Development – check?

Special needs parents are usually ready to hear any news. Most of the time we get horrible news from multiple people, more often than great news. The more severe the conditions the less good news you tend to hear. You learn to take it in stride. You know from the specialist you are seeing most likely what you will be hearing. For neuros – the MRI was not great, the EEG shows increasing seizure activity. From pulmonology you might hear that your child does indeed have sleep apnea and you need another machine. We take these things in stride and almost expect them. It comes with the territory and the endless hours of anticipating the multiple outcomes for any given appointment. You research, you talk to other parents who have been there or are currently dealing with similar situation. You take notes and you compare notes. Its how we make it through the days and the weeks of endless waiting rooms, medical charts and doctors visits.

The one thing that I wasn’t prepared for was the overwhelming ‘typicalness’ of the 18 month checkup. I knew he was getting shots, and I knew I had a list for the doctor of prescriptions that needed to be filled/renewed, paperwork that needed to be completed. But what I never could have prepared for was the beginning of the appointment. I have been through many of these appointments having a daughter who is soon to be 6. Many. I know the paperwork that needs to be filled out, the checklists, the consent forms. I have done it before, even for Superman.

Like every appointment, they handed me a clipboard. I was expecting it to be the insurance form I have to fill out EVERY time. I would assume they would keep a copy on file but apparently not. Instead of the usual paperwork I saw the Texas state consent forms for the shots and a few other pages. As I muddled my way through them, the vaccine form, checked off the usual boxes. Head trauma/brain injury – check. Seizure activity – check. The one surprising one I got to say no to was the blood transfusion. We have officially reached over a year since his last blood transfusion. I was feeling pretty good at that moment.

Then I got to the very last sheet. The 18 month developmental checklist. I read the first paragraph and I could have never prepared myself for what happened next. My eyes literally welled up with tears and I couldn’t control it.

I know my son is behind. I know he doesn’t do things neuro typical children do. I am not blind and I am not under any delusions or denial. I have acceptance. But to see it on paper, to hold those words in my hands. Asking me to answer no to the things he should be doing, then the paper saying if I answered no to any, please ask the doctor to refer your child for a hearing test. Which is ironic because that is the ONE thing he does have, he hears extremely well.

I managed to blink away the tears before any of the other people in the waiting room saw. Because I do this everyday. I don’t fall apart in waiting rooms. Secretly in my car? Of course. In my bathroom? Absolutely! In the waiting room of a pediatrician’s office? Never. They wouldn’t understand.

It’s never happened to me before. I accept my son for everything he is, and for that which he is not. Because that is what gives him his superpowers. If he had everything, he would have nothing to overcome and that act of overcoming will be what builds his strength and character and will show the world the power of miracles.

But today I was simply a mom, faced with the overwhelming reality of what challenges face her child. Being given the golden ruler and in black and white being shown that her child in no way measures up to the statistical norms. These are the days that my heart breaks into a million pieces for the life that he faces. I know he doesn’t know the difference as he has never lived anything but this life, but I feel the pain of those challenges, and the reality of what could have been. And today I stared it down. I answered those questions. I managed not to shed a single tear until tonight as I write this.

People often praise special needs parents for their strength in adversity, their diligence and their insane ability to keep going when everything is stacked against their children. But just know that is usually the face we put on. For lack of a better analogy call it our ‘game face’. But sometimes, when the lights are out, the day is done and the fight is over – there is nothing left but tears. Sometimes tears for joy, many times tears of pain/sadness/anger/fear. Behind that face of strength is usually a parent that needs a hug, or a glance of understanding.

Tonight, I held Superman in my arms after he ate and he snuggled against my chest and grabbed my shirt with his hand, and I looked at his content, sleeping face. All the worries and the fears washed away and so for that I cry tears of joy and content because I know that no matter what tomorrow holds, I will be holding him and together we can all be stronger.

And tomorrow I start an email to a congressperson to let them know that for a child that has stated multiple disabilities and documented brain damage, its just cruel and unusual punishment to mandate that parents even have to look at that form. Just cruel.

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The Surgery

I figure since it has been a while since I have been here, I should start with the event that halted the blogging. The Surgery. Yes, it was a big enough of an event to gain the rights to all capital letters. I thought I would share our experience, but I don’t want to frighten anyone from getting a g-tube, because despite all of the issues we had, NONE of them were from the ACTUAL G-tube or the 15 minutes of the procedure from that. It was everything else!

We checked into admitting at 6 am, sleepy but ready to go. Once they finally got us upstairs and in pre-op, we waited and waited and waited a bit more. Thankfully they have wi-fi.
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Luckily, one of us got to sleep through pre-op.

Once the nurse came to do vitals, she took his temp, which we told her would be low. And she did his SPo2 stats as well as his heart rate. It was 50. She noted it and was a bit concerned but we told her it was normal so she finished up. The surgery was scheduled for 8 am, so the surgeon and the anesthesiologist came by around 7:45 am to do the paperwork and consent forms and go over everything with us. They saw the heartrate was 50 and became VERY concerned. Apparently, anesthesia drops your heartrate (I knew it depressed your respiratory system which would be the reason for the intubation) which would mean for Superman, if his rate began to decline there would be nowhere for it to go but for his heart to stop. So the surgeon requested a cardio workup before he could be cleared for surgery.

Luckily, we got an awesome Cardiologist who came down and actually watched the EKG and ultrasound with us so she could immediately clear him since we were holding up the operating room. 8:45 am we finally got the go ahead. Superman’s heart is perfectly formed and functions properly… just slowly. It’s a neuro thing. Isn’t it always?

They took him back, and Mom and Dad headed to get coffee, in a rush because the procedure only was supposed to last about 15 minutes after they got him to sleep. We grabbed our coffees and headed to the waiting room. 30 minutes passed. 45 minutes passed. An hour passed. I started to freak out in paranoid mom fashion. Last thing we heard before they took him in was the risk of his heart stopping from the anesthesia, remember? Despite the clearing from cardio, I am FREAKING OUT. Finally about an hour and 10 minutes after it started, the anesthesiologist came and took us back to the recovery room. It took FOREVER for them to get the IV in him. Superman is beyond being a hard stick. We wouldn’t realize how hard until we were getting ready to leave.

So we walk up to his little corner of recovery and he is awake and fighting. He started this whole thing congested from the NG tube, then the pulling of the NG and the placement of the intubation tubes and then pulling them managed to work up some NASTY congestion. He was fighting to breathe, he was fighting the mask, he was just fighting mad! Which was kinda nice to see him reacting to something as awful as it was. The awareness factor had both of us happy. The fact that it was at pain was sad, but we were proud that he had awareness of the situation. In our world, that is crazy progress! Heartrate …. 150. Problem solved.

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He finally calmed down enough to let us get the mask off and just use ‘blow by’ from the hose.

Once we finally got upstairs, we found out we were in a double room. I know, I know, I sound like a hospital snob, but we don’t share rooms with other people. Go ahead, laugh. Let me tell you why. Superman has temperature control issues. He can go hypothermic in seconds. Walking into a clinical setting like a hospital or even a doctors office somehow magnifies that. I have always assumed its the air, and they keep it colder to keep germs at bay. Germs tend to multiply in warm air but not as much in colder air. Which makes me wonder why winter is always cold and flu season. I digress. So by sharing a room we would either burn the other people up because the first thing we do is set the temp at 80. Yes, we are super popular with the staff for that reason. They come into thaw out from the cold hospital then leave sweating. Or we would need multiple pieces of loud equipment to keep him warm. The nurses opted to give us our own room as to not put out the other family. We were thankful, and they would have been if we had stayed. They would have been kicking us out I am sure.

First order of business once we got settled in the Pediatric Surgical Unit was lab work. Anyone with Diabetes Insipidus, this is ALWAYS the first order of business to check sodium levels. He had gotten his emergency stress dose of cortisol prior to surgery so that wasn’t as big of a concern. With Addison’s disease, your body doesn’t make enough Cortisol which is the stress hormone. It increases when you are stressed to help your body deal with it. He has to take a synthetic version. He was ALL loaded up. First labs went well. First stick and done. Got the results back. A little high, 154. Redraw in 6 hours. Not uncommon for us at all and actually what I was expecting after talking to some others with DI.

Well so far so good. A little bit of a rocky start, but trucking along. He was doing fine with his tube, not in pain and awake and alert for the company that came by to check on him and for when his sister got there. But once everyone left, all hell broke loose. First it was the labs. The same tech came back to draw again for the 6 hour test. She was a bit angry that she had to redraw him and she let me know it. Of course she complained to me so I was angry enough at that point not to explain. Never complain about your job to a parent who just came out of surgery. Its not cool. Not cool at all. So she attempted to draw the same vein as before. Couldn’t get it to bleed so she informed me she was going to do a finger prick. I said no, told her to find someone else. She proclaimed herself the expert on hard sticks and said she WAS doing the finger stick. Fortunately, the nurses came in for shift change and also told her she was NOT sticking his finger and told her to leave. We finally got someone that could stick him. Results: 159. Fantastic. Sodium rising. Not good for us.

Well the sodium became the least of our worries because as the congestion worsened so did his breathing. He began to have regular apneas (episodes where he would stop breathing) and quite a few he became cyanotic (turning blue/grey around the mouth and spreading). We were draining and sucking out the secretions as quickly as we could and it wasn’t enough. Finally, around 2 am we (me and the nurses) said enough was enough and called Pulmonologist to prescribe some type of decongestant to help get all of this out. He had multiple breathing treatments and oxygen up to this point just to keep him breathing. This was probably one of the scariest nights of my life since he had gotten out of NICU.

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Secretions are nasty! I am showing this so you can see just how serious this got. The containers are both full of straight congestion. This is a byproduct of him being intubated. I don’t know if this is the norm but it definitely was the case for us. By this point I was ready to start calling him ‘Slimer’ from Ghostbusters.

Just to ease your mind if you found this post looking for information about g-tube surgeries. The g-tube is still awesome and we had ZERO complications from the tube itself. That was the saving grace of this visit.

By the morning after the meds finally kicked in, he was a new boy! The pulmonologist came in and couldn’t believe he was in the same room as the child in the chart from the night before. He signed off on him and everything was peachy on pulm’s part. They did leave orders for breathing treatments PRN (as needed).

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Everything looking good! Comfy, comfy.

Surgery came in and checked his site, it looked fantastic and they were also ready to sign off on him since the surgery was only supposed to be a 1 hour surgery and a 23 hour observation hold. (I think Superman must have laughed when he heard that because it just couldn’t be that easy could it?) Unfortunately for us, the mornings labs had come back: Sodium 160. So still high. Not good. Typical sodium levels are 135-145, but in his case since it is controlled by medication and he tends to run on the high side, we are comfortable with a little bit higher of parameters. 160? The absolute TOP of the parameters. 160 = Mom freak out mode. So we stayed.

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Get comfortable, looks like you are going to be here a while longer. 

So remember the part earlier about getting into it with the lab techs? Well, it continued into Day 2 as well. I took Diva home because you can only contain a 5 year old so long and I needed a shower and a nap. Dad took over and everything was going well, until Dad stepped out for a cup of coffee. If you haven’t noticed by now, this family is fueled by coffee. Completely. You would be hard pressed to find blood in my coffee supply. If I ever needed a transfusion, I would request that it be fresh, ground espresso beans brewed slowly. Well, so Dad stepped out for literally 10 minutes to grab coffee before the cafeteria closed and go figure, the lab tech must have been waiting because she KNEW she wasn’t allowed back in him room. He came back and there was a band-aid on Superman’s finger. He called the nurse and both of them were livid! Guess what? Sign on the door. Labs were from then on only drawn in the presence of a parent or nurse. Well the results came back skewed, of course, which is why we had been so adamant. Once Endocrinologist found out, he ordered them redone AND not to draw by finger stick again. I love our Endocrinologist. Sodium: 161.

Well the night was pretty calm, which was great because Dad was going to need to be rested up to deal with the next morning. Day 3 started feeds. Do you know how you feel when you have a sinus infection and all of that gunk drains into your stomach and you just feel nauseated and not hungry? I don’t think Superman was hungry because once they did the feed, he projectile vomited all of it back up on Dad. Well that pretty much summed up Day 3. Lots of projectile vomiting but he seemed to feel a lot better after that.

Sodium: 151 – headed in the right direction for home. We spent the night bored watching HGTV. Superman was not amused by their home choices. Waiting for the “h” word is always torturous when you get to the end.

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At some point he decided if he was going to be stuck there, he was going to do his best to get comfortable. He began pushing himself over to the side and sleeping like that. Who am I to stop him? He’s so cute!

Day 4 was long, but Sodium dropped into normal range: 144 and Endocrinologist restarted feeds and if he tolerated them and sodium stayed ok we could go. We packed up, prayed hard he didn’t throw up and got all the DME stuff done with the help of a great caseworker. Food stayed down and he was happy to have a full belly. Last labs came back, I held my breath when they told me: 134. We overshot normal. However, remember paranoid mom? Yeah, she’s the one that would drive everyday to get blood work done to make sure he’s staying in normal range if that was needed. So he let us go home with labs on Monday.

Oh and once they pulled the IV for discharge (we were lucky as the first and only one kept flushing the whole time!) we saw what took so long for the surgery. There were 8-10 attempts to get the IV in. When I said he was a hard stick, I really wasn’t kidding. But at least I know now that something traumatic didn’t really happen that maybe they didn’t tell me about.

Phew! I am soooo glad that’s over! 

Moral of the story:

Superman does NOT tolerate getting intubated well.

No decision for surgery will EVER be taken lightly in this house (not that it was before, but now we know how severe it can get!)

I’m Sorry

I am so sorry I have neglected the blog for a bit. Its been a bit stressful around here with life in general and trying to get everything scheduled and rescheduled for surgery to take place since two days are being filled with hospital time. With Diva at home and his busy schedule plus regular appointments its been crazy! I didn’t think I would be that worried about the surgery. Of course that is when I thought they were just going in and making a cut, sticking the tube in and calling it a day. Endoscopic tube placement where they take the tube down the throat and pull it out of the stomach is a tad bit worrying as a parent! The most worrying part is he will be on a vent and that ALWAYS freaks me out. Its most likely some PTSD from NICU, but I digress.

I hope you are all doing well and I will get back to updating the blog with awesomely informative posts shortly! Probably in the hospital when I have plenty of time to kill. I have a huge list of posts I need to make and many more rambling around in my head!

Love to you all from over here in Superman’s world!