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. :) 

My Superhero

Where to begin, Logan has been doing great, as usual. He was moved into his privte room, which is really nice! They took out his arterial line in his leg because they no longer needed daily blood draws. Before he was moved he was on 100% oxygen at a flow rate of 4. He has been weaning for a few days and is now down to 50% at a flow of 1 and he is maintaining his oxygen levels. They want his o2 saturation levels to be between 75-85, he will never have 100% o2 saturation like most of us do, but thats to be expected. They are happy with his numbers.

Once we were moved we were basically given free reigh over him. We can pick him up whenever we want, we can change his diapers, we can dress him. It is just amazing. It is starting to feel normal, besides the environment. I have been taking full advantage of these opportunities. Yesterday we had a nurse whom I hadnt met before, and I was holding Logan and she asked if I wanted to do skin to skin, which I had never done, and I was a little hesitant, but she insisted. So, we did. I took my top off and we stripped him down. She said, if he looks like he wants to breastfeed, you can try. I was blown away, I was like.... WHAT?! So, we gave it a shot. At first he just kept getting frustrated, he would latch and then let go. Eventually we gave up and just let him lay on me, the nurse left. Logan began rooting again so I gave it another shot, and he latched!! He breastfed for about a minute, maybe 2. It wasnt long, but it was incredible. I didnt even think to ask about breastfeeding him, it never even crossed my mind. I am so thankful for that nurse.

He still has an NG tube, and as of this morning they have stopped feeds for 8 hours, and we are to offer him food in a bottle or by breast, to see how he does. Theyre hope is that by stopping feeds he will feel the sensation of emptiness, and want to eat in a sitting. They are going to offer him a bottle at nighttime, but at during those hours, whatever he doesnt eat, will be put in his NG tube.

They took him off of his EKG monitor, they are no longer checking his heart rate or respirations. The only thing on the monitor is his o2 saturation level. He still has his chest tube for drainage. We were told his output has to be below 20 for 24 hours before it will come out and it is typically one of the last things to come out. The doctor said he is at 30 right now, so itll be a few more days.

I couldnt be happier, he is amazing. I am so proud of how strong he is. All of these heart babies are incredible. Theyre super heros!

Jake and Corbin are coming up today. Itll be nice now that we are in a private room, Corbin wont have AS much to get into. My plan is to stay here as long as possible with Corbin before we have to go home. He can only handle being here for a few days, but we will see what happens. Its not easy to keep him content, especially in a hospital setting, and its really no place for him to be hanging out in.

Thats about all I have for now. We are going to work on feeding and wean off the oxygen, once thats done and they are happy, I cant see why we couldnt go home. I am starting to see the light at the end of the tunnel.

Reunited

It feels so good to be back up here with Logan. Oh, and Jake too. ;)

Logan is doing well. He's made a lot of progress while I was away. When I left he was on 10 different fluids and medications and drips, now, he has 2. He is no longer on any heart medication and the fluid he is getting is just supplementing for his electrolytes and calories. He has the NG tube still because he doesn't tolerate a bottle yet. He has had trouble with his respirations, he breathes too fast, especially when he's upset, but it is too hard for him to suck, swallow and breathe all at the same time and he gets frustrated which only makes things worse. So we are sticking to the NG tube until they can figure out how to get his breathing under control.

Some of the reason for his rapid breathing is that part of his upper right lobe of his lung is collapsed. (This isn't new, I must have just forgotten to add it in my other posts) they do what is called a chest BT, where they take a small pocket mask, one you'd use to put over the baby's mouth and nose to create a seal for a bag to push oxygen, and they cup it in their hand and basicially, for lack of a better term, beat his chest and back. This helps to break up any mucus and hopefully open up the alveoli. They have been doing this for about a week now and he is slowly getting better.

Not much has changed since I got here yesterday. He's kind of at a stand still but they took out the IV line that was in his neck as they weren't using it anymore and didn't need it. He looks so much more comfortable. They are talking about taking the arterial line out of his leg and just replacing it with what they call a PICC line. They will use the PICC line to draw blood instead of having to poke him everytime. He also has an IV in his arm incase they need to give him anything, it's mainly just there for precaution. Once he gets the arterial line out of his leg he can wear clothes!! I brought a few outfits for him and I can't wait for him to try them on.

He was upgraded from the small NICU incubator bed to a fancy little crib. He likes it.

His little voice is coarse and raspy when he tries to cry or scream because of the tube he had. Poor buddy. All in all we are very happy with his progress and even though it has slowed down a bit it is okay. We are on Logan time and he can take whatever he needs. He has blown us away with how great he's done thus far and if he wants to take a break so be it.

We will wait.

I had to say goodbye to Jake today as he needed to go home and be with Corbin. It's hard to say goodbye and be all alone, but in a few months we will look back and it will just be a memory.

Great strides

As you know I am home with Corbin. He is doing great being back home. I'm managing but it's hard to be away. Logan is doing great!  They removed his wound vacuum early because they say it was healed up just fine. I am ecstatic but I saw a picture that I will share and I am worried about the top of his incision being very far apart still and resulting in a large scar. (If a scar is all I'm worried about right now, we're doing good.) He is off 2 of the major medications for his heart and he is managing just fine without them. He is weaned down to 40% on oxygen and they have been weaning his nitric over the last two days. He's down to 4% now. Going from 5% to 0 is the trickiest they say. So they lower it 1% every hour. But once he is off the nitric and keeping his o2 saturation up on his own he can be taken off the ventilator. They are shooting for Sunday. We are very excited. They put in a nasal-gastric (ng) tube so he can start eating. They give him small amounts of my breastmilk every 3 hours. Big big strides for my little guy and he is doing better than I ever thought possible. I thought for sure we'd have a set back or two already but he's too tough. My updates aren't as specific because I am not there getting all the information myself and I have to rely on my wonderful husband to keep me updated. What I know, you know. If anything new or exciting happens, you'll hear about it. Thank you all again for your t&p, well wishes and sharing our story.

Adjusting

We are all still adjusting to our new lives as heart parents. Logan has been doing great! He has his ups and downs throughout the day, but he somehow always comes out ahead of the game. He has had some issues with high blood pressure (Hypertension) and the nurses are unsure of why his numbers spike randomly throughout the day, but so far he has been able to calm himself down without any intervention. They are going to try to wean him off of the breathing tube, but in order to do that they first have to wean him down to 40% oxygen air and then wean him completely off the nitrate gas. Nitrate gas helps bind oxygen to his blood cells, so far he has needed a little boost of nitrate in order to keep his O2 saturation's up where they should be.We are hoping that he will be off the breathing tube within the next few days. That is the only thing holding us back from holding him. Once the tube is gone, we can hold him as much as we'd like. I cannot wait to get him back in my arms.  He is a sweaty little boy, just like his big brother. The nurses all comment on how his head will get all sweaty but his body temperature is normal. I have reassured them that I just make sweaty boys apparently.

I came back home today with Corbin. It was probably the second/third hardest thing I have done within the last month.(Handing my child over to a surgeon and birth) I thought it would be easy, but I was a mess. We are still trying to find a balance between both of our children. Corbin did great adjusting to being in a new place at the Ronald McDonald house, but he is so busy, and there wasn't as much for him to do in Rochester as we initially thought. After a few days, he was getting sick of the same old thing. He would whine and cry when we would take him to our room in the Ronald McDonald house. It was hard for Jake and I to divide our time with Logan and Corbin. Only having one vehicle with us made it that much harder and a hospital isn't necessarily a place for a toddler to hang out in for hours at a time. So we decided that we needed to at least try something different and see if it works better. Now I can focus on Corbin at home and Jake can dedicate his time to Logan. We will switch in a few days. It's hard to be away, harder than I ever thought, but Corbin needs us/me too. We both agree that he was ready to come home.

Tomorrow is a new day, Logan is doing great. We can only take it day by day. We are on his time. There will be set backs, we don't know what they will be yet, but they will happen. We can only hope they aren't serious. If they are, we will deal with it and we will help him fight. He has a lot of supporters, and again, we can't thank you all enough for your thoughts and prayers. He's a strong boy and we are all fighting for him.

Closed up

Logan had his chest closure procedure done today. He did great. The doctors are all impressed at how well he is tolerating everything. And so are we. He has a wound vacuum over his incision because the skin was too tight to completely close it, the wound vacuum will help it heal and close, but he will need it on for a week or two depending on how quickly he heals. His oxygen levels are in the 80s, which is great! The next step is to wean him off of the breathing machine. He is off the paralytic so we are able to see him move around and he can open his eyes. They are a little wobbly because of the pain medicine but we know he knows we are there. He's got big brown eyes just like big brother and daddy.

We are so happy that this is over with and now we can move on. Every step forward he makes from this point on is a step closer to going home. He will be 2 weeks tomorrow. It's been the longest two weeks of my life. Corbin being here certainly makes the days go by fast, but we are starting to find a rhythm  that works for us all. It's hard, and sometimes stressful, but we are figuring it out. Speaking of Corbin, he finally met his little brother, his future best friend. He didn't really care much, he was more interested in all of the machines and monitors. It was fun though. Soon enough he will figure it out.

So, as of now all is well, he is doing as the doctors expect and isn't causing any trouble. I will update when we hit a new milestone. Thank you all again for all of the support!

Post-op

Logan has been doing great. He is tolerating everything really well. They took him off of his paralytic yesterday to give his brain a little workout and do a neurological check. He is still sedated but he is able to move. He doesn't move much but he moves his legs and arches his back and tries to move his head, but his breathing tube keeps it to one side. He opens his eyes but the sedation makes his eyes roll around. The doctors are pleased with everything. Besides the balancing of all of his fluids and rates, which is normal, all is well.

It's great that he is doing so good, but he's doing all of this with his chest open. The plans are to close his chest tomorrow afternoon and then we start back at square one. We have to go through everything all over again, finding a new balance, he has to adjust to the new pressure of his chest being closed. So as nice as it is that he is doing well, tomorrow will be a reset. Although we are starting all over again at least with his chest closed we know any progress made will be one step closer to going home.

We became members of the Mended Little Hearts organization upon having a baby with CHD. It is a great organization. They hosted and event last night at the rochester zoo. After the zoo was closed it was reopened to MLH members. Anyone that had a child with CHD was welcome to go at no cost. It was amazing, such a nice thing they do for families and children. We got to see all of the animals and had a great dinner. We also got to connect with other families that have gone through or are going through the same struggles. It was nice. It was nice to be out of the hospital, and did I mention our little buddy came with us to stay? He loved the zoo and all the animals, mostly the ducks and birds, because those are so rare...

This weekend has been boring. Tomorrow is a new day, and a new beginning in our journey. The days following tomorrow will be a test of his strength and how well he will tolerate the new change. I hope how well he is doing now is a prerequisite to how well he will do after tomorrow. Fingers are crossed.