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!!!
