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.