Thursday, June 28, 2012

Show off

Jensen is notorious for surprising people (that can be good and bad). He has a small part of his lung that is collapsed so his team put him on high flow oxygen to help open it back up. We have also been moving him and doing chest PT frequently. He still has a bad cough and plenty of secretions but he is sounding better. He actually doesn't need as much oxygen as he is on but they want to work on his lung. His sats have been high 80s, which is fantastic for a hypoplast at this stage! He is making Dr. Fuller (and us) very proud!

Tonight they took out his arterial line! It was in high groin and looked very painful so we are relieved they finally pulled it! Now he is getting his meds through the NG tube and he has one IV just in case they need it. Basically we are waiting on his lungs to clear up so we can get off the high flow and then s work on feeds. He has turned the corner and is doing great :)

This is him just after they pulled the chest tube intercardiac line, and paving wires. And his sats are awesome :)

Tuesday, June 26, 2012


We have been incredibly busy for the past two days. Jensen has improved so much since the last post. He was extubated yesterday and did really well with that. They put him on the high flow nasal cannula. Last night he did great but was wide awake all night and Jeremy and I had to take shifts (we each only slept for a couple of hours). Today was a little rough respiratory wise because he has a lot of junk in his lungs. He's been coughing and his voice is still very weak. He ended up needing breathing treatments and those made him hypertensive and tachycardic. It was incredibly stressful for Jeremy and I to see him with numbers that high. However, he looks and sounds better tonight than he did this morning.For now, clearing out his lungs ad weaning down his oxygen is a big goal.

Today at 3pm marked 48 hours of being seizure free!!He was taken off of the video EEG this afternoon. His team also took him off one of the three seizure meds. He is scheduled for a repeat Head CT on Friday. Hopefully there will be no change in his brain bleed. Thankfully he won't have to be intubated for that, they will give him oral meds.

His platelet count has finally evened out some and he hasn't needed transfusions as frequently. The are still waiting on test results to find out about the heparin induced thrombocytopenia (which means he is too sensitive to heparin and bleeds too much). That test will determine what type of meds he can go on for future bleeds and caths.

Dr. Fuller is really pleased with where he is right now. He is tolerating his continuous NG tube feeds and is much less swollen. He looks like himself again (just a slightly more beat-up looking Jensen). He had one chest tube taken out yesterday and the other should come out tomorrow, along with the two pacing wires. Although he still has a central line and pacing wires in his heart, Dr. Fuller insisted that I get to hold him today! He and I both needed it... it made a world of difference.

We are so grateful to have family here. They were able to help out with Jensen today while Jeremy and I caught up on sleep during lunch. They remind us to eat, bring us food when we can't leave Jensen's room, and do everyday things we don't have time for (like laundry, thanks Mom!). We can not thank everyone enough for your emails, messages, gifts, thoughts, and prayers, We are so blessed to have so many people supporting us and rooting for Jensen :)

Saturday, June 23, 2012


So much has happened since the last update I'm not sure where to begin. Yesterday Jensen was doing ok and Jeremy and I felt comfortable enough to go across the street for dinner. We came back and immediately noticed unusual movements. Jensen had started having seizures again (he first had them after the Stage I while he was on ECMO). He progressed pretty quickly from a small lip quiver and hand twitch to a full body seizure. He was continuing even after being dosed with anti-convulsants. Finally, after a couple of hours he settled back down and looked ok. We decided one of us should stay with him while the other sleeps at the hotel. I went back to the hotel while Jeremy stayed. Jensen started having more seizures and neuro ordered a portable head CT to see what was going on. The report from radiology came back that it was clear. I was crawling in to bed and Jeremy called again. 

Neuro looked at his scan and they realized Jensen had a brain hemorrhage and multiple strokes. I got back to the hospital as quickly as possible and Jeremy and I completely fell apart. Our baby has been through more than enough and this is infuriating. We put him through life-saving heart surgery and he ends up with neurological issues and a fantastic heart. 

This info came down at about midnight. We were told that the stroke specialists and Dr. Licht  would be by in the morning to explain everything and answer our questions. The only thing we could do at that point was wait, which was agonizing. We both stayed in the parent sleep rooms just down the hall from the CICU. 

This morning when we got up, they had been moved Jensen out of a pod and into a private room (Weston's old room for those of you who know him). We anxiously waited for rounds and for neuro to show up. Once they did, we got pretty much what we expected. Prognosis is impossible to say. The affected areas are hard to pinpoint. Only time will tell. Blah. Basically all the vague answers that I would expect from a cocky neurology fellow.We were frustrated to say the least. 

Dr. Licht is the only one who actually gave us real answers (that's why we love him so much). He explained that Jensen had watershed strokes, which are different from strokes caused by clots. This happens because of low oxygenation or hypotension. Arteries in the brain supply blood to certain areas but they don't overlap. The brain tissue in between two arteries is oxygenated by "extra blood" that is pushed out from each of the two arteries; its basically that both arteries are responsible for contributing blood supply to that area. When BP is low, blood is not pushed out with enough force to completely supply that area. The damaged parts of his brain indicate that Jensen has the potential for left  leg weakness and temporary blindness. The damage would not actually make him blind, he would only  appear blind because he is so young. He would be able to see objects in front of him, just not make the appropriate connections to understand what it is. Of course this is all conjecture and we will not know much until he is recovered. Jensen will be going in for another MRI to get a more accurate image of his brain.

The seizures were most likely caused by a combination of things including: the subdural and subarachnoid bleeds, the stress of his surgery day, and his history of seizures increased his risk for them. Jensen has also had low platelet counts today. Hematology wants his platelet count around 100,000 and this morning he was at 37,000. He had 3 platelet transfusions in the last 24 hours. Once the platelets are under control they will re-evaluate for anti-coagulation therapy. Keep in mind that he has also had multiple catheterizations in the past week and is at risk for clots. He is also now at greater risk for strokes. He needs blood thinners for his new stents and for the risk of clots. He needs to have a higher platelet count because of his brain bleed. Remember how I said everything is about balance? Yea, that applies now more than ever. 

The goals for the immediate future are to get rid of his swelling, monitor his anti-convulsant levels, and raise his platelet count. Jeremy and I are completely exhausted in every way. We have been happy, devastated, scared, and furious in the past few days. The ups and downs are so trying. Please continue to pray for Jensen. He needs strength to overcome this damage. Thank you all.

Oh and sorry if this post was detailed and/or sporadic. The main purpose of this blog is to help Jeremy and I remember Jensen has gone through. Of course we want our family and friends updated, but we also have foggy memories right now and this helps us keep track. 

Friday, June 22, 2012

Wash out is done

His chest has been washed out and closed. Dr. Fuller put internal stitches in this time so his scar will look a little different. His rhythm has been back to normal after she put the A wire in (they never had to use it, Jensen just likes to try out all the medical options!) Hopefully they will be able to extubate in the next day or two. I am hoping that he is missing out on the worst part of he recovery since he still has to be sedated. Now the issues to focus on are BP, fluids, and balancing his meds.

We're so lucky to have everyone's support. Also, there's a couple of heart moms here that make things so much easier.

Morning update

Jensen has had issues keeping his blood pressure up this morning. They are trying to keep it up without having to give him so many blood products, but he responds so well to blood (it's turned into a quick fix for his BP).He also had a fever this morning and that also dropped his pressures. Tylenol has helped the fever. Dr. Fuller is going to wash out his chest and close it this afternoon. She will also put in an atrial pacing wire because his rhythms have been slow/irregular. He is on fentanyl but that is already being weaned down. He isn't on any heart meds (his ventricular function is always stellar?! That amazes me.) He could be extubated tomorrow, but it depends on how things go today.

He looks pretty good considering what he has been through. We were terrified he would end up on ECMO again but that was never a concern of Dr. Fuller's. He has other issues like they weren't able to place a working arterial line so they had to attempt one in all I his extremities. They finally got one to work but he will now have a lot of scarring from the areas where they cut down to the vessel. He also has two chest tubes, so one new scar there too.

We are exhausted and are having a hard time speaking in full sentences! All in all we are happy with where he is. The issues he has are things that are relatively simple fixes, it's just about finding the right balance. That seems to be the trend with hypoplasts.

Once again, we are overwhelmed at everyone's kindness. We have received so many messages and prayers! I may not have time to reply to all of them, but we do read them. Thank you all do much and please continue to pray for our precious boy.

Starting recovery

Yesterday was a nightmare. We were awake at 4, at the hospital at 5, and Jensen went under anesthesia at about 7. He has his MRI then the surgery got started around 9. After multiple complications and a trip to the cath lab, he was finally moved to the CICU around 10 pm. 13 hours.

We felt like yesterday was a bad joke and we has a serious case of deja bu. we kept hearing things that we heard at the stage I: small pulmonary arteries, low sats, good heart function, narrowing in the LPA... Blah blah blah. Later in the day we were just tired of hearing updates and we just wanted to see our sweet boy.

He had an uneventful night but now begins the balancing act. They need to work on keeping his pressure up, fluid off, and keep an eye on his lungs. We are expecting some ups and downs until he gets used to his new circulation and recovers from the marathon surgery yesterday. Once he is more stable, they will close his chest and extubate him.

Then begins the battle with the famous "Glenn headaches". We were told he will be inconsolable and there's not much we can do for him. Jeremy and I will be pulling out all the stops to try and comfort this poor baby. I'm putting my game face on.

Please continue to pray for us and for Jensen's speedy recovery.

Thursday, June 21, 2012

Surgery day

We are at the hospital. Our favorite anesthesiologist Dr. Nicholson came to get him at around 6:30. She let me carry him back to the OR, then we gave him kisses and handed him over. He is having his clinical and research MRI first then he will go next door to the surgical suite. We are waiting on our CICU nurse to come and get us then we will be meeting with Dr. Fuller.

Thank you all for your prayers and messages today. Please pray that everything goes smoothly and our little man has an easy surgery.

Tuesday, June 19, 2012

Jensen is back to his old self!

Jensen woke up smiling this morning, like nothing ever happened! He hasn't even needed Tylenol today. He's awake, alert, playing, eating and peed on me twice this morning!

I called our pediatrician's office and got an authorization for his neurology consult with Dr. Licht. He already has an authorization for the surgery. The grandparents are making travel arrangements now.  I think we're all set for Thursday! 

Here's our big boy yesterday. He was just waking up in these pictures and VERY hungry. He was groggy and just wanted to hold on to his favorite puppy. He's such a warrior. 

Monday, June 18, 2012

Whirlwind of a day!

I didn't do a very good job keeping everyone updated, sorry! Today was so busy, we barely had time to do anything! Before I had time to post the 12:00 update, they were bringing Jensen back up from the procedure! Everything happened very quickly.

Jensen did wonderfully during the cath =) We couldn't be happier about how everything went. Dr. Glatz was his cath doc and went over all the catheterization images with us. Jensen did have a mild amount of narrowing around where his neoaorta and native aorta meet, which is to be expected. He also had some narrowing in his right pulmonary artery around where the old BT shunt is. During the Glenn, Dr. Fuller will be working with his RPA to connect it to the superior vena cava. While she is in that area, she is going to go ahead and reconstruct his RPA. They do this in a similar manner to the way they reconstructed his aorta: using a homograft to patch it after they flay the artery open. They did say something about his left pulmonary artery and for the life of me...I can't remember what it was. (Sleep deprivation much?!) More to follow on that.

During the cath, Jensen did not need to be intubated, which was such a relief for us! He has been a verrrry sleepy bear today. Apparently he is very sensitive to the meds they gave him, he's still pretty knocked out. 

We got a chance to talk to Dr. Fuller and Dr. Licht (we've missed them so much!) about scheduling. And the verdict is....Glenn on Thursday!!!
We are so relieved that we can get this over with in one trip. Dr. Licht came by to ask about doing his neuro workup. We are going to meet with him on Wednesday for an EEG and a neuro exam. He is working with the anesthesia team to schedule Jensen's follow-up MRI on the day of his surgery. Wednesday Jensen will also have another pre-admission visit for the surgery. At this appointment we will get his surgery time.

It is so good to be back at CHOP. We feel like we are home here! Jeremy and I felt our stress levels drop by half when we saw Dr. Fuller. Maybe its because I was an nervous wreck about the cath, but when I see her, I just want to cry! She is the person who saved our baby's life. She hand-crafted his heart and gave him a chance. We seriously love that woman =)

Tomorrow will be all about getting Jensen back on a regular schedule and eating like he should be (he's been so sleepy today he hasn't eaten much). Wednesday will be a busy day of appts and Thursday is surgery day. I can't believe its finally here!

I have some pics from today that I will upload later. The internet at the hotel is too slow to upload them...I'll try again later!

He just went back

The cath team just took Jensen back. He was pretty out of it bc they have him a round of meds before the team showed up. We talked to the doc and he said he will be talking to Drs. Fuller and Rychik about any decisions that need to be made. Hopefully a decision will be made this afternoon and we can talk to Dr. Rychik about the surgery.

We were told to expect him to be gone for a few hours. Our next update from the nurse will be at 12.

Cath day

We are at CHOP in the CPRU. Jensen is number two in line for the cath. He's doing much better than we expected. He hasn't eaten since midnight last night and he is definitely telling us he's hungry. Thankfully, he didn't sleep well last night so he has slept most of the morning. His IV fluids were started and I'm so thankful CHOP has an IV team to do it. They know exactly how to handle him and they get it over with so fast.

So now we are just waiting until about 10 or 11 for him to go down. We will update as we get updated from his nurse. Thank you all for your prayers for our sweet boy :)

Friday, June 15, 2012

We made it!

After what felt like a marathon traveling experience...we made it to Philadelphia. We got to sleep around 3 am after dealing with the world's dumbest people at every turn. Poor Jensen traveled in too many types of transportation for one day...strollers, car seats, planes, trains, and automobiles (literally)! Our trip also involved a mad dash through Atlanta. Here's a visual: Jeremy has a back pack and diaper bag strapped across his chest like some warrior from Braveheart (if only we had some face paint). In one hand he's carrying a car seat, in the other the folded-up stroller frame, each weighing about 20ish pounds. I'm running behind him precariously holding a 15 pound wiggly kid that for some reason is still awake at 11pm and a bag filled with milk and tons of medication. Jeremy holds the folded-up stroller in front of him like a shield and literally pushes people of the way. If I weren't so out of breath from sprinting with a chunky baby, I would have laughed hysterically. Thankfully, we did catch our connection in Atlanta. We showed up out of breath, sweaty, and frantically looking for our boarding passes as we were one of the last people to board. 

Jensen's pre-admission testing went as well as could be expected. He had an echo, chest x-ray, EKG, and blood work. He was happy, he was sad, he was tired, he was hungry...the whole spectrum of emotions. Monday we have to be at the hospital bright and early to start an IV to hydrate him (since he can't eat starting the night before). He will then have his cardiac cath. This will tell us if he is ready for the surgery or not. His docs will also look at his stent in his left pulmonary artery and decide if it needs to be dilated. If the pressures in his heart show that he is ready for surgery, the team will likely hold off on any intervention during the cath. 

If he is ready for surgery, we are hoping that it can be scheduled quickly. Otherwise, we will have to weigh our options of flying home and then coming back to CHOP later or waiting in Philadelphia for the surgery. We don't, by any means, want to rush him in to surgery however, this is definitely going to put a strain on us. 

As's the info about the surgeries.

Healthy heart

In the Norwood (stage I repair), Jensen received a Sano shunt which connects his pulmonary artery to his right ventricle (this is his only pumping chamber). He also had his aorta enlarged with a graft and then the aorta was connected to pulmonary artery. There were a few other details in this surgery, but those are the main repairs done.The whole goal of this surgery is to make his only pumping chamber pump blood to his body and to to his lungs. 

In the Glenn (stage II), the superior vena cava is attached directly to the pulmonary artery. This allows for the systemic blood from his upper body to bypass the heart. This deoxygenated blood can simply go straight through the pulmonary artery and into the lungs. This decreases the workload on the right ventricle. 

This surgery is the "easiest" of the three. It involves less micro-stitching and shunts and grafts...all the things that make the Norwood so risky. However, it is still open heart surgery. And a repeat surgery. That means the risk of bleeding and issues with scarring will be great. 

Monday, June 11, 2012

Philly in 5...4...3 days!

Wow, time is going by so quickly! We will be northbound this week! Jensen had a cardio appt in Cary today with Dr. Robinson. I swear that place feels like our second home; we are there so often, but mostly because the staff is so wonderful. We are lucky to have found them =) 

I got to carry my baby IN MY ARMS into the office and only had to bring along one small diaper bag. This was incredibly easy compared to our normal set-up: Jensen in the carseat, attached to the stroller. Bottom of stroller holds our notebooks and NG tube supplies/milk. Food pump hanging on one side of the stroller, with the huge jam-packed diaper bag on the other. I joked with the nurses that we look like a train wreck coming through the doors! lol! Have I mentioned how much I love Jensen being sans-tube?! 

Anyway, this appointment lasted for a mere 17 minutes! Most of that time was spent marveling over how wonderful Jensen is doing =) Jensen schmoozed all the nurses and showed off his super cute giggles. Dr. Robinson (and the rest of the staff) were very impressed with him. They said he looked pink and healthy, his sats and BP were great, and his heart/lungs sounded good. This was the first appt that we haven't had an echo because we are having one when we get to CHOP on Friday. Dr. R was totally comfortable not doing an echo, which makes me totally comfortable with it too. 

After that appointment, I feel a lot less anxious about the Stage II. I asked a lot of questions today and although I already knew the answers to most of them, I like hearing it from Dr. Robinson. He explains everything in a way that makes me feel more at ease about the surgery and everything that goes with it. Please keep us in your prayers this week as we prepare for our trip. I'm hoping that the trip up to Philly is as stress-free as possible so we can focus on the important stuff when we get to CHOP. Hope you all have a great week!

oh and....SPOILER ALERT: for my next blog I plan to refresh your memory on HLHS and the staged reconstructive surgeries. For those of you who want to know the anatomy of the defect and what the surgeries entail...stay tuned! I'm hoping that the more I post the facts about Jensen's CHD, the more people will be aware and pass along this information =)

Daddy's turn to dress Jensen! 

I love this sweet face

I've tried every tummy time trick I know and he still just lays there...hanging out with his puppy. Stinker. 

Mommy and Jensen day <3

Friday, June 8, 2012


On Wednesday Jensen's NG tube came out (again). It is becoming increasingly more difficult to keep it in. We are constantly replacing the tape and trying our best to keep his chubby little fingers away from it, but still we end up replacing the tube every week or so. Since we are so close to Philly, we thought we would just leave the tube out for one feeding and see how well he does. We had been given the green light to increase the amount in his bottles as he tolerates it. However, the NG tube causes his reflux to be even worse so we were never able to get very far. He is allowed to eat by mouth for 20 minutes. Any longer than that and he will be burning more calories than he is taking in. Keep in mind that his food is thickened to honey consistency (yuck)...this stuff is THICK. It is a lot of work to eat one bottle. He was previously only eating 40 ml by mouth of his 100 ml total volume at each feeding. 

We gave him a chance Wednesday afternoon to eat a 100 ml bottle. He gulped it down in 14 minutes with no problems whatsoever. I cried I was so proud! Jensen amazes us! The tube came out on Wednesday and we haven't looked back since! We have been doing every feed by mouth =) His medication is a little different and we're still working on finding the right way to give it to him but he's getting there. (Because it is thin liquid we are still worried about the risk of aspiration, so we're playing it safe.)

Its not ideal to have him take such a high volume of thickened milk by mouth, but he's doing it. Its a million times easier to deal with than the NG tube. No more testing his pH 500 times a day, no more taping and re-taping his poor little face, no more wasting milk to prime the line to a pump that only sometimes works... Ahhh this is wonderful =)

Can you tell we are a little excited?! I'm so proud of my little man...he's such a trooper! One of the things I'm most excited about is that when we fly to Philly, that's a lot less stuff we have to carry with us. The NG tube requires lots of supplies and a separate backpack to fit the food pump. Its a nightmare...was a nightmare. 

We have less than a week until we leave. Jeremy and I are becoming very nervous and are trying to spend as much time with our munchkin as possible. We are trying to get in all the snuggles and laughs that we can before he has to go through another surgery. This one is going to be tough but we are ready to move on. 

Sunday, June 3, 2012

11 days until we leave for Philly

Everything is going great here. There's not a lot to update on, except that our munchkin gets more adorable everyday! So..... photoblog it is!!

Jensen says: "Been spendin' most my life livin' in the gangstas paradise..." 

Its hard to be this cute

"Seriously Mom, more pictures?!"

Captain Cutiepants

annnndddd we're falling over!

He was drooling so much I had to protect his stinkin cute outfit so I can take more pictures later =)

Friday, June 1, 2012

Weston's 1 Year Anniversary

Today is a big day for a special heart family we met at CHOP. Weston has been in the hospital for 1 year today! He is one of the most vibrant, funny kids I know. He is full of life and always ready to play. He is pretty famous around CHOP...everyone knows his name. Weston is frequently seen walking down the hallway of the CICU wearing some awesome costume escorted by his "entourage" of nurses and respiratory therapists! He has also been able to roller blade and bike through the cardiac unit! He recently just graduated kindergarten and attended the prom at CHOP. 

Its so funny how things work out sometimes. Before we actually met Weston and his family, we found out that they were from northeast Tennessee too! Weston loves Pal's just as much as we all do =) We finally were able to meet Weston, his mom, his grandmother, and one of his sisters and we love them all! This family is amazing and puts true meaning to the phrase "making the best out of a bad situation". From talking to this family you would never know that Weston is waiting on a new heart and lungs. They are so incredibly positive and have the best attitude about their situation. 
This family sets an example we should all follow!

Although it is sad to think that any kid should have to spend an entire year of their life in a hospital (on top of all of his previous hospital stays), things are looking up. Weston has stepped down to the CCU and will be discharged soon! He has made amazing progress! Although he is still a very sick kid who needs a heart/lung transplant, being out of the hospital will give him and his family a more normal life. I couldn't be happier for this precious family =)

From the Willis family to the Keeton family, Happy 1 Year Hospitaliversary!