Heart Cath Results

The days leading up to Jack's heart cath were long. I was really nervous and started breaking out in hives. I've never done that before so I decided to go to the doctor. I went to After Hours and got a couple of shots and they put me on Prednisone. It has helped me keep it under control for the past week and I am going to see Tiffany's allergy specialist tomorrow morning to hopefully get a more permanent solution.


The night before was tricky. We couldn't give Jack any breast milk after 3am and we had to be there at 6. I was really worried about timing it out right so that he wouldn't be starving that morning. Needless to say we got no sleep that night between trying to work out the timing and stressing over the procedure. We we're up at 2:15 giving Jack his bottle and then I was in the shower by three. We had packed enough for one night just in case we had to stay but were hoping they'd let us go. We pulled out at 4:45 and Jack watched Spongebob on the IPAD in the car until he fell back asleep.


When we got there we were put into a regular room and started the wait. They told us that Dr. Law would be by in a little while to talk to us before they took him back. They brought in the tiniest little hospital gown for us to put on him and let me tell you.. Nobody can make a hospital gown look cute like my boy. :)

Dr. Law came by around 8 and talked us through what they would do. He said they would put him under with a mask and then start his IV. He wouldn't be back there long at all before he was put under which made me feel a little bit better. I didn't want him to feel scared when we weren't back there with him. Then after they were ready he would go in through a tiny incision in his groin and then go into his heart where they would measure pressures and take pictures. He explained the risks but let us know that Jack was in a low risk category and he felt certain that it would be an easy procedure. He said he would call the phone in the room when they were done to let us know how it went. It should take him about three hours once anesthesia was done with their part.


After that Josh and I walked with the nurses down to the floor that he would be on and we walked him to the door of the OR. We kissed him a thousand times and then a few times more before I handed him to a very sweet nurse in brown scrubs. She promised to take good care of him. We watched until the rounded the corner and then I cried all the way back up to our room while people looked at me and wondered what was wrong with the crazy sobbing lady. Haha


When we got back we just had to settle in for a few hours of nervous waiting. I hated the thought that he was down there without me but I knew he was in good hands and was sound asleep. It was also really comforting to have a lot of family around to talk to and joke with. It make time pass really quickly. After about 3 and a half hours the phone rang.


Dr. Law told me that the procedure went well. He said Jack did fine and was resting now and we could see him soon. He said they had one episode during the procedure where his heart rate went up for about 15 minutes but then it balanced back out on its own. Other than that it all went well and there was no damage done to his veins. He told me that he had to make some rounds and would come by our room later that day to give us the details.


Then Josh and I got to go meet Jack in recovery. We practically ran. When we got there he was in his tiny little bed still hooked up to monitors. They had removed the tape from his face but the sticky residue still marked his sweet cheeks. He was still so out of it that he couldn't keep his little eyes open. He tried so hard to open them and look at us but they would just roll back into his little head. We kissed all over him and petted him while we waited for his recovery time to be over. When that time had passed we walked next to his little bed while they rolled him back to his room where our family anxiously waited for him to round the corner. They were so happy to see him and he was finally starting to come around more and open his eyes good.

When we got settled back in the nurse said I could try to feed him. The poor baby hadn't eaten in so long. We got wrapped up in blankets and settled into a chair and he went to town on his bottle. Over half way through his 5 ounces he started throwing it all back up. It wast he most he had ever thrown up at one time and it scared me and him both. We got him sat up and he got it all out and then we wrapped him in some different blankets and let him settle in for a nap in the MaMaRoo swing that they had brought in for us to use.


His little leg was still hurting from his incision plus he was really sick from the anesthesia so he didn't sleep well at all that day. He would roll around and moan like he was hurting and sick. It was so hard as a mommy to know he wasn't feeling good and I couldn't do anything about it. As far as that goes it was a really long day and an even longer night. We had to spend the night because his reaction to the anesthesia was rare for a baby and the doctors and nurses didn't really seem to know what to do for him. We just basically had to wait it out. We tried over and over to feed him, first breast milk and then Peidalyte and he just couldn't keep anything down. He eventually emptied his tummy out and started to dry heave. That was just pitiful. We finally convinced them to start a new IV and start getting some fluids into him. We were really worried.


When he got his IV for the procedure they had stuck him 16 times. There were bruises and stick marks all over my poor baby's body. We were outraged to tell you the truth. They had even stuck him in his sweet head. We just felt that was completely unnecessary. When it was time to stick him again you can bet Josh and I were going to be in there. Even if they made it clear that they didn't like that. They took him to a different room and three nurses worked to find a good spot. Thankfully, they got a good one on the first try in his little hand and they wrapped it well so that it wouldn't get messed up like the last one had. He had been through enough. This needed to be his last stick for the day.


When we got back to the room Dr. Law was waiting there for us. He explained exactly what he had found in the cath and the steps we would take from there. Here's what he told us.


He talked a little bit about his VSD which we already knew he had but he also told us about some narrowing at his ASD which will need to be made bigger. There is also some narrowing at his Pulmonary Valve which restricts some blood flow to his lungs. The pressures there are not dangerously elevated but are a little bit on the higher side and they will need to be mindful of that when doing his surgery. His VSD is a little bit on the small side and causes some pressure drop which again is something they needed to know about when moving forward.


Dr. Law then said that he has decided to move forward with his surgery in the next month. There is also a little bit more surgery in addition to the Glenn that will need to be done at the same time. One thing that will need to be done is an atrial septectomy which will make that hole (ASD) bigger. Also a Damus-Kaye-Stansel procedure which will bring the pulmonary artery over to the aorta. This allows the blood to go out both pathways so that the pressure in the ventricle is not higher than the pressure outside of it. They will also do the Glenn at the same time.


He feels that Jack has grown really well and is a nice size for this procedure and he feels that the benefits of going ahead with the procedure far outweigh the added risks. Basically, its time and we're going for it.


He said we should be made aware of a couple of things going into the surgery. Many times when they do the Glenn there will be an improvement in the saturation. But Jack's saturation is already good so there will be an improvement in his blood flow but ultimately we might not see much change in his saturations. He said they might even be lower after surgery because of all of the changes his heart will go through but there will be a nice physiological improvement for his heart for the long term. Which is really where it counts anyway.


We are still looking to do the Fontan procedure at around 2-3 years of age. So after this procedure next month his long term plan is still the same. The only changes in his overall plan are the additions he has added to the Glenn surgery. After that we'll continue on our original course of action.


He did add that Jack's heart function is really good and the valves work really well. He said that his function is fine and the problem he has is with the plumbing. He said overall he thinks everything still looks favorable and he has a really positive outlook on how everything is going to go.


From there we discussed surgeons and scheduling. He has a surgeon that he has chosen and scheduling will call us within the next couple of weeks to hammer out a specific date.


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After a long night for our sweet boy, he finally started taking small amounts of breast milk the next morning and by that afternoon had successfully kept down four ounces. We finally got discharged at around 2:30 and came home. It still has taken a couple of days for him to bounce back but he thankfully woke up happy this morning and has had a great day. He has also gone back to his regular 4-5 ounces today which was a big relief for us. There is just SO much comfort in being at home with our boy. When we're at home it doesn't feel like there is anything to be afraid of.


Now we just have a month of anxious waiting ahead of us. Josh and I have decided to focus on our spiritual preparation. There is no amount of emotional or physical preparation that we can undergo that will ever render us ready to hand our son over to surgeons in a months time. We have decided to spend this month in the Word and in prayer because God is the only preparation that we truly need. We are praying for His hand on our sweet boy. That he will guide the hands of the surgeons, doctors, and nurses that work on Jack. That He will provide complete healing in our son and allow this surgery to be the means by which that healing comes. We know He has a purpose for this and we intend to be used to the greatest extent that we can be.


We are also praying for God's comfort and peace to be upon us during this time. As we find out more information about the surgery we grow more nervous and anxious. We are praying that God will just be with us and allow us to get through this with as much strength as possible. We know that God's plan is moving right now and we are just doing our best to have faith and trust in His plan. He is our Lord and we trust Him.


Ephesians 3:20-21 "Now to Him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen."


Our God is able to do immeasurably more than anything I can ask him to do or imagine he could do for me or for Jack. He will provide healing and peace for my son and my family. I am standing on the Word of my sweet savior. Please stand and pray with me. <3