The Day of Tests

After Elijah's most recent urethral surgery in June, a doctor expressed that perhaps we should check into the possibility that his spinal cord has re-tethered. Since we are still dealing with potty issues AND since he occasionally experiences leg and head pain, we all agreed that it was worth exploring. And apparently cord retethering is fairly common. We set today aside for a handful of tests and although it was only the third day of school, we felt we should get it out of the way. I completely underestimated the time and energy that the day would require of us. I thought we'd be in and out in a couple hours, but we were there for seven and it felt like more. 

Elijah was presented with nitrous oxide (no sedation, thankfully) and just about had a panic attack when "the mask" made its appearance. He thought for sure that equaled surgery and our poor boy melted down. It took all the coaxing Dan and I could muster to get that mask on his face. Once the gas did its job he calmed way down as we talked non-stop about waterparks and water slides and oceans and mountains. He had to be cathed for a few hours and for a handful of different tests that checked his bladder function. We won't get full results until we visit with Dr. R, but we gathered that things seem to be mostly fine on that front, minus the fact that he has a small bladder.

The MRI at the end of the day was a bit of a fiasco. At the last minute the nurses realized that the stents/coils in Elijah's chest (put there during heart surgeries) had not been "cleared" to be near an MRI machine. I knew everything would be fine, but appreciated that they wanted to be positive before moving forward. The MRI was done on E's spine and was intended to rule out the re-tethering. The actual test was a bit stressful for Elijah, even with ear plugs AND a very cool movie that he watched through a pair of glasses. We won't get results from any of the tests for days or even weeks. We are glad to have today behind us!

As always, this boy never stops amazing me. He walks into that place not only willingly, but with a big smile on his face and a skip in his step every single time. If I were him, someone would have to sedate me or carry me in kicking and screaming. We did A LOT of sitting around today and he was so patient and his positive attitude never wavered. We had a chunk of spare time before the MRI and at this point Dan and I were feeling so proud of how patient and brave he'd been, so we brought him to the hospital gift shop and got him Beavy the Beaver. He LOVES this guy. He sat for the rest of the time and talked to him as if the beaver were truly speaking back. "Mom, Beavy didn't understand what you said. Can you repeat it, please?"

Elijah was practically begging for bed tonight he was so tired. We are all going to sleep well! Thanks for peeking in!

Successful surgery!

Surgery went great! It was successful and actually quite painless. Elijah was SO brave about the two things he is typically anxious about: the mask and the tape. We talked to him a lot about the mask beforehand and let him choose between needle (IV) or mask. He agreed that the mask was the best option of the two. Dan went back to the OR with him and said that he had the best going-to-sleep experience yet. Normally he fights it and needs to be held down, but was much calmer this time. He also usually becomes very upset when we take the tape off his arm that is holding his IV in place. Apparently some genius invented a painless tape (WHY wasn't this invented 10 years ago?), so Elijah didn't flinch a bit when the tape came off!

Despite all of that good news, he actually was quite anxious before surgery this morning. MUCH more anxious than he ever has been before. He expressed worry so many times. He even said things like, "THEY'RE GONNA KILL ME!" and "I'M NEVER GONNA LEAVE THIS PLACE!" We did a lot of distracting with toys and playing and a service dog even stopped into snuggle with him.

Starting to get a little loopy from the Versed.. :)

Immediately upon waking up, Elijah lifted up his left arm and saw that an IV had been placed after he was sedated. He loudly said, "WHAT?!?!?!?!" We all laughed. He sure was disappointed to see that thing in his arm!

After surgery he was NOT feeling well at all. He kept feeling like he was going to throw up and was just seeming uncomfortable. Dan left to get Sammy off the bus and Elijah immediately fell asleep and HARD. If he wouldn't have been hooked up to the monitor I would have worried that he wasn't breathing. That boy slept harder than I think I've ever seen him sleep. An hour and a half later I woke him up so we could go home. He literally could barely talk or walk! I pushed him in a wheelchair to the bathroom and he was able to go without screaming (unlike last time). Yay!

We had a short evening together at home and then Elijah ASKED for bed. He started crawling into bed without his pajamas and actually got mad because bedtime was taking tooooo looooonnggggg! He had some more nausea before bed, but totally crashed again and has been sleeping like a rock.

We have some daily obligations to perform for the next six months to ensure this surgery is a complete success. Please pray for that, as I don't know it is going to be a super comfortable thing for our boy. Hopefully it won't be too big of a deal.

I missed Sammy extra today! I told him that and he asked me to come sit on the blue chair with him. As I snuggled him tightly, he said, "Mommy? You know why I asked you to snuggle? Because I heard you say that you missed me and I wanted to make you feel good." I love that boy. I love both of my boys! Super proud of both of those cuties!

I am tired and I apologize, but I'm not going to re-read through the post and make corrections tonight! Dan is leaving for a work trip in the morning, so relaxation calls! Thanks for the prayers and we would so appreciate continued prayers for minimal pain and for this ordeal to be successful. Thank you!

Surgery done!

Whew! Less than three hours later and Elijah is out of surgery! We just talked to Dr. L and for the first time ever, he told us, "Everything went great!" We've sort of gotten used to seeing the long face, followed by hard news. E's footplate appeared healthy and normal, which is a total miracle considering the state it was in a year ago. He was able to place a total ossicular replacement prosthesis and he hopes this will restore some/most of Elijah's hearing. There is a possibility that it won't, in which case they can try again to connect things (if they need to do this, they could do it through the ear canal which is good news since they've had to cut an incision behind the ear and go in that way the past 3 times). But hopefully we won't have to worry about that and hearing will be restored on some level.

He is in recovery right now and they are waiting for him to wake up. When he does, we'll get to go see him. Since Dr. L didn't need to mess with the inner ear at all, we are hoping for no nausea/dizziness this time. It's possible we could get home yet tonight, but we'll play it by ear. Ha!

Great news from the OR!

First update from OR: NO cholesteatoma regrowth. YAY!! This is wonderful news. Elijah is doing great and they are going forward with prosthesis placement. Please pray for success with this and a smooth rest of his surgery. THANK YOU! Prayers really cherished right now.

In the OR

Here's a loopy Elijah snuggling with Murray the therapy dog before surgery. He got to meet this sweet puppy the last time we were here, so it was a special treat to get love from him again.

Elijah was sad to be here this morning. He kept saying that he wanted to see Sammy. :( He stayed busy with playing and reading books until the Versed kicked in and he couldn't hold his head up anymore. Dan went back to the OR with him around 11:35 to make sure he was as comfortable as possible. We are hanging out in a private waiting room now. Surgery is expected to take 4 hours. We are waiting for our first update.

Please pray for a successful surgery, NO cholesteatoma regrowth, no nausea/dizziness/vomiting and for restoration of hearing! THANK YOU!

The apple fortress and a prayer request

This weekend I am thankful for lousy weather. This has been our first FULL weekend all together as a family at home in months. It has been wonderful!

On Friday we went to a new apple orchard, or "apple fortress," as Sammy called it. :)

We had a great time picking apples and enjoying the gorgeous scenery and spilling our apple cider and having to purchase a new cup as it dripped down my back and all over the barn floor. 

On Saturday the boys earned a trip to the movie theater, so we watched Cloudy with a Chance of Meatballs 2, or "Channy and the Meatballs 2," as Sammy called it. Elijah was sure to correct him, so he has it right now. :)

And today brought another fun adventure, which I will save for later in the week. For now, a prayer request..

Elijah will be having surgery on his left ear on Tuesday at noon. The surgeon will go in through the skull bone behind his ear. He will look for regrowth of the mass that was removed in April. If there is regrowth, he'll remove it and we'll come back in 6ish months. If there is no evidence of regrowth, he will place a prosthetic device that will hopefully restore hearing in that ear. If he is able to place a prosthesis, life will be very gentle for a few weeks. The surgeon explained that even a big sneeze could dislodge the device and require additional surgery.

Please pray for our oldest boy on Tuesday! Pray for a successful surgery and for great news and as uneventful of a day as possible. Also pray for peace for all of us! Sammy included, as he will spend the day away from his family.

Later in the week I will share photos from today's fun adventure! Thank you so much for checking in and for PRAYING!

Week of recovery (for Mom)

The week for Elijah has been just as normal as can be! That boy is unfazed and always spunky and positive. His attitude is a constant reminder for me of what kind of attitude I should have! A couple times since Monday I have mentioned to him that we need to start getting used to the "scary mask" since we will need to see it again soon. Elijah responds with, "NO SCARY MASK!" We brought one home with us, and at first he wanted to flush it down the toilet. I have seen him checking it out a few times since and finally talked him into putting it on Lamby. He agreed, but refused to smile (even though you can tell he wanted to).

Life for Dan and me this week has been a little bit sad. I cried a lot for the first two days and nights after we found out about the newest "thing." Then yesterday morning I woke up MAD. Elijah doesn't deserve all of this! I felt like I wanted to punch and kick the cr@p out of a punching bag. So I think I will do that soon. :) I refuse to go back to the dark place I was at two years ago when we found out about his third open heart surgery. I will not go back there, I will not, I will not!

One of the boys' favorite things to do is play Disney Junior games on my computer. Most of the time they sit nicely next to each other. Today was one of those times, so I took a series of cute photos.

Silly brothers.

This is my fault. I told them to kiss each other, so they did. I hope this doesn't embarrass them one day.

Here are a few pics from the hospital that I didn't get a chance to post. The new hospital family waiting area is AMAZING. Elijah loves driving around in these little cars. One of these next times he isn't going to fit in them anymore, but for now they are still tons of fun!

Elijah's little Lamby is his favorite "guy" (girl?) right now. He adores her, and I think it is so cute and sweet. He introduced her to everyone he encountered in the hospital, and not one person mentioned the fact that maybe she was a girl's toy. I appreciated that.  

Here was our post-hospital pic when Dan was picking Sammy up from Grandpa's house. Notice how rested and happy Elijah looks? And how tired I look? Who was the one who got anesthesia?! :)

I was able to have a lunch date with my littlest love this week! Our little Sammy loves home and he loves his family just as much as we love him. On Monday when the rest of us were spending the day at the hospital, Sammy was spending time with his Auntie and Grandpa. He LOVES both of them dearly, but the following day I felt like he was upset with me. How dare you leave me for an entire day, mama! So I figured some one-on-one time was in order.

And here is the lovely scene that is our front yard right now. The ice that had built up on our driveway was so thick that it was nearly impossible to dig into. It has just kept growing and growing over this icy, snowy, cold winter, so Dan went to work on it and did a great job getting rid of the ice. Now it is an ice mountain in our yard! And literally overnight, our driveway is a skating rink again. You should see me carrying my 43-pound son to and from the bus on a sloped skating rink every morning, slipping and sliding all over the place. The kids on the bus must get a good laugh!

The boys have been saying and doing so many funny things lately, as they always are. I will save those for another post. For now, I must retreat to the couch for a bit before bed. Thanks for checking in! Have a great weekend!

Ear tubes are in

Elijah had his surgery yesterday to place tubes in both ears. He has had multiple ear infections in the past nine months or so, causing fluid build-up and hearing loss.

Dan and I were almost giddy yesterday when we saw that we had our favorite anesthesiologist, Dr A! We have never had an anesthesiologist that was anything but excellent at Children's, but Dr. A is on a different level. He has cared for Elijah during some of the "big" stuff, and he has always gone above and beyond. So we were very happy to see him walk in our room! Typically they would place an IV for a heart kid, even for a surgery as simple as this one, but Dr. A didn't think that was necessary considering how well E is doing. Thank God. One less thing to cause trauma/anxiety.

Surgery was a piece of cake. He was in and out in ten minutes. He woke out of anesthesia just fine, and ate two popsicles and drank a box of juice. The nurse gave us a little vomit bag for our ride home, just in case. It was a good thing she did because Elijah used it twice. I think I will invent a vomit bag that perhaps one cannot see through. Icky! Anyway, once we got home he threw up again, and again, and again. We were able to get some Tylenol in his belly at 8:00, thankfully, because he had a bit of a fever from surgery.

Starting at 3:00 this morning, he was throwing up at least every 30 minutes. He was so thirsty by 7:00 this morning that he was begging for water and milk (and waffles) constantly. It was a bit heartbreaking having to tell him no. After his 8:00 vomit session, Dan and I both were concerned. He was obviously dehydrated. He was pale and wasn't moving off the couch, which is unusual. We agreed that if he threw up one more time I was going to bring him back to Children's. I took a quick shower and prepared myself mentally for it, while praying that we wouldn't need to go.

God heard our prayers because he has not thrown up since! He has had water, toast, crackers and milk and he has kept it all down. He is doing much better! He is taking a nap right now, and we are hoping he feels much more rested and normal when he wakes up! Sammy was up a lot, too, during the night with all of the commotion, so we are hoping for a giant nap for him, as well.

Elijah's reaction to anesthesia has gradually gotten worse over time. He never used to have issues with it, but after the last few procedures he has vomited a handful of times. We have never seen anything like this, though! It is so strange because he was only under sedation for literally 10 minutes!

His hearing does not seem to be greatly improved, which is lingering in the back of my mind. The doctor told us we would see a drastic difference immediately. I'll worry about that later. For now, I have work to do while the little ones snooze!

Wrapping up heart cath #8

Elijah did great today! Dr. G ballooned three different parts of his pulmonary arteries, and was pleased with the outcome. He considered adding a stent to his left pulmonary artery, but it would have been in a weird spot so decided to balloon instead.

E's valve is functioning perfectly (yay!) and his pressures are good. We will need to go back to see Dr. G in 4 months, and probably have another cath in a year.

The anesthesiologist took some croup precautions, so his post-extubation croup was pretty mild. He got an epi neb and after that he sounded a ton better. He threw up about 30 minutes into recovery, so the nurse gave him anti-nauseau medication. He seems to be feeling much better now! He just gobbled down an orange popsicle and is playing on his little computer while watching Cars 2.

If all continues to go well, he can get up and walk around at 6:30 and go home at 7:00! We were fully prepared to spend the night here tonight, so this is a nice little surprise.

Dr. G had only positive things to say about today. We are very pleased with how everything went and of course we are extremely proud of our brave boy. This morning he had to get his blood drawn before heading back to the cath lab and it was TERRIBLE. I have never seen him scream and protest so much. It was heart-wrenching. He repeated the following string of words over and over until the ordeal was finished: NEVER! PLEASE HELP! DON'T DO THIS! STOP! NO! All while trying to wrap his arms around my neck. Ugh. That was tough. And he didn't even feel the poke! They used a nifty little thing called a j-tip to completely numb the area before inserting the needle. Hopefully next time he will remember that it doesn't even hurt.

I'm off to sit with my boy. We are all excited that we get to go home tonight!

Fixed eyes, a head injury and an M&M's addiction

I have much to share! I'll start with the best news. Elijah got his new glasses! Could any kid be better-suited for glasses than him? They suit his personality very well, I think. He did ok with them today, but did not like the patch at all. He has to wear a patch on his right eye for two hours every day, and I have a feeling this is going to be quite a daily struggle (like we need more daily struggles). Patching his good eye makes his other eye work pretty hard, which is good (for his eye) and bad (for those who have to deal with the complaining).



Two days ago, I was upstairs working on my blog and Dan was downstairs doing the budget (his favorite thing). Sammy was taking a nap, and Elijah was having quiet time at the computer. All of a sudden I heard chair legs screeching on the floor, followed by a splat and a murderous Elijah scream. He had somehow fallen off his chair and landed head-first onto the tile floor. A huge bump formed very quickly on the back of his head. I probably would have been comfortable not bringing him to the hospital if the bump had been our only concern. A few minutes after the fall, once he had calmed down, he started complaining about not being able to see us. He kept saying that his head was "up and couldn't get back down," and then he would say, "Mommy, I can't see you!" I brought him to the ER immediately. I know enough about head injuries to know not to waste time when neurological symptoms are present.



The ER doctor said he had a good deal of swelling and because he had complained of vision problems, a CT scan was ordered. The results were normal. He had suffered a mild concussion, but nothing was structurally damaged. The nurse told me to expect him to be "off" for about a week, but those vision complaints within 10 minutes of his fall were the only "off" things we have witnessed.



He was such a BRAVE BRAVE BOY during the CT scan. He had complete trust in me when I told him that nothing was going to hurt. He had to get "tied down" pretty tightly for the scan, and he did great. He's maturing! Just a short time ago, he would not have done well with that. I was very proud of my boy. Then we sat together on a bed in Room 16 and snuggled and talked and hugged and sang songs while we waited for the results. I don't know exactly how to explain this, but it was a weird experience for me. Sitting in a hospital with that special little boy of mine always, no matter what we are there for, brings me to tears. Happy, sad, thankful, sorrowful tears. I tried to put it into words to explain to Dan, but I couldn't. I can't explain it. There's just deep-rooted emotion there that I don't believe will ever go away. Elijah + hospitals = emotional mama.



The bump on E's head is still there, but he seems to be doing just fine. It has not hindered his sass or pooping-in-pants at all!

Our sweet Sammy needs rehab for his M&M's addiction. I had some left over from a recipe I made the other night, so I gave the boys each a small handful after dinner. Ever since then, Sammy has been asking for M-N-M-N-M (stick your tongue out on the Ns) about every 5 minutes. He gets such a funny little concerned look on his face when he asks for them. He's an addict!

And in other news, since being unemployed (or I should say since being SELF-employed!), I have been a home-organizing lunatic! After literally YEARS of carrying the I-don't-have-time-to-take-care-of-my-home burden heavily on my shoulders, I finally have time to take care of my home! I am loving this! Dan has helped me to create an office for myself in our loft, where I have been spending a few hours every day doing blog work and photo editing. We have also gone through all of the boys' toys and put three large bags in storage (aka, our messy garage). I have also sorted through my ridiculous pile of cooking magazines and organized them. Today I washed couch and chair covers. I am consistently CAUGHT UP ON LAUNDRY, which is the absolute strangest thing on the planet. When I was working full-time, I was never ever caught up on laundry. NEVER. And the best thing of all is that I get so much quality time with my precious boys. Spending this time with them is very special to me. Getting Elijah on and off the bus every day is indescribable. Snuggling with Sammy endlessly on the couch is the best. I love having this time with my boys!

I have another organizational project for tomorrow that I'm excited about! I'll take before and after pics and share. Fun!

Thanks for checking in on us! More later!

Recoop

Here was Elijah's side of a phone conversation with my dad yesterday, after we had gotten home from the hospital:

"I went to hossa-pi-doh (hospital) wif mommy-daddy. Sammy went to Sandy's (daycare) and we went to hossa-pi-doh and I pwayed wif car castle and I cried a wittle bit in the big room (OR) and Daddy said, 'It's ok, E-ijah!' and he gived me medicine and I cried a wittle bit."

Awwwww.

Elijah woke up with dark circles under his eyes this morning, so he stayed home with Dan today to rest.

I need to come up with a formula for how long it takes to recover from hospital time. It would be something like..

For every 5 hours of time spent in the hospital, 10 hours of solid sleep is required in order to feel rested and 1 week must pass before emotions are stabilized.

We are looking forward to Elijah's appointment with Dr. K next week. We're hoping to form a plan and possibly get more answers (Thanks for the esophageal reflux comment, Mina! We'll look into that.).

A quick thing about Sammy...he has been really clingy lately. He does not tolerate being held, or looked at, by strangers ("strangers" = anyone besides Dan or me). If I walk into another room he cries and crawls after me and then pulls himself up on my legs so I will pick him up. He responds to touch way more than Elijah ever did and I would consider Elijah to be extremely snuggly! How did I get lucky enough to have TWO snuggly little boys? And don't tell Dan I said this, but he's pretty snuggly, too. :)

I think I'm through with this scatter-brained post. Thank you for checking in on our family!

Bronch results

We are home from the hospital and we bear good news! Dan and I both knew in our guts that this was the news we would receive. There are no obstructions in Elijah's airway (aside from one teeny tiny harmless cyst which we will do nothing about), but his airway is very red and irritated. We even have photos that show the redness, but they are a little bit gross so I won't share. :) Why does he have an irritated airway? No idea! It is something he will "grow out of" (I always love that answer) and that we will obviously need to keep a very close eye on after he is extubated after surgery next month. We meet with Dr. K next week (pulmonologist), and hopefully we can come up with a solid extubation plan with him. I imagine it will involve steroids and epinepherine.

Elijah was such a brave boy today. More brave than he has ever been before. The ONLY tears he shed were at the very end of getting his IV removed. I was so proud of him! Signs of maturing were definitely evident in our boy today.

My favorite line of the day was from the anesthesiologist. When he first came into the room, he looked at Elijah and said, "Well! You sure look better than your chart!" :)

Today was a tiring but best-case-scenario day. We are happy about the news and it feels great to have this checked off the list. Another piece of the puzzle falls into place! Thanks so much for the prayers..

Bronch #2

I'm not going to bring my computer to the hospital today, so there won't be any updates until we get back. Hopefully that will be soon! And with good news!

I was up from 1:00 to 5:00 this morning doing what I do best lately...fretting. Elijah is asking for food :( and Sam is slobbering all over everything. We are heading out in a bit to bring Sammy to daycare and then onto that place we love and hate.

Please pray for good news!

Quuuue seraaaa seraaaa

Sammy, I know you're probably going to be mad at me one day for showing the world your cute, chubby bottom, but honestly...can you blame me? It is the cutest! And look at those legs!



I have no idea what happened to this week. It is suddenly Friday! And sunny! We don't have huge weekend plans. Dan will be working, weather permitting, and the boys and I will be chillin'. Maybe we'll get out and do something fun.

We don't have much to report, which I suppose is good! On Monday Elijah gets his laryngoscopy procedure (my tummy turned as I typed that), so hopefully we will have GOOD news to report after that.

Have a good weekend! Thanks for checking in.

Hospital photos and hospital-related thoughts

As I already mentioned, Elijah's visit to radiology was not a fun one. It is one that none of us will ever forget, unfortunately. After the torture was finished, Elijah was given a Curious George cd, a pet rat and five stickers, the maximum amount of loot given out at one time.



We had quite a bit of time between radiology and heart cath check-in, so we ran around the hospital, checking out all of the new construction. There were parts of the hospital that we didn't even recognize. It looks amazing!



My thoughts may or may not relate to the photos from here on.



Everyone, meet Tiptoe, the hospital rat.



Like his owner, Tiptoe has an allergy to morphine.



One of the things Elijah's anesthesiologist recommended is that we bring him back to his ENT doctor to get another bronchoscopy done. This is the same recommendation we received last year from his pulmonologist. With all of the croup he has, and with the trouble he has had breathing after being intubated the past few times, it might be worth it to see if anything serious (or fixable) is going on in his airway.



He had a bronchoscopy when he was six months old because of his squeaky breathing and the doctor found nothing, aside from a veeeeeeeery slightly narrowed airway. Since he has been intubated so much since then, it might be a good idea to see if perhaps damage has been done.



The thought of putting him through another procedure before his next open heart surgery makes me just about lose my mind. More trauma for my boy? !@#$*(! #)$*(UT sodhi!!! But, on the flip side, it certainly would be good to know what, if anything, is going on. A thought that makes me even crazier is what the state of his airway would be after being intubated for open heart surgery #3.



For this cath, the anesthesiologist used the tiniest breathing tube they had. One that they normally use for tiny babies. And it was not in his airway for very long. And he still had a VERY hard time breathing afterward. Not a good sign.



That @#%!#$@$^ airway has me more worried than open heart surgery!



Here's our boy after we got into our room in the CVCC and after we got him calmed down (i.e., after lots of hugs from Mama and after the nurses left the room). Look at that hair! By the way, there is not a single nurse or doctor that comes in the room who does not comment on Elijah's great hair.



Once we were given clearance, we ordered Elijah food and he devoured it, and then munched on some Cheerios. While I was opening the yogurt to feed to him, he said, "Mommy take a picture first!" Ha! Our first post-cath smile!



The only thing that calmed him was when Dan or I would lay on his bed with him and hold him super tight. He did not want to be in that place, and I don't blame him.



And we certainly haven't forgotten about our youngest cutie. Here is a peek at his smiley face. More of these to come!

Tired, but HOME

One of the things we have never had to deal with before now is having another child to care for while Elijah spends time in the hospital. Thankfully, Dan's wonderful parents took Sammy overnight so we both could spend time with Elijah. We got home around 10:00 last night and had kind of a restless night of sleep. I tried to put Elijah in our bed with us, but it just didn't work. After 150 kicks to the ribs, I asked Elijah if he wanted to go to his own bed. "Yes." I was in his bedroom every 30-60 minutes after that, rubbing his back because he was either yelling for me or yelling at his cough. "Go away, COUGH!"

We are all tired today. All of us except for Sam, that is. The boys just went down for a nap, so Dan and I might try to get a nap in, too.

Thanks so much for all of the supportive comments and prayers and emails. Wow! We have an amazing support system and we are so thankful for it!

A letter to my brave boy

Dear Elijah,

Tomorrow Daddy and I will bring you to the hospital so you can receive your seventh heart cath. I am sitting here, a total mess of tears, anticipating your anxiety and pain. The thought of anyone hurting you (even if it is for the purpose of helping you) or making you feel uncomfortable is one of the worst feelings in the world for me. I wish I could endure all of the physical and emotional pain for you. I would take it all, times a million, if it meant that you wouldn't have to experience any of it.

You're just a few days away from turning four years old, and that means that you have a very solid grasp of your surroundings. Because of that, this hospital stay will be a bit different than the last, back when you were still two. I worry that you won't trust me when I tell you something isn't going to hurt and I worry that this experience will give you more anxiety than you already have and I worry that you are going to be emotionally and physically uncomfortable for the majority of our hospital stay (I say "our" because I will not leave your side).

All of the worrying is really very pointless, and I know this. God has everything under control, and I know this, as well. Sometimes when I am feeling anxious like I am now, it seems impossible to turn off the worrying.

I need you to know that I will never allow anyone to cause you any sort of pain unless I know that it is helping you. That it is allowing you to stay with us on this Earth for a longer period of time. I'm so sad that the doctors and nurses have to hurt you in order to help you, Elijah. I'm so sorry for that. I wish there were another way.

This could possibly be the first hospital stay, of your many, that you will remember. In addition to any discomfort that you might store away in that smart little head of yours, I hope you also carry with you how much your daddy and I love you, support you and rally for you.

I love you, my sweet, brave boy!
Love,
Mama

Blankets

We were rebels today. We canceled Elijah's post-post-op appointment because the 12:30 time slot that we tried to reschedule (we are becoming increasingly glad that neurology is not his main specialty) would have thrown Elijah's entire nap/day off schedule. His incision looks great, so we are going to assume it is ok to bathe the dirty boy as we attempt to make another post-post-op appointment.

Yes, we are super protective of his sleep schedule and I'm very proud of that!

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A few months ago I submitted Elijah's name to the CHD awareness quilt project. Each handmade quilt block honors a specific child with Congenital Heart Disease. Forty-two blocks are put together to create a quilt that travels around the country to promote CHD awareness. There are many quilts that have been put together by generous people donating their time for this cause.

When I entered Elijah's submission for a quilt block, I was asked to write about a few of his main interests so they could incorporate those things onto his block. I don't remember exactly what I wrote, but what they created for him was absolutely perfect. I opened the image that was sent to me this past weekend and I was overcome with emotion.



Once I wiped away my tears, I called Elijah over and sat him on my lap so he could see a picture of his very own quilt block. I am not kidding you, he excitedly said, "GUCK! (truck!) CAW! (car!) NNN-DA! (zebra!) EE-EE-OO-OO (monkey noises) OOK! (book!) OB! (Bob The Tomato)," with no pauses in between words. Oh sweet boy, this is indeed your CHD square!

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On a somewhat related topic, I have discovered a very intense connection with an object that we "acquired" from Elijah's most recent hospital stay. We always seem to come home with a hospital-owned object or two after we have spent a few days there. Most of the time it is accidental and we get home and go, "Oh look! I guess Elijah has some more purple pajama pants!" This time, though, we acquired a small blanket not entirely by accident. I wouldn't call it theft, either. As we packed our things to leave the hospital, it ended up getting stacked with the rest of our blankets and we just didn't make much of an effort to pull it out.

When we got home I started to fold up the little blanket and drape it over the chair in Elijah's room along with the rest of his blankets when I was overcome with a feeling I couldn't explain. I felt a strange, close connection with it. I went into Dan's and my bedroom and tucked it under the covers on my side of the bed, not really knowing why. Every night since then, I have slept snuggled up to that thing as tightly as if it were one of Voldemort's horcruxes (sorry, Harry Potter on the brain).

I can't put into words why this blanket is so important to me. I feel why it is important, but I'm not sure there are words to describe that feeling. The only thing I can think to say is that Elijah literally sweat, bled and cried tears of emotional and physical pain onto that very blanket, and I want something tangible that won't let me forget every part of that experience. Maybe it is a reminder of his strength or a reminder of the bond we share or a reminder of how far he has come or a reminder of what God has done for us, or maybe all of that.

All I know is that it somehow brings me comfort to wrap my arms tightly around it as I fall into my dreams.

God is present

We survived another day in the hospital. Elijah did amazingly well. He hadn't eaten since 6:00 last night, and by 1:00 this afternoon he hadn't complained once about that. We really do have a good little boy. We are so proud of him.

As we waited for anesthesia to come talk to us about what would be happening, I started to feel some serious anxiety. I kept wondering if this was the right thing to do. There is likely nothing "wrong" with Elijah's brain or spine, so is it right to put him through trauma yet again? I said to Dan, "Are we doing the right thing here?" He said yes, but I was still unsure. And then! One of those God Moments happened. We know this anesthesiologist at Children's who we absolutely totally completely love and adore. He took care of Elijah during his last open heart surgery, his hypospadias repair and I think maybe a heart cath or two. This doctor is the definition of wonderful. Really, he has everything you could ever ask for in a doctor, especially a doctor who is going to be by your son's side every second he is in surgery, or in today's case, getting tests done.

So, back to the God Moment. At the height of my anxiety, Dr. Altman entered the room and I couldn't believe it. OH THANK YOU GOD OH THANK YOU THANK YOU. He sat down and talked to us and within minutes I knew this was good, it was the right thing, and everything was going to be ok. Dan mentioned to him that E's neurologist wanted bloodwork taken while he was sedated and Dr. A said that it was not on the paperwork anywhere. So this amazing man called our neurologist and asked him to send in the orders so we could get this done. Some new guidelines had been implemented two days ago that requires ONLY doctors to be able to write in orders for tests, so we needed the neurologist to be available promptly. He was, but there were some problems with getting the orders into the system, so Dr. A took it upon himself to write the orders out himself, as if he were the one requesting them, so we could get this done. This is not something most doctors would be willing to do, and he even told us that. We were so thankful for his willingness to go around the system a bit. He said to us, "There is no way I am going to make a two-year-old come back to the hospital, fully awake, to go through the trauma of getting bloodwork taken when we can take care of it while he is sedated." THANK YOU DR. A! Oh man, we sure were thankful to have him as a part of our life today.

The MRI went well. It took about two hours. Elijah woke from the anesthesia just fine. We met him in the hallway (being held by a nurse, he wasn't just roaming the hallway alone) after the procedure and he was happy to see us. After his heart caths he is always grumpy, so it was nice to see a smile when we walked around the corner. We had to sit in the short stay unit for about a half hour and then we were sent home. Elijah was starving. Within about an hour and a half after leaving the hospital, he had: three boxes of apple juice, a huge ziploc bag filled with chocolate teddy grahams, a stick of string cheese, a huge slice of pizza, a cup of milk and about a zillion mandarin oranges. I guess he made up for what he missed today!

Elijah went to sleep well and was in good spirits this evening. The sedation has made him just a tiny bit hoarse, but otherwise all is well! We hope to get the results of the MRI in the next couple weeks. He was clearly upset whenever nurses were near him, but otherwise, he did really well today. We have such a strong, amazing little man.

We had a little detour on our way home from the hospital. As we were walking through the skyway out of the hospital, Dan and I were practically skipping. I think I said, "Wow! That was the easiest discharge we've ever experienced. This day is AWESOME!" We got into the car and started to drive away, when....thunk thunk thunk.. Uhhhh, is something wrong with the car? I got out to look at the tires and sure enough, the right front tire was totally flat. Oh ugh.

We have these stupid hubcaps on our car (they came with the tires) that make it so you cannot access the lug nuts (forgive me if I get this terminology wrong) with a normal tire iron. So dumb. So Dan and I just stared at each other like, what in the world are we going to do??? He looked in the trunk, in which I believe God had placed a bottle of Fix-a-flat. Dan pumped it into the tire and we quickly drove away, in hopes of finding tire help before it deflated again. Children's Hospital is in a very sketchy part of town, so I was biting my fingers as we drove. Please God, please God, don't strand us in this part of town. We thankfully came upon a tire shop, and we were totally blessed to meet an amazingly nice man who put on our spare tire almost immediately, and for FREE. I think we will go back there and bring him cookies and any other treat he might like.

I loved how we handled it all, though. I was proud of us. We could have freaked out and handled that situation poorly, but we kept humor in it and handled it lightly and I believe that was a good example for Elijah to witness. It was a good day. Everything went as well as it possibly could have and we are so thankful for that. God was with us today and it was so obvious. It's amazing what you see when you keep your heart and eyes open!

Thanks for checking in. Pray for good MRI results for our brave little boy. We already know he is just perfect.

Home and thankful

Chugging down some apple juice after surgery


Eating yogurt, holding onto the belly button, and...check out those chub thighs!

HAPPY THANKSGIVING!
We were released from prison, I mean the hospital, at 9:00 this morning. We slept in Elijah's room with him last night on the very small and uncomfortable pull-out couch thing, and none of us got much sleep. No surprise there. There are constantly people coming into the room, even when Dr. G gave specific instructions not to bother us through the night. The respiratory therapist who came in at 4:00 did a great job of waking Elijah (and us) up for the day!


Watching Veggie Tales this morning and cuddling with his favorite pillow. He woke up pretty puffy this morning. They had been pumping fluids into him all night, so he retained a little bit of that.


This was our Minneapolis skyline view from Elijah's room. Not bad for a hospital room!


He was intrigued by the stethoscope. He kept handing it to me because he liked it when I put them in my ears and listened to his chest.

We got home and all of us slept for THREE HOURS. That's not saying much for Dan and me, because we could sleep for three straight days if we had the time, but that is saying a lot for Elijah. He was and still is one tired little boy.

After our nap we went to Dan's parents' for Thanksgiving dinner. The food was fabulous, as it always is, and it was good to see family. Elijah just wasn't into it, though. He didn't really want to eat and we could tell he was still exhausted. At one point, he crawled over to his diaper bag, pulled out his blankie, put it on the floor and then snuggled up to it in the corner. We left shortly after that and he stayed awake for about 2 minutes in the car. I turned around to see this:



We put him to bed super duper early tonight. He needs it. He will get caught up within a few days and be back to his usual self.

I am so thankful that this cath is DONE. It always feels good to get over each hurdle. It was a bit of an emotional day for me today. Partially because I'm overly tired, but also because of what we just watched our little boy endure. Again. Hospital time is tough. It is a totally draining and emotional experience. Watching the emotional turmoil that our little man goes through is so super traumatic for us. It always takes me a while to calm down after a hospital stay.

Today, I am so thankful for my little boy's strength, and for Dr. Gremmels' compassion and knowledge and for my supportive and loving husband who is also an amazing father. I am thankful for the amazing hospital we have so close to us and for all of YOU who walk with us in this journey and love Elijah along with us. I am thankful for family and friends and everyone in our lives and everyone who prays for our strong, amazing son.

I hope you all had a great, thankful day! xoxoxo