Update

OK, to make up for all the pictures I have NOT taken lately, I thought I would post a few to document our last few days.



They have a sense of humor in the cath lab. You never know what you're going to find afterward...

When they did the cath, they went in both sides --- the left and the right groin. This is one of the 2 pressure dressings that Zach had on his catheter sites (along with a strategically placed washcloth). You can see the smiley face there as well as the time that the dressing was placed, to let recovery know how long to keep him laying flat. The tape is very thick and very sticky. Zach did great when we removed the first one and hollered like a banshee when we removed this one. I have written about the extreme trauma caused by Band-Aid removal around our house... he will need therapy later in life, I'm sure!

There has been an awful lot of this going on these past few days!

Cheeeeeesy grin!

You can see how he is holding his right arm. He is using it very little. 

  

Bill took Zach to the pediatrician today and he agreed that Zach is definitely in some pain. He sent him down to x-ray and they did about 8 or 9 films! It wasn't long before the nurse called back to say that they did not see anything at all. So, what now???

I just got off the phone with our wonderful cardiologist, Dr. Raunikar. He said that it is possible that the position they had Zach in for the 3 hour cath may be the cause of his pain. (I guess I can relate it to the jaw pain I recently had after a 2 hour root canal. Ow!!!) When we put our bodies in positions they aren't used to, we feel it!

Silly boy --- even when he is in pain!

So, we are to give Tylenol for a couple of days and use a warm compress and see how he does. If he is not better then we will make a cardiology appointment for later this week.

These Cardiac Kids... always keeping us on our toes!

Feedback needed...

I need to draw on the experience of all you other heart moms out there. We are trying to figure out something that has been going on with Zach...

Ever since we got home from MUSC, Zach has been complaining that his right side hurts up under his arm. He is really guarding that arm, holding it against his side and not using it much. We cannot pick him up under his arm and he does not want to lift his arm over his head. He has been on restricted activity since his cath, so he has had not opportunity to injur himself. I called MUSC and they had never heard of anything like this after a cath. I also talked to cardiology over the weekend and he could not think of any reason for the pain, unless it has to do with them raising his arms over his head during the cath. We have an appointment with the pediatrician at noon and have a call in with our cardiologist.

Anyone ever experienced anything like this post-cath?

I went to the doctor Friday because of a painful rash on my shoulder and under my arm and was diagnosed with shingles :(  Very painful. The blisters are about dried up now but the pain continues... My fear is that this pain Zach is having is the precursor to the rash, although no one is supposed to be able to catch the shingles from me. If anything, he would get the chicken pox (but he has been vaccinated so hopefully he is covered there.)

I appreciate any light anyone can shed on our issues!

Cath Success!

Zach was such a brave little man today! We are so proud of him. He was in the cath lab for over 3 hours today and Dr. Bandisode said everything looked great. All his pressures were right where they want them to be. She placed a device (a stopper of sorts) in the fenestration and they coiled a couple of co-lateral vessels while they were at it. Co-lateral vessels form as the body tries to compensate for itself.

She said that we can expect those co-lateral vessels to open up from time to time throughout his life. They serve no purpose and actually cause his heart to work harder. Hopefully, we won't see MUSC for a few years before he needs another cath done. I can truly say that, as much as we owe to the great folks at MUSC, we will not miss coming down here.

Zach is resting peacefully here in the hotel, watching Toy Story 3. We will be ready for bed soon since we are all wiped out. The next 3 days will be filled with lots of couch-potato activities. Please pray that we will be able to keep the little man on the couch!

Also pray for some new heart friends that we met this morning in the waiting room. Harrison (2 months old) is in PCICU right now. He went to the pedi on Tuesday for upper respiratory symptoms, was admitted to the hospital for tachycardia, and was finally transferred (flown in) last night. His mom and dad, Paige and Kyle, are really having a tough time as they watch their son suffer. As of this morning, Harrison's heart rate is still as high as 220. Please pray that the doctors will be able to find a drug therapy to bring his heart rate down and as they try to figure out the cause of these issues. I feel blessed to know that God used us to reach out to them in their time of need.

Thank you to everyone for all your prayers for us! God is an amazing God!

Cath-time

We will be heading back down to MUSC this week for Zach's heart cath on Thursday morning. This is a routine thing... during the Fontan Completion, which he had last July, they left a fenestration, or small opening that acted as a pop-off valve in case the pressures got too high. Now it is time to go in and close it up.

After going through surgery last summer, a heart cath seems like no big deal. Nonetheless, I am nervous and full of dread and ready to get it over with and just wishing we could ride those 4 hours and just go to the beach and the Aquarium and skip the whole thing. Sigh...

We haven't really talked to Zach a whole lot about it yet. I found out after surgery that I have to be careful not to talk about MUSC in earshot of him because he immediately gets fretful and starts in with a barrage of questions. No sense worrying him prematurely. We will start talking to him this week and reassure him about it. I know I can rely on the many prayers of our "heart buddies" to bring us through!

I have to confess that I have taken NO pictures of my children all month! Zero. Zilch. Nada. Bad, bad mommy!!! So, here are some pics of Zach on his recent field trip to a local zoo (taken by his teacher, of course).

 His teacher said he was like a mountain goat --- he climbed all over every rock in the place!

He told me about "the COOLEST thing ever"... getting to feed the lambs with a baby bottle (nevermind that it looks like these are baby goats, it was still the COOLEST thing ever!)

 They got to take a bus ride around to feed various animals - you can see a llama or alpaca, an ostrich or emu, and some deer in this shot.

Ewwww!

Blogger's block

I seem to have a bit of writer's block lately --- or should we call it blogger's block? Or maybe I am just terribly lazy... or terribly busy... or all of the above! Anyway, I am still here and I am still keeping up with all of our heart buddies. I'm just not posting for some reason.

The only recent news that I have to share is that we rescheduled Zach's heart cath to the end of our Spring Break on March 31. They have to close the fenestration that they made during the Fontan. I had originally scheduled it around a school holiday so I would only have to miss 1 day of work, but with all the snowdays that we have to make up, we now have to go to school then. So, we will take a little "vacation" to Charleston during Spring Break. Zach is already anxious about it. He keeps asking, "When do we go to MUSC?" Of course, he has no sense of time, so I just tell him that it will be a long way off. Then, he will remind me that, "We need to go to that playroom!". It's good to know that he remembers how much fun the Atrium is!

Rebecca and her best friend, Sarah asked me to go out in the freezing cold yesterday afternoon to take some pictures of them together. I thought they turned out pretty good...

Of course, Zach had to get in on the action!



An Update and Some Important Dates

Merry Christmas!!! I can't believe it is already December! I have a good start on my Christmas shopping - how about you?

We finished up most of our decorating last weekend, despite most of us being sick. Zach hung the first ornament on the tree, gave Daddy a huge hug and said "It's Christmas Time!!!" So cute! He hung maybe 2 more ornaments and lost interest. Oh, well. They say their attention span about equals their age in minutes, so that's about par for the course!

Ta-da!

Here's our hearth decor, which Zach has destroyed for the most part. He thinks it's all for him to play with.

Rebecca with her best friend, Sarah, in front of Rebecca's new Christmas tree she put up in her room

We just need to put out our reindeer, snowman, and lighted trees out front. It has been cold and/or rainy this week, so we haven't been able to do it yet. We also need to take our Christmas picture so I can get our Christmas cards ready to go out.

We have a couple of important dates on our calendar. First, Zach has a speech evaluation on Jan. 4. He talks with quite a lisp still and is not saying a lot of blended sounds. We'll just have to see what they say.

Also, Zach will have a heart cath done March 17 at MUSC. They need to close the fenestration that they created during the Fontan and I suppose they will have a look around to make sure everything is working well, too. Even though I dread going through another procedure, at least we know what to expect from Zach. We pray we will not have any surprises.

Good News - Bad News

The Good News: Zach's cardiology checkup was great! He was 31.5 lbs, 39" tall, pulse ox 93, bp good, and echo good. Dr. R. said his heart looks great! His fenestration (a hole they made during surgery that acts as a "pop-off valve" ) is still open, so Dr. R. is putting in the request to Charleston for a heart cath in March. They will place a coil to close it and have a look around to make sure all is well.

The best part of the appointment was when Dr. R. said "We are going to stop the Lasix." Woo hoo!!! I am so glad to get rid of that. In case you don't know, Lasix is a diruetic. Diruetics and preschoolers do not go well together. Basically, when we give it to him, we have to stay home for the next 2 hours so he can go tee-tee every 15-20 minutes. Trying to get a 4 year old to stop playing every 15 minutes to go potty results in lots of complaints. Dealing with accidents during this 2 hour period has been frustrating. Hopefully, he will do well off of it and we can be lasix-free from now on!

The Bad News: We thought Zach was on the mend, but he spiked a fever again this afternoon. He also has a bit of a cough. Daddy promptly called and got an appointment at the pediatrician. They tested for strep (negative), flu (negative), AND pricked his finger (white count normal). Poor guy! They are culturing the blood and strep swab.

So, we are not sure what is going on. All I know is that this little bug that's causing him to feel so bad has overstayed its welcome. We have places to be and people to see and TURKEY to eat!

Hope your Thanksgiving is full of blessings!

Update on Zach's recovery

Finally Zach is feeling more like himself after his heart cath. Today, he had a ball playing outside. It's really the first day that he's felt like being up and around (and I was so worried about how to keep him from running and jumping!). He has run low-grade fevers on and off for several days and still had one on Friday night. We were concerned because his fever went up to 101.4 on Wednesday night and Thursday morning. I talked to the MUSC Ped. Cardiology Fellow twice and if it had continued, we would have carted him off to the doctor for some blood work to make sure there was no infection. Praise God, it never went that high again. The doctor said the dye they used during the cath can cause fever and the coils they placed also cause an auto-immune response. Hopefully we are past all that now. God answers prayer!

There's no place like home! There's no place like home!

Finally! We are home from MUSC. Praise God, Zach's cath went well. The doctor said he is ready for the Fontan sometime in the next few months, whenever we want to schedule it. She is putting in the request and we will be getting a call to set everything up. We have to look at our schedules and check with our friends who graciously loan us the use of their condo, which is about 10 minutes away from the hospital.

The cath took at little longer than expected because they had to take care of a long corollary artery. It stretches from his shoulder to the bottom of his lung and was preventing the upper area around his Glenn from adequately profusing. I really didn't understand until after the fact how this works. They had to put in 28 coils! I thought they would put in one coil and it would block off the artery. Apparently, they put the coils end to end until they fill up the artery. Amazing!

We had to be at the hospital at 6:15am to register and then were upstairs at 6:30 for prep. Let me say that the team that took care of us was wonderful! Nonetheless, by about 7:15, Zach was starting to ask for a "nack" (snack). He was hollering across the room to the nurses, "Heeeeeyyyy! I wanna 'nack!" When they didn't respond, he said "Mommy, she can't hear me. What 'da matter?" He would ask every new nurse or doctor or anethesiologist that came by to talk to us for a 'nack. This one nurse, Jerrard, was so good with Zach and brought him a bunch of those fake tattoos and let Zach pick out 3 or 4 of them. I thought they were for him to take home, but turns out, they put them on Zach while he was asleep for the cath, so Zach would be surprised to find them on his arms, tops of his feet, and one right over his heart zipper! I'll try to get a picture of this one later.

Finally, just before Zach flaked out from hunger, our nurse brought him a syringe of Versed. He sucked it down like it was good. A few minutes later, as he sat watching TV, I had my arm around him and all of a sudden he sort of laid back on my arm like a ragdoll. He had this goofy grin on his face, and his eyes were about half closed. He giggled a little bit and tried to talk, but couldn't seem to make a word. He was a happy drunk!

After the cath, with Buzz and Woody by his side, he's still very groggy and ready to "Goooo home!!!"

On the way to x-ray to make sure all those coils are still in place.

 

So, now we have to keep him still until Friday. Ought to be interesting! This boy NEVER sits still! Please give me some ideas of quiet activites that have worked for you.

Spring Break and Prayer Request

We are on Spring Break this week. So far, we have been to the beach and now we are at my Mom's. We went to the zoo yesterday with some family and had a great time even though most of the animals were asleep and it was pretty hot.

Zach loved running from the waves at the beach!

Zach with his cousins at the zoo

Dad and Rebecca visiting the zebra

Zach and Daddy on a safari

Look at this heart-shaped knot-hole I spotted. How cool!

I wanted to ask our heart buddies to pray for Zach for two reasons.

• First, Zach is scheduled for his cath for next Tuesday, April 6 at MUSC. We will travel down Monday night.
• Second, Zach has had some tummy issues the past couple of days. We hope it is just from not eating and drinking his normal stuff. He hasn't been running a fever or anything and feels good. He has just had a few loose BM's. Anyway, please pray that this would resolve itself before Monday and that Mom, Dad, and sister would be healthy, too.

Thank you for your faithful prayers!

How to prepare...

Today Zach overheard me telling my mom on the phone that we had to go to the hospital on April 6th. His little brow wrinkled up with worry and he said, "We goin' to da hopital? Who gonna lay down?" (I think he was asking who was going to get poked and prodded?) He was obviously starting to get anxious about it and he put both his hands over his eyes. I reassured him that Mommy and Daddy were going to be right there with him and that it would be a lot like when he goes to see Dr. Raunikar (our cardiologist). I told him that they would check his oxygen and blood pressure and weight and listen to his heart. I promised that we would get to see some old friends --- Dr. Bradley (maybe) and Dr. Bandisode. I told him that we would meet some new friends, as well. I told him that maybe we would get to meet the same people that had taken care of Derrick and Zeb and Anna Grace, our local heart zipper friends.

My heart breaks to think about what he will have to go through in just a couple of weeks. I get nervous as I think about talking about the procedure more with him as the time draws nearer. At the Palmetto Hearts conference that we attended in February (which was wonderful!), the Child Life specialist from MUSC spoke about this very topic. I was surprised to learn that it is best to begin preparing your preschool child only about 2-3 days prior to the procedure/surgery. Because preschoolers have no concept of time --- Zach's famous for asking, "Am I gonna take a nap tomorrow or later?" --- talking about surgery that is weeks away will only cause them anxiety. Makes sense. On the other hand, she told us that it is not a good idea to spring it on them, either. She knew of one family that told their child that they were going to McD's but took him to the hospital instead. Not a good idea.

I did show Zach this picture from after his Glenn at MUSC.

Of course I have other pictures that I wouldn't dare show him for fear of scaring him.

For those of you with older children, how have you prepared them for procedures/surgery? What worked and what didn't with your child? I love that we can learn from one another!

Cardiology checkup

Zach had a checkup with the cardiologist this morning. Dr. R is following him closely in preparation of his upcoming heart cath on April 6 at MUSC. He did another heart cath and said that everything looks as good as it can get. His leaks are the same (not worse - PTL!), murmur sounds the same, systolic function (whatever that means) is as good as a healthy heart.

I asked about Zach's weight (he was 30.3 lbs) and if we should try giving him something to supplement his diet. He is a typical preschooler in that he eats mostly chicken nuggets and mac and cheese. He likes baby carrots w/ ranch and will eat green beans with a lot of encouragement. He loves fruit. The problem is, he doesn't drink much milk and lately doesn't eat cheese except on pizza. He does like yogurt and eats 1-2 tubes of Go-Gurt a day. He said it would be ok to try some Pediasure. He just doesn't want to overdo it because he is pleased with Zach's growth thus far and proportionally, his weight measures up to his height (no pun intended). He doesn't want him to get chunky.

One thing that he said bothered me a bit --- no, a lot. He said the heart cath would help them assess whether Zach was a good candidate for the Fontan. Not sure if he meant "right now" or "ever" and I didn't think to ask at the time. So, not having the Fontan means... what? Anyone with any insight on this, please chime in and calm this mama's nerves.

The biggest blessing of our visit with Dr. R is that he prayed with us! We circled up and held hands, Zach included, and had prayer for Zach's cath, for safe travel to MUSC next month, and for wisdom for us as Zach's parents. How precious! We are so blessed to have a wonderful, Christian doctor!

A new normal?

We have had a concern with Zach lately. When he is playing, he often seems like he is out of breath. His breathing just doesn't seem to match up to his level of activity anymore. He can just walk through the house and he is breathing more heavily than before. We visited the pediatrician to make sure he didn't have anything going on from when he was sick with walking pneumonia back in December --- his oxygen sats were right where they usually are in the mid 80's. Then I talked to his cardiologist. I described what is happening and asked if he was breaking out in a cold sweat or if he was panicky. I am not seeing either of those things. He said this may just be Zach's new "normal" until his next surgery. He said some children will self-limit and some will just push themselves. Zach has always played hard --- every moment of every day. He is a wild man. I guess he is just outgrowing his current capacity. Just a reminder that he is not normal. Anyone else seeing this trend with your cardiac kid?

Like the Energizer Bunny!

We go back to the cardiologist Feb. 5 for a checkup. I'm not sure if he will do another echo or not, but I do know he is interested in his weight.

So, MUSC finally called to schedule Zach's heart cath. It will be on Apr. 6. We will go down the night before. Last time he had a cath done (at 8 months old, before the Glenn), we stayed that night with some friends of ours in Charleston and I'm glad we did because Zach did not do well. He was crying and crying and crying, so I fed him a bottle, which he threw up later that evening. We were so afraid that he had aspirated. The friend that we were staying with actually works at MUSC. She listened to his lungs and reassured us that he was fine. I'm not sure if he was just in pain or what, but at least this time he will be able to talk to us and hopefully give us a clue about pain, hunger, etc... I still don't like the idea of taking off and driving home 4 hours with a freshly operated on cranky child. So, we might just have to find a way to stay over the night after the cath, too. Just to settle this mama's nerves. Sigh...

From the heart cath, they will be able to formulate a plan of action for the Fontan. We know it will be sometime this summer. It just depends on his weight. Last week at the pediatrician he was 31.2 lbs, so I figure he will hit the 33lb mark in 2-3 months. He has not been eating as well lately, so I am just waiting for his next growth spurt to kick in.

We appreciate your prayers for our little wild man and his heart!

Heart hugs,
Pam