Remembering..

Six years ago, two days after open heart surgery #2, Elijah was getting love from this amazing nurse! She had also cared for him after his first heart surgery when he was 3 months old. She is one of the INCREDIBLE ones. We will always remember her as one of the most loving and caring nurses we've ever had.

Happy heart day!

Oh my gosh! I cannot believe I forgot to write about this earlier. I thought I would never forget this day. But I did. Today is the sixth anniversary of Elijah's second open heart surgery (the big one). It was one of the most significant days of his entire life. We are thankful for his amazing surgeon and cardiologist and of course for the plan that Jesus has for his life. We are so grateful for you, Elijah! We love you so much and Sammy we love you so much, too! We are beyond grateful for the amazing medical care E has received. Happy 6th heart day!

Cardio check

I took Elijah to his cardiology check-up today. He was nothing but cute for three-quarters of the appointment (don't ask about the other quarter of the appointment). When he was getting his echo, he said about a hundred times to the ultrasound tech, "Where's Dr. Moga??" Finally she said, "You want to see Dr. Moga, huh? Let me find him!" She made every effort to find him, but he must have been in surgery because he never showed up. She went to his office, sent him an email, sent a page... That's ok, E was pretty excited about seeing Dr. Gremmels.

We got nothing but good news. We are dropping all medication (woooo!), we don't have to go back for 4 months (woooo!) and E's next heart cath won't take place until next spring (woooo!). In addition to that, his heart function, based on the echo, looked great. His new valve looks much "happier," but his pulmonary arteries are still small. They will always be small, which is the reason why heart caths will unfortunately always be a part of his life.

I showed Dr. G Elijah's bald spot and asked for his thoughts. He thought it looked like ringworm (hmmmm), and thought that because he has so much hair (he had to dig and dig to find it) we just have not seen it until now. Hmmmm....who knows.

I have been wanting so badly to leave a voicemail message for Elijah's pulmonologist ever since surgery. He devised a "plan" for Elijah that would reduce the risk of him having croup post-extubation. This happens to be a doctor that Dan and I (and Elijah) LOVE. Honestly, he is one of the most amazing, caring individuals we have ever known. He has gone above and beyond his call of duty with our boy. His PLAN kept our boy from experiencing croup post-extubation...after open heart surgery! This is something that we didn't think was possible.

But it happened. Our Dr. K pulled through and drew up a plan that basically saved our little boy. I have felt emotional about him since surgery, and just incredibly grateful. I constantly wish I could give him a giant heartfelt squeeze. He didn't have to help us in this way, but he did.

I happen to know one of his nurses, through a sister of a friend of a friend. She gave me his pager number and I knew it was finally time to leave him a message. I thought it would be ok, but it was a bit difficult for me still. "Hi, Dr. Kurachek. This is...Meeeeeggggaaan Poooo------rrrrtaaaa calling. Uhhhhmmm.....Iiiiii am calling to just.....you know, thank you, for, you know, being so....aaaaaa-----wesome, and for caaaaaaaring so much for our son and for....sniff sniff.........devising such an ammmmaaaazzing...wah wah wah....plan for him..." It went on and on and it was a bit embarrassing. I hung up regretful, thinking he would think I was crazy.

Two days later, on my way to the dropzone with my boys, my phone rang.
"Hello?"
"Hi, Mrs. Porta?"
"Uhhh, yes?"
"Hi, this is Dr. Kurachek!"
"Ohhhh. Hi, Dr. Kuracheck!"
He told me that he was grateful for my heartfelt message, but mostly he was calling to make sure I was ok. :) It was a good conversation. He counseled me through some feelings (he is an intensivist, as well as being a pulmonologist, so he sees it all). It was nice to chat with him.
I told him at the end, "Dr. K, we love you and Dr. Gremmels and Dr. Judy and Dr. Moga! Not only are you amazing doctors, you are all amazing human beings." He said, "Wow! Can I put that on my resume? That's the nicest thing that's ever been said about me!"

It's true. Elijah has been blessed in so many ways...one of them being that he has THE BEST doctors looking out for him.

I will sleep peacefully tonight. More about that later....it has been a peaceful, healing week.

Battle wounds

I am not the mom who comes home from the hospital and attempts to immediately wash off all of the "hospital dirt." Removing stickers and tape and anything sticky from Elijah's body is traumatic for him, so I tend to just let it be. He has been through enough. The stickiness will come off eventually.

Elijah found his toy stethoscope this morning and had it in his ears for most of the morning. I asked him, "Hey Elijah, what do you want to be when you grow up?" He has never had an answer to this question before, but today he said, "DR. GWEMMELS!" :)



It was a beautiful day today. Totally deliciously beautiful. Elijah went back and forth between wanting to be outside and wanting to be on the couch. He has done an amazingly good job of limiting himself and listening to his body. There were times when he would sit his bottom on the couch and ask for a movie and chill for an hour or two. And there were other times when he was all over the place, playing like a crazy man. A couple times today I looked at Dan and said, "Really? He had heart surgery less than a week ago??"



Sammy has definitely been affected by our broken schedule for the past week. He is extra clingy and not being his usual happy self. Every time I hold him tight to my chest, he sucks his little thumb for comfort. That's something he usually only does at bedtime. Hopefully in the next days/weeks he will realize that his family isn't going anywhere! We love our chubby Sammy so much.



We are in the throes of surgery aftermath. Unless you have experienced it, you might think it sounds crazy. We should feel nothing but relief, right? After surgery #1, I was blown away by the emotion that followed hospital recovery. After surgery #2, I had forgotten about that emotion until it happened again and then I quickly remembered. This time, I knew it was coming, but that hasn't made it any easier. Every time I look at Elijah I thank God a thousand times. I have been crying a lot in the past few days. Happy tears, tears of relief, tears of sadness, tears of total joy and painful tears plague me all at once and all the time. This is an indescribable experience.



I saw on the doctor's discharge orders yesterday that Elijah is not supposed to return to daycare for four weeks. Four weeks?! My first reaction was not a positive one, but then I thought of the reasons for having such rules. And those reasons were confirmed today when my friend Jess graciously came to our house to bring us lunch. She almost picked Elijah up under the arms, so I had to quickly share his limitations. That just shows that it is instinct to want to pick up a cute little boy. Dan and I have to be Elijah's constant advocates right now. He has to be in the best care possible...with us! So, we will figure something out.



Elijah is doing great. He is so funny and full of energy. He is constantly making us laugh. Every night before bed I say prayers with him and sing songs. Here's an example of one of his recent prayers: "Thank you, Jesus, for this day. Thank you for Mommy, Daddy, Elijah and Sammy. Thank you for Gwammie and Gwamps and Gwamma and Gwampa. Thank you for cars to drive and food to eat and toys to share. Thank you for comfy beds and for our new tway-wer and our new wittle kitchen. Thank you for drawers and doors. Amen. OH! And thank you for curtains. Amen. OHHH! And thank you for pictures! AMEN!"



That's all I have for now. We continue to heal as a family in so many ways. Thank you so much for the prayers and support. We couldn't have gotten through all of this without you all!

So long, hossa-pi-doh!

We are home. I'm in disbelief. The blood pressure discrepancy (the difference between pressures on E's arms and legs) has me feeling slightly uneasy, but we talked to a cardiologist before we left. She said the only reading that truly matters is the one from the arms. Because I'm crazy, I think I'll call Dr. G when he's back in town (he left us to go to Brazil) later this week to get his thoughts.

I have some thoughts brewing in my head, as always after a big surgery, but for now I will let the following photos from the past few days speak for themselves. Thank you, everyone, for the amazing support, whether through prayer or help with food or by visiting or writing or calling or reading this blog. THANK YOU. We feel incredibly loved and we are feeling so very grateful right now for all of you.

5-day hospital stay?!

I arrived at the hospital this morning only to learn that....WE ARE GOING HOME! Apparently Elijah's blood pressure, when taken on his right arm, reads way differently than when taken on his legs. Leg pressure reads between 120-130. Arm pressure reads between 90-100, which is an ideal BP for him. His neck line has already been removed and he is totally free of wires and tubes! I still want to talk to the doctor about the discrepancy between the arm and leg pressures, but it sounds like they are comfortable with it.

Elijah is in great spirits, as usual. He's watching Toy Story 3 and playing with his toy hospital (that happens to have a plastic Dr. Moga and Dr. Gremmels) while we wait to hear when discharge will occur.

He will go home on lasix (fluid retention) and enalapril (blood pressure) and reevaluate both meds next week when we go in to see Dr. G.

I'm still in a bit of disbelief, and haven't processed things yet. Hopefully our next update will be from HOME!

Bittersweet

I'm hanging out at home tonight with Sammy while Dan spends the night with Elijah in the hospital. It was really difficult for me to leave the hospital this afternoon. I have never spent a night away from Elijah while he has been in the hospital. One thing made it easier, though. Sam! My cute, chubby Sam. When I picked him up from daycare, he grabbed onto my shirt and wouldn't let go. I think he was pretty happy to see me, and the feelings were most definitely mutual. I can see that this ordeal is affecting him a little bit, too. He isn't eating well during the day (when he is away from us), and he is exhausted. I could see it in his eyes right away. He was asleep by 6:00 tonight.

Elijah's blood pressure is definitely a worry at this point, and it is the only reason he is still in the hospital. He is now on two blood pressure meds, one IV and one oral, and he is just barely keeping his BP where the doctors want it to be. The goal is to wean him from the IV med, but he is still on the max dose so we need some answered prayers. Dan and I are extremely grateful for how well E's recovery has gone so far, so we can't really complain about this hiccup. Being totally sleep-deprived and drained, though, makes every little issue seem insurmountable.

If you saw Elijah right now, you would NEVER know he just had open heart surgery or that he is dealing with high blood pressure. He is full of energy and appears to be feeling like a million bucks. Anyone who steps into his room will most certainly get their ears talked off and will leaving giggling and smiling.

I'm not allowing myself to feel much tonight. I assumed I would have my usual post-hospital breakdown upon arriving home, but apparently I'm not ready for that yet.

Here is an exciting thing! Elijah got to take his first post-surgery walk last night through the hospital! Dan's mom snapped these cute photos..





I'm so proud of my amazing boy! BOTH of my amazing boys. I will be one happy mama to have all of my boys at home together again.

Thanks so much for the prayers! Please continue to pray for that darn blood pressure to cooperate.

OHS #3 day #5

The Dr. M team just stopped in. Wow, there were a lot of them today! The only issue that remains is Elijah's high blood pressure. He is going to have to start another bp medication because Dr. M isn't comfortable with where it's at. His words: "And hopefully he doesn't have to be on it long-term." The possibility of this is a bummer, as E has never had to be on medication long-term. Praying hard for things to work themselves out.

We had a good night, considering. I've found that having an early riser in the hospital is a tiring combination. Elijah was up bright and early (4 AM!) talking and ready to play. Many people have commented on how funny and talkative he is so early in the morning. Yep, that's our boy!

It's 9:20 and Elijah has had 2 neck dressing changes, 1 echo, 1 unnecessary blood draw, 4 glasses of juice, 1 glass of water, 1 bagel, 2 crackers and we are on our 5th movie. Is it time for bed yet??

OHS #3 day #4

Day 4 is done and it was overall a good one. We got rid of Elijah's oxygen (yay!) and the other line in his hand. The only things left to ditch are a handful of meds, his high blood pressure and his neck line. We kept his diet bland for the last half of the day and he didn't throw up after noon. We'll take it slow with the eating again tomorrow. If we can get his blood pressure under control, I can see us leaving here very soon. Every hour when his BP is taken, I stare at the monitor intently, think of home and pray!

Elijah was hilarious today. He had so many people laughing. He's such a little character. His nurse this morning asked me if he was having a reaction to a medication. Uhh, nope! He really talks this much! :)

Dan is home with Sammy tonight. It's hard for me to think about. I miss him so much. I know we have had pretty much the best case scenario for this surgery and recovery, but I still just want our family to be all together again. I feel incomplete when we all are not together. I miss that chubby little boy!

Elijah is drifting off to sleep next to me. I'm going to read for a bit and then head to bed myself on this delightful thing they call a bed.

Hourly blood pressure just taken...109/52. Still too high. Praying for better numbers tomorrow.

A visit from Sammy

I haven't said much about what Sammy has been up to for the past few days. Dan's mom has been gracious enough to watch him over the weekend. I miss him terribly. I keep reminding myself that I'm away from him for a very good reason, but it's still hard. I can't wait to have everyone back together in one spot...home!



Grandma and Sam stopped by for a quick visit yesterday. It was so good to see him. I hugged his chubbiness tightly until it was time for him to leave. I can't wait to see him again.



Elijah treated Sammy about like he usually does...he wasn't overly kind. And Sam, like usual, was curious about everything his brother was up to.



I love this sequence of photos where Sam goes in for Elijah's medical ID bracelet.



E was pretty patient for the first little while.



Sammy!



Elijah's exact words were, "SAMMY, NO SWOBBERING! NO EATING MINE BWACEWET!!"



Aahhh, brotherly love. I know that deep down, Elijah was happy to get a visit from his little bro.

Elijah is doing wonderfully tonight. He's napping right now. They've lowered his blood pressure meds so his BP has gone up a bit again. Pray for that to stay low! Everything else is looking great.

More tomorrow....thank you for checking in on us!

Great progress

On top of having his arterial line (accidentally but thankfully) removed, Elijah also had his chest tubes and catheter removed today! He has even already gone potty a few times, which is awesome since he's had a hard time with that in the past. We got him out of bed and he took a few steps to the chair to sit up for a bit and watch a movie. I just can't believe how well he is doing.



Dr. Moga did mention E's slightly higher than desired blood pressure, so we've been keeping an eye on that today. Just in the past hour, it has started to come down a bit. His oxygen sats are getting better, as well. All steps in the right direction!



He is in MUCH better spirits today, but still remains Sassy Elijah. He's pretty content chilling in his bed and watching movies. Dan just got back from a nap, so I might go take a turn, as sleep has not exactly been plentiful. Thanks for checking in!

OHS #3 day #3

Elijah had another good night, and is much more himself today after being weaned off some drugs. His arterial line had to be removed at midnight (quite the ordeal) because it was bent in half (??), and ever since then his blood pressure has been higher than they want it. He is still wearing the nasal cannula for oxygen because his O2 sats are in the low 90s. His heart rate is a little higher than it has been, too. Dr. M and crew will be making rounds shortly, so I'm sure we will hear their thoughts on everything soon. We heard yesterday that his chest tubes might be removed today, which would be great!

Dan and I took turns sleeping in our very nice RMH room last night, but we are still exhausted. Starting tonight we will take turns going home and being with Sammy. Hopefully sleeping in our own bed every other night will help a bit.

We are thankful that our friends and families have been taking such good care of us! Thanks, everyone, for keeping our monkey in your prayers, and for loving all of us.

More later, once we hear from Dr. M..

OHS #3 day #2

So long to the Sweet Elijah. Oh my, has he been a crabby guy today. Not that I blame him one bit. Lots of talking back, asking to go home repeatedly, telling anyone who says anything at all, "DON'T SAY IT!" and swiping at Mommy. He has been fighting sleep all day and just finally fell asleep. I sent Dan down to our room at the Ronald McDonald house on the floor below us so he could nap, too. So I have time to upload photos!!

On our way to the hospital yesterday..



He wasn't happy about having to stop playing before surgery..



Immediately following surgery. Honestly, this is the best he has ever looked after surgery before. I think he looked absolutely wonderful! You know, considering what he'd been through.



Getting some Mama love.



After his successful and drama-free extubation! He still has the canula in his nose, providing him with oxygen as he recuperates.



Surrounded by his animal friends (all of these plus a few sleep with him in his bed at home every night).



I think his animals help to make him feel secure.



I took this photo about 20 minutes ago. He is already sitting up in bed, eating graham crackers and drinking juice! We are so excited about his amazing recovery so far.