Benscoter Family: June 2016

I posted updates almost daily on our Tyler's Team Facebook page during the month of June so I will just share those updates below.

June 1st

Today we developed a schedule for Tyler's weekdays. I anticipate that it will take us several days to get in the groove of things but I hope it will help him have more energy for therapy and to sleep better at night.

Tyler got frustrated during occupational therapy today because he struggled with getting dressed and with playing games that required a lot of hand-eye coordination. Physical therapy was a bit difficult as well since it was right before his nap time. I did not allow him to have any brief naps throughout the morning in an attempt to get him on a better schedule. I'm really hoping he will get great rest tonight!

I am happy with the progress Tyler is making but I am concerned about his vision. I am hopeful that he will get better but I've spent the majority of the day trying to figure out how his vision can get tested and which discipline can help inform us as to what he most likely does/does not see.

I'm worried about his little spirit. He will give me brief glimpses of the sweet, smily boy he is but those moments are rare and fleeting. He has overcome so much but he is still pretty grumpy and withdrawn. I'm afraid he may be confused, anxious, and scared.

Please keep thinking of and praying for Tyler! This is a long a tiring road to be on for a little boy.

June 2nd

Tyler had a really good day today. We are getting back on track with a normal schedule and he was so worn out after our quick excursion outside and after his therapies that he had a solid two hour nap. He slept so peacefully and it was AMAZING. I'm hoping he'll be able to sleep that soundly all night long tonight.

We had a lot of fun after naps because Sophia, Emmy, and Nana came to visit! Sophia and Tyler made a sign together! I was so happy to get to spend a few hours with the girls and give them lots of hugs

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Tomorrow Tyler will have another head CT scan as well as a consult with a neuro ophthalmologist to try to determine what Tyler is and is not able to see. Please pray that his head CT is stable and that the neuro ophthalmologist is able to give us a lot of information about Tyler's visual impairments and how to best help him recover.

June 4th

We had a rough day yesterday since Tyler did not sleep well. The physical demand on him to rehab is so great during the day especially when his little body can't seem to stay asleep for more than 1-2 hours at a time at night. I addressed my concerns about his lack of restful sleep at rounds and so the team came up with a plan that we will test out over the next several days.

Tyler also had a "suction event" on his VAD yesterday which basically meant that the blood flow through his VAD was low--essentially, he was dehydrated. It resolved once we laid him in bed but for extra caution he was given pediasure through his NG tube while he napped.

Tyler was assessed by an ophthalmologist yesterday evening. The ophthalmologist observed him sitting up in his chair feeding himself mac and cheese while watching shows on an iPad. The ophthalmologist said he was extremely impressed with how well Tyler was interacting with his environment. He said he did not expect to see him coping so well after seeing the images from his original CT scan. He tested Tyler's visual fields to the best of his ability (Tyler is too young for a full formal assessment because the test requires a lot of time, attention, and patience which is difficult for a three year old). It is apparent that Tyler has visual field cuts but it is near impossible for us to know how large his field cuts are. He encouraged us to continue to challenge his vision in a functional manner during his daily tasks as well as when he participates in OT and PT. He said that Tyler will always have some form of visual impairment but that we should encourage whatever natural ways his body attempts to compensate. We will follow up with ophthalmology 1-2 times a year to continually try to assess his vision in an attempt to educate ourselves and eventually his teachers on what he can and cannot see.

I find myself feeling frustrated and upset that Tyler has one more thing that he has to deal with. He's such a sweet boy and in his three little years of life he's had to endure a large amount of hardship.

It's boys weekend at the hospital-- Joe is with Tyler and I'm spending some time with the girls at home.

June 6th

Tyler had a great night last night...he slept 8 hours straight! He was also able to eat and drink enough to not need any formula through his NG tube today! Tyler is a total rockstar 😎

There has been some trouble keeping Tyler's blood appropriately thin on IV heparin. His dose is constantly increasing and each time the dose is manipulated he needs to get his blood drawn. He had to get blood drawn at 11am, 8pm, and will get his blood drawn again at 3am

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Tyler has a cardiac catheterization in the morning. He will be the second case of the day so he should be going back to the cath lab around 10:30. This cath will help the doctors determine the pressures of his vessels and to make sure the VAD is at the most optimum setting for Tyler.

Please pray that his heparin levels will stabilize so that he won't need blood work more than once a day. Please also pray that his cath goes well and that he is not too irritated by not being able to eat prior to the cath and that he does well with the six hours of flat bed rest following the procedure.

Thanks for the prayers and all the love that is poured into our family throughout this time! Check out Tyler sporting his new VAD backpack!

June 7th

It's been a bit of a rough day today. Tyler's blood thinners have constantly needed to be adjusted which means he has been getting his blood drawn several times a day. They placed a blood drawing IV at 4:30am this morning to get his labs and, thankfully, they've been able to draw all of his blood from that IV today. However- they need to draw his blood every few hours throughout the night tonight and the nurses don't think his IV will last for all of the draws. If it doesn't last, Tyler is going to have to get another IV put in tonight. The whole process of getting his blood drawn is very stressful and sometimes painful for him

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He went back for his catheterization at 11:00 and he was very frustrated not to be able to eat or drink all morning. The cath went very well and the doctors were able to gather a lot of helpful data regarding his VAD and the pressures in his vessels. He only had to be on flat bed rest for two hours so that was nice.

After his cath was completed, all of his stitches were removed from his sternum. Throughout the afternoon and evening he bled considerably due to his blood being excessively thin and due to the fact that his skin had started to grow over some of the stitches. I was happy to give him a nice bath before bed so that I could get the dried blood and iodine off of his skin.

Tyler has had a very low appetite and low energy level since his catheterization. Please pray that his blood drawing IV lasts through the night and that he gets a bunch of much needed rest. I am hopeful that he can bounce back quickly and have a great day tomorrow filled with lots of play time and eating!

June 9th

Tyler had to endure several blood draws throughout the day but he was a real trooper. He finally became therapeutic on his heparin so he won't be getting blood drawn until the morning.

He is eating well and tolerating therapy most of the time. He does get tired easily and he is still pretty weak so he still has some work to do.

His mood was exceptional today-- It has been weeks or months since I've seen him laugh or smile as much as he did today. It does this Mommy's heart good!

June 9th Post #2

Tyler slept for 10 hours last night and also had a solid 2 hour nap this afternoon. His mood has greatly improved and his appetite has been good enough to keep his NG tube out.

He has been more stable on the IV heparin over the last 24 hours. He is still not therapeutic on the Coumadin (oral anti coagulation) but once he is, we can take him off of the IV heparin. Once he is off heparin, Joe and I will take him on two excursions (one in the hospital and one longer one outside of the hospital) to make sure we feel comfortable with managing his VAD. Needless to say- we are hoping he becomes therapeutic on Coumadin soon so that all of these other pieces can fall into place.

We do have a new possible "hurdle" to clear before Tyler's transplant. It is apparent through Tyler's blood work that his immune system is forming more antibodies since getting his VAD. It is possible that this increase in antibodies is transient...but it's also very possible that it is not. His number of antibodies have spiked so high that his pool of donor tissue types have significantly narrowed. This DOES NOT mean he won't get good offers but it DOES mean that the transplant team would only accept a heart that is a tissue type that his body is not ready to fight against. Bottom line- the percentage of donor tissue types that would be good for Tyler is very, very small. Tyler's doctors have decided to combat this by starting IV medications that will help to suppress his immune system and hopefully decrease the number of antibodies his body produces. These therapies are called IVIG and Rituximab. Tyler will get his first dose of IVIG tomorrow and he will continue to get it on a monthly basis as he waits for his new heart. The Rituximab will be given on an "as needed" basis which will be determined by a specific lab value. It may take several weeks for his immune system to respond to the IV medicine but we are hopeful it will help Tyler get matched with his perfect new heart.

We had a fun afternoon...Joe and Sophia came to visit! We got to have a little field trip down to the atrium and outside to a nice courtyard so we could enjoy some fresh air 😎☀️

June 10th

Tyler had another great night of sleep last night and a busy day today. He had a couple of hours of therapy and we even did his PT session outside which was awesome! He has been experiencing a fair amount of pain in his left elbow over the last two days. His X-rays came back normal- no fractures- so the ortho doctor suggested we splint it over the weekend to give his soft tissues a rest. He seems to really like the splint!

He is still not therapeutic on his Coumadin so he is not off heparin yet. He started IVIG this afternoon and he tolerated it well.

We are seeing a lot more smiles and hearing lots of giggles these days, thank God!! He has been drinking tons of strawberry pediasure and eating lots and lots of cheese. He orders cheese slices for breakfast, Mac and cheese for lunch, cheese-itz for snack, and cheese pizza with cheese slices on the side for dinner. It's the same thing every day and night!! The woman at the cafeteria cracks up every time I call to put in his order!

He should have another quiet boys weekend hanging out with Joe. I'm glad to be home with my precious girls!

June 15th

Tyler has been doing really well. The weekend was relatively quiet and we have been busy the last couple of days with PT, OT, music class, outings to the atrium, and going outside.

There isn't really much to report other than we are just waiting for his INR to become therapeutic so that he can come off of the IV heparin. Once that happens we will get to take him on his excursions. After that, we'll be headed home!

June 16th

Not much to report here...we are still waiting for his INR to be therapeutic. Despite a steady incline in his Coumadin doses, Tyler's INR has remained about the same as it was when he started Coumadin 10 days ago.

So, we will wait for his INR to become therapeutic and we look forward to the days that we will get to take him on his excursions. In the meantime Joe and I spent more time doing extra VAD training and taking a refresher CPR course today.

Tyler has the beginning of a small cavity in one of his front teeth. The CHOP dentist that examined him today said that it is common to see cavities in children that take medicine frequently because of their high sugar content. He will be followed by the CHOP dentists as an outpatient to make sure his cavity doesn't get any worse.

Although we are eager to get him home, it has been so awesome to see all the smiles and hear all of his sweet giggles. I'm so happy to know that he is feeling so much better. What a blessing.

June 18th

Tyler's INR is still not therapeutic. We didnt let that stop us from making the most of our day though! We had PT from 9-10, OT from 10:30-11:30, and music class from 11:30-12. By noon he was really ready for mac and cheese! He passed out around 1:30 and I had to wake him up at 5!!!!

Since his mornings are so busy, his nurse said his slogan should be "Rise and grind" ☀️

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I think it fits his schedule pretty perfectly!

Joe came to relieve me at the hospital tonight so it's boys weekend again.

June 19th

INR is still not therapeutic but it's getting closer. We had fun all being together at the hospital this afternoon to celebrate Daddy and Grandpa on their special day.

June 20th

Tyler's INR is not in the range that they want it to be but it's really close. In fact, it was good enough to shut off his IV heparin and say "see ya!" to his IV pole. His blood is currently within the INR range that was deemed therapeutic prior to his VAD but now with the VAD the doctors want his blood to be a tiny bit thinner.

WE ARE THRILLED!!! This means we can go on our hospital excursion tomorrow! If all goes well with that, then Joe and I will be taking Tyler out of the hospital on Wednesday for a six hour excursion in Philly. If that goes seamlessly, we may get to bring Tyler home soon while we wait for his new heart

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What a blessing today has been...and a huge leap in the right direction.

June 21st

We had a great time going on two short excursions in the hospital today! No IV pole and no nurses...just the two of us!

The IV in his right hand and the PICC line in his right upper arm are both out. We are ready for our big excursion tomorrow! Joe and I will be taking Tyler to the zoo for the day. He's super excited and so are we!

If all goes well tomorrow, the plan is to discharge home on Thursday! Please pray for all of us as we prepare for the transition home. It is something that we are all excited for but it will take a lot of effort and coordination to pull it off.

Thanks for the continued love and support!

June 22nd

The zoo was awesome!!!! Being in the fresh air and sunshine was pretty great. Tyler went on the carousel, rode a train, got Spider-Man face paint, and--of course--saw tons of cool animals!

We didn't have any issues with his VAD so we are still set to discharge home tomorrow. When I told Tyler we were taking him home soon he got a huge smile on his face and said, "I'm so excited!"

June 23rd

He's home!!! As we were coming off of the elevator to go to our car Tyler said, "I'm so happy we don't have to live at the hospital anymore...and I'm free!"

Tyler has been so relaxed and smiley! It's great to have him back here with us AND for our whole family to be together again.

We will be driving back to CHOP in the morning for a check up.

June 25th

Tyler has been so happy and relaxed since he got home on Thursday. Unfortunately, we had to go back to the hospital on Friday for a check up and lab work. He started crying as soon as he saw the hospital

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We found out on Friday that his blood was too thin so we had to adjust his Coumadin. We had to take him to a local lab for a blood draw this morning and we will go again tomorrow morning for more blood work. Please pray that we can get his INR stable soon so that he can stop having his blood drawn every day. Our poor buddy has had his blood drawn at least once a day every single day since he was admitted on May 14th. We'd all really love if he could catch a break!!

June 28th

We had a follow up at CHOP this morning. He was so brave during his blood draw (side note- he had a day off from lab work yesterday, it was glorious!). He's looking really good! No major issues so far which is amazing. We will head back to Philly on Friday for his next check up.

Tyler asked me to bring him to the park this afternoon. I was thrilled that he is wanting to get back to the things he loved to do before he started having heart failure.

I'm not sure if the doctors would love that he is on a swing with a VAD but we like to take a walk on the wild side now and then