be making the drainage more significant. So, we will definitely keep the tubes through today and likely through tomorrow, and then we will see from there.

Thank you all for your continued thoughts and prayers.

Magic Popcicle!

Recovery Day 3 - AM Update

Blake had a great night last night. His sats stayed up all night without oxygen and he let mommy share his bed with him for another night. When he woke up this morning he gave us big smiles, kisses and told us he loved us to infinity and beyond!

This morning they took out one chest tube (the medial tube that was near his heart) and they shortened the other two tubes (pleural tubes going to the lungs) and put little bulbs on them instead of long tubes attached to boxes on the ground. This is going help him be a lot more mobile.

They are increasing his dose of Lasix (a diuretic) today because even though he is still very fluid restricted, he is taking in more fluid than he is putting out and it is very important that these little guys are negative in their fluid counts post-op. My pop-psychology in talking with Blake is part of this is in his head; he's been wearing a diaper and he's been really upset to go to the bathroom in it (since he's potty trained), so being more mobile might help us too in encouraging him to go potty.

They also plan to wean him off the regular IV dosage of the Motrin equivalent and go to only Tylenol w/ Codeine as necessary for pain.

His heart buddy, Henry and Henry's brother Charlie came to the hospital this morning for a quick visit. Henry picked out some toys, suckers, and a movie for Blake that he thought he would enjoy during his hospital stay. Henry also showed Blake his scar from his Fontan (which was almost a year ago). Blake was so happy to see Henry and Charlie (even though he had just had morphine to prepare for the chest tube removal), and was talking to them about his favorite subject, Toy Story! Thanks Jeff and Allison for always being so thoughtful and sweet to our family, we can't get over how great Henry looks!

Our charge today is to get Blake fluid negative and get him up and walking around more. We will post more this evening.

Recovery Day 2 - PM Update

Today was a great day overall for Blake. Most notably we moved to the recovery floor which is a private room with a bed and a bathroom which makes the recovery process a lot more comfortable for everyone.

Today's x-rays showed that Blake's lungs were moist and there were still some air pockets in his upper chest, but after three different x-rays throughout the day they have decided that they are improving and they won't do anything. As of now they are still planning on removing his medial chest tube tomorrow and switching his plural tubes to be small bulbs instead of long bulky tubes flowing into large boxes. He is completely off of oxygen now and maintaining oxygen sats in the low to mid 90s; they say that once he is more active and moving around more his lungs will dry up and these sats will go up, but he couldn't be happier not having the nasal canula bothering him.

They have also removed morphine from his regimen and replaced it with a steady dose of a Motrin equivalent and Tylenol w/Codeine as needed for pain. This decrease in narcotics has certainly allowed him to be more alert for longer periods of time. He watched several movies and enjoyed his Uncle Cory building him a Lego Buzz Lightyear spaceship. He also is now allowed to eat anything he wants (which isn't much) but we managed to get him to eat more orange Jello, some mac and cheese and some applesauce, so it's a start. After dinner, he walked. That's right, he walked. Only from his bed to the door of his room (it hurt and wore him out), but he was a trooper and he did it.

Loving my Buzz Lightyear Spaceship, but still a little down and out

Finally, he enjoyed getting to see his sister for the first time since surgery. He's been asking about Mason everyday and although he was pretty tired and listless by the time she got here, he wouldn't stop following her with his eyes, so you could tell he was happy to see her.

We would like to say a special thanks to our families, who are always wonderful, but especially wonderful now for entertaining and taking care of Mason (and Stanley), bringing Mason to the hospital to see us, sitting with Blake so we can spend an hour outside of the hospital, and letting us stay with them. Thank you! If it wasn't for ya'll it would be much more difficult to be able to get Blake the best treatment available. We love you.

Now we are just settling into our lovely new accommodations at TCH - I think this time I'll bunk with Blake in his bed instead of trying to squeeze into the twin daybed with Bryan!

Moving to Recovery!

Recovery - Day 2 (Moving Day)

Blake had a good night. The doctors tried to get him completely off oxygen so that we could remove the nasal cannula that irritates him like crazy. Unfortunately, his sats decreased to the low 90s so they were forced to leave it on with minimal oxygen going to him returning them to the upper 90s. He continued to cough through the night to get some of the build up in his lungs out. This caused him to vomit several times, but he didn't seem to mind. They feel like once his lungs dry out a little more and he is more active his sats will stabilize quickly without oxygen.

This morning they noticed that his white blood cell count was elevated which could be a result of him fighting an infection somewhere although he isn't running a fever. His x-ray results showed some moisture in his lungs so they have put him on a scheduled dose of Lasix to dry that up. We will see how the x-rays look tomorrow.

During rounds this morning they decided to go ahead and leave the 3 drainage tubes in one more day even though some of the doctors thought they should still be removed. Blake also gets to return to a fully normal diet today although he will still be fluid restricted. We have been given our papers to move from the ICU to the recovery floor today. Weekends at the hospital run incredibly slow, so who knows when the move will actually happen, but we are excited to get out of ICU today!

We will post another update this evening.

Recovery Day 1 - PM Update

Blake is resting so peacefully now.

Blake started off the morning with a mild fever that was expected and still heavily sedated with the plan to wean him completely off sedatives today. This would allow him to move around a little and be more alert with what is going on which is good for his lungs. We were able to quench his thirst with minimal fluids (15 ml or just over 1 tablespoon per hour) early, but as the sedation wore off he started to demand more and became inconsolable. During this time he was not having any pain, just thirsty. Nothing could calm him down and he would wear himself out causing his oxygen saturation to drop and his respiratory rate slowed down uncontrollably to the point we had to keep waking him up when he calmed down to get him to breathe which started the terrible cycle all over. Since his draining tubes were still draining less than taking in the doctors gave him a "Get out of Jail Free" card and let him have a complete Sprite to drink as much as he wanted. Blake jumped on that like a duck on a June bug, but was able to quench his thirst with only a couple ounces. Less than a minute after he was as calm as can be and took a great 3 hour nap.

After the nap we were able to remove his catheter, art-line, and neurological monitor being used for the clinical trial that he is participating in. Blake then asked for Mommy to hold him. The wonderful nursing staff at TCH are some of the most caring people as they will do just about anything to make these kids and parents happy so wish #2 granted. Blake then proceeded to watch several movies, eat some Jello, asked for his Buzz Lightyear, and gave his mom some great snuggle time. During this time he was weaned completely off the sedatives, Epinephrine, or antibiotics and now is only on pain relievers every 2 or more hours. His fever has gone away and has been resting peacefully for a while now and the Fellow said he should be going to a recovery floor tomorrow. He also will be getting at least one drainage tube removed tomorrow morning. The second half of the day was definitely better than the first.

All the prayers from our friends and family have been tremendous and have gotten him to this point. We can't thank you enough.

Always Room for a Little...

Big Boy Out of Bed

Recovery Day 1 - AM Update

Blake has been pretty calm and rested all night and this morning. He is still having his short, little fits, but now that we can give him ice and the tiniest bit of clear liquids that seems to calm him down more quickly. He has a slight fever, but nothing unexpected post-op it is very controlled with Tylenol. His biggest requests this morning have been for orange jello and a peach.

His drainage from the chest tubes still looks good as well. Dr Fraser came by this morning and said if we can stay stringent on the fluid restriction then he sees him moving along very quickly.

We just saw all of the cardiologists in rounds and they are going to wean him off the sedative that is keeping him in a fog, so hopefully he will start to be more alert and therefore his healing will be more productive. If he can stay awake more, we can get him some orange jello.

Other than that, today is about resting and controlling his pain. He will keep the chest tubes today and they expect he will move out of ICU and onto the recovery floor tomorrow.

Thank you all for your love and support. We will post another update tonight.

Surgery Day - Final Update

Blake could not be doing any better. Everyone that sees him is amazed by how wonderful his color is.

His chest tubes are draining great and there is no sign of fluid building up which is one of the side effects they are keenly watching for.

He is nicely sedated and being given generous doses of pain meds. About twice an hour he will wake up and scream bloody murder for about a minute. He has ranted, "My belly hurts," "I want a shirt," and "Why won't someone hold me?" He's confused and upset, which is to be expected, but clinically he is great.

Thanks again for all of your positive energy getting our guy to this point. We will post more tomorrow.

Post-Surgery Photo

He looks so good! His lips and toes and fingers are pink, and his oxygen saturation is 99%! They were easily able to extubate him and he's breathing minimal oxygen through the nasal canula. I wish words could describe how wonderful he looks!

Surgery - Update 4 - Success!

We just met with Amy and Dr. Fraser. Blake is done and everything went smoothly and completely as planned. His chest is closed and they are slowly waking him up from anesthesia enough so he can try to breathe on his own and hopefully remove the ventilators (his breathing on his own as soon as possible helps reduce fluid in the lungs). We should be able to see him in ICU by 3.

They did an extra-cardiac conduit with no fenestration, and the leak in in his tricuspid valve was so negligible Dr. Fraser said it wasn't even worth mentioning.

Hallelujah! Thank you God and to all our friends for your prayers and positive thoughts. Now we need to pray for little pain and a speedy recovery.

Surgery - Update 3

Blake is on the heart-lung bypass machine and they are starting the Fontan procedure now. He has looked great up until the bypass and there have been no surprises. When he went on bypass his blood pressure dropped a bit (which is typical) and because we donated directed blood to him they just decided to give it to him to not make his body work so hard. Now is the time when they are doing all of the work on his heart. Please pray extra hard during this time We expect another update in an hour or so.

Surgery - Update 2

We just got our second update and they have now opened his chest and Dr. Fraser is cutting through scar tissue from his previous two surgeries. This is a very delicate process as to not cut into the heart. Blake is stable and all of his vitals are looking good. We expect another update in about an hour.

Surgery - Update 1

We just got our first update from the wonderful Amy Hemingway (Dr. Fraser's nurse, as a side note if I could ask her to be part of my family I would, I love her that much). Blake is fully asleep, which apparently took a bit because he refused to give the anesthesiologist back his iPhone and kept playing with all his apps!

All of his lines and tubes are in. Breathing line went in really easily. His sats are at 88 right now - such a show off!

They are about to to a trans-esophageal echo right now to get one last look at his heart before they start cutting.

They expect our next update to be around 10 or so.

Brave boy before he went to surgery

He's off

They just took our brave boy off to anesthesia. His sats and blood pressure were better this morning than they have been in months. He's ready for his journey. He was so brave and left watching Yo Gabba Gabba on the anesthesiologist's iPhone!

Gameday

We have checked in and are getting ready to start all pre-surgery testing.

Pre-Op Updates

Today we had all of Blake's pre-op appointments which included an EKG, more blood pressures, measuring his pulse oxygen levels, chest x-rays, drawing blood, then meeting with cardiology, surgical nurses, anesthesia, social work, child life, and finally scheduling coordinators.

It was a very long and difficult day at the hospital. Being there three days in a row with over a dozen doctors and nurses poking, prodding, and asking questions started to wear on Blake's last nerve today, not to mention there was a lot of waiting around and our distraction tactics he was starting to catch on to, luckily Bryan is like a big kid and is great at distracting and I found a pack of cherry Lifesavers in my purse - these little jewels are miraculous bribery tools!

We had a couple of low points today also. When they had to draw blood Blake threw a bloody fit and jerked his arm which made them miss the vein and then they were digging around in his arm searching for it (which didn't improve the situation). They made a fresh start with the other arm and I was restraining him with my whole body while Bryan was holding his arm as stiff as possible. By the end of it, his tortured screaming made me sick to my stomach and I was a mess. Blake earned an ice cream sandwich for being so brave.

Finally after all of the testing, they took a look in his ears and saw some redness and fluid and were concerned he might have an ear infection so we had to wait for his white blood cell count to come back - which meant if his levels were down we might have to postpone surgery. His counts came back normal, and they decided to proceed as normal (unless of course he spikes a fever tonight).

All that to say, we were ready to get out of there when we did. We went to Nonni and Poppi's (Tiffany's parents) house to go swimming and blow off some steam, and it was nice to hang out with Mason and let Blake feel like a normal kid. Oh, and we made sure to use a generous dose of Swimmer's Ear tonight!

So, for tomorrow, we are first case, which means we arrive at the hospital at 6 AM, we go back for more testing and questions around 7 AM, and they expect Blake will go into anesthesia at 8 AM. They predict they will spend the first hour getting all his lines in and getting him stabilized, and then the next 3-4 hours cutting through his chest bone and scar tissue (from previous surgeries). Estimation is around noon or 1 PM he will go on the heart-lung bypass machine and the actual Fontan procedure will take approximately an hour. Finally it will probably take another hour to close the incisions and reassemble his chest plate, which would put him in the Cardiovascular Intensive Care Unit (CVICU) around 3 PM. Of course this is all just estimation; every case is different. We will be sure to update the blog tomorrow as we hear from the surgical nurses (they update us approximately every hour).

Thank you for all of your prayers and positive thoughts. Blake is so incredibly lucky to have such amazing doctors and nurses, and you all as his support system.

Developmental Assesment

Today Blake had a developmental assessment as part of the clinical trial in which he's enrolled that is testing the effects of being on the heart/lung bypass machine to the brain.

He had fun "playing games" and showing off his mad skills. Developmentally he is doing fabulously - of course we knew that - but, it never hurts to have a doctor tell you that!

Pre-Fontan Preparation

Today Blake got an echocardiogram and we met with his surgeon, Dr. Fraser. His tests look good - heart function good, pulmonary artery good, flow good. They see a tiny bit of leaking in his tricuspid valve, but nothing that warrants any intervention.

His oxygen saturations today were about 80, so about 2% lower than two months ago, but still respectable. They hope after his Fontan that his sats will consistently be in the 90s.

One of the hardest things to cope with mentally is putting your child that is doing so well through such an intense procedure. Dr. Fraser agreed and knows how hard it is, he says at this point it is elective, but the likelihood that if we didn't do it now that we would be back 6 months from now needing to do it is high. We are going to proceed because we feel what better time to give him the greatest chance at a speedy recovery than when he is strong. Also, it is very important for us to keep life as normal as possible for Mason and we would be interrupting school for her if we waited until the Winter.

The operation itself will most likely be an extra-cardiac (outside of the heart) method where they will be using a piece of Gore Tex to connect the inferior vena cava to the pulmonary artery in order to increase blood flow to the lungs. Because the lungs are not accustomed to getting this much blood flow, recovery is largely about removing extra fluid from around the heart and lungs.

They also do not plan on putting a fenestration in his heart because his oxygen saturation will be higher without it and it will prevent a secondary procedure to close it.

They described recovery as a "crapshoot", we can expect to be in ICU for 1-2 days and then on the recovery floor anywhere from one week to three weeks depending on how quickly the fluid moves out of his chest. He will also be fluid restricted and may need to follow a fat-free diet. Post-op, full recovery takes 6 weeks for his chest incision to be healed, so it should be interesting trying to keep a three-year old on the down low that long.

All in all, Dr. Fraser says he looks as good as he possibly can for surgery and gives him a 98% chance of surviving surgery and recovering completely.

That's all for today. Time to go to Lupe Tortilla, eat delicious Mexican food, and let him be a kid for the evening.

Blake and Mom being silly at Lupe's!

Thanks for all of your prayers.

Checking in for the Echo

Blake was amazed seeing the life-sized Anakin Skywalker greeting him while checking in for his echocardiogram this morning.

5th Birthday Party!

Thanks everyone for helping us celebrate Mason's birthday (a little early) this year! We had a great time bowling with our friends, and I have to say it reminded me of all my birthday parties as a kid in the Bowlerama in Brenham!

Beautiful Birthday Girl!

Blakey the Blakey

The Fontan

Blake's scheduled to undergo the last of his planned open-heart operations on June 23. We will have the surgery in Houston at Texas Children's Hospital with Dr. Fraser.

The below link does a good job describing the procedure:

http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/sv.htm