MUSC ENT

I haven't posted here in quite some time, but thankfully we haven't had much to share until today.  This week we visited MUSC ENT for both of the kids.

Harlie's Update:
Several years ago Harlie had a hole in her eardrum. She had a tempanoplasty done to repair the hole, only to have another one done about a year later. Now the hole is back (40-50% of the eardrum is gone) and her hearing is being impacted more significantly.  We requested to be referred to MUSC to get their opinion about how we should treat.  We met with her surgeon on Monday and he has recommended that we go ahead and repair with a larger patch that will essentially cover the entire ear drum. He also said that they will do a mastoidectomy that will remove some of the porous bone behind her ear. This time they will also go in from behind the ear to allow better access to the eardrum rather than going in through the ear canal. This will make recovery time a little longer. She will have 2 weeks of restricted activity. Because of this we are waiting until the summer, so she doesn't have to miss any school. We are hopeful that this will be the permanent fix for this ear.

Mac's Update:
Back before Thanksgiving we saw an ENT in the upstate about Mac's recurring Croup and that lead to having a swallow study in December. During the swallow study Mac aspirated on thin liquids. Since then he has been learning compensatory strategies to help him drink safely. Our upstate ENT requested that we do a sedated Bronchcoscopy that would allow them to get a better look below his vocal chords to see if there was any damage from previous intubation. We are not comfortable with sedated procedures in the upstate though because GHS just doesn't have the resources available for our cardiac kids. For this reason we requested that we be referred to MUSC for the procedure. Today we met with the ENT down in Charleston to discuss his thoughts about what our next step should be. After looking at the records from the upstate and seeing Mac today, he explained to us that there could be a leryangeal cleft, a gap that allows liquid to get into his airway. It is not something we can see with the in office scope.  The plan is to go in during the broncoscopy and measure that area. If there is a gap, they will inject a filler into it to help close off that area. They will also take a look to be sure that there is nothing below the voicebox area that needs to be addressed. He did say that based on what we shared and what he saw from upstate notes that he didn't think that was a concern for Mac.

We are trying to get both procedures scheduled for the same week in June so that we don't have to make multiple trips down over the summer. Please pray that we are making the right decisions for the care of both of our kids. Please pray that both procedures will go even better than the doctors anticipate and they will both be able to move forward from these procedures with excellent health and be able to enjoy life to the fullest! As always, thank you for your prayers for our family.

Waiting is the Worst

The waiting is the worst part. These past few weeks have been a roller coaster of emotion. We are so excited to get this surgery behind him, but we are so nervous about the risks of surgery. Germs are scary, rest becomes more difficult, and worry tries to steal my joy. 

Fortunately I am a believer. I believe that the one who created this world created my son's heart. It is not a typical heart, but a perfect heart for Mac. I believe that he has given our sweet boy the best medical team in the world to perform his surgical procedures. I believe that throughout the entire process the Holy Spirit is guiding the decisions made by each of us. I believe that the Creator loves my son even more than I do. I believe that He is going to be with Mac every step of the way. I believe that He will strengthen his tiny little body when it needs strength the most. I believe that God will help Mac feel that he is safe, loved, and protected at all times. I believe that throughout this process none of us will be alone. 

The Lord is the strength of our hearts and our portion forever. We trust Him and give Him all of the honor and glory for all that He has done and will do for our precious little miracle, Mac.

Dear Friends & Family,

We are so excited about all the next few months hold for our family. We will be celebrating life by walking in the Upstate Heart Walk in downtown Greenville on April 9th. This year we would like to ask you and your family to consider walking with us. A few hours of your Saturday morning would mean the world to us. You don’t have to fundraise. You can just be an encourager by being there to walk with us. This is such a special time for us and it will be even more meaningful knowing that we have your support and prayers going into this next surgery.

If you would like to walk, please just send me a message or comment below and I will add you to my list of contacts to send you more information as the time draws closer. (If you want to sign up as a fundraiser you can follow the link found below to sign up.)

We will also be wearing our new Miracle Mac T-shirts. We would love for everyone to purchase one, even if you can’t walk. The cost of shirts will be $10 each for sizes Youth Small - Adult XL. Larger sizes will be $12 each. We will be taking orders from now until March 25th. $3 from the sale of each shirt will go toward Team Miracle Mac as we support the American Heart Association.

If you don’t want a shirt but would like to make a donation you can also do so by going to our AHA page. The link ishttp://heartwalk.kintera.org/upstatesc/miraclemac

Please consider joining us this year. (We only walk the 1 mile route.) It would really mean a lot to our family to have your support.

The Wilsons

That was fast...

 

I can't believe it!!! 

We got the call!!! 

We have a date!!!

Dr. Bradley's office called on Friday and said that Mac is ready for surgery! 

He will have his 3rd surgery on 

May 20th!

 He will have the Fontan and not a two ventricle repair, but we completely trust 

Dr. Bradley's decision.

What's next?

As much as I would like to tell you all that I know the answer to this question, I don't. I have been thinking over the past few days about how to share our latest bit of news from MUSC. We did have a great report, but got very little more than that.

We arrived early Wednesday morning and checked in. We were sent to "same day", which is the holding area for outpatient procedures and preop visits. It was surprisingly quick this time around. They did his vitals checks and we spoke with the fellow and anesthesiologist. The only surprise was that they had to place a line in his neck this time because of the way he is hooked up right now. (I am not going to lie, I panicked a little when she said that.) He took his Versed (sedative) all by himself. We did get quite a chuckle out if his sweet little giggles and smiles before they took him back. This helped a little with mommy's anxiety of letting him go. He had no idea where he was going or what they were going to do, and he didn't care.

They did a sedated echo and then placed the catheters. He went through the procedure like a champ and we were able to be back by his bedside around noon. When you are back in same day it is a waiting game to see how well they come out of sedation. Most of the time they are extremely grouchy as the meds wear off and they start to wake up. This time was no different for Mac other than the fact that he had an incision in his neck where they ran one of his lines. They had already applied pressure to all three of his incision sites to allow them to clot, but when he started fussing he got choked up and started coughing. The coughs broke loose the clot and he started bleeding through the band aid on his neck. (This IS NOT uncommon for patients who have had this procedure done, but IT IS uncommon for me to see the bleeding from the incision.) The nurse quickly began to apply pressure to the incision and we had to re-sedate him to give more time for that area to clot. This was by far the scariest moment during this procedure. He never knew a thing, but the rest of us were a bundle of nerves. The precious nurse that was caring for him was fantastic. I cannot imagine what it would be like to care for these children day in and day out.

After all of the excitement died down we spent the rest of the day singing, snuggling, watching Daniel Tiger, and playing. When he woke the second time, I had him in my arms and the process went much more smoothly. He was more relaxed and we just rocked and woke up at his pace. When he woke up enough to eat he wanted "Hot Pancakes!" I can't even begin to tell you how excited I was to hear him asking for those.

There are hours of waiting in same day before you know if you are going home. During that time, we visited with our sweet nurse, played, and even got to visit with a few of our favorites from MUSC! I am not exaggerating when I tell you that the people who work in this hospital are THE BEST! When we are at the hospital it is like a family reunion where you get to catch up with all of your loved ones you don't get to see on a regular basis. They mean so much to our family.

Dr. Bandisode was finally able to come in and talk with us mid afternoon. The report she gave us was excellent. She said that he looked great, and she didn't need to intervene in any way during the catheterization. That means all she did was look around and take measurements. She said that she believes he could be ready for his next stage of surgery and then she blew our minds! She said that now the team needed to make the decision about which procedure they would be doing next. As far as we knew going into this procedure the only option was a single ventricle procedure called the Fontan. This would finalize his single ventricle set up and make it so that all of his blood flows into his lungs first to be oxygenated and then to his heart to be pumped out to his body.

Dr. Bandisode said, after looking at the images and taking the measurements she needed, she believed that it is POSSIBLE that he could have a two ventricle repair. This is a procedure that we didn't even realize was a possibility for him. This procedure would require a surgery now and another surgery as an adult. It would still use the artificial materials to make connections, but it would allow him to use his heart as a double pump instead of a single. This means that the blood would flow into his heart, his heart would pump the blood into his lungs. Then it would flow back into his heart and his heart would pump the blood throughout his body. The other procedure will only use his heart to pump blood out to his body. The flow into his lungs will not be supported by his heart.

After talking about pros and cons to this new option, we believe that it would be a great change, IF Dr. Bradley feels that this procedure would be successful. Dr. Bandisode said that patients with a Fontan are only about 70% compared to a person with a healthy heart. She also said that if the Fontan did not continue to work for him, he would require a transplant. If he is able to have a two ventricle repair he would not have limitations on activities and would be able to live a "normal" life. When I say normal that of course is relative to the fact that he would require a surgery now and another into adulthood.

We were able to go back to the CrossBridge house on Wednesday night and drove home Thursday. Mac bounced back amazingly well. He was playing with his buddy Caroline, and eating everything in sight. We are so blessed that we were able go home the same day.

With all of that being said, now all we can do is pray for the surgical team to make the best decision for Mac guided by the Holy Spirit. We know that the doctors study these cases and look at every possible option. They will most likely meet this week and then spend a week thinking and praying over the best option. They will then meet again and discuss to make a final decision on how to proceed. We don't have an exact date that we will get a response, and we are OK with that. We pray that the doctors will take their time and be sure that they are doing what is best for Mac. We did ask if they had an idea about the time of his next surgery and she said we could possibly be looking at May. We will not know anything definite until we hear back from Dr. Bradley's office. In the weeks ahead, please help us pray for the team as they review Mac's case and begin the difficult process of deciding on the best surgical option for Mac. Please pray for us as we wait. We are anxious to hear, but don't want to rush this process. 

Thankfully while we wait, we are home, and Mac is doing a great job keeping up with his "homework." It is possibly the cutest thing he does at this stage. When Harlie sits down at the table to do her homework, he heads off to the coloring book or printer to get a piece of paper so he can do his homework too.

Thank you for taking the time to read this post and continuing to pray for our family.

It Looks Like A Merry Christmas & A Heart Cath Next Year

Thankfully, we haven't had much to update you all on for a while. Our lives have been filled with wonderfully ordinary events. For that, we give all of the praise to the Lord. Today we had our much anticipated cardiology check up. I tried to condense his update into a short Facebook post, but I just can't. I think that blogging these updates help me as much as anyone else process the new information we receive.

Going into this appointment we had no idea what to expect. We know that he will require one more surgery, but we still don't have a definite plan for when that will happen. We were hoping that today would give us some insight into when to expect his 3rd surgery.

When we arrived, Mac was the perfect little patient as we measured his weight, height, oxygen saturation, and blood pressure. Because he usually HATES the EKG stickers, we decided to wait until after the echo to do it. We wanted to keep him happy until after his echo. That is the most important part of his visit. When the ultrasound tech came to pick him up he asked Mac if he liked Cars. For the first time ever he happily followed him to the room to watch the movie. He laid down on the table without any resistance, and completely relaxed. He laid there and let the tech get every image he needed and then some. After an extensive echo-cardiogram, we finally met with the cardiologist.

We started with changes to his medication. We don't have any major changes. We are just increasing his blood pressure medicine by a little bit. He said it is just due to his growth, not that there are any major concerns with is blood pressure.

After that, Dr. Horne shared with us about what he saw on the echo. He said that this time he noticed that there is some increased "turbulence" as the blood travels across his heart. Mac's oxygenated blood has to cross from the left to the right in order to go back out into his body. The increase in "turbulence" can mean an increase in pressure on the lungs. Before his first surgery he had too much pressure going into his lungs, but now the pressure in his heart is causing pressure from the other direction, or back pressure. This change prompted some discussion about our next steps. He feels like we might want to go ahead and have a heart catheterization to measure this pressure and possibly open the passageway in his heart a little more to make that crossover a little easier. He said that with him being so close to his surgery weight this might also push us to going ahead and doing surgery. He decided that the best option was to talk to Mac's surgeon and get his thoughts. He will be contacting Dr. Bradley soon and they will make a decision on our next steps.

 We hope to hear something in the next few weeks. I am thinking, based on the direction our conversation went, that the heart cath in March is a pretty sure bet. The summer surgery is still up in the air. That will depend on how Mac grows and what they find when they do the cath. I will share as soon as we know more.

While we wait, please pray for their decision making to be guided by the Holy Spirit. Please pray that we will be able to continue to keep Mac healthy and strong.

Finding Our New Normal

The past month has been a roller coaster ride for our family. We celebrated 6 months and 16 pounds with an open heart surgery! When we do things, we do them BIG! As we have walked through this journey with Mac, I have learned so much about God, my family, and myself. I continue each day to learn and grow from this experience, and I am so thankful that God saw fit to place Mac with our family. This entry in our blog will probably be longer than most. I have a lot to share that has happened in such a short period of time.
 

On the Wednesday before surgery our family loaded up the car and headed for Charleston. We were all anxious to see the surgery completed and begin to move toward a more normal way of life. The trip down was a long one. Mac slept for a while, but then wanted to be out of his car seat and playing for the remainder of the trip. Thankfully he has the most amazing big sister who was great entertainment for the long ride.
 

When we arrived in Charleston we were greeted by our wonderful friends at CrossBridge. We were able to stay at the same house we were in during our stay in September. It was a comfort to be back in the same CrossBridge house once again. I never dreamed that Charleston would feel like home, but now it does.
 

We had to be at the hospital Thursday morning for Mac's preop appointment that lasted all day long. Harlie spent the day with Grannie and Papa at their hotel. After a long day of questions, tests, and waiting, we finally got to speak with Mac's surgeon. That was when he told us that he was 95% sure that we were going single ventricle. This was not what we wanted to hear, but we knew that our prayers were for the best decision for Mac's care and not what we wanted. This surgery meant that Mac's heart would become a single pump instead of a double. This isn't a bad thing. It just means that Mac's heart would function differently than ours.

 The morning of surgery we had to be at the hospital early. When we arrived we were greeted by one of our awesome pastors.  Pastor Danny was able to pray with us before we had to take Mac back to the holding area. It is there that the anesthesiologists have to pry children from anxious mother's arms. I reluctantly released him, only comforted by the fact that I was not releasing him to the arms of some anesthesiologist, but into the arms of God. I have reminded myself a million times that he is not mine. Mac belongs to God. The only way I was able to hand him over that morning was to know that I was giving him back to Him.

We were given a pager from the hospital for updates. The operating room sends updates to families every hour. Each hour we received our message and then waited what seemed like an eternity for the next one. Fortunately for us we had lots of entertainment. Those of you who know my family know that there is never a dull moment when my daddy is around. I am so thankful that he was able to be there to keep things light. I can't imagine sitting there for hours in silence waiting.
 


Mac's surgeon, Dr. Bradley, came to speak with us after the surgery was complete. He said that everything had gone great in the OR and that we would be able to see him soon. He said that as he had suspected, there was no way to do a full repair of Mac's heart. He told us that we will now have one more surgery in a few years and then his surgical plan will be complete. Mac now has half of his blood flow from the body going directly to the lungs and the other half is going into his heart. When the final surgery takes place, all of his blood will bypass his heart and go straight to his lungs to be oxygenated. When we asked about a timeline for the second surgery, Dr. Bradley said that we will plan to have his second surgery when he is 30 - 35 pounds. He also told me not to "overfeed" him. I guess word has gotten around about my ability to make people I love gain weight. ;)

After surgery, Mac was sent to PCICU to recover. We were fortunate enough to be placed in one of the rooms on the back wall this time instead of along the walls as you walk in. This made it possible for Harlie to come in and stay a little longer than she has been able to in the past. It was the most wonderful feeling in the world to have my whole little family together in the same room again after surgery. Over the next few days we enjoyed watching the pumps disappear from his bedside. Any heart family knows that this means that you are getting closer to getting out of PCICU and moved to the recovery floor (8D). On Sunday night I was finally able to hold him in my arms once again. It had only been two days, but it felt like an eternity.

The following day we were moved from PCICU to 8D. When we arrived on 8D we were greeted by many familiar faces and friendly hugs. Mac was back on 8D where he had spent most of his time before his first surgery. We were able to take him out of the room and visit the atrium to play and even go outside.

On Tuesday morning the doctors came in for rounds. The doctor for the week was one that we had not met before. He told us that if we really pushed, he would probably let us go home that day, but if we wanted to stay one more night, he would rather us do that. I wanted to get out of there, but I also knew that we were facing a 4 hour drive with a 6 month old baby who had just had open heart surgery FOUR days prior. We told the doctor that we were fine with staying one more night and that we would leave the next day. We were also told by the cardiology team that after his healing time Mac will be a "normal" little boy. We no longer obsess over food, weight gain, and sats. We even had to turn in our scale and pulse oximeter. That has been very difficult. After spending 6 weeks in Charleston, being trained to track and document every move Mac makes, they tell me to stop cold turkey. I still feel like he is the same boy that needs to be followed so closely, but they assure me that he is not.

The following morning we were packed and ready when the doctors did rounds. We signed the discharge paperwork and left the hospital FIVE days post op!!! This is two days faster than their most optimistic goal of 7 - 10 days.  We were able to make it home in time to surprise Harlie and pick her up from horseback riding lessons! I wish I had a picture of the smile on her face when she came around the ring and saw us standing there. It filled my heart with so much joy.



The picture on the right was taken 5 days after the one on the left.
God has truly blessed our little Miracle Mac!

The next day we had an appointment with the cardiologist in Greenville. Two of the MUSC cardiologists had flown up for a clinic there at GHS and we were able to visit with them for a moment before heading to our room to wait. One of our cardiologists that had been with us for an unusually long 2 week stretch on 8D was amazed at how quickly Mac had been able to return home. He kept telling me that he thought we were messing with him. He looked too good to have been just SIX days post op! Of course we all know why Mac looked so good and recovered so well. He had the healing touch of the Father. I always love to see the doctors amazed by his progress. It reminds me that God is in control and that He has His hand on our son. It reminds me that no matter what the doctors may tell us, He decides Mac's future.

During that visit Dr. Horne made the decision to place Mac on a heart monitor for the next 30 days. They removed one of his medications in Charleston and this monitor will be sure that he can discontinue the medication safely. I am always happy to see a medication go, so the 30 days of monitoring are a welcome aggravation to ensure that Mac is safe.

The next week we had a follow up appointment with Dr. Horne. It was at this visit that we found out that there have been some changes in Mac's heart function post op. They are not major concerns, but we are always cautious with any changes. We will have another echocardiogram at his appointment next week to determine if another medication is necessary. Please pray that the changes they saw were just a result of his heart recovering from surgery and that all has returned to normal. We also had a long talk with Dr. Horne about when Mac will be ready to begin attending a day care. After hearing all of the pros and cons, Dr. Horne said it was his recommendation for me to return to work in the fall. This means that we have the all clear for Mac to start going to day care once or twice a week in July to transition. I am so excited about the possibility of returning to the classroom for the 2014-2015 school year. Now the search begins for a new teaching position. While I would love to return to Wren, I am not sure if there will be a place for me there. Please pray that God will open the door and place me where He wants me.

Most importantly, we are celebrating the answers to our prayers for a successful surgery and a speedy recovery. As you pray for our family this month, please thank God for all that He has done. We know that the doctors at MUSC are the best, but we give God all the praise and glory for our answered prayers. Thank you for praying for our family.



Wilson's Surgery Update 

Just weeks before surgery, Mac was chosen to have a "friend" undergo an open heart surgery of his own. An organization on Facebook called BooBoo Buddies takes stuffed animals and gives them a zipper to match their child. When Mac was confirmed to receive a buddy we thought long and hard about which animal should have surgery. After Mac was born, Harlie's friend Milla gave him a special bear named Wilson. After much discussion it was decided that this special bear should be the buddy to have surgery. Mac gave Wilson extra love and we sent him off the Monday before Mac's surgery on Friday. This week we finally got a picture and word from BooBoo Buddies that Wilson came through his surgery strong and healthy, just like Mac!