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! 

Mac's Anatomy

 

Many of you have asked us what is wrong with Mac's heart. This trip to MUSC we were able to get images of his specific anatomy and what his anatomy will be when his surgery plan is complete. The first picture you see is a healthy heart. It shows how the blue blood (blood that has been depleted of oxygen) flows into the right side of the heart and out to the lungs. When it comes back into the heart it is red (blood with oxygen).  The red blood is then pumped from the heart out to the body. The blood does not mix between the ventricles. Each side of the heart serves its own purpose.

 

When Mac had his catheterization in February we were able to see details of how his heart was created. Mac's heart had both ventricles, but there was a hole between the left and right were the blue and red blood mixed together. The aorta which is supposed to be on the left ventricle is located on the right, and the aorta and the pulmonary artery are switched.

When Mac's heart pumped blood in from the body to go to the lungs it got mixed with the blood that had already been to the lungs and would be pumped back out to the body. Some of his red blood would also be sent back to the lungs and would be reoxygenated.

 Because he had all of this blood mixed there was too much pressure on his lungs so they placed the PA band to reduce the amount of blood flow to his lungs during his first surgery. You can see two black marks just under the number 13. This is the location where his PA band was placed.

After his first surgery all of his blood still mixed.

 

 

 

In March, Mac had his second surgery. The surgeon hoped that he would be able to go in and use the hole between the two bottom chambers to repair Mac's heart with one surgery. Because the hole was too small, we had to go a different route. Even though Mac has a left and right ventricle he is now considered a single ventricle patient. The surgeon removed the pulmonary artery from the inside of the heart and sewed it up so that no blood flows from the heart into the lungs. He then attached the superior vena cava that brings blood from the upper body to the pulmonary artery. That blood does not go into the heart anymore. It goes directly to the lungs. Then once that blood is oxygenated it goes into the heart to be pumped out to the body. There is still an inferior vena cava that sends blood from the lower body back to the heart on the bottom. It is were you see the blue blood going into the heart at the bottom. Right now there is still some blue blood mixing with the red and going back out to the body.

 

 

When Mac has his final surgery in a few years he will have the anatomy below. The lower part that was pumping blue blood into his heart will be connected to the pulmonary artery using a Gortex tube. This will be an adult sized piece of flex that will allow him to grow and use the same piece of material throughout his adult life. When this is done there will be no blue blood going into Mac's heart. He will only have red blood from the lungs being pumped by his heart out to his body.

 

 

We were unsure until after surgery if Mac would be a repair or single ventricle patient. This surgery plan will allow Mac to lead a normal life. He will be able to run and play and be a "normal" little boy. The only difference is that he will tire faster than most. We are so thankful for the hope that our son will be able to lead a "normal" life. The doctors say he won't be an "Olympic athlete" but who knows what God has in store for this little guy!  

Mac truly has a heart like no other. The questions we faced in the beginning were because his heart is so unique. We are so thankful to be at a place where we can begin to move forward as a family with fewer questions and more plans for the future.

Mac's Milestones

Mac is growing so fast! He is enjoying trying new foods and now feels that every meal for us means solids for him as well. His favorite food so far is bananas. He also likes sweet potatoes and oatmeal. Green beans and rice cereal were not hits. He is becoming more and more vocal. I am just waiting for him to utter that first, "Mama!" any day... ;)

This week he rolled over for the first time. He now rolls to his tummy and gets mad because he is there. He forgets that he can just roll back onto his back. Each of these accomplishments is a major celebration for our family. We are so thankful for each and every milestone. The next one on the list is Mac's half birthday! One week from tomorrow he will be 6 months old! I cannot believe it.

In less than two weeks we will be back at MUSC awaiting surgery! I cannot believe that the time has already come! Mac's surgery date is March 7th. This means that we have to be down there on the 6th for his pre-op work up.

We have been anxious to find out what procedure will be done. We have been told by the doctors at MUSC that the goal is do to a full repair, but they are not sure exactly what they will find when they get inside of his heart. Yesterday a letter arrived from our insurance company. This letter was to let us know that the hospital had notified them of Mac's upcoming procedure. The notes on the letter said that he is scheduled for, "Repair of double outlet right ventricle with intraventricular tunnel repair!" This sounds like they are pretty confident that a full repair surgery is possible! The other procedure is called the Bi-directional Glenn. I am so excited at this new hope of a full repair! We understand that there is still a chance that when they go in the Glenn may be the final decision, but there is still a strong chance that he will get a FULL REPAIR!!!! The full repair means no more surgeries and no restrictions! He would be "fixed!" Please help us pray that this procedure will be possible.


Harlie is doing fantastic in school. She has her 3rd grade play this Tuesday night. We are so proud that she has a solo and a speaking part! Not only is she an excellent student, but she is an awesome big sister! Mac loves to watch her sing and dance. He lights up whenever she is around. We are so proud of this amazing little lady. She brings so much joy into our home. Please keep her in your prayers as she prepares for some quality time with G&P while Mommy and Daddy are in Charleston. She is such a trooper!

Harlie and Vince were able to enjoy an evening of fun this Friday at the WES Daddy/Daughter Dance. She was absolutely breathtaking in her Mardi Gras attire!

As you pray for our family, please pray for the following things...

• Safe travels for our family to and from Charleston over the next few weeks.
• Mac's surgeon and every other person who is in ANY way connected to this procedure to be anointed by the Holy Spirit.
• That ALL decisions made in Mac's care are best for Mac.
• Strength for Mac's little body as he fights back after surgery.
• Peace for all of our family. (We are all anxious about this procedure.)
• Physical, mental, and emotional strength for Grannie & Papa as they step back into a parenting role for the next couple of weeks while we are in Charleston.
• Strength for the BEST BIG SIS EVER! This will be hard on her because she is going to be away from us again.

Thank you to each of you who pray for our family. I know it may not feel like a big thing to you, but it is the greatest gift you can give to our family. Many of your prayers have already been answered and we give all praise and glory to God for those blessings.

Hearts for Mac

On Friday when I went to pick Harlie up from school, I was greeted at the door with smiling faces that held wonderful surprises for our family. They led me to the cafeteria. I was reduced to tears when I rounded the corner to see photographs of our family displayed above each grade level. The entire wall was decorated for Hearts for Mac! Words cannot express the love and support I felt at that moment.
My wonderful Wren family had planned a fundraiser to help our family with Mac's medical expenses. Starting tomorrow, students will have the opportunity to purchase hearts to be decorated and placed on the wall with their grade level. Many times I have assisted with fundraisers for various causes or other families in our community. I never dreamed that the love would be returned to our family in this situation. We are so blessed to be a part of this school and community. Thank you Wren family.

Click below to view the Hearts for Mac video.
Miracle Mac's Video

Mac's Heart Cath

Last Wednesday morning we arrived at the hospital at 6:00am for Mac's first heart catheterization. I was nervous for many reasons. First, my son was about to undergo a procedure where catheter lines were run directly into his heart to take measurements and images of his anatomy for diagnostic purposes. Second, there was a chance that the doctors could decide that he needed stints or a balloon procedure depending on what they saw. Third, this procedure brought us one step closer to Mac's first open heart surgery.
They took him from my arms at 7:30 and told me we would hear from them every hour. We waited anxiously for our first update. The first call told us that he was sedated and had an iv in each hand. They told us that they were beginning his echo. The second hour mark let us know that his echo was complete, they were inserting the catheter lines, and they would begin with measuring pressures and oxygen saturations. Our third update said that the lines were in place and they were taking images of his heart.  The fourth call said that he was finished and we would be able to see him in 30 minutes. As soon as we got the OK to return we rushed down to his room.
When we walked through the door, I heard the cry I hate most. If you have ever had to have a breathing tube you probably remember the raw feeling that the tube causes. For an infant, this horrible tube leaves their cry sounding deep and raspy. I knew, even though it sounded nothing like him, that the cry filling the same day room was the sound of my precious boy. We rushed to his side and tried to calm him. He was afraid and in pain. Vince had the horrible job of holding his leg still (to prevent the cath holes from bleeding) for the next 30 minutes while our precious boy laid there confused and in pain crying out for us to hold him.
As soon as the nurse gave the OK, Mac was in my arms. We had him, but this boy was not the one we brought in that morning. He was scared, in pain, confused, and having trouble breathing. For the next 4 hours we held him. Trying to hold him still. Trying to keep him calm. Trying to bring him comfort. During this time he would sleep for a few minutes and then wake screaming out in pain.
When Mac is at his best his oxygen saturations stay in the range of 75 - 85. This is much lower than a "healthy" child. His heart rate is usually around 135. During this recovery time his saturations were not rising above 70. When he would cry out his sats would drop down into the 50's and his heart rate would spike over 200. They gave me an oxygen mask to keep blowing on him while he rested, but that didn't do much to help. When the nurse started looking nervous, I began to get even more anxious. I asked when they would make the decision to do something. They told me that they would wait until closer to time to go home to make a decision and give him a chance to pull out of this on his own. Just before 4:00 pm they made the decision to admit him for the night.
When we arrived on 8D, we were greeted by many familiar faces. The first of which was Mac's favorite nurse, Mrs. Corrie! It was such a relief to be surrounded by so many wonderful people that we know and love. Mrs. Mary was the next face I saw and she greeted me with a HUGE hug! I am so grateful that God has placed these people in our lives. They are such blessings when we need them most!
Once we were settled in the room, the doctor came in and told us that they thought the reason Mac was having difficulty keeping his sats up was because he had too much fluid. This was such a reasonable explanation. He looked so swollen that I was sure that this was the reason. I was so glad to hear that the fix would be LASIX. We are very familiar with Lasix from our previous trip to MUSC. They started him on Lasix early in the evening. He immediately began to pass the fluid. As he received Lasix throughout the night they were able to wean him off of his oxygen. Around 3:30 when I woke to the horrible sounds of our heat unit (see post on FB) they turned the oxygen off. He maintained his sats and we were able to remove the oxygen tube around 7am.
Around 8am they came in and told us we were going home! We had to go through the discharge paperwork and pack up. We were walking out the doors by 10:30.
With all of that said , we don't have a lot of information in the way of results.
While we were in same day holding him down, the doctor came in to tell us what she saw. She said that his PA band is SUPER tight. This means that he is now ready for his next surgery! It usually takes about a month to get on Dr. Bradley's schedule. We are hoping to hear from MUSC early this week with a date for surgery.
Your next question is, "Are they going to be able to do the repair?"
The answer, "We don't know..."
Honestly, I am really not worrying about which procedure they decide on. We have come to the place in this journey where I understand that this decision is out of my hands. Either way this surgery will require Mac to be placed on the heart lung bypass machine. The surgeon will actually have to stop his heart and open it to repair or bypass. I have been praying for the surgeon and the others involved in making this decision. I am trusting that God is going to guide their decision making. We may not know what that decision is for a few more weeks. As soon as I know I will update you all.
Please continue to pray for all of those involved in the decision making process and the actual procedures ahead.

Everything Changes

We knew from the moment the PA band was placed that it was a temporary fix. It was placed to buy us time. Time for Mac to grow and develop. Time to see if it would be possible to do a full repair on his unique little heart.

Last week we went to the cardiologist for a routine check up. He was very pleased with Mac's appearance  and anticipated no concerns from his ECHO based on how healthy and happy our little miracle appeared to be. Dr. Horne's computer system was having difficulty updating, so he told us that he would look over the ECHO and get back to us in the next day or so. He said that if the ECHO looked good we probably wouldn't need to even come back to see him until after our cath which was scheduled for March 12th. This was wonderful news! I was excited that we might be able to spend less time in the doctors office during the month of February.

The next morning Mac had an appointment with his pulmonologist for his synagis shot. This is the shot that protects him from RSV. When we arrived the nurses had a difficult time getting a good oxygen saturation reading. They tried for 30 minutes or more to get a number that they were happy with . When everyone had tried and no one was successful they decided to call Dr. Horne. He told them that he was fine with the number, but for me to keep an eye on it and call him if anything changed.

I decided to go ahead and stop by cardiology since both offices are in the same building to see if he had read the results of the ECHO yet. (I was also wanting the nurses in cardiology to check his sats.) They did check and got the same results as pulmonology. They sent a message to Dr. Horne who was at a different office that day. I left waiting to hear back from him by phone.

When the call came, I was not prepared for the results. Dr. Horne said that the ECHO showed changes in the pressure through Mac's VSD and it looked as if the left ventricle had actually reduced in size! WHAT?!?!?! We made plans come to back this week for a follow up visit to do a repeat ECHO to confirm what he was seeing.

Over the weekend I noticed some changes in his behavior. There was not one thing in particular, but just subtle changes in his behavior that concerned me. I have been told to trust my mommy instincts and contact cardiology if I have any concerns. I did so and spent a good deal of time talking with the cardiologist on call about what I was seeing. We agreed that the best thing to do was to keep an extra close eye on things, but not bring him into the hospital over the weekend. I don't ever want to keep him home if he needs medical attention, but I also don't want to take him into the hospital and him get sicker because of the germs he came in contact with there.

The next day seemed to be more normal. He was a little off on Monday, but then Tuesday night it all fell apart. I noticed that he felt warm and decided to check his temp. He was running a fever! If this had been a "normal" baby I probably would have dosed him with Tylenol and just kept an eye on him assuming it was teething. Instead I panicked! I called the cardiologist to be sure that I should call the pediatrician and not them. They told me to go ahead and call our pediatrician but that they would pass along to our cardiologist that something was going on. The pediatrician scheduled us for a 5:10 appointment. Vince kept Harlie at home and my sweet mom met me at the doctor's office. You see when you take a heart baby into the doctor with a fever there is a chance that they will send you to the hospital. I was not taking a chance on that without my mom being there for moral support!

When we saw the doctor they tested him for RSV and flu. You cannot even imagine how scary it is to hear that your heart baby could possibly have RSV. Thankfully both tests came back negative.  She said that we could admit him to the hospital if I didn't feel comfortable taking him home, but that if we wanted to go home she supported that decision as well. I told her that I would be super vigilant in keeping an eye on his sats and be sure he was getting enough fluids if we didn't have to go to the hospital. She scheduled us for a follow up visit the next morning just to be sure that he was improving and did not need to be hospitalized.

The next morning Dr. Song confirmed that he did not have RSV with one more test. She told us that he had the cold that the rest of our family has and that we should continue to keep a close eye on him. She also ordered an x-ray just to be sure that he didn't have any fluid on his lungs. This was not just because of his illness, but the week before we had stopped his Lasix. This is the diuretic that he was taking when we came home from the hospital. There was no fluid, so we were cleared to head home and rest.

Thursday morning was our follow up appointment with Dr. Horne. Mac had his repeat ECHO and then we waited to find out the results. Dr. Horne said that the new ECHO did not show a reduction in the size of the left ventricle. PRAISE THE LORD!!! This was probably just a difference in technique from one tech to another. It did however show some other concerns. The PA band that was placed during his first surgery is showing signs of slippage. As Mac grows the band slips higher and places pressure on the branch of the artery that goes to the right lung. The flow of blood is reduced, which explains why his saturations have been lower. He also said that there was another pressure change in the VSD. This is the hole that they would use to repair his heart. That hole is still small for all that they need to do. I never would have dreamed that I would want the hole in his heart to be bigger. But I do...

We discussed the concerns with these changes and he told me that he felt it was time to do the heart cath. He told me that he would contact MUSC and I should hear something today from them about rescheduling.

Today I got a call from Dr. Zyblewski. She said that Mac's surgeon and several of his other cardiologists had discussed him yesterday. They decided to work him into the schedule for next week. Tonight we got another call telling us that his cath is now scheduled for Wednesday, Jan.
29th.

In some ways I am happy because this means we will get more answers to our many questions. In other ways I wish we could have held out a bit longer. We were hoping that Mac would be able to be bigger before we took this step. The bigger he gets the more chance we have of a full repair instead of having to bypass the left side of his heart.

Either way I am glad that we are seeing the signs in time to prepare for the best care for our precious little miracle. I have prayed that God will help us see when we need to do something, and He has done that. He has guided us this past week in making the trips to the doctor and we are seeing the need to make a move.

Please help us pray for the doctors, surgeon, nurses, and any other staff member that will be involved in Mac's care during this procedure. Please pray that they will be able to see exactly what they need to see in order to make the best decisions for his care. Please pray for an anointing over each person who is part of this process. Please pray for wisdom for us and the doctors. We don't have much say in what procedures they actually do in the end, but we are Mac's voice in this. I pray that I God give me the words to speak when I need to speak and bridle my tongue when I need to be silent. Please pray for Harlie as she will be staying in the upstate with my parents while we go down. I know that this is hard for her too. She loves her little brother more than words can say. Please pray for my parents as they support us by taking care of Harlie. Not only do they worry about their grandson, but they worry about their daughter and granddaughter in this situation. I can only imagine how hard this is for them.
Please pray for Mac to remain healthy this week so that there are no delays in this procedure. Please pray for strength for his little body as he undergoes this procedure.

I am sorry that this post is so long. It has been a busy week. Thank you for taking the time to read. Thank you for your prayers. We love you all.


The pictures in this post were taken at 4 months. I am sorry it has taken me so long to get them posted to the blog! I cannot believe that he is almost 5 months old!!!

 

 

Four Stockings on the Mantle

As a young woman I always envisioned Christmas morning with two young children waking excitedly on Christmas morning to open their stockings. When I woke up this Christmas morning I saw those four stockings hanging there and realized my dreams had come true. Sometimes little things mean to most. Seeing the four stockings on the mantle this year was a wonderful reminder of the blessings we have received in the past year.
Mac slept in his Grannie's arms, while Harlie opened both of their gifts. Being together at home this Christmas was the best gift Vince and I could have ever received. As we celebrated this holiday together as a family, my thoughts often drifted to the families that were not able to celebrate this season at home with their children. I find myself thinking of this more and more each day. I pray for the other families that are enduring hospital life on a daily basis.
As our little fighter grows stronger and stronger I rejoice and give all honor and glory to God.

3 Months With Our Miracle

On December 3rd we celebrated 3 months with our little miracle. We continue to see God's blessings in his life. Today we had two doctor appointments. The first was for Mac's Synagis shot. This is the shot to prevent him from getting RSV. Then we had another appointment with his cardiologist. These appointments are quite long. Today's visit was 3 hours! I will begin with our doctors appointment and then update you on a few other blessings that we have seen lately with our little man.

Last week the cardiologist did a 24 hour EKG. Today we found out that the results of this EKG were NORMAL!!! Something normal is hard to come by these days, so we are very excited about this news. We had seen several symptoms that could have meant that there were changes taking place in his heart. He did not have any incidences of tachycardia or irregular rhythms of the heart. He also had another echo of his heart today which showed no changes. Dr. Horne told me that if we see changes they would be gradual and we are to continue to just keep an eye on things to be sure we notice any changes that are taking place. We continue to track his feedings, output, weight, and oxygen saturations. We are also cutting back on one of his medications! That means that some days he will only have to take one med!!! Right now, he says we are doing exactly what we need to do. Mac is eating and gaining weight. He is growing stronger every day! God is blessing him so much!

Lately life at the Wilson house has begun to find a rhythm. Not our usual hustle and bustle, but a slow steady rhythm. Day by day we are finding our new normal. Harlie is very happy at school. She is loving her days filled with learning and fun. She looks forward to horseback riding lessons and PE on Wednesday and Launch on Thursday. Those are the highlights of her week. She has found a new series of books that has her hooked. That girl is such a reader. She is becoming an even better big sister than we ever imagined. She is learning to comfort and soothe her baby brother instead of getting frustrated with him. She is an expert on making him smile and coo. She touches my heart with her prayers for Mac and all of our other <3 friends. She prays for each of them by name daily. Not to mention her excellent grades in school. I am so proud of the amazing little young lady that she has become.

Mac is growing and developing such a wonderful little personality. He is such a great baby. He is now sleeping 7 to 8 hours most nights. He is eating like a horse! The child that we thought would have to have a G-tube to get home is now taking as much as 5 ounces in some feeds. Last night he weighed in at 12 pounds 3 ounces. This is a huge accomplishment for a heart baby. So many of the children at MUSC end up leaving the hospital with a G-tube because they cannot consume enough nutrition orally and often have difficulty gaining weight. We give ALL thanks and praise to the Lord for the way that our son is growing and thriving here at home. I have enjoyed my days at home cuddling and talking with Mac. His smile lights up my soul. When I am feeling down and wondering how we will make it through all of this, I just look at him. His joyful spirit strengthens me. He is stronger than any of us. He as been through so much, but he knows nothing of his struggles. He only knows that he is home with his Mommy, Daddy, and Big Sister who love him. He knows that he is warm and safe. He knows that all he has to do is cry and one of us will rescue him with a nice warm bottle, dry diaper, or snuggle. I am so blessed to be his mom. I am blessed to be able to hold him in my arms. I am blessed to know that he is God's child, and He somehow loves him even more than I do.

As you pray for our precious boy we ask you to help us pray for these specific things.
1. Mac's continued growth and success at feeding here at home.
2. A miraculous healing of his heart or that he will be able to have a full repair instead of the other surgeries. We do not want to bypass the left side of his heart if at all possible. God put it there for a reason. We believe that it was so Mac could have normal heart function.
3. The doctors will be able to see all of the details they need during his heart cath in March.
4. Wisdom and discernment for doctors in decision making as to where to go from here.

Thank you for your continued prayers. We love you all and pray that you have a MERRY CHRISTMAS!!!

Mac @ 3 Months Old