Here We Go.

It's been a while since I updated, so let me bring you up to speed. Luckily, nothing too exciting has gone on between my last update and now. Logan was sick in March, and we ended up at the cardiologists to make sure it wasn't anything respiratory, and it wasn't, thankfully. While at that appointment, we made another appointment, basically one to check up on him after his cold subsided, and before our one year appointment in July. We went to the follow up appointment on Friday.

Lately, Logan has learned how to crawl, which is just wonderful, he also pulls himself up and walks along furniture. He does amazing, and he IS amazing. Because of him moving more, he exerts more energy, therefore, needing to breathe faster to compensate for his already low oxygen levels. This in turn, makes him blue. His lips turn blue/purple, and his extremities get purple or ashy. Seeing this really brought it back for us. It is now in our face everyday, that our amazing boy, isn't as healthy as we pretend him to be. Its kind of like an out of sight, out of mind type of thing. It's no longer out of sight. So, of course, this has been a concern of ours. I planned on bringing it up at his appointment.

We arrive at the appointment, they do the routine check in, EKG,blood pressure, O2 levels, etc. As soon as they tried to obtain his o2 saturation level, I knew it wasn't going to be a quick appointment. Logan's o2 sat. is typically in the high 80's. 85-89. His number that popped up on Friday was 73. It fluctuated between 73-84. The doctors then ordered an Echo of his heart. Once this was completed, I was informed that his shunt, is in fact, becoming too small for him.

Logan weighs 24.5 lbs. He is in the 97% for weight amongst kids his age. Our doctor made sense of it to me like this, he is the size of an 18 month old. They need to look at him, and make their decisions based on that fact, and the fact that his heart is working as if he is 18 months old. We were told that he would make it past his first birthday before needing his next surgery, but when you think about it with this logic, his body is functioning like that of a year and a half old. All of this leads to the plan that it is time to move forward.

It is time to start planning for his next surgery. He will be going in on the 27 for a heart catheterization, where he is sedated and they insert a catheter into his artery in his thigh and run it up to his heart where it will take specific measurements of pressure, o2 levels, etc. He will also have an angiogram, where they insert a dye into his heart and use an x-ray camera to record the blood flow. This will give them and the surgeon a better idea of how his heart has grown and help them decide where they want to go from here. We were told it will go one of two ways, either he will go in, and only have his shunt replaced, or he will go in, have the shunt replaced, and they will continue with the big surgery. We will not know what their decision is until they have their conference after the heart cath is done.

I am assuming we will be back for surgery within the next couple of months. I was really looking forward to having his birthday at home, and I know we don't know for sure what is going on, but I have a feeling we won't be able to.

So, here we are and here we go.

Happy New Year!

We haven't updated recently, because not much has gone on. Logan has had a cold for what seems like forever, and I have brought him to the doctors and urgent care more than I'd like to admit. I'm learning now, to stop being so anxious about it, and recognize the more serious signs of when I need to worry vs. standing over his bed while he sleeps when hes congested. It's still hard not to get nervous, but I guess that comes with the territory.

Today was our 6 month checkup. When we left the hospital we were told that Logan would have another surgery before he was 1 due to the fact that he'd outgrown his shunt and need a replacement. So, today was a big day, would we get a surgery date? How soon would it be?

Logan did great at his appointment. He tolerated the many blood pressures they took, he stayed still for the EKG, and he did as good as he could for the echocardiogram. Once they were done with all of their tests we went back to our room, where Logan decided to take a nap, and waited for the doctor. Once he came him, he did a routine check of Logan, listened to his heart, checked his skin, and anything else he could do while Logan slept. The doctor then went to look at the pictures from the echo. We waited.

He returned and said that everything looked great. Better than great. Logan is doing remarkably, in all aspects. We were told we were good for another 6 months and they would check again. The shunt that was put it was big to begin with, so Logan has grown into it, but not out of it yet. Our idea of having another surgery within his first year is now gone. (Unless something drastic changes)

The doctor seemed astounded with how well he is, and how good he looks. He said that the next open heart surgery is a big one, (It scares me when they say that) and that they want Logan to be as big as possible before they do it. So, they will let him grow as much as they can before even thinking about surgery. The doctor suggested we could be pushing 2 years before the next surgery.

The next procedure is called the Rastelli Procedure. I haven't done much reading on it yet, nor do I want to. I plan on enjoying my time with Logan until I really need to concentrate on the next surgery. I don't want to get too worked up yet, haha. So, we have a "healthy", happy baby, and we are going to enjoy the next 6 months of him achieving new milestones and becoming mobile. Yikes!

(Here's a picture of him being a superman ninja turtle, and when he had a small snack break from the echo)

2 months!

Wow. 2 months old. We have received letters and cards from near and far regarding our little heart warrior, it's just amazing how many people we have reached!

I haven't updated lately because there hasn't been much to report on. No news is good news! He just got home from his 2 month appointment. He is 13.1 lbs and 23.5 inches long. He is doing great! He eats a lot, and sleep great. He's starting to be more alert now, which is fun, and he smiles so big it makes my heart melt.

Corbin loves him and he's a great big brother. He still has his days when he forgets he's not an only child anymore, haha. All in all, everything is on track. Logan is a healthy little guy, if you didn't know about his issues you'd think he was a perfectly healthy baby. We couldn't be happier! Thank you all again for all of your thoughts and prayers! We will update when we have anything new to mention. Take care!

Cardiology Appointment

Today was Logans first cardiologist appointment since coming home. He did excellent.

His sats were 85% which is right where they want them. His blood pressure was great and his lungs sounded perfect. We were told we could discontinue his Lasix medication, as he shouldn't need it anymore. The doctor was thrilled with how good he looks.

Unfortunately at this time it is too early to get an idea of what is next. The doctor mentioned a procedure called 'The Glenn Procedure" which I have read about previously. It is another shunt procedure, and not a permanent fix. But whether or not they will do it is just a theory right now.

They expect that his next surgery will be within 8-10 months. We go back in 4 months for another checkup. Everyone seems very pleased with his progress. He just needs to gain weight now!

I also wanted to add that we welcome visitors! We just ask that if you or your kids are sick that you wait until you're feeling better. A simple common cold can land Logan in the hospital rather quickly. Thank you in advance.

Welcome home!

Ah, it's so good to be home and all together again! Logan has been doing great and Corbin is adjusting, sort of. Haha. Logan went to the doctors yesterday and will go back next week. They really want to make sure he is gaining weight. He has been doing very well with eating, there are still times he struggles but otherwise he's improving. He is on Lasix, a medication to help get rid of excess fluid. This is to help prevent congestive heart failure. Aspirin and a multivitamin. So the medication regime isn't bad at all.

He has a 24/7 on call nurse that works in the area, so it's comforting to know there is someone close by that can come check him out if we have any concerns that aren't 9-1-1 worthy. She will come to the house once a week just to check on him.

His chest incision looks good. There is no longer a bandage on it.
We still have to wait to give him a bath but I can't wait to see if he likes the water. Corbin loved it, and still does.

He has an appointment with the cardiologists on wednesday. I'm not sure exactly what they will be doing, but I'm sure and echocardiogram and hopefully we'll get insight as to what the future holds. I will update once we have that appt. Otherwise, all is well. We are so grateful to have him home.

4 weeks

Is how long Logan has been looking at hospital walls. 4 weeks in a hospital bed, 4 weeks of us eating hospital food, 4 weeks of going back and forth from home to the hospital and 4 weeks of waiting.

We can finally see the light at the end. The doctor told me yesterday that she wants us out of here by Friday. His output from his chest tube, which we have been struggling with, was finally under 25. If he can keep it low, his tube will come out. Then all we have to do is work on eating.

They took out his NG tube and are expecting him to eat and gain weight on his own. This puts alot of pressure on him and us. He has a hard time eating and it can be very frustrating. It is amazing, after all he has been through, this is what we are having trouble with. Something as "easy" as eating. He has trouble staying awake to eat, and when he's awake he sometimes coughs because he gets ahead of himself. We have to take our time because he doesn't know how to suck and swallow and breath at the right times. He breathes fast because of his heart issues and it makes it hard for him to catch his breath sometimes. He has come a long way, but it is still a slow process when we feed him. He has to work really hard to eat, which makes him tired, and then he falls asleep. When he had the NG tube, it wasn't such an issue because we knew whatever he didn't eat,  we would just give it to him through the tube..but we don't have that option anymore. The only way to get it into him is for him to eat. It's tough. Who would have thought this would be one of the hardest parts?...

I am so excited to come home, I'm terrified, but excited. I am going to miss our friends we have made at the hospital and their little heart warriors. I am going to miss having a doctor around the corner to answer my questions. But I cannot wait for Corbin and Logan to begin their bond. I cannot wait for the craziness to ensue in our household.

Just a quick shout out to one couple in particular, Trish, her husband Aaron and their heart warrior Zander. We are so happy to have met you and be a part of your journey even though it was only for a short time. It was nice to be able to forget about what we were all going through and visit and laugh with you guys at night before bed. You two are incredible and you inspire me.

We are so thankful to have had such an uneventful recovery, it isn't typical. I can only hope this is how all of his recoveries will be. We were told we will be back in 6-8 months for his next open heart surgery. So, as happy as we are that this is over, before we know it, we will be starting all over again. It's hard to think about. In the meantime, we will give Logan as much love as we possibly can. Every moment with him is especially special.

I will keep you all posted when we are busting out of the joint. Fingers crossed for Friday!

Room Air

Logan is now off of supplemental oxygen and doing just fine keeping his O2 levels where they should be. Someties when he gets upset they get a little low, but that is to be expected. We have been working on feeding him with bottles, and he has good days and bad. Some days he will eat all of the bottle and others he really struggles and gets too upset. They have been fortifying my breastmilk with more calories so that he will gain weight.

The speech therapist helped Jake with some pointers on how to feed Logan. We lay him on his side with his feet towards us and his head away, and when he eats we have to count 10 gulps and stop so that he can catch his breath. This seems to work really well. Our only issue is that he falls asleep in the middle of eating and he is very hard to keep away. Even with the old cold wet washcloth trick!

We have also been moved out of the intensive care unit and we are in the new part of the Childrens Hospital. We have a nice big room.

Last night when we came to feed Logan the nurse was about to change his dressings, so we waited and watched. When he changed his dressing for the chest tube we noticed that it had come out. The tube is held in place by one stitch. The stitch had pulled out of the skin and was about an inch away from where it should be. This causes major concern because they worry about air getting into his chest cavity. So, with it being a Sunday and 10pm, it was a little hectic trying to get ahold of all of the appropriate people. He needed a chest x-ray to check the tubes placement, which ended up being just fine, and there was no air in his chest cavity, so they decided to just stitch it back in where it was. I wish they could have just taken it out, but his drainage has still been a little too high for them to remove it. He is a pretty tough guy, he took the stitch with no local anesthetic and didnt make a peep. Tough guy.

This morning we are going to continue with his feeds, and we were told we have to do a car seat trial. We have to put him in our car seat for an hour and make sure his airway stays open and his chubby little head doesnt fall forward too much to close off his airway. I feel like we are getting closer and closer to coming home. We have to get the chest tube out in order for that to be a possibilty, so hopefully just a few more days!! Hes doing great!

Jake wanted me to add that we can see the helicopter pad from our room. :)