Sedation

We think we found the cause of the low blood pressure and low heart rate. I had a feeling in my gut all afternoon and evening that something was amiss. Elijah was acting strange. The things he was saying and the way he was saying them were different than usual. His nurse took vitals about an hour after he had fallen asleep and I heard her say, "THAT can't be right." His BP was 70/46 and heart rate was in the 80s. 

Elijah's room was suddenly filled with nurses...some trying to calm ME down and some trying to figure out what was going on. They called Dr. L and he told them to get an ICU doc to the room immediately. A very kind doctor came in, glanced through his chart and reviewed his list of current meds. He thinks that two of the meds E is on are having a cumulative sedative effect, causing him to be EXTRA sedated. He has been on both meds since Tues/Wed, and one of the nurses told me that one of those meds typically is not given for more than a few days in a row for this very reason. Both meds are being discontinued immediately. They are pushing IV fluids through him more quickly to flush the meds out.

In the meantime, they are checking his BP every 15 minutes. The last reading was 73/54, so slightly better but still really low. HR still in 80s. He is super lethargic and cannot be totally awakened out of sleep. Everyone found it to be encouraging that when we were poking at him to wake up, he was able to groggily yell at us, "STOP TOUCHING ME!" 

I can honestly say that I have NEVER panicked like that before here in the hospital. I was so close to having a full-blown panic attack when the ICU doctor arrived. His calm demeanor and confidence about what was going on helped me feel better instantly. I told the nurse not to tell me the BP readings anymore unless they have improved, and I situated E's IV pole so that it blocks my view of his heart rate monitor.

I'm going to try to get some sleep here next to him. Thank you all so much for rallying for our boy. Please don't stop the prayers!

Prayers needed!

PLEASE pray for Elijah right now...and maybe for me, too, as I feel like I'm on the verge of a panic attack. The nurse just checked his blood pressure and it was low. Low for the average person, but really low for Elijah. He won't fully wake up for us right now and is SUPER lethargic. I just requested that a doctor come in to check things out, so we are waiting on that.

Making progress

We got Elijah upright a couple times today. He sat in a chair for 15 minutes before getting very tired...and then very sick (which we expected). We really tried to push him, against his wishes and with some complaining (I don't blame him one bit). He vomited quite a bit between the time he woke up this morning and 2:00. After that, we took it easy with moving him around so he could keep food down. And he did! He had yogurt, crackers, a fortune cookie, banana slices, water and juice, and it is all still in his belly! He got really close to losing it all around 6:00, but managed to keep it down. Evenings have been his most difficult time for nausea/vomiting, so this is huge!

We have been given so much love today! Dan's parents stopped by this afternoon with takeout for me (yummy and SO appreciated!) and love for both Elijah and me. Pastor Londa stopped by with two of her amazing children to give us love. We have been attending her church for about a year now and LOVE it. It was so nice to get to know her better! Her kids were very kind and they kept Elijah company while Londa and I chatted in the cafeteria downstairs. I was fighting off some major negative thoughts/feelings for most of the day, so our visitors were the perfect distraction. They were the sunshine in our day!

I'm guessing we will be here a couple more days, but we will get the doctor's thoughts in the morning. Good night! Thank you for the prayers and love!

The nausea battle

Elijah had another night free of nausea and vomiting, but has been vomiting since waking up. Dr. L is pleased that he is moving in the right direction, but we will not be able to leave until the vomiting is under control.

Sammy and I had a breakfast date at Perkins this morning! It was great until the bathroom Lego tragedy occurred. His Lego police truck fell off the counter and smashed into a million pieces. Many tears were shed as I scrambled around on my hands and knees desperately trying to find all of the pieces and get the police vehicle back together. A memorable end to a memorable date with my cutie pie.

Dan and I are swapping duties this morning, so I'll be with Elijah at the hospital today. Thank you for the continued prayers!

Forget baby steps....here's a HUGE step!

Please excuse the pull-up, but I am so excited to share this photo! Dan got Elijah OUT OF BED tonight and on his feet! It only lasted a few seconds and was followed by a bout of sickness, but.....HUGE PROGRESS! My frown has been turned upside down.

Baby steps

Elijah showed improvement today! He went from 8ish this morning until 5ish this evening with NO vomiting and minimal nausea. He even kept water/juice/crackers down during that time. Then Dan thought he might be able to handle a light dinner, but that didn't go so well and he has vomited a few times since.

Elijah even willingly raised his bed up a little more than what we've been doing and he tolerated that well. Baby steps!

One thing leaving me unsettled is Elijah's occasional involuntary eye movements. I've mentioned this to the doctors and they have not seemed concerned. Hopefully it's just part of the process, but it freaks me out every time.

I felt a sadness today that I hadn't felt yet. I feel like Dan and I stay pretty positive about these ordeals, but we have our weak times. Today was a weak day for me. I feel an overwhelming sadness about Elijah having to endure so much and it is hard on my heart not to be able to do anything to make him feel better or speed this process along.

Tomorrow is a new day!

Needing a turn-around!

Elijah slept from 7p-4a and didn't wake up feeling sick one time during the night! At 5:00 he emptied his belly and the contents showed that he likely has now developed gastritis. He still is unable to keep anything down, which means we aren't going anywhere. The ENT team told us to hold off on the PT's recommendations until Elijah is "over the hump," which should hopefully happen....soon?! So we continue to wait this out until he can keep something down. 

When the docs were in here this morning Elijah started doing his silly chattering and Dr. L said, "Hmmm, has he been acting especially goofy from the meds?" I said, "Nope, this is baseline goofy." The team laughed. Dan will be here in a few hours so we can swap duties. Please continue to pray for E to keep something in his stomach today. We need a turn-around day!

Tired brain (mine this time)

Same story this evening...dizziness, nausea, vomiting, repeat, repeat, repeat.. I do have a story that made Elijah's nurse and I laugh today. Elijah mentioned that his left shoulder was hurting. I was puzzled and after thinking about it for a few seconds, I said, "I bet it's because he won't move that arm (that his IV is on)." She looked at me strangely and said, "Yeah, that's what you said yesterday." I have ZERO recollection of saying that yesterday, or even talking about Elijah's shoulder at all. What else did my tired brain block out?!

E is asleep, so I'm off to rest, too! Thanks for the continued prayers!

Time to retrain the brain

We had an extensive visit with a physical therapist this afternoon and we gained some insight about what is making Elijah so dizzy. She ruled out vestibular issues and is thinking this is more of an eye issue. His brain and eyes aren't in sync, for whatever reason. Body movements (especially involving his head) are VERY tough for him and either make him experience nausea or dizziness (or both). Now we begin the process of re-training his brain so that it knows that movement is normal.

The PT gave me some eye strengthening exercises to do with him and we also need to start pushing him to sit up, roll over, move his head, etc, even as uncomfortable as it might make him. She had him read a few pages in a book and even that made him vomit. There is no way to know how long this process will take. It could happen quickly, or it could be months. As soon as he can keep food and water down consistently, we can head home. It could take a handful of days or even a week (or more) to get to that point.

This is all a bit frustrating, but at least we know how to proceed. AND...we truly are blessed. Things could be so much worse. We are grateful for our boy (BOTH of our boys!) and we are constantly amazed at his strength and smile through it all. Thanks for the prayers! To be continued..

Lego smiles

The Lego ambulance and fire truck are made! E is one happy boy. He keeps saying, "Aww! Thanks, Mom! Thank you so much for these Legos!" 

It kinda seems like we might be here for a while. If his body is moved at ALL, he throws up. We talked to PT briefly and they seemed to think they might not be able to help (??). He is resting now and just received another round of Valium to help alleviate dizziness/nausea. Thank you for the kind messages, texts, calls and of course prayers!

The dizziness continues

Dan and I did the Sammy swap and I will be at the hospital with Elijah today. He is still dealing with dizziness, nausea and vomiting, especially when he sits up or moves around. I picked up a new box of Legos for him on my way in and I knew it would put a smile on his beautiful face. Please keep him in your prayers today! Pray for the dizziness to go away!

Making progress

Dan and Elijah had a mostly good day at the hospital today and they will be spending tonight there. Elijah was handling food well all day, but ended up vomiting a few times after dinner and meds. The news was disheartening, but I'm trying to keep things in perspective. Last night he couldn't even open his eyes without vomiting. Progress! Dr. L explained to me this morning that his body is basically having to "rewire" itself right now. Inner ear stuff can be complicated, with balance and stomach being so closely involved. It is "not uncommon" for a person to require 2-3 days to get back on their feet after such a surgery. Elijah is still unable to sit up without having the sensation that the room is spinning. We are praying for progress in this area tomorrow and that he will be ready to come home! 

It is difficult for me not to be at the hospital with Elijah right now, but it has been so nice to spend one-on-one time with Sammy today. He gets upset with me any time that I spend more than a few hours away from him, and that was definitely evident today. He's such a sensitive boy. He loves his family! And we love him so much back! 

We will see how the night goes for Elijah. If he can hold food down and if we are able to keep him upright, we might be able to bring him home tomorrow. If not, we may be staying another night in the hospital. 

I have much on my mind regarding this whole ordeal. It has been tough to swallow. For now, maintenance. Stay rested and take care of precious ones. Later, the aftermath. I'll deal with that when it comes. Thank you for checking in! Please pray for our boy, if it is on your heart. Pray for total healing (emotional and physical) and for a miracle to happen with his hearing obstacle. Thank you!

Valium to the rescue!

Sammy and Elijah got to see each other briefly while Dan and I did the trade-off. He is at the hospital now with Elijah and I'm home with Sammy for a bit with the intent to spend time with my cutie and to NAP. 

Just before I left, Elijah had received his first big dose of Valium and was responding well to it. No more nausea or vomiting! And now a few hours later, Dan texted and said that he is keeping water and crackers down! Yay! Elijah was still feeling really dizzy when we tried to get him out of bed this morning, but his dizziness while lying down was MUCH better. Things seem to be turning around! Hoping we can get him home sometime today!

Rough night

This was my view for most of the night.  Between vomit-catching, hand-holding, hair-rubbing, worrying and listening to the extremely loud pipes in the wall 1 foot from my head...not much sleep was had. I am expecting the human to zombie transformation to begin any time. 

Dr. L stopped in this morning and saw the puke bowl propped under E's chin. He explained that some people respond to this type of surgery with severe vertigo symptoms. Every time he opens his eyes he gets dizzy and experiences nausea/vomiting. He threw up A TON during the night. There is absolutely nothing left in his stomach. He is feeling sad and crummy.  Dr. L said to expect to be here another night or two. Please pray for a turn-around today and for him to be able to keep food down.

Staying over

When E is awake he becomes very dizzy, causing non-stop vomiting. When he's asleep he feels fine. I'm staying in the hospital with him overnight so Dan can go be with Sammy and hopefully get a good night of rest (he wanted me to go home and rest but I refuse to leave my boy tonight). Praying for the dizziness and vomiting to subside and for a much better day tomorrow!

Ear recovery

No matter how huge he looks on my lap, he will always be my baby. 

E has had a difficult time coming out of anesthesia. He is super groggy and has been vomiting. Now he's in some pain so we are waiting for his tummy to settle a bit. If things turn around in the next hour we could still head home. Just waiting it out while we half-watch Monsters University and drift in and out of sleep.

Gut punch

Dan and I are in the midst of trying to process the information we just received. Elijah did great during surgery, but we received a punch in our guts when we learned what Dr. L found inside his left ear. The footplate that was intact and healthy last March has been somehow broken in half (perhaps due to mass growth) at some point during the last few months. What does this mean? Elijah is completely deaf in that ear with little chance of ever having hearing restored. We will need to repeat today's surgery in 6 months and it would be a big concern if there was another round of cholesteatoma regrowth at that point. In the meantime, there IS something we can do to help the sound travel through his skull on the deaf side which will help things not to feel so weird for him (called a bone conductive aid). We will explore this avenue if his hearing test a month from now confirms total deafness. Dr. L said that in all his years of being an ENT, he has never come across this scenario.

There's a chance Elijah will experience dizziness and vomiting when he wakes up. If this is the case, we will spend the night here. If he feels fine, we will head home.

I feel so sad for our boy right now. With everything he has endured, it is hard for me to grasp this. Thank you all for your prayers.

Still working

Dr. L is still working on removing the cholesteatoma. It is situated in a precarious spot, near some facial nerves and other delicate areas so it is taking a long time. I asked about reconstruction and it sounds like that is probably not going to happen today, although Dr. L has not made that decision for certain yet. More waiting and praying!

First ear update

First update from OR is not exactly what we wanted to hear. The cholesteatoma has regrown.  Dr. L found three pearl-sized "bits" of tissue but he doesn't know how extensive the situation is or what lies beneath. He has not made a decision about whether or not to proceed with reconstructing ear bones. Elijah is otherwise doing great! Next update will be in an hour. In the meantime...me, my iPhone and American Horror Story!  (Dan thinks I'm crazy.)

Ready for ear surgery!

Elijah and Minion Dave are ready for surgery!