Healing

Elijah, one week after OHS. Incredible!



The past week has been surreal. I still can't believe things went so smoothly with Elijah's surgery and part of me is waiting for the other shoe to drop. The amount of anxiety I experienced between mid-February and June 10th is gross. So now that surgery is done, I'm left with....what? Where does all of that anxiety go? Does it turn into something else? Does it just go away? I still feel a good deal of sadness, but I also feel relief and happiness. Hopefully with a bit of time normalcy will return.

We have gotten out of the house a tiny bit since returning home, and we have even spent some time at the dropzone (Elijah's favorite place).



Elijah is doing great. Most of the time he has crazy amounts of energy and he runs around like a wild man. He has a post-surgery check-up tomorrow with Dr. G. I'm curious to see what his blood pressure is at and if there is still a big difference between his arms and his legs.



Sammy has been great, too. He is such a good baby. He is very patient with his big brother's sassiness and unwillingness to share.



Sam has been sucking his thumb more than ever. If anything upsets him, his thumb goes into his mouth immediately. He likes to crawl into my arms and snuggle up to me while he sucks away at it. He can say "BA" for "ball," "DA" for "Dad," "MA" for "Mama" and "AH-DUH" for "all done." He is taking tiny steps on his own. He can successfully take two steps and then he will fall down and giggle.



We are slowly working at removing the sticky tape residue from all over Elijah's body. It is hard to get off! And Elijah screams any time I even look at it, so it's been a slow process. It looks like we are a family of vampires!



That's all for now! Thanks for checking in..

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.

Tummy troubles

Elijah is having a hard time keeping food down today. The doctor thinks it could be his body's way of dealing with all of the medication that has been in its system. Please pray for him to start keeping food down again!

Update

Dr. Moga and the crew stopped by for rounds just now. He was hoping that E's blood pressure would've gone down through the night, but he wasn't too concerned at all. He said that we'll just leave him on his BP medication for another day. He expects E's body to adjust and the pressures to normalize by tomorrow.

Elijah is in a very good mood and seems to be feeling fine (minus a little throw up session he had a little bit ago) while he watches "Despicable Me"...again.

Megan and I are swapping naps for the last few hours we have the sleep room. We're tired but feeling very grateful for how well things are going overall. One of us will leave this afternoon to get Sammy and be with him at home and then we'll rotate until Elijah gets to come home.

Thanks again for all the support and prayers!

Could use some prayers

Elijah is maxing out on his blood pressure meds and his pressures are still higher than desired. We need some specific prayers for low blood pressure! Thank you!!

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.

Tired but doing well

I'm typing with one hand because E needs to be holding the other at all times. Dan and I are taking turns napping on the couch-bed thing. Elijah had a really good night. All of his stats have looked great, which is amazing! He asked for juice all through the night and finally got some, along with a popsicle, this morning. Now he is asking for food. Hopefully that wish will be granted in a few hours.

Our night nurse commented on what a sweet and patient 4-year-old he was. He really was..we are so proud of our big boy.

We're waiting to see Dr. Moga this morning, and otherwise will just be hanging out and healing and resting. And hand-holding.

Thanks for all of the amazing support, everyone. You all are wonderful. xo

Answered prayers

Holding back many happy tears right now. I am in disbelief as we sit here with our extubated, non-croupy boy. NO CROUP. No croup. And extubated! I still don't believe it. The first thing he asked for? Mama. Second thing? A snack (sorry kid, not for a while yet). Third thing? To say a prayer (awwww). Fourth thing? Despicable Me. :)

He's on pain meds and in and out of sleep. He is doing great. Beyond great. The doctors are amazed and impressed.

Dan and I will sleep here in his room with him tonight. We are so thankful for all of you who check in and pray and send good thoughts and messages our way.

Done!

We just got visits from both Dr. G and Dr. M. Surgery is done, E's chest is closed and he is in the ICU. Everything went great! He now has a 16-18mm human valve, but Dr. Moga isn't certain that this will be his last open heart surgery. :( He said it could be, but most likely will not be. We should have another 5-10 years before deciding that and I will take that. 5-10 with no open heart surgeries seems absolutely heavenly.

Elijah's old bovine valve was at the very end of its life, so it is good we are here now. We even have pictures of it (gross and hard to look at, but kinda cool). The valve stretched so much to accommodate his increasing pressures that it was distorted and large. Replacement was most definitely necessary.

We should be able to see him in a little bit, although he will still be on the ventilator. Depending on how he does in the next few hours, he'll either come off the vent tonight or in the morning. I'm praying so hard for him to be well enough to to be extubated tonight because the less time the breathing tube is in his airway, the less severe his croup will be. His post-extubation croup is a concern, so please send that up as a specific prayer!

We have one hurdle behind us and now we will focus on recovery and making our brave boy as comfortable as possible. Thanks again for the prayers!

Surgery update

We just got a visit from Dr. G and everything is going fine. Dr. Moga is sewing in a human valve that is close to adult-size. If Elijah stays small, that means that this could possibly be his last open heart surgery! Did you hear what I just said??? Dr. M should finish up with the bulk of the surgery within a half hour. Chest closing should take place within an hour. We should hear back from Dr. G before then, and we'll keep you posted!

Thanks so much for the love and prayers, everyone!

Headed back to "sur-gee"

Elijah charmed everyone again this morning, and then got upset when he had to park his little fire truck and sit in my lap after getting his sleepy drugs. We had a nice chat with the anesthesiologist and the OR nurse and Dr. Moga, as well. Our boy is in good hands today. He went back to the OR at 8:00 on the dot, so now we wait for news! Dan and I have an awesome group of supporters sitting with us today as we wait, and I'm so grateful for them!

I am feeling an overwhelming sense of peace today, which I have been praying so hard for.

We appreciate the love, support and prayers so much from all of you!

Pre-op day

It's been a busy day! I'm just getting to the computer after more time at the hospital than we anticipated and an evening at Grandma's and packing at home. Elijah's pre-op went really well. He checked out great, so we are on for surgery in the morning. We will arrive at 6:30 and surgery will start at 8:00. Dr. G is guessing it will be 5 hours from "kiss to kiss." The thing that will take a significant amount of time this round is getting through the scar tissue in his chest that is there from previous surgeries.

We are hoping that an adult-sized valve will fit in his heart. If this is the case, his next valve replacement can be done via cath! Amazing! Dr. G thinks it's likely that this time he will get a pig valve.

We had a nice day together. Elijah is such a special little boy, and he was incredibly brave today. Every nurse/doctor who interacted with him gushed about his cute little character and personality. Our main nurse gave him a clipboard and a pen, so Elijah went around taking orders from everyone, asking what they would like to order for food. He'd scribble down the order and say, "Oh. Ok, that sounds great. Anyfing else? I'll be wight back wif dat."

When it came time to take blood, Dan and I made absolute sure that there was not a recurrence of the last traumatic time. The best blood-drawer in the unit was able to hit a vein in ONE POKE. Thank you thank you, GOD. Minimal tears, minimal stress.

We chatted with anesthesiology about airway concerns, so we feel like we are all on the same page about that. Overall, we feel very peaceful and comfortable with the next few days. Of course, mommy worries creep into my head and of course, I wish we didn't have to do this at all, but it will be good. We are anxious to have it behind us.

We have no shame in asking for prayers for our little boy! Please pray for protection over him and for the surgeons and doctors and nurses to be at their very best. Thank you...we will post tomorrow as soon as we know anything.