Mondays are for Cardiology Clinics

Henry had another post surgery follow up today at Children’s Mercy Hospital. We started off with labs, then to xrays, had an ekg, then spoke with his Cardiologist.
Everything looked great! Because of this...
We are stopping yet another diuretic! We are also going down to one instead of two dosages a day on the remaining diuretic, lasix.
We also got a call today that Henry’s heparin levels are still on the low side (but still therapeutic) so we are going to go up on that dosage. We see hematology in two weeks to check on the blood clot.
Henry’s energy level has been great. We are worn out most days chasing him around. Last week he has been riding his tricycle with his new helmet after dinner.
We head back up in six weeks to see cardiology and go from there!
Thanks everyone for your thoughts and prayers!

Another good appointment

We had our first visit with Henry’s cardiologist since surgery. We last saw her a month before his surgery. Before our visit, we did lab work and an x-ray. The lab work showed that Henry’s sodium level was normal, so we got the clear to stop the extra salt! We also have been able to drop one of the diuretics from three times a day to twice a day. The final good news is we can let Henry drink up to 30 ounces of water! This helps significantly since before, Henry really only drank water and milk. And it is also hot out, and we haven’t liked being out too long since we couldn’t guve Henry muh water. The low fat diet was also stopped last Friday. We haven’t let Henry go overboard, but he did make a meal of chips, salsa, and cheese dip Saturday night. We are also getting closer to his weight before surgery!

We head to the local hospital tomorrow to check on his blood thinner levels. Overall, the twice a day shots are becoming more tolerable, but Henry will have good and bad days with them. Please keep him in your prayers that we will be able to discontinue this in September and go back to aspirin.

We had a good 4th of July! Henry, at least at this point, is no longer scared of the noise. I tried my luck with using the spinning toothbrush on him, and he is now using his spinning Marshall toothbrush! We see the dentist next month.

We head back up Friday for another round of labs and xray. Hopefully that will be our last visit up to Children’s for awhile, as we will be back up in five weeks to meet with Henry’s cardiologist again.

Happy 4th!

Just a small update to wish everyone a happy 4th!

Henry continues to do well each day. The twice a day shots keep improving as well. We had one day a couple of days ago where Henry fought both of us. To help, we are doing a weekly sticker chart and letting Henry decide where he would like to sit to do the shot. Henry gets to pick out a prize each week after filling out the sticker chart.

We head back to Children’s Mercy on the 9th. This is to visit with his cardiologist as well as check on Henry’s recovery process. If all goes well, hopefully we can remove or change the frequency on the remaining diuretics he is still on.

Have a happy and safe 4th!

First week home

Wednesday we made our way to Stormont Vail Hospital where we had Henry’s blood tested for the first time since being home. His level was on the low end, so they have increased his dosage on his twice a day shot, but with the holiday next week, we won’t need to go back until July 11th to check on how the blood thinner is doing. A plus for Henry! He is “improving” with his twice a day shots.

Today we headed back up to Children’s Mercy to have more blood work, x-ray, and short echo done to see how his heart is doing. Everything looked good or normal! We will now be able to give Henry 20 ounces of water a day, stop one of three diuretics, but we need to add more salt to his diet. Probably the only time cardiology will say “limit your water, eat more salt!” Henry is still on a low fat diet until next week. I believe a chocolate croissant will be requested once this has been lifted.

The stitches have been removed where his drain tubes were at. The site there, as well as his chest, still look good! The chest will take 4-6 weeks to heal. Let me tell you, it’s been a little more of a challenge to pick him up by scoping him under the bottom.

I apparently spoke too soon earlier, as we have started up on the Tylenol again, at least once a day. The oxycodone has also been removed from his prescibed medicines.

Henry is taking about two naps a day. He is taking his normal after lunch nap, but about an hour after his morning shot, he will usually take a long cat nap.

He is also not sleeping that great at night. Since he is being limited on water still, we haven’t been able to give his mug of water to take to bed. Hopefully not having that, and some mild pain, is what causing the sleeping problems. The fireworks probably aren’t helping the situation right now either.

Still, not too bad for having open heart surgery a little over two weeks ago! Thank you everyone for your prayers and support! We head back up to see Henry’s cardiologist on July 9th. Hopefully another good report!

On the recovery road

We are not even two weeks post surgery and today we did not give any pain medicine to Henry! What a little rock star, or as he will say, Super Fontan. FYI, Sisters by Heart has a cute book called Super Fontan in their care packages for kids who will be having the Fontan Surgery. It’s where the cape came from too!

http://www.sistersbyheart.org/content/nominations

Wednesday will be a test for all three of us, as we will be heading over to Stormont Vail to have blood drawn to check on the blood thinner levels. These shots are not to be taken lightly. They have been our largest struggle since getting home. We have started a sticker chart for Henry for each time slot he is either doing medicine or having the Lovenox shots. Tonight we even entertained Henry by going to a different room, and having a small bag of M&Ms afterwards.

Henry is doing well on the liquid restriction. He is currently limited to 12 ounces of water a day. This hasn’t been as big of a struggle, but he will ask for water, so we will offer him something else. For the most part, he will take us up on the offer. We have stopped giving him a glass of water to go to bed with for the time being.

The fat restriction (41-45 grams) hasn’t been too bad either. I won’t be taking him to Starbucks and the Farmers Market while on the restriction, as his favorite thing is chocolate croissant. (Just one is half his allowed fat grams for the day)

Thank you friends and new friends for the wonderful things that have been sent to Henry! They have allowed us to do some fun things rather than just chilling in front of the screen.

We head back to Children’s on Friday to have more blood drawn, a chest xray, and visit with the surgeon to see how everything is healing.

Thanks everyone for your support and prayers!

Home!

We managed to escape out of the hospital on a Saturday!

Last weekend went well. We got sent up to recovery late Friday after waiting half a day to get a PICC line placed in Henry. A few IV lines were pulled, as well as his pacemaker wires. Then up we went to the recovery floor! Starting Saturday night, the nurses started to have problem drawing blood from Henry’s PICC line. So after a few rounds of TPA, we ended up doing an ultrasound on his arm.

It saddens me to report Henry has/had a small clot on the line. Because of this we had to start doing manual blood draws for lab, as well as start a regime of twice a day shots to thin out Henry’s blood. We will need to do this for three months, then have a follow up with hematology.

Honestly I think that set Henry back a few days. He was a pretty hapy camper Monday. We had musical therapy come by, and he was smiling a lot! He was also starting to eat, as well as getting close to his liquid restriction level. It has been a struggle now to do meds, where before we didn’t have problems. Henry also used to do great with blood draws, but after someone tried drawing from his ankle, that really put him over the edge.

So we took it it easy with him on Tuesday. By Wednesday he was still fighting on a few things, but we made it a priorty to have the tv off, and to start using the hospital bed as a napping and bedtime only place, with a couple of exceptions.

By Thursday his drainage was dropping, and the cardiology team decided to pull the drain tubes on Friday. We prepared Henry by providing him some medicine beforehand to help ease the pain, and asked to do lab work as well to get everything done and over with. Our lovenox blood thinner was delivered as well, and we spoke with our Pallaitive Care Nurse, discussing what Henry’s next steps with that team will be. Since the drain tubes came out, we also took Henry off oxygen. He had to be monitored for an hour, and he did great!

We left the hospital before 10. We got home, did some unpacking, ate lunch, and Henry took a nap in his room.

We are all exhausted to say the least. We have 3 diuretics we will be working on to wean off, as well as monitoring Henry’s water intake, being on a low fat diet, and making sure to add some additional sodium to his diet. 

We return back to the hospital Friday, and will do lab work and xrays prior to the doctor visit. We have a visit scheduled with Henry’s cardiologist in July.

Thank you everyone for your thoughts, prayers, and support! It is wonderful to be home.

Moved up, 3 year coming home anniversary

Greetings from Children’s Mercy!
Last Tuesday, I received a call that the hospital had a cancellation, and asked if we would like to move our appointment to Thursday! So we took it!
Henry did great. The day was long, and we finally were reunited around 3. They made him a Chase sticker for his chest.

Henry also had his shortest stay in the ICU. We moved up to the floor a little over 24 hours.
He continues to do better each day. Henry is on liquid restriction, as well as can only have 6 oz of water a day. He had also been placed on a low fat diet, which we will need to stay on for at least 6 weeks.

He will stay on oxygen while he still has drain tubes. Walking around will help, as well as some diuretics.

We also celebrate today for Henry’s 3rd year anniversary of coming home! He has certainly made so much progress since then!

Sorry its short, but Henry keeps us pretty busy right now, so I am doing this during a morning nap.

Thanks everyone for your prayers! We are incredibly grateful for everyone’s support, love, and thoughts!

Oh! Prior to surgery, Henry’s O2 levels were in the low 80s. We haven’t seen what he is like off oxygen, but with half a liter, he is running 98-100 while resting/sleeping! He will most likely be in the mid 80’s to low 90’s once he doesn’t have that support.

Cancelled Again

The last few days have been an emotional roller coaster to say the very least.
Henry’s pre admission testing went well! He did great providing a urine sample, having blood drawn, and having a lot of staff listen to his heart and lungs. We signed a lot of paperwork, then ended the hospital visit with a chest xray. Everything came back great!

We checked in to the Ronald McDonald House, and spent the day hanging out with each other.
After scrubbing down Henry, putting special ointment on him, and sending him off to bed, we received a phone call after 9pm to tell us there was an emergency at the hospital and that our surgeon would be unable to do Henry’s surgery in the morning.
::insert all the feelings:
We were told someone would call us back in the morning before 9, and if we didn’t hear from yhem, to give them a call.
We didn’t get the call, so I called them. The earliest they can get us back on is the 18th, with us being on call for any cancellations.
::insert more feelings and emotions::
So we checked out of the Ronald McDonald House. They were very nice about everything and gave us tickets to the aquarium! Henry loved it. It helped ease our emotions seeing Henry’s face light up.

So now we wait, keeping Henry healthy and strong. Thank you everyone for your thoughts and prayers for our awesome rockstar Henry!

Less than two weeks out!

I realized we haven't updated the blog since we had announced that the original surgery date was cancelled.

As some of you may know, we were called within a week after the cancellation, and are now "in ink" for Thursday, May 31st. Less than two weeks away!

Henry has been doing great. We received a care package from the organization Sister's By Heart. It had a couple of books in it that we have been reading to Henry. Currently, we have been reading "Super Fontan" which is about a super hero who is helping a little boy who is going in for his 3rd open heart surgery (the Fontan) like Henry is. We even received a red cape for Henry!

As you can imagine, my stress level is pretty high right now. We meet with the new surgeon earlier this month, and although we will miss Dr. Pastusko, we think Dr. O'Brien will do a great job of taking care of Henry. Dr. O'Brien even told us he was going to contact Dr. Pastusko to tell him how great Henry is doing :-)

Henry's last day at daycare will be the 25th. With Monday being a holiday, and Wednesday we will be doing pre-admission testing, we decided it would be best to keep Henry out of daycare for the day, and spend some quality time with each other.

This hospital stay will be much shorter than when he last had open heart surgery. Average (let's cross our fingers and pray) we should only be in the PICU for a couple of days, then move on to the floor for the rest of his hospital recovery. Henry may need to be put on a fluid restrictions, and possibly a low fat diet. This will be determined after surgery, and depending on how much and what kind of fluids he will drain.

Henry will need need to be home and recovering for a good portion of the summer. Henry will be going home on a lot of diuretics, as well as oxycodone to help manage any pain he may still have. We will most likely have his first follow up visit two weeks after being discharged from the hospital.

Thank you everyone for your support, thoughts and prayers! They had warned us this surgery will be the hardest on everyone emotionally, and they were certainly right. We need to keep Henry healthy these next few weeks, so extra prayers for our health are greatly appreciated!!!

And Cancelled

We got a phone call yesterday that Henry’s surgery has been cancelled by the surgeon due to either personal or a business conflict. We now wait unil he publishes his June availability within the next week or so to reschedule.

Save the Date

Last year felt a bit like a marathon, as we dealt with Henry's recurring tonsillitis. About every four weeks, they would flare up and he would be home sick for the better part of a week at a time. Our goal was always to get through the fevers and try to make hay in between. Throughout it all, he always kept his usually, happy demeanor. In the past two months, as Henry has fully recovered from his tonsillectomy, it is becoming clear that this year is going to be a sprint.

After finally having his cath lab and getting good results, we have scheduled Henry's third heart surgery, the Fontan procedure, on May 24th. Our hope is that we will be home within about two weeks after surgery. We don't know how long he will need to remain out of daycare or away from a lot of people or activities. We will have several appointments to meet with the surgeon and our cardiologist before the surgery, so we'll have more information as it draws closer.  

For now, here is a diagram we've posted before:

Henry is currently at figure C, and the Fontan procedure will bring him to D. This will make it so that his blood oxygen levels will go from the low 80s into the 90s, giving him more energy and strength than he's ever had. 

Already, we have seen glimpses of what he may be like. A few weekends ago, after a morning playing and running errands, we spent the afternoon at the zoo. Despite about a 30-minute nap, Henry walked all over the zoo and wanted to play in the park before going home to watch a movie. He had a great time, but his parents were wiped out! Even in between all of his colds last year, we hadn't seen so much energy - and we cannot wait to see what he'll be like when he really has energy this summer.

The next eight weeks are going to fly past, with holidays, birthdays, and simply having nice weather again to enjoy. We are nervous, but excited, and ready for this next stage of Henry's life.

Cath lab, take five

After battling several illnesses/tonsillitis since May of last year, and taking most of the summer scheduling, rescheduling, and canceling cath labs, Henry was healthy enough to have them look into his heart. So on Thursday, the doctors were able to look at the narrowing we have been seeing for some time on the Echos, as well as take pressure measurements for the next open heart surgery, the Fontan.

Henry did great. They did not need to do any interventions (ballooning, placing a stent, and/or coil off any collaterals), which allowed for us to go home the same day! It was a very long day, as we had to be up at Children's Mercy by 7:30 in the morning, and we were home after 5 that night.

Dr. Kaine, the cath lab doctor, thought Henry was in a good place, and would be a good candidate for the next open heart surgery. He and Henry's cardiologist, Dr. Goudar, would present Henry on Friday to the rest of the cardiology team to see if everyone agreed with them.

We got a phone call late Friday morning from Dr. Goudar that everything looked good, that the blood work they also did on Thursday looked good (they checked to see how some of Henry's other organs are doing), and that we will be getting a phone call in the next week or two to schedule the Fontan.

We will update everyone once we have a date, and hopefully the posts will become more frequent.

As for the tonsillitis, we will not need to worry about any more flare ups, as we had Henry's tonsils removed back in January. He did great in recovery, and took about 10 days to get close to his normal self. We had him return to daycare for half a day for his first day back, then took the rest of the weekend to get back to the swing of things.