Urethral Surgery #3

We are settled back in after a day at the hospital. As always, we experienced the hospital time warp where things went really slowly yet oddly fast. When we checked into our room this morning I was overjoyed to see our FAVORITE anesthesiologist's name on the board. Dr. A has taken amazing care of Elijah during some of his biggest surgeries, so I had to refrain from hugging him when he walked into the room.

The surgeon today was a cohort of Dr. R's, so not our usual doctor. Elijah kept referring to her as "Dr. R's sub." :) The surgery went smoothly and quickly, but we got news we weren't expecting. The doctor thought that despite intermittent cathing (which we'll have to do daily for the next six months), this is just a patch. Within a year or two Elijah will need a much bigger surgery that sounded like a pretty big deal. One step at a time! First we have to get him through a week of being cathed and we will take it from there. We will also pray for another miracle!

He was SO brave today, even with the "scary mask." We got him a pack of Pokemon cards immediately afterward as a reward for his bravery. He was SO groggy when he woke up that he could hardly form words and he kept asking the same questions over and over. Once we got him up and moving he improved quickly. By the time we got home he was requesting a grilled cheese sandwich and tomato soup (fave comfort foods). He ate endlessly and I even caught him in the fridge devouring cottage cheese straight from the container. :)

We are praying that the cathing goes smoothly at school for the next few days. We have communicated with the school nurse and she is going to help him "drain" 3x/day, which is a huge blessing. If needed, I can go in and help, too. It really is amazing how secretive they make cathing these days. No one will ever know what's going on unless Elijah spills the beans. :) And great news for him! He doesn't have to use the toilet nearly as often! :)

I have to say that on days like today it sure does help to have a faith in God. SO many times today, I just deferred to Him. I trusted his promises and let Him hold all of us. We are feeling strong, confident and faithful and that has nothing to do with our strength.

I'll end with some hospital-related funnies. All of the below occurred after Elijah had taken Versed (the pre-surgery med that alleviates anxiety)..

Dr A asked if he was going to do Kung fu while they tried to put the mask over his mouth. Elijah held up Pikachu (Pokemon stuffed animal) and said, "No, but you better watch out for THIS little fella!"

A doctor asked him if he was nervous and E answered yes. The doctor asked what specifically he was nervous about and he said, "Whatever this thing is that you're doing to me."

And when Dan put on a gown to take him back to the OR, Elijah said, "Dad, you're a pretty lady! You should put on make-up!"

After the 23rd surgery

Two quick funnies from Friday that I forgot to write in my last post! At one point before surgery, a nurse asked Elijah if his wristband info was accurate. She said, "Are you Elijah Daniel Porta?" He said yes and she asked, "Who are these two people with you today?" Elijah said, "That's my mom and that's the guy with the gigantic beard." :) Then after surgery the anesthesiologist came in to discuss how things went (this doctor was AMAZING, as all of them are at Children's). He said that E did great and then started laughing so sincerely. He said that Elijah was so polite as they were sedating him, saying things like, "No thank you, I really don't like that icky mask. Please take it away." That's our boy!

Elijah has bounced back from surgery like a total champ. I can hardly believe it! Literally the morning after surgery he was chipper and helpful and happy and rested. He was bouncing all through the house and eating through our fridge like caterpillars eat through milkweed. He was hardly in any pain this time, which was a huge difference from last time. This made me think about something. How often do we say a specific prayer a million times only to have it answered...and not give thanks?!

ALL of my very specific prayers were answered for this surgery. I prayed for a miraculous calm to take hold of Elijah in the OR. This was surgery #23 for him and all of the previous 22 surgeries have brought severe anxiety when the mask was put onto his face in the OR. I'm talking, multiple people having to hold him down because of body flailing and total anxiety/panic. :( According to Dan (because I have only gone in once and swore I'd never do it again), this time was a breeze compared to the last 22. That was an answer to prayer! My other main prayer this surgery was for Elijah to experience minimal pain afterward because last time was pretty bad for 2-3 days. He has had such minimal pain this time. Another answer to prayer. This time I have followed up with much thanks. It's so easy to overlook that part when your prayers have been answered, isn't it?

We are having some specific issues with behavior which pertains mostly to Elijah acting out aggressively toward Sammy. We have a plan in place for that and we're sticking with it, even if takes months for him to stop these behaviors. Consistency works best for him. Other than these issues, behavior has been overall so good for the most part. I remember just a few months ago barely making it through every day. The late afternoon hours were so rough that I wanted to run screaming from my house by 5:00pm. It's not like that anymore, even when homework and therapy is thrown in.

Elijah has been using the toilet on his own lately and I've been afraid to mention that to anyone in fear that he will regress again. I realized today that I have also been able to work on "other" things that even a few months ago wouldn't have been possible. He now gets into the car all by himself and puts on his own seatbelt. Even as recently as July, this did not happen. He also will put his shoes away when he gets home and put them on without complaint when it's time to go somewhere. Prior to July, I mostly did tasks like these for him. If I ask him to do a favor for me around the house, he'll (usually) do it happily. He now brings his plate to the counter without being asked after every meal. All of these things would have been tasks I wouldn't have even attempted three months ago, as we were all just doing our best to survive! I attribute most of this to his anxiety meds. They are another answer to prayer and I am grateful for them!

As always, I had a rough couple days after Elijah's surgery. It always hits me hard, even when it's a minor ordeal. I walked around in a stupor for most of the weekend and got nothing accomplished. Here's to a great week! 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 today and a few funnies!

I promised corn maze pics, but that'll have to wait! I meant to write a post last night, but slipped away. Elijah's urologist feels comfortable going forward with surgery today even though he is being treated for a UTI. Sammy is off to school and we are just chillin' and mentally preparing for a trip to the hospital. It should be in and out with only a few hours spent there, assuming everything goes as planned. Prayers are appreciated!

We have had a good week! Yesterday brought some behavior that we hadn't seen in a while (home and school both), but I'm attributing it to surgery nerves, the UTI meds (his body NEVER does well with these) and having a substitute para at school.

I have a few funnies to share that I've written down recently. Forgive me if I repeat any of these. There can never be too many funnies, right?

Sammy: Elijah, I want you to plummet!
Me: Sammy! Do you know what the word "plummet" means?
S: Yep! To fall fast!
(this boy is smart!)

As I was coming toward Elijah to hug him, he yelled, "Aaaghhhhhh! A lady who wants to kiss me!"

Waking up one morning, Sammy said, "Ohhhh it feels so ouch in the morning."

I walked down the stairs and heard Elijah say, "There's the little lady carrying a box of snuggles!"

Sammy heard music playing somewhere and asked, "Is George Washington making that music?"

Elijah: Mommy, you are a REALLY good cook. Except...I don't like most of the food you make. But your desserts are good! Yeah, you make REALLY good desserts. Fantastic desserts.

Elijah (after walking a lot through the corn maze): MOM! Me feet are bloply and tired!
Me: What does "bloply" mean?
E: EXHAUSTLY!

After coming out of the bathroom, Sammy announced to us, "Ladies and Gentlemen! I.....HAVE ARRIVED!"

Sammy's super sweet bedtime prayer that is so perfect: Dear Jesus, thank you for this day. Thank you for Sammy, Elijah, Mommy and Daddy. Thank you for breakfast, lunch and dinner. Thank you for LIFE. Amen.

Me: Ugh, my eyes hurt.
E: Why?!
Me: Oh, because I'm a tired mama!
E: I...I really don't have a response for that, interesting red-eyed woman.

The other night Elijah picked up one of my tank tops from a pile of laundry and asked, "Mom, is this one of your boobie packs?"

First week of school done and a surgery on the horizon

We all survived the first week of school, phew! I shed far too many tears this week. My days felt empty without Sammy by my side, holding my hand everywhere I went. But I knew he was safe at school with the BEST teacher and having a great time and that put a smile on my face. Elijah had a great week at school, too! He had some blurt-outs, but as far as I've heard nothing worse than that went down. In fact, some really amazing things transpired with him. Things I NEVER thought would happen on this first week of school. During the first two days of school he completed two math sheets (one of them with 56 problems on a page!) WITHOUT COMPLAINT. Uhh...wha?! Last year when a math sheet even touched his desk it immediately got crumpled and thrown across the room. I was so darn proud that I gave him a bit of incentive (uh, bribery) to continue with this. I offered an Inside Out stuffed animal on Friday after school if he could complete one math sheet per day without complaint. He did it!

Sammy has really done SO well this week. I give that boy major props for holding his stuff together so well. He hopped onto the bus happily every day and he hopped off happily every afternoon. He eagerly told me details about his day and seemed genuinely excited about going back again. This morning when we were getting ready for breakfast, I could see that Sammy was on the verge of losing it. I think the craziness of the week had finally gotten to him. He sat on the floor of our kitchen, staring at our pantry and literally SOBBING because I told him he could not eat fruit snacks for breakfast. He would not budge from that spot and continued to cry. Finally I grabbed him and hugged him tight and rubbed his back and told him that I understood. School is tiring! It's been a week filled with change! And I told him I was very proud of him. After a few minutes he completely switched gears, got dressed, ate breakfast and was ready to hop on the bus again! By the way, Sammy got an Inside Out stuffed animal, too. :)

There was another major success with Elijah this week at school. There is a kid in his class who was a major antagonist in his first grade class. This kid...ugh. He preys on Elijah's weaknesses and vulnerabilities and instigates trouble. He knows that Elijah is prone to doing things like blurting out potty words or screaming when frustrated, so he will approach him and say, "Elijah, say a potty word as loud as you can!" In first grade, Elijah always did what he said and of course ended up getting into trouble. This year, after seeing this boy's name on a locker at open house, I began coaching Elijah and  doing some role playing. On day #2, Elijah got off the bus and proudly told me that this boy had urged him to "scream as loud as you can!" E told him, "NO!" and turned the other way. This is hugely hugely awesome.

We have had some medical developments this week, as well. Elijah had two routine specialist appointments, one with urology and the other with ENT. We have known that the urology surgery from last November hasn't worked, but we did not expect to alarm the doctor quite so much. Another surgery is necessary and SOON! He wanted to do surgery as early as Monday! I choked and began coughing and asked if we could maybe wait till the following week. So Elijah will have a urethral dilation on September 25th. The surgery itself is not major or worrisome, but what we have to do at home with him every day afterward for SIX MONTHS is worrisome. Let's just say major painful things in that region. :(

Today Elijah got a hearing test and we chatted with Dr. L. His hearing is the same as it was 6 months ago...mild hearing loss in left ear with a spike into normal hearing in higher decibels. YAY! And an improvement even from last time...his ear drum now moves when air is blown into the ear (before it wouldn't budge). Dr. L said AGAIN that he never ever ever ever would have anticipated this outcome for Elijah. In standard fashion, he referred to E as an "evil genius" and walked away scratching his head. In a good way!

I'm super excited about tomorrow because we will be getting together with two new friends (one in the am and one in the pm) who we have recently met. We are excited about the opportunity for new friendships and connections!

Phew, here's to another FULL week almost done. Looking forward to what next week has in store!

Surgery, Santa and thankfulness.

Elijah did great today! Surgery was quick, with an easy recovery. It was one of the better recoveries from anesthesia that we've seen. I have been careful about saying what the surgery was all about in order to give him some semblance of privacy. It's sort of a private ordeal, so I don't want to scream about it from the rooftops. Catch me in person or over email and I'll explain! He was in a bit of pain afterward and had a mild fever. We will stay on top of pain meds through the night.

Elijah was, again, terrified of the mask. :( Also, again, terrified of removing the IV tape. I am thankful this is behind us! He was such a brave boy today. I could see signs of him being more self-aware than ever before, which was encouraging. He was able to recognize that he was feeling scared about specific things and he was willing to try tactics to not be so afraid. This is a first!

Dan and I always feel so terrible watching him endure pain, both physical and emotional, so we always allow him to pick out a toy afterward for being brave. So that Sammy never feels left out, we let him pick something out, too, for being a good and supportive brother. Today we picked out a toy for both boys to share, a new Lego Movie lego set! They were both SO EXCITED. Oh my goodness, they were happy boys!

One thing Elijah said repeatedly today in the midst of his discomfort was, "MOMMY! I miss you!" When I finally asked what he meant by that, he said that he missed me when I have to be at work so much. :( Ok, this kind of kills me. Obviously we all need to work, but I have been working an exceptional amount lately and obviously it is affecting our family. If Elijah can verbalize it, it means something. Thankfully things will start to slow down soon.

Here is the boys' photo taken with Santa from last weekend! (yes, I believe Santa's bare belly may be showing..)

Tomorrow will be busy, but I'm hoping we can take some time to breathe and be THANKFUL. We have so much to be thankful for. I am looking forward to four days of no work and tons of family time. Friday will be our annual getting-our-Christmas-tree day and we will spend the day decorating our house. We are all looking forward to the next few days! Thanks for checking in and HAPPY THANKSGIVING! Hug your family. Tell them how much you love them. Be thankful!!!!!

Accidental snot

Sammy was extra tired tonight and having a tough time getting through dinner. He threw his fork onto the floor and when I asked him to please pick it up, he did his I'm-stuck-to-my-chair-and-can't-reach-it routine. This went on and on. Dan brought him to our bedroom for a little timeout. A few minutes later, he quietly came downstairs and said, "Mommy? I'm really sorry for what I did in your bedroom." I asked what happened. "I accidentally rubbed snot all over your bed." Seriously.

Elijah had a few rough patches at school today, but he confessed a major one to us before we even heard about it from his teacher. This is a new and huge thing! The behaviors we are hearing about are not ideal, but it is a big step for him to communicate not just that "something bad" happened (or not to mention it at all) but to actually explain the details. We are thankful that he will have a big chunk of time off school. Tomorrow is surgery, so if you wouldn't mind praying for it to be quick, painless and successful we would appreciate it!