September 6th was the big day! Us ladies had hair and make-up done at the hotel followed by pictures. Joe and the kids took a trolley to the church while I rode in the limo to the church with Melissa and the rest of the bridesmaids. The ceremony went flawlessly-- Tyler did a great job escorting Nana and Sophia was a wonderful flower girl. Afterwards, we took the trolley to the reception. The company, food, and dancing could not be topped! We all had such a blast dancing the night away!
After spending some time with family and friends at the brunch on September 7th, we drove for a few hours. We stopped in Virginia, swam in the hotel pool, and then we all crashed for the evening. We had a full day of driving on September 8th but made it home by dinner time. We had a few quiet days before the next big event this month: Tyler's Fontan surgery.
Grandma and Grandpa arrived in New Jersey on September 10th. Nana met Tyler and I at CHOP during our pre-op visit on September 11th. Tyler passed all of the tests with flying colors and we were given the green light for surgery the next day. That afternoon we had quite an adventure in Philly-- we took a cab to the apartment I had rented so that we could be close to the hospital while Tyler was admitted. Unfortunately, the unit was very smoky so, after a few phone calls, we were hauling our luggage downstairs and out to another taxi to take us to a different apartment. Once we got settled in, it wasn't much longer before Joe and Grandma were there to join us for the evening.
We all woke up very early on September 12th. We took a cab to the hospital and were in the cardiology unit by 5:30am. Tyler was given a sedative through his g-tube and Joe and I said good-bye to him around 7am. It took a couple of hours for the team to get him prepared for surgery: they got him fully sedated, placed IVs, and put him on a ventilator. During this time, Joe, Nana, Grandma, and I met with his surgeon, Dr. Mascio. Dr. Mascio was very familiar with Tyler's medical history and he gave us all the utmost confidence that he was the perfect person to operate on our heart warrior. He began surgery just after 9am that morning. Throughout the two weeks that we were at CHOP I posted updates on Tyler's status. Here is what I posted:
September 12th- post #1:
Tyler update/approximate times of events--
9:10 surgery began
9:45 Tyler on heart bypass
11:00: Blood vessel traveling from his lower body to right atrium (IVC) detached, gortex tube attached to IVC and surgeon began attaching top portion of tube to pulmonary arteries.
12:15: We are told Tyler is done!
9:45 Tyler on heart bypass
11:00: Blood vessel traveling from his lower body to right atrium (IVC) detached, gortex tube attached to IVC and surgeon began attaching top portion of tube to pulmonary arteries.
12:15: We are told Tyler is done!
They will watch him for 15-20 minutes to make sure his bleeding is controlled and that he seems to be doing well. Afterwards, they will attempt to take Tyler off the ventilator if he tolerates it. We will speak to the surgeon sometime in the next hour and will hopefully see our warrior in about two hours.
Thanks for the continued prayers and support! Although surgery is through, our super hero has a lot of recovering to do. Please keep him in your thoughts and prayers!
September 12th- post #2:
We were able to come into the ICU and see Tyler around 2PM. He has a chest tube, a catheter, 3 IVs: one in each hand and one in his heart, an arterial line in his wrist, and is on supplemental oxygen through his nose (he came off the ventilator before leaving the OR). With that being said...He looks so good!
The surgeon said the surgery went as well as it could have possibly gone All of his vitals are stable, his chest tube drainage is normal and so is his urine output. BUT-- tonight is a very big night. Tyler is still in a very critical and delicate stage. Please continue to send your positive energy and prayers his way!
Specifically, I'd ask for you to pray for his comfort. Tyler had been waking up, crying, tossing his head, and kicking his legs. My sweet boy is uncomfortable and confused. The nurses and doctors are being very diligent in their attempts to control his pain while also trying not to suppress his breathing.
From the bottom of my heart-- thank you!!
September 13th
Tyler has been very restful this morning. He slept from 6am to noon. He even slept through the removal of his heart IV, arterial line, and urinary catheter!
They have taken him off his heart med, sedatives, and IV fluids. At this point, Tyler has no interest in eating but has been drinking a lot. He cycles between being awake and asleep but he is now very calm when he is awake. It is clear he is uncomfortable but he's easily soothed when held and rocked (which I love to do!).
Up next:
1- Tyler will be getting non-narcotic pain meds via his g-tube from now on
1- Tyler will be getting non-narcotic pain meds via his g-tube from now on
2- Tyler will be getting diuretics every 8hrs through his IV since he is retaining fluid which is very typical after this surgery
3- Wean Tyler off supplemental oxygen as tolerated. Tyler's sats should be 85% or higher (optimally) and right now he is 89% on 1L. To give some perspective-- 100% is perfect in "normal" adults/kids and he was 78% before surgery
4- Begin tube feeding Tyler his formula tonight
5- Begin Tyler's blood thinning medication tonight
6- Continue to monitor drainage coming out if Tyler's chest tube. He will certainly have it through the night but if all goes well, he may get it out as early as tomorrow.
September 14th
Tyler has been doing well since my last post. We were unable to give him pain meds through his g-tube yesterday since he is showing no interest in eating what-so-ever. The oxycodone would irritate his stomach if he had no food in it. So, we continued with IV pain meds all day yesterday.
Last night Tyler began taking his blood thinners again. We also started feeding him formula through his g-tube. We have been running his feeds at a slow pace but he has had some discomfort and has even vomited a little bit. He is a bit constipated from all of the medicine so we are praying for a bowel movement!
He has been having more drainage through his chest tube so it will not be removed today. His chest xrays are improving so we are happy with his progress.
So, for now we focus on pain control and feedings. Once his drainage slows, we can discuss the removal of the chest tube. Once the tube comes out we may be able to make it out of the ICU.
Thanks for the continued support during our journey!
September 15th
Tyler pooped! A lot! Several times!
Unfortunately, they took him off his heavier pain meds to help facilitate the bowel movement process so he was in a lot of pain. He has also not slept longer than 2hrs at a time which we assume is the severe discomfort that accompanies having a chest tube.
His blood levels are in the therapeutic range, his sats have stayed 85%+ without supplemental oxygen, and HE WALKED TODAY! He hated it but that's beside the point
Check out the video so you can see how good I am at torching my poor little man! He's been such a trooper!!
September 16th
Tyler continues to progress well! The best news is that he is now out of the ICU! He was able to get into the step down unit even though his chest tube is still in. The drainage in his chest tube is decreasing but is not slowing enough to have it pulled out.
Tyler's pain is better under control but he is still wildly uncomfortable with his chest tube in, making it difficult for him to sleep for long periods. Last night he slept off and on, usually for 30 minutes at a time. His longest stretch was from 4am-6am this morning.
Otherwise, Tyler is doing great! He is tolerating his tube feedings, the thickness of his blood is in the therapeutic range, and he is pooping regularly.
Please pray that the drainage in his chest tube slows enough so that it can be removed which will bring him some relief and much needed deep sleep.
September 17th
Tyler and Joe had a rough night last night and neither got any sleep. As of this morning, Tyler was constipated, had a low grade fever, and his heart rate was 164 (he is usually between 110-125). It was easy to tell that he was in severe pain and discomfort.
I was able to speak with the attending physician shortly after my arrival and together we came up with a pain medicine "cocktail" that would control his pain without constipating him too bad. Within an hour after getting his new medicine, Tyler had several bowel movements, his heart rate was in the 130s-140s and he was feeling so much better...it brought extreme joy to my heart!
Tyler's chest tube drainage is slowing down some more but not enough to warrant the removal of his chest tube. They want his drainage to be less than 100ml in a day and the last three days have been 340ml to 270ml to 190ml today.
Tyler was evaluated by physical and occupational therapy today and he did great! He tossed bean bags, kicked a ball, and even walked a short distance with them.
Here is a picture of my two guys taking a late morning snooze since they were both exhausted!
September 18th
Today has been a day of ups and downs for us. First, Sophia had preschool orientation today and she just loved meeting her teachers and playing in her classroom with her best buddy, Hunter.
Second, Tyler's chest tube drainage slowed significantly over the last day so the chest tube was removed today...hooray!! Unfortunately, our little man continued to feel quite poorly and he even spiked a fever and vomited. The fever lead to blood testing which revealed increased white blood cells and significantly increased inflammatory markers which indicate he has an infection. We don't know what kind of infection he has but whatever it is, it is wiping our boy out. He is miserable.
So we start with broad spectrum antibiotics tonight and hope he feels better soon. In the meantime, his blood will be cultured to rule in/out a infection in his blood. He will have a cardiac echo first thing in the morning to check his heart function to make sure the infection is not in or around his heart.
The reassuring news is that Tyler has stable vitals. His blood pressure and oxygen saturation are within normal limits which is very good. However, he looks and feels miserable which is so hard to see. Please keep our son in your thoughts and prayers.
Specifically, I ask that you pray for continued stable vitals and perfect heart function. Please pray that the infection is easily treated and that he feels much better soon.
Thank you sweet friends and family!
September 19th
What a day! Tyler began antibiotics last night and by late morning he had retained almost a liter of fluid. Our little man was puffy! He has been on several strong diuretics which have helped his fluid levels decrease but he's still a bit overloaded.
Tyler's electrolytes are off since he has been on so many diuretics. He is getting sodium and chloride supplements which are helping that situation. They cultured some of his blood last night and as of right now, there is no reason to suspect he has a blood infection.
However, the bottom portion of his sternal incision began draining a fair amount of fluid. The area around the incision is red and the surgical wound itself is yellow. We suspect that this is the sight of the infection. Tyler will have dressing changes three times a day with peroxide to help clean and heal that area.
Tyler also had a echo of his heart and all looked well there. The attending physician said that there is no reason to believe that there is an infection in or around his heart. Furthermore, his cardiac function has not been compromised in any way, thank God!
Tyler has been acting more like himself and he even participated in physical and occupational therapy. He walked for 100ft and even climbed up one step! His pain is much lower too...he has only been on Tylenol and oxycodone since 8am this morning. This is the first time that Tyler has gone more than 3-4 hours without an IV narcotic (in addition to around the clock Tylenol and oxycodone) to keep him comfortable since surgery last week.
Tyler's blood pressure, heart rate, and oxygen saturations continue to be stable. In addition, he has been sleeping SO SOUNDLY today! I am so grateful for such an amazing day of healing for our sweet boy and the continued love and support we get each day.
September 20th- I didn't make a post but the day was spent advocating for Tyler to have surgery in order to remove the infection at the surgical site on his sternum. We were persuasive enough because Tyler was brought to the OR the next day.
September 21st post #1
Tyler's surgery took about an hour. His surgeon said the wound was superficial and his sternum and heart had not been affected, thank goodness! Tyler has had a small, right-sided pleural effusion (fluid around his lung) which had not changed in three days so they placed another chest tube. The surgeon hopes to take it out in 1-2 days.
Tyler gets really wild when coming off anesthesia so it's been a bit of a challenge. He was hungry, thirsty, and in some pain when he woke up. His nurse is fabulous and gave him meds to keep him comfortable. However, we had to keep him away from drinking and could not start his g tube pump until 4. That meant we were dealing with a very unhappy kid for a few hours
He is getting pump fed now and can drink what he wants so we are in a better spot although he remains mildly uncomfortable. The surgeon said he may spike a fever tonight so we are watching out for that as well. Because of all of these things, we may remain in the ICU tonight just so he can have more individualized care while the sedatives get out of his system.
September 21st post #2
Tyler is recovering nicely and he never spiked a fever. We are back in our room in the step-down unit. He is resting well and is weaning off supplemental oxygen (again).
He will be on IV pain meds through the night to keep him comfortable. We will wean off those in the morning if he is able to tolerate it.
We should have a quiet night until chest X-ray/ finger stick at 4am and blood draw at 6am. Thanks for all the love and support!
September 22nd
Our sweet Sophia went to her first day of preschool today! We are so excited to see her in her new role as a student
Things at CHOP are going in the right direction. Tyler's white blood cell count and inflammatory markers are significantly reduced since his wound washout. He will remain on IV antibiotics for the time being but we hope he will transition to oral antibiotics very soon.
Tyler has a lot of throat irritation and increased cough from being on the ventilator yesterday. He frequently gets into coughing spells which has made it difficult for him to sleep soundly.
Tyler's chest tube has very little drainage so we hope it can come out in the next day or so. Tyler's chest X-rays still show some fluid around his lungs which means he will continue on his three diuretics.
In conclusion, we are hoping:
1) We can get Tyler off IV antibiotics
2) Tyler's chest X-ray will clear up soon so we can wean off some of his diuretics and get his chest tube out.
3) Tyler's throat irritation dissipates so that he is more comfortable and can sleep soundly.
1) We can get Tyler off IV antibiotics
2) Tyler's chest X-ray will clear up soon so we can wean off some of his diuretics and get his chest tube out.
3) Tyler's throat irritation dissipates so that he is more comfortable and can sleep soundly.
September 23rd
We had a GREAT day today!!
Tyler's chest X-Ray looked much better this morning so his chest tube was removed as was the bandage over his sternum. Everything looks great!
Our original plan this morning was to continue on IV antibiotics until tomorrow at which time he would transition to oral (g-tube) antibiotics. However, both of his IVs stopped working at different times today so we switched over to oral meds this afternoon. I am thrilled for him to transition over to oral meds but I'm concerned that we may need IV access at some point before we are discharged...let's hope that won't be the case. It should be noted, however, that Tyler is very glad to have the use of both hands now!
Tyler also transitioned to oral diuretics from IV diuretics today. His electrolytes are still a bit low from all the fluid being pulled off of his body so he is getting supplements through his g-tube for that as well.
The most concerning thing that happened today is that we learned Tyler's blood is really thin. He is on his regular dose of Coumadin but he has been on several different medications that he typically doesn't get at home and lately he's been having some diarrhea from the antibiotics. Both of these factors can cause your blood to become more thin. Tyler's goal INR (a lab value to describe the thickness of blood) is supposed to be between 2-3. His was 10 today...it's really, really thin. So, we will just hold off on giving him Coumadin until his blood thickens up. He will get blood drawn daily to check specifically for the INR. We hope he will drop back into the therapeutic range soon.
Anyway-- back to the fun stuff! We had very special visitors today! The Dixon family (all the way from Hawaii!) and the Rappa family came to play all day! By the time the cardiology team came to round on Tyler, he was sitting on his play mat with Eden, Hunter, Will, and Sophia buzzing all around him! It was joyous chaos! The doctor also gave us permission to take him off of the cardiology floor so we went down to the atrium and cafeteria twice today. I think he enjoyed the field trips
All in all, things are great here. Our goals are to keep his lungs looking clear on chest X-ray and get his lab values more normalized. Specifically, we need his electrolytes to increase, his INR to decrease, and his white blood cells and inflammatory markers to come down just a touch more. I think we are on the right path!!
Thank you, family and friends!
September 24th
Today was a relatively quiet day for us. Tyler's blood has thickened up and his INR is now a 3.m which puts him in the therapeutic range. His white blood cells and inflammatory markers are steadily decreasing. His lungs are looking better and his electrolytes are becoming more stable.
So, the plan is for Tyler to have his INR checked again tomorrow to make sure he is still therapeutic. Other than that, there is nothing else planned but to buy the doctors another day to make sure Tyler is stable on his meds.
He will get lab work again on Friday morning and if everything looks good, we could be headed home before the weekend! Let's pray for a quiet day tomorrow and good lab results! Tyler is very anxious around all hospital staff so I can't wait to have him home where he is much more comfortable.
September 25th
We had a quiet day, just as we had hoped. Tyler will have blood drawn around 6am tomorrow and if all looks good, we will be getting discharged! Praise The Lord!
What an incredible journey. Much love.
September 26th
Discharged and heading home!
It was SO NICE to get Tyler home. He was totally exhausted but I think he felt more comfortable at home. Tyler spent the rest of the month resting and recovering. My Mom was a huge help with the transition from the hospital back to normal life at home. She was sweet enough to take care of Tyler on September 28th while Joe and I took Sophia to a Phillies vs. Braves baseball game. It was so nice to spend several hours just focusing on her. She loved eating cotton candy and dancing to the music! We celebrated Grandma's birthday on September 30th by taking a trip to the park in the morning and eating some delicious carrot cake after dinner.
It is safe to say that September was our busiest month this year!
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| Family photos :) |
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| Look at those curls! |
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| Two brushes at once! |
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| Playing at My Little Adventures |
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| Someone likes to be destructive |
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| Watching some Elmo during dinner at the rest stop |
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| Its been a long day in the car! |
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| Spa day with the bridal party! |
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| Mani and Pedi for the flower girl! |
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| Spending time with the bride |
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| Tyler fed the ducks in Greenville |
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| Almost ready for the main event! |
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| Jamie and Julie waiting in the limo |
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| Angela and I with the bride |
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| Melissa and David after the ceremony |
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| Our family :) |
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| Me with my little man! |
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| Sibling photo! |
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| With my main squeeze |
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| With my favorite girl in the whole world! |
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| Admiring the fountains on the way home from the reception |
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| Sophia is such a big helper |
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| She loves her new backpack for school! |
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| Someone loves M&Ms |
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| Tyler did great at pre-op! |
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| Our little heart warrior just out of surgery |
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| He was very thirsty when he woke up but could only have water-soaked brushes |
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| On our first stroll! |
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| Our nurse Peggy was amazing! |
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| Someone's oxygen saturations are 85%! |
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| Hugs for Daddy |
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| Nap time after a long night |
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| Time for physical and occupational therapy! |
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| Someone decided he didn't want to sleep so we took Olaf for a late night stroll |
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| Walking with Hunter into Preschool orientation |
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| Tyler's incision started to look infected |
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| Sophia's first day of preschool! |
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| Sophia got to spend time at CHOP with her buddies Will and Hunter! |
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| Hunter is ready for lunch! |
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| The whole gang! Amanda, Eden, Hunter, Joe, Me, Sophia, Brittney, Will, and Patrick |
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| We found an awesome outside terrace at CHOP to play at! |
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| Relaxing with Nana |
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| Bath time! |
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| Grandma came to play! |
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| Someone is tired from walking! |
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| Sibling time |
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| Tyler loves the play room! |
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| Sophia got to play Bingo down in the main atrium! |
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| Miss Jessica helped her play bingo |
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| Story time in the wagon! |
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| On our way home! |
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| Tyler loves relaxing in his chair! |
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| Braves vs. Phillies with Sophia |
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| Someone loves cotton candy! |
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| Fashionista |
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| She sure loves her Daddy |
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| What a great day |
Row, row, row your boat
Bath time giggles and apologies
Sweet sleepy boy
He's walking!
Not so sure about therapy
Ready to toss!
Leaving orientation
Grandma's ready to play!
Sophia's dance
Happy Birthday, Grandma!
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