Elijah and Family Update

In this case, I would say that no news is good news. I have been posting less and less in part because there just aren't that many updates anymore. And for that I am very grateful. Elijah is doing well. We had an appointment with his cardiologist on Monday and this was the first time in his life that we didn't need to have an echo. He had an xray and an EKG and obviously he was examined, and through it all he was a trooper. He is now satting between 97 and 98. His lungs look clear and his pulse is good. We were able to wean down on the lasix so that he only takes it once a day. We are hoping to be able to discontinue the Warfarin by the first of the year. He has put on some weight and may actually get onto the growth chart in the next couple of months. All in all he is making good progress.

Noah is also doing well. He likes his school and he has adapted to being without his brother. He loves art and is now taking swim lessons and art classes. It is so much fun to sit back and watch him. He is no longer my baby, he is a boy. I took him to a movie night at his new school and he walked in with such confidence that I was surprised. He talked to the other kids and navigated the place like he owned it. I only wish I had had that kind of confidence when I was 5 years old. We are very blessed to have two such amazing little boys.

Halloween Fun!

                                                                     Pumpkin Patch!

                                                                     Trick or Treat!

Elijah Update

It has been about 3 months since Elijah's Fontan. If you had seen him then, you would not even recognize him now. He is one happy dude. Although still on some pretty heavy meds, he is active and thriving. At his last doctor's appointment his pulse ox was 98% and he even had a cold. This is amazing for him. He is gaining a little weight and eating a ton. We have been swimming, gone to Disneyland, and rode the rides at Knotts Berry Farm. We are continuing to wean his meds and we hope to be off of most of them in the next three months. I have no doubt that we will continue to have our ups and downs when it comes to Elijah's health, but right we are in a great spot and we couldn't be happier.

Kindergarten

Noah is now in kindergarten!!! Where or where has the time gone? He is no longer a baby... no longer a toddler... he is now a boy. Wow.

Cardio Update

First let me say that Elijah is doing really, really well. Dr. Sklansky is watching him very closely but so far so good. He went for another cardio work up on Friday. His lungs continue to look clear even after going back to a full fat diet and weaning the Sildenafil. He has been getting bi-weekly xrays along with blood tests to measure his INR levels. He is on Warfarin, a very strong blood thinner, that must be monitored regularly. The plan at this point is to slowly continue to wean the medications over the next 6 months. He is still on three very potent diuretics. As of Friday, we are very, very slowing starting to wean one. Elijah has lost a substantial amount of weight and now wears 12-18 month clothing. We are trying to fatten him up and we continue to try to get him stronger.

As for his spirit, he has returned to the happy (and sometimes very demanding) three year old that we all know. Noah is much happier now that he has his brother back.  The two of them are the best of friends and he worst of enemies all at the same time. But no matter what, they want to be together.

I returned to work two weeks ago and Elijah went back to preschool. Noah attended a few days with him. Elijah is struggling with the transition to going to school without Noah. Noah will start kinder on Tuesday. Dion and I spent a large part of yesterday getting all of his school supplies and purchasing uniform shirts. I can't believe that my baby is going to "real" school. He is no longer a baby. I am so proud of him and at the same time, I would like time to stand still. It is moving way to fast. All of that to say, I am so very grateful to be here, in this moment, with my little family in tact. And not just in tact, but happy and thriving.

San Diego

Although we didn't have much of a summer, we decided to make the most of what we had! 

Having fun in Old Town. 

Legoland Fun

Making friends at the San Diego Zoo. 

Enjoying the Orange County Fair. 

Elijah got to feed a baby cow. 

Good old fashion fun in the pool. 

Finally Summer Fun!!!!

Brunch in Hermosa Beach. Cheers!

Checking out the ocean sites!

Love Auntie Lyndsey!

 

Travel Town never gets boring!

Riding the train!

Watching Noah at his swim lessons!

Cardio Follow-Up

Today was a good day. I have been looking forward to and yet dreading today. We had our follow-up appointment with Dr. Sklansky. I am all too familiar with the possibility of being readmitted. I know that one bad x-ray and we will be back at CHLA. But today was not that day. Today Elijah's x-ray was "excellent." Today Elijah was satting at 97 and he was pink. His echo results were positive and we are beginning to very, very slowly wean his medications. This will be a very long process, and it will probably take 6 months or so to complete. But it is a step in the right direction. 

Elijah has been so traumatized from the long hospital stay that I thought today's appointment would be horrible. I was completely wrong. Elijah handled all of the tests and x-rays like a pro. He never cried and he never fusssed. We will go back in two weeks to repeat today's tests. If that goes well, we will start to introduce Elijah to a more balanced diet. He has been steadily dropping weight and I don't think he is even on the growth chart anymore. He had been barely on the chart, but following his own growth curve. This is no longer the case. It is my hope that he will do well returning to his previously fatty diet and we will be able to put some weight on. He is so, so skinny. He is back into 18month clothing. Everything else just falls off of his little body.

As for his attitude and affect, that too has steadily improved. He has been playing with his brother and he has even had fits of giggles. Now that is a great sound. Baby giggles can make anyone happy. His energy level is still a little low, but he isn't eating a ton so that is to be expected. He is sleeping better, although I think we have only had one or two nights where he actually slept through the night. Things aren't perfect, but they are better. I have to remind myself that we are in a period of transition. Once we get past these hurdles, he will be stronger and healthier.

Adjustments

First let me say that I am so very grateful to be home. I am grateful for the diligent care that we received at CHLA. I am grateful for my husband and family and the incredible support that we got while at the hospital. I am grateful for all of the prayers and best wishes from everyone around the country. I am eternally grateful.

Elijah came home on Saturday. I think I expected him to adjust quickly and for things at home to normalize. That has not been the case. Elijah is traumatized. He won't allow anyone to look at his chest, let alone touch him. He wants to spend his entire day laying on top of either Dion or myself. He doesn't want to play or laugh. Noah is lost. Noah thought that once Elijah came home everything would go back to the way it was and Noah would have his playmate back. That has not been the case. Elijah has not wanted to play and my poor big boy has felt rejected. I try to explain to Noah that Elijah is still not quite feeling well and that he will play with Noah soon, but I don't think that is enough.

To add to that, Elijah is so incredibly weak. He sits on the floor and can't get up by himself. He is unable to climb on the couch by himself and he is very wobbly. I have to remind myself that he will get stronger. Elijah has spent almost a month in the hospital, two weeks of which he spent confined to a bed. It wasn't until he was fully stable, almost two weeks into our hospital stay, that he took his first walk. He has lost weight and continues to lose weight as he is restricted to a low fat/non fat diet. The poor kid doesn't even sleep peacefully. He wakes up continuously throughout the night.

I suppose this is all normal, but it wasn't what I expected. I expected a period of adjustment, but this is severe. My little guy has suffered more than any child should. And he is traumatized because of it. So again I remind myself that I am grateful, so very, very grateful. But I am also a little bit sad. I little sad for the innocence lost and the pain endured by such a little, sweet boy.

Got our walking papers!

After a doctor and a NP looked at Elijah's x-ray it was determined that we could go home! Elijah was discharged!

Day 22

Today's x-ray looked good again even after Elijah drank all he wanted. This is great news. They decided to adjust his diuretics so that he takes larger doses three times a day instead of smaller doses four times a day. If he handles this well, and his x-ray looks good in the morning, they are talking about discharging us tomorrow. I am afraid to get my hopes up so I will say that I am cautiously optimistic.

Day 21

Today was quite the day. Elijah's x-ray looked good and it appears that the effusion has once again disappeared. The team lifted his fluid limit and he was able to drink as much of whatever he wanted. He was so, so happy. The plan was to check his x-ray in the morning and if everything continued to look good, they would pull his chest tube out tomorrow and wean more diuretics. However, when the surgical team rounded this afternoon, they decided that Elijah was ready to get rid of the chest tube tonight! The chest tube that has been in him for three freaking weeks was going to come out.

Let me tell you that holding your son down as he gets a chest tube pulled out of his chest is not something I would wish on my worst enemy. But I would not want to be anywhere else. After it was done and the nurse finished placing the bandage, I was able to hold Elijah chest to chest for the first time in three weeks. It was amazing. I was able to hold him like babies are meant to be held. He curled up into my chest as if he belonged there. It was perfect.

Day 20

During rounds today, the NPs told Dion that the x-ray remained the same as yesterday. This is a good thing. His chest tubes only drained 10cc last night and we were concerned that he was retaining fluid in his lungs again.  It looks like his lungs handled the reduction in diuretics well. They decided to try and change his other diuretic to oral and see how he reacts.  So far we are still in a "wait and see" mode. He needs to continue to be weaned off of the IV meds. Once he has done this successfully, they will lift the fluid restriction and see how his body reacts. If his lungs handle that well, then they will pull his chest tube.

Day 19

Yesterday was a good day. Elijah's chest tubes slowed down. The doctors reported that his x-ray looked a lot better and it looks as though the effusion in his left lung is gone. They believe that this is what explains the increased output from yesterday. The effusion finally drained and therefore the numbers went up. They decided to adjust his diuretics and start the weaning process. This makes me very, very nervous. The last time they decreased his diuretics, although only by a little bit, his lungs did not respond well and he ended up with the effusion and fluid on his right lung. I am praying that his body is ready this time and can handle the changes in medications. Ultimately, the chest tube won't come out and we can't go home until he can be weaned.

During surgical rounds they decided to change his chest tube "suction". Instead of pulling the fluid from his lung, it is now set up to passively allow fluid to flow into the chambers. They told us that sometimes the pulling action of the chest tube will actually encourage drainage. Hopefully, Elijah's lungs will respond well and they will be able to handle the fluid on their own, without the chest tube. I will update later today on the x-ray and the progress of the output.

On another note, please keep Noah in your thoughts and prayers. He has been such a trooper with all of this but it is really beginning to get to him. Last night he had a melt down at 2am crying that he had a nightmare. He misses his brother. They have slept in the same room for years and Noah is having a hard time without him.

Day 18

So today I cried. Yep. I cried big bucket tears, or as my girlfriend would say, I had the ugly cry face. They retested Elijah's chest output and it came back positive for fat, or chylous.  To top that off, they have seen the amount increase, not decrease. Now we are questioning their numbers because the tube had been clogged again, but nevertheless, things are not going our way. This is not news that we wanted to hear. The surgical team agreed to give him 24 hours before they make a change. However, if they do make a change it will not be a pleasant one. They will take away all food and drink for the next 3-7 days. If this does not work to fix the issue, then he will need another surgery.

On the bright side, I was able to see a glimpse of my little Elijah this evening. He perked up and was talking to everyone and asking to color. Elijah hasn't asked to do anything since we have been here. We have toys in the room, but he hasn't wanted to play with anything. We took him to the playroom and he didn't want to play, he only wanted to go back to the room. He is depressed and sad. Noah was able to get Elijah to paint with him and he managed to cheer him up for a few minutes this afternoon. But this evening I saw him smile and play. It breaks my heart to think of what we might have to put him through.

Day 17

Today was much the same with a little bright spot. The surgeon came in this morning and said that Elijah's x-ray looked a little better. It looks as though the bottom part of the lung has been able to get rid of the excess fluid, although he still has fluid on the top portion. She suctioned his tube again and was only able to get a little fluid out. She was a bit perplexed as to why the bottom would come out, but the top wouldn't. She wants to leave the tube in for a few more days in hope that with some movement, we will be able to get that fluid out. She is also going to keep him on the high dose of diuretics to help continue to "dry" him out. The hope is that if we can get him completely dry, we will then be able to wean some of the diuretics and his body won't produce extra fluid. He is currently on IV diuretics and he needs to be able to wean down to oral.

Elijah is satting better and his heart rate has decreased from last night. The night nurse was awesome and was able to cluster all of his care last night and he finally got a good night sleep. It really showed in his attitude today. We have taken two really good walks around the unit and he has spent time sitting in the chair.

Day 16

Before I get into the roller coaster that is Elijah's recovery, I want to talk about Noah. Last night Noah "graduated" from preschool. I know that graduating from preschool is not a huge accomplishment. I know that the huge ceremony that we attended was overkill. But I also know that it came just in time for Noah. I know that Noah needed a moment to shine. He needed a moment when all of his parents' attention was on him and him only. He needed to be our sole focus, if even just for an hour. He needed to know that he was still a priority to his parents during all of the chaos around him.  Noah had to recite a poem, using a mic, during the ceremony. I am so very proud of the little boy Noah has become. A huge thanks to our friends and family who covered for us at the hospital in order to allow Noah to have his moment.

Now onto the not to fun stuff. Yesterday things were looking up for our little guy. His right lung looked the best it had looked in a long time and he was breathing easy. There was even a little talk of being able to pull his remaining tube in the next couple of days. However, today looked very different. This morning's x-ray showed fluid in his right lung and an effusion in his left. To top this off, his remaining chest tube had clogged again. A surgeon came in and she was able to unclog the tube, but not much came out. At this point, they think that the effusion is in a pocket of the lung that the current chest tube can't access. It looks like the current tube has done it's job. However, that still leaves the effusion in place. The plan at this point is to increase his diuretics and watch and see. It is possible that they will be able to "dry" him out enough to take care of the extra fluid. However, his sats have not improved today and he is panting instead of breathing. All of this points to extra fluid on his lungs. He has not wanted to eat and he has been miserable.

Please pray that the diuretics will do their job and dry out his lungs. He needs a break. And pray for his spirit. He is so sad.

Day 14- Chest Tube Drama

And the chest tube issues continue. The good news is that his output was down from 380cc the previous day to 310cc today. The bad news is that this morning the doctors discovered that Elijah's right chest tube had moved even more and that there was now an air bubble outside of his lung. This meant that the tube had to be pulled right away. His output from that tube was 120cc during the previous 24 hours. They don't like to pull out the tubes until the output is closer to 50cc, although they will pull them at 100cc. Elijah was so close that they decided to postpone placing another chest tube, and they increased his diuretics. They are hoping that his body will eliminate the extra fluid that is currently in his right lung.

To put Elijah through another chest tube would be horrible. The tube would have to go in a different place. His poor chest is so full of stitches and scars.

Day 14

Today marks two weeks at CHLA. Elijah is continuing to drain from his two chest tubes, although the amount has decreased. He is eating a low fat diet and and his fluids have been restricted. He gets daily x-rays and more meds than I care to count. His attitude is starting to improve. Today is the third day that we have been able to get up and walk. He was almost running today while walking with his brother. He spent an hour in the playroom before he tired. Overall, we are making the best of a long hospital stay.

I think that as long as his chest tube output continues to lessen, they will allow us to continue as planned. Unfortunately, Elijah pulled out one of his chest tubes by a couple of centimeters. This may or may not be a big deal, but it is a concern and may put us on more of a timeline. He is having a terrible time sleeping. It seems that the pain and aggravation catch up to him at night and he cries, tosses and turns, and moans for most of the night. I think that it was during the night that the chest tube moved. Both Dion and I have taken to spending most of our nights in his bed trying our best to comfort him.

Please continue to keep us in your thoughts and prayers.

Day 13

Today was much of the same except that today we got to visit the playroom! Noah came for his daily visit and we hooked Elijah up to a bunch of machines and off we went. The nurse stayed with us the entire time and Elijah was so, so happy. He and Noah played for about 45 minutes and then Elijah got tired. To top off all of the activity, Elijah went for two good walks. He is exhausted, but he is happier.

As for the draining chest tubes... it is trendy down, but not where it needs to be. Yesterday it was around 500 cc during a 24 hour period and today we are at around 400cc. The cardiologist came in and discussed some possibilities with us, none of which we liked. Apparently some surgeons treat prolonged draining by not allowing kids eat or drink for a week. That would be absolute torture for everyone. On top of all of that, the chest tubes stay in. I guess during surgical rounds, they discussed this as a possibility. I cannot imagine putting Elijah through that. I can only hope and pray that his output continues to slow at the current rate so as to convince the surgeons to give us more time.