Day 11

Sorry for the lack of an update yesterday; yesterday was HARD. It was possibly the hardest day yet. It started at 1:30 am when our PICU room was needed for another child more urgent than Ethan's needs, so we were moved to intermediate care at that time. Thankfully, we were only in that closet of a room for 9ish hours before being moved to the 8th floor in a private room (yay, my own bathroom and shower!!!). 

Why was it so hard? Withdrawal. Watching your son have withdrawals from the narcotics that kept him sedated for the 10 day stay in PICU is HARD. He was sweating profusely and shaking. He also cried A.LOT. yesterday. I can be Mama Bear all day long when it comes to taking care of my boy, but the second he starts crying, I am a puddle. I cannot take it. Just thinking about him crying makes me cry. Plus, I was entirely too exhausted yesterday to keep any of the emotions in. I was snippy and irritable, I admit it and I apologize to anyone in the crossfires of that.

Sweet kisses from my Bubs

We've determined that most of the crying came from tummy pain because he finally pointed to his tummy when I asked what hurt. His Prevacid had been stopped because the pharmacy said that it would interfere with his C.diff meds/recovery, but it was started again today so I don't know...

Snuggles with Sissy

Scott has brought Cora up the past few days and last night and today she was able to climb into his bed and be close to him. He's not objecting too much.

Progress and able to hold his new gifted spatula

Today has been better. His sweating was minimal and his tears I can link to being bored or pain in his tummy and/or hips. PT came by today and Ethan has a bit of a road ahead of him as far as rehab is concerned. He has lost a lot of muscle mass/use and will need a bit of help to get it back. It was mentioned that he may need inpatient rehab at another facility. Let's all pray that he makes some major gains while we are here so that he can come home! His hips are super tight and he is obviously in pain when they are manipulated. We did get him on his feet twice today- once with me and Scott and another with the PT. He cannot bear weight on his own at all. He is frighteningly thin. I hope to maybe share a before and after picture one day, but not yet.

As far as surgery goes, he looks great. We won't know for a good six weeks and another sleep study how successful it was, but besides some remaining swelling, he looks great around his jaw.

Ethan's lungs sound clear and are doing well according to his RT's. He is still needing 2L of oxygen when he hits a deep sleep, but not for long. We may come home with a pulse ox and nasal cannula to have on-hand for any middle of the night desats.

We cannot be discharged until at least Monday as Ethan's pneumonia IV meds have to be given through Monday. I just don't know if it's a Monday morning dose or evening dose. If it's evening, Tuesday morning will be our earliest discharge possibility.

Lastly, we MISS our PICU team! Man, it's like going from First Class to Coach! We, ahem *I*, really miss them all. How do we begin to thank them? Send me ideas, please. Seriously.

Ok, I'm going to try and go to bed early. Praying for miraculous improvements.

9/27 Update - PICU Day 9

Short and sweet update as not much happened today. Ethan was weaned off of the precedex and started on a clonapine patch and ativan to help alleviate any withdrawal symptoms.

Lungs sound good, but he still has to cough some nasty coughs. We were able to suction some of the secretions and jazz that he was coughing up which was good. He does have some labored breathing, but is on room air with only blow-by oxygen on standby if needed. He has only needed the blow-by a few times for some isolated desat moments.

He has held on to a low-grade fever and an elevated heart rate. Both could be attributed to withdrawal or the lingering infection- maybe both. We don't have a sure way of knowing.

So, withdrawals...the most obvious withdrawal symptom he has are the shakes. When he goes to lift his arm up, he shakes like a person with Parkinson's. It's super sad to see. He also has like a blank stare when he's looking at you, but he's trying so hard to maintain eye contact. The other withdrawal symptom is sweating. Not profusely or anything, but just a nice salty dew across his forehead.

This morning, when the surgical resident came to visit we talked about the casts. She was not under the impression we would be going home with the casts on and I was, but over the course of the conversation, we wondered if there were any splints that could be made that would be removable for showers and sleep, as well as lighter in weight. Well, a wonderful OT came by and made him some splints and they are awesome! Best thing is that they will last so we can use them in the future for things to keep his arms secure (ie. sleep studies).

He is getting used to his new mouth. I think he thinks that his tongue feels funny and Dr. Runyan thinks it's also likely. He looks really good, especially compared to a week ago!

Now that the breathing tube is out, I told Scott that Cora could come visit. I posted a video on FB with their reunion. It's really precious if you haven't seen it. Cora didn't want to leave because she missed us and she wanted to stay here with me.

Just a little while ago, our nurse was wondering if we could be moved to the floor tonight, but after some discussion, they've decided to keep us here one more night and move in the morning. We will have to stay on the floor for 3 or 4 more days while Ethan finishes out his Zosyn antibiotic for the pneumonia.

Lord willing, this is the last update from Room 625 in the PICU.

Extubated!

I'm sure that if you are following me on my other social media platforms, you already know that Ethan was successfully extubated today WITHOUT any complications! :D He was groggy, but awake.

His oxygen started at 4L and quickly made its way down to its current .5L setting. His sats are holding steady above 95 and really only drop if he needs suctioning. He is coughing well on his own and getting the junk out! He's also tolerating the nasal cannula fairly well so far. I imagine once he wakes up more, that will change.

He is fighting to get up, which we expected, but it could make my night with him pretty long.

It seems crazy to hope that he sleeps tonight considering he's been asleep for over a week, but he needs to get his sleep cycle regulated. So far, he's back to resting and the resident is ok with giving some melatonin to help if we need to. I'm hoping we don't have to do that though.

So, here's to a restful night for us and CHEERS to a successful extubation!

9/25 Update

Ok, so I just did a LIVE video on Facebook with most of the update, so here is just the written version.

Today was super emotional for me. Maybe it's that we've been in here a week now; maybe it's because I miss my baby girl; maybe it's because Ethan caught C. diff; maybe it's because I haven't had much consecutive sleep (though, our nurses are AMAZING and don't bother me at all during the night); maybe it's because I'm overwhelmed; maybe it's ALL OF THE ABOVE. Ok, it's likely all of the above, but I did step away for a shower (the floor has a section for families in the ICU to be able to rest/shower) which always makes me feel better.

Besides the whole bomb of the C.diff finding, Ethan had a really good day. He has been comfortable and well sedated. He did wake up for a brief second when I kissed him on the forehead to tell him I loved him and he made eye contact before drifting back to sleep. I said on FB that it was his reassurance to me that he's ok and that he knows I am here.

He was started on flagyl for the C.diff and he may have had a minor allergic reaction. His upper lip looked like a bee stung it so they gave some benedryl and I think it looks a little better. Watching.

His skin color is also leaning yellowish. Could be the lighting, maybe, but a panel for his liver will be ran in the morning.

Ethan has had a fever all day that hasn't budged.

His poor legs have lost muscle mass already. They're just little chicken legs. I've been giving him his feeds, but I still think he's lost weight from the loss of muscle.

This is the plan as of right now:

• Start propofol and stop versed and morphine. Propofol has a shorter "life span" so he won't be as sedated when it comes time to remove the vent.
• Continue precedex
• Continue methadone and ativan to ease any potential withdrawal symptoms from the long-term sedative/narcotic use over the past week.
• Take the vent settings to pressure support. This will basically have Ethan doing the work and the vent will only kick in if he doesn't. He needs to be able to show that he can breathe on his own without the vent.
• Stop feeds around 4am. 
• If all goes well overnight, extubate around 10am tomorrow

I feel a tad nervous about the extubation. I should be doing cartwheels (ok, I should NEVER be doing cartwheels, but you get what I am saying) about him getting the breathing tube out, but there's just something about it that is giving me anxiety.

Ok, I stepped away in the middle of writing this and forgot to publish it. I don't know if I forgot anything. Until next update...

Wiley Day + More Bugs

Today kept us on our toes. My sweet Bubs is gaining tolerance to his sedatives (versed, morphine, and precedex). This meant that Ethan did his very best to try and wake up today, which we do NOT want him to do yet as it's just not safe since he is still intubated. Unfortunately, we had to up his sedatives in order to keep him asleep and add methadone and ativan in order to help counteract any withdrawal symptoms he would have once weaned off of the sedatives/pain meds. Once his cocktail was finally fixed, he's been resting comfortably since. 

*WARNING- poop talk coming*

Two things that I never thought I would see were done over the past couple of days. 

1. Rectal Pouch. It's exactly what it sounds like- a bag to catch poop that was connected to a collection bag like used for urinary catheters. 
2. Flexi-Seal. Click on the link if you dare. It will be better for the protection of his skin as he already has a bed sore on his booty.

Thankful to our consumption of Juice Plus for keeping him "moving" even on heavy sedatives and pain killers that are notorious for causing constipation.

*OK, poop talk over*

Two more bugs grew from his culture: 

Enterobacter cloacae Complex
Pseudomonas aeruginosa

So far, the Zosyn is enough of an antibiotic so nothing really changed with treatment with the two new bugs added.

Fever: It's still there. He is also busting out in random sweats, so they are "trending" the fever. An esophageal probe was placed to get an accurate temp.

Lung fluid: It's still there. Chest x-ray today looked like yesterday's. If that doesn't come off, he will need to have the lung tap that I wrote about yesterday.

Vent: his PEEP was taken down to 10 and they hope to get it lower overnight. He's also still on 30% oxygen.

If he continues to do well with the lower settings on the vent, then he will be given propofol and taken off of the other meds since propofol has a lower "shelf life" in the system. Then, if all goes well and he is well enough to take off of the vent, that will be done on Wednesday.

He's doing well, but those bugs are pretty serious bastards. He is not out of the woods yet, but it's looking promising.

CORA: She is super struggling. She did not want Scott to leave her at school today and Ann Marie (my friend who has been caring and loving on Cora since Ethan's surgery last week) says that she had more "sad moments" today, but that she was able to distract her. 

I haven't said thank you in a while and I'm sorry for that. Thank you to everyone who has prayed, visited, brought us food, answered the call for a salt lamp, lent JP vineyard...and, a special huge thank you to our surgeon and his staff, our nurses- OMG, the best!, our attending physicians, our respiratory therapists, and anyone else that is making this event the most comfortable possible. They care and they're listening; we've been very happy with our care. THANK YOU!!!

SIDE NOTE that's funny... 
We are low on Juice Plus Vineyard (Berries) because I've been giving Ethan so much and my shipment won't be here for a bit, so I reached out to some who I know have connections that may be able to help. I am surrounded by some of the most amazingly supportive people. My awesome team leader, my Mama Bird Sherry, has shipped us some but it won't be here until Wednesday. My amazing friend, Katie, has a bottle that we could use and we can just replenish her when our shipment comes. The only thing that was complicating was that Katie lives in Greensboro and I live in Winston-Salem. So, I pulled together some friends to get it to me. It's like I ran my own courier service today and that one bottle of Juice Plus has been all over like a piece of lost luggage, but I will have it tomorrow morning! LOL!

Katie → Kristen → Sonji → My house → Amy (neighbor) → Me at the hospital

If that doesn't show how important it is for Ethan to have his JP,  I am not sure what does! You should get you some! Just sayin'... ;)

Until next update...

We have a confirmed bug!

Hi family/friends!

We've had a pretty productive past couple of days! Ethan has been able to be weaned down to 30% oxygen from 65% and 12 PEEP from 14. His SIMV was also taken down to 10 from 22. His chest x-ray this morning was also remarkably improved.

They did a scan of his right lung (the problematic one) last night to check for fluid and he had maybe 1.5-2cm of fluid. They decided to not do a lung tap and continue on with the lasix for the excess fluid in his body. So far today, that has been working.

As the title says, the bug has been identified in his lung; and, it's a SUPERBUG! Because everything Ethan does is super! haha... he has >100,000 CFU's Acinetobacter baumannii. He was on Zosyvn  and Vancomycin, but infectious disease wanted to discontinue those and switch to Meropenem, but I had to remind them that Ethan is allergic to meropenem so ID went back to keeping him on the Zosyn.

Update on all of the other fun jazz:

• heart rate
• Still elevated, but nothing to worry about. He is fighting a pretty major infection
• oxygen
• As stated above, he's down to 30% and 12 PEEP (I think they are going to try to decrease the PEEP overnight)
• temperature
• Still low-grade, but nothing worrisome considering everything he's fighting
• blood pressure
• he went from low bp to much higher- his MAP is 100 right now, but they tell me a higher bp is better than a low
• urination
• peeing well, but still has the foley
• bleeding
• minimal
• swelling
• SO MUCH BETTER! His hand is still puffy from the infiltration it suffered the other day, but even that is getting better. 
• feeding
• we upped his rate to 100mL/hr from 80mL/hour. This gives him all of his same nutrition in a 24 hour period that he did prior to surgery.
• extubation
• possibly Tuesday or Wednesday. We have a lot to accomplish over the next day and a half to even think of that as a possibility for Tuesday.

He seems to be trying to wake up a lot more which means more sedatives to keep him asleep, but that also comes with withdrawal risk when the time comes in the next few days to extubate.

Scott brought Cora up to the hospital tonight so I could see her. We aren't allowing her in the PICU right now because we just don't think it's something she needs to see, but I was able to eat with her in the Ronald McDonald Room and snuggle for a little over an hour. I sure do miss my baby girl! 

Until next update...

9/22 Morning Rounds

Ethan had a really great night. His sats stayed stable and rebounded fairly quickly after respiratory therapy (RT). The fluid/secretions/blood being suctioned out of his lungs is a better color. I posted pictures on IG/FB that shows the swelling improvement. He's sitting up now and it is helping his sats, for sure. His PEEP was increased to 14 from 12, but his O2 was decreased down to 40% and his sats are 97.

So, what was discussed during rounds? First, let me say how pleased I am at the respect being given to me for involvement in Ethan's plan of care. The nurses or residents come to get me when rounds are about to begin and I am referred to for specific questions. I was even asked to inform some nursing students about what AAI is. I kinda love our current attending. She is unapologetically kick ass and feisty, which I love. But, she has a sincere heart- not just a bull. She entertains any questions I have, any crazy suggestions I have, and explains everything to me as to why we can or can't do something. Ok, back to rounds...

He did really well overnight. He also had some significant movement from his bowels (God bless the nurses- they told me to sit back and relax while they took care of it). Our attending was adamant that we needed to get him to poop. Enter LOTS of Juice Plus and Mag-Go Kids with a side of enema and we had success! But, she wants MORE. Shewwwweee!

We still need to get into the prone position, but because of the recent x-ray showing AAI we are waiting to hear back from the neurosurgeon on if/how we can actually do that. I wondered if we could use an inversion table to help move him around where he could almost be upright. They didn't think it was a bad idea, but no inversion table at the hospital. Darn.

X-ray shows fluid around the lung. An attempt to see how much fluid was difficult, but it's not enough to have to put in a chest tube so they are going to up the lasix in hopes to get that fluid off of his lung. He also definitely has a collapsed lung that they are diligently working to repair.

Ethan still has a fever of 102 degrees which is keeping his heart rate elevated. Blood pressure is most definitely better.

Speaking of heart rate- his HR could also be elevated because of the stress he's under. Makes sense.

Physical therapy came in this morning. He is going to be needing lots of therapy as he already started losing muscle mass after 24 hours. So, I'll be doing his "Jane Fonda's" like M'Lynn in Steel Magnolias to keep his muscles moving.

I have music playing for him and I have some books to read to him, too.

Ethan has been very well loved during this time, thank you all so very much. <3 p="">

9/21 Update

Today was a much less eventful day than yesterday into the wee hours of this morning. Due to stacking signs of infection and clouded x-ray, the preliminary diagnosis was given of ventilator-induced pneumonia inducing sepsis. I was semi-prepared for the pneumonia because the risk was there and I was aware of the risks post-op, but sepsis? Nope. Seeing how awful Ethan looked yesterday and then hearing that there is the possibility of sepsis...not my idea of a fun time. His cultures are not back yet. His WBC isn't indicative of a major infection like sepsis, but this is Ethan; he doesn't do things by the book of anything so the chance the cultures will grow back is still there, but they are leaning toward this just being pneumonia.

Ok, so here's what we are watching (recap and updated info):

• heart rate
• Ethan is typically mid-high 50's resting. He was sitting low-mid 50's until today. Today, he's in the 80's which could be indicative of pain. He is on Precedex which is known to lower the heart rate, plus he's been given a bolus of morphine and tylenol and his HR is still in the 80's. ~ Due to the infection and fever, E's heart rate elevated
• oxygen
• he is on the ventilator and has been sitting at high 90's and even 100 oxygen saturation level, but today he's dropped to 89-low 90's. They have upped his PEEP from 5 to 7 and upped his oxygen level from 30% to 40% (room air is 21%). They are getting ready to do a strong suction and bag him to really make sure his lungs are clear. ~ Oy, this one is all over the place. He's currently at a PEEP of 12 and 90%oxygen but that is mostly because he was really suctioned out and his lungs did not respond well. Prior to that, he was at 65%. If possible, they will decrease his O2 as long term heavy O2 can have adverse effects too. These levels will go back and forth while he goes through the lung therapy and is on the ventilator.
• temperature
• he's running at around 102 degrees ~he finally broke the high fever and is currently 99.2 degrees. It was close to 105 degrees most of the night.
• blood pressure
• it has been all over the place from elevated on day 1, to "soft"/low, but his MAP is fair ~BP has also been all over the place, but it did regulate today after doses of Albumin. It dropped really low this morning it was 65/37 and his MAP was 31 or something close to that. It's currently low again but only because he was moved and his body is redistributing fluid. I should see it come up gradually over the next couple of hours.
• urination
• they removed the foley yesterday to give his body a chance to urinate on its own, but he hasn't. They had to do an in/out cath this morning and released over 500 cc's of urine. They are giving him until later this afternoon to pee or else the foley goes back in. They are trying to avoid it to decrease the infection risk. He has been given multiple doses of Nubain to help with the retention. ~After scanning his bladder after 10 hours of not peeing, the scan showed over 600cc's so the foley was put back in and the nurses were able to get 650cc out (what a relief!). Lasix was added to his meds and he's been producing. He is not on any additional fluids anymore- only his feeds and flushes.
• bleeding
• Dr. Runyan came in this morning and assured me that the blood drainage from the mouth and nose are normal and expected. He said we can do an Afrin spray to help close off the flow, but his labs still look good enough; they are lower, but not transfusion low. ~my freak out moment was around 3am this morning when I noticed his right eye had blood collecting in between his eyelids. This was/is due to the proximity of where his surgery was and his ventilator being through his nose and the sinuses being so close. He also still has bleeding from his nose and mouth, but the color is changing which is good. Whether it's nothing to freak out or not, it was something straight out of a M. Night Shyamalan film. No thanks.
• swelling
• today should be the peak of swelling. It's pretty intense as you can see above, but normal. We are putting ice packs on his cheeks for 15 minute intervals. ~still pretty swollen, but slightly improved except for his left hand. The coband was removed from the left cast to relieve some pressure, but his hand looks awful and the nurse is very concerned and wants to cut the cast off. I said it was ok and that I would even do it if they couldn't get the ok from plastics.
• feeding
• we restarted feeds last night at a super slow rate and he has tolerated them fine so far ~we've upped his rate and he is still tolerating just fine. He's also getting quadruple Juice Plus. :)
• extubation
• won't happen until Monday, likely. He's still too swollen now and will still be tomorrow, so it won't be done then, and they don't like to extubate on the weekends with a case like this. ~definitely not until at least Monday considering our setback yesterday.

The attending doctor this morning wanted to prone him, but they got really busy today and weren't able to. The idea of proning Ethan made his nurse internally have an anxiety attack, but the doctor said she'd be in here to do it with her, so no worries. It just never happened. I guess we will revisit that tomorrow.

Our nurse pointed out a situation on the back of Ethan's head. I took a picture but my iCloud photos aren't loading so I can't post it just yet. They are calling in dermatology tomorrow just to make sure it's ok.

Here's to an uneventful night. I'm old and I'm not sure I can do another night like last night (I finally laid down at 4:30 am and docs were in here at 6...#yawn).

Concerns

Good morning.

Today, we have some concerns. They aren't anything emergent, but definitely something to be watching.

Today's swelling is definitely worse. Today should be the worst of it.

Ok, so here's what we are watching:

• heart rate
• Ethan is typically mid-high 50's resting. He was sitting low-mid 50's until today. Today, he's in the 80's which could be indicative of pain. He is on Precedex which is known to lower the heart rate, plus he's been given a bolus of morphine and tylenol and his HR is still in the 80's. 
• oxygen
• he is on the ventilator and has been sitting at high 90's and even 100 oxygen saturation level, but today he's dropped to 89-low 90's. They have upped his PEEP from 5 to 7 and upped his oxygen level from 30% to 40% (room air is 21%). They are getting ready to do a strong suction and bag him to really make sure his lungs are clear. 
• temperature
• he's running at around 102 degrees
• blood pressure
• it has been all over the place from elevated on day 1, to "soft"/low, but his MAP is fair
• urination
• they removed the foley yesterday to give his body a chance to urinate on its own, but he hasn't. They had to do an in/out cath this morning and released over 500 cc's of urine. They are giving him until later this afternoon to pee or else the foley goes back in. They are trying to avoid it to decrease the infection risk. He has been given multiple doses of Nubain to help with the retention.
• bleeding
• Dr. Runyan came in this morning and assured me that the blood drainage from the mouth and nose are normal and expected. He said we can do an Afrin spray to help close off the flow, but his labs still look good enough; they are lower, but not transfusion low.
• swelling
• today should be the peak of swelling. It's pretty intense as you can see above, but normal. We are putting ice packs on his cheeks for 15 minute intervals.
• feeding
• we restarted feeds last night at a super slow rate and he has tolerated them fine so far
• extubation
• won't happen until Monday, likely. He's still too swollen now and will still be tomorrow, so it won't be done then, and they don't like to extubate on the weekends with a case like this.

I've had a few moments of availability to educate some nursing and PA students which is always awesome. I respect that the team on board right now refer back to me for those teachable moments. They haven't discounted any of my concerns and take everything into consideration. Or, they explain why he's responding a certain way so I can be put at ease about it. So far, no "God complexes" from anyone caring for him.

+++HOLD PLEASE+++

Ok, I'm back. Ethan's sedative wore off enough for him to try to bolt up. Good thing my reflexes are pretty fast when it comes to him and that the RT was right outside and saw it and came running in, too. We got the nurse to bolus some versed and he's asleep comfortably again. We were even able to clean up his bloody mouth/face/nose since he was nice and asleep again. This boy and how he keeps us on our toes!

Ethan's MMA Surgery

Hello blog. Long time, no talk. This will probably be long because, well, I'm sitting in a PICU room with nothing to do but write (or read, but that will put me to sleep and even though I need to sleep, I just can't right now). ***I wrote that this morning and then got sidetracked through the day. Don't judge, LOL!***

Recap for anyone who doesn't know what surgery Ethan had done and why. Yesterday, Ethan had a maxillomandibular advancement (MMA) or bimaxillary advancement surgery for his severe sleep apnea. Common questions:

• Can't he just wear a CPAP mask? No. Ethan's sensory processing disorder/autism makes it impossible for him to be compliant with a mask.
• Wouldn't a trach be the next step? Typically, yes. Ethan is not typical, nor will he ever be typical. He still pulls at his g-tube site and actually pulls his tube out at times. If he were to pull at/out a trach, it could be more dangerous and life-threatening so a tracheotomy is a hard no.
• Sleep apnea isn't that big of a deal, right? Sleep apnea is a BIG deal. Your body is being starved of oxygen which you need to function. Your organs all need oxygen to function. If your organs aren't functioning, they start having problems. {If you have sleep apnea, eh hem- parentals!, please get treatment!}
• What about Boston? Boston/Cincinnati didn't work out, unfortunately/obviously. There were multiple reasons, but mainly insurance problems. Oh, and the fact that the fine print of the study would've excluded because of his lung disease and aspiration risk. So, I wasted a whole lot of time trying to make it happen when it was never going to happen. Moving on...

Ok, so after the initial "hell no" response from both Scott and myself in regards to the MMA, we were left with it being our only option left if we were going to make an attempt to better his life with minimal apnea. We didn't come upon this decision lightly and it kind of tore us up that this was what we had left to choose from, but at the same time, we are thankful that we still had an option left to try.

Yesterday, we checked in at 8am. We were told that the surgery would take close to and possibly even longer than 8 hours, so we anticipated him being wheeled back by 10am. This is how it went down:

• 0800 check-in
• 0940 brought back to prep. During prep, we are informed that Ethan's AAI x-ray screening that he did during pre-op last week came back POSITIVE for AAI (Report: Dynamic instability at the atlantoaxial joint, as evidenced by approximately 5mm of anterior migration of the anterior arch of C1 with respect to the dens on flexion, which is completely reduced in neutral and extension positioning). NOT welcomed news, but good to know before his neck would be manipulated in surgery. This made our surgeons job a wee bit more challenging, but he's pretty awesome and was up for the challenge.
• 1100 Ethan taken to OR
• 1200 1st update. All is well! Ethan is a pro and went to sleep without complications. They inform me that surgery began about 5 minutes prior to the call.
• 1300 2nd update. He's doing well. Nurse asks what color we'd like his arm casts to be. Since Ethan looks so good in orange or lime green, I give them the option between those colors (they chose lime green).
• 1430 3rd update. Doing great and everything is on track.
• 1630 4th update. Doing awesome! Surgery should be done by the next update. This was a pleasant surprise since we were gearing up for 8 hours and that would only make it 5 hours!
• 1721 5th update. Dr. Runyan comes out into the waiting room- surgery is complete! He was super happy with how things went. Zero complications. Minimal blood loss.
• 1800 My person, April, who came to the hospital and stayed with me ALL. DAY.LONG insisted I go to Snack 'n Chat for dinner. We still hadn't heard when Ethan would be moved upstairs, so I made sure the desk had my number and I headed upstairs for dinner. SnC was on the same floor as PICU, so we were close for when he was moved.
• 1930 Scott and I check in with PICU. Ethan is there, but they are still getting him situated.
• 2015 We are finally taken to see our boy. 

What we walked in to post-op. He looked so much better than what we had geared up in our minds.

I think that most parents of children with Down syndrome will tell you that their child eats through sedation. For whatever reason, they tend to metabolize sedatives differently and need a bit extra in order to stay sedated. Ethan definitely falls into that category. And, when he wakes up, he doesn't do this groggy, slow-to-wake business- he springs up. Well, that's not a good plan when you're intubated. So, even though he was on a cocktail of precedex, morphine, and versed, he still woke up and fought. Due to how he is with sedation, they ordered Nimbex, which is a paralytic. Once that was on deck, he was sleeping soundly and cooperated the majority of the night. Ethan's heart rate was low and blood pressure was elevated, but it was likely due to the stress of the surgery because this morning he actually had a "softer" bp (lower). Ethan has had blood running our of his nose like a faucet since yesterday, but it does seem to be getting better. Again, they say it's expected and nothing to worry about it. His blood is being checked daily to make sure he isn't losing too much blood and so far, so good.

I slept some overnight. Being in the PICU, the nurses do EVERYTHING. I'm just here so Ethan knows I'm here. I'm so used to having to do everything, but in here they actually want me to take a step back. It's a bit of a challenge for me as I still have to "supervise". I think tonight I will sleep better. 

I posted on Facebook that the PICU attending (who actually plays soccer with Scott every week!) was quite accommodating with my request to give Ethan his Juice Plus+. Some doctors don't know what it is and then you have to shoot through hoops in order to get it approved, so I am happy that it wasn't a fight at all. 

The foley catheter and arterial line was taken out this morning around 11am. Ethan still hasn't peed. They are giving him 12 hours, which is up in an hour. If he doesn't meet the deadline, the nurse will have to do an in/out cath to empty his bladder (at least he's sedated!). 

We were able to start feeding him again, SLOWLY, around 3pm and he's getting plenty of fluids by IV. 

Advantage #36081: I can hold my son's hand without objection. 😊

I'm sure I am forgetting something, but that's the main points.

This is Ethan tonight. The swelling has begun to take over and Dr. Runyan said it will be worse tomorrow. It's strange to see my underweight boy so puffy.

We have some thanks to give!

• Dr. Runyan and his team. We have certainly been blessed with a brilliant, amazing surgeon who also happens to be a phenomenal human in general.
• My person, April, who took the time off from work to sit in a waiting room with my freak show of a personality for over 8 hours.
• Ashley Donahue for bringing me the coziest of blankets because the waiting room was the freaking arctic tundra! #wemetatkimono
• Ann Marie Bernhardt for all of her help and care and spoiling of Cora while we are here with E
• Madonna Wright with Center Grove Baptist Church for facilitating to have Mitch meet us at the hospital to pray over Ethan and for checking in to know how to pray further. 
• John and Lauri Motz, our precious pastoral team from home in CA, for taking time out of their travels to pull over and pray for all of us.
• Katie Wilmoth for breakfast and a visit that also came with a neck and scalp massage. #bestdoulaever
• Dawn Hartman and Katie for organizing a meal train
• The staff at Cora's preschool for giving her grace and also giving the extra love to her while we are away
• Bethany Balsis for an amazingly sweet Facebook post that made our hearts humble and happy.
• Bill and Heather Bauguss for always being there for us to pray, provide meals, and ya know- rip up carpet/demo a bathroom ;)
• Sara Hara for sitting on the waiting room floor to play with Ethan before he was called back to surgery and for checking in this morning.
• Sherry Fitzsimmons for taking care of my Juice Plus customers for me
• Everyone who has checked in with me to see how we are
• Everyone who has commented/shared about Ethan in order to storm the heavens with prayers for a successful surgery. Keep them coming, my friends, they are working! We are so, so appreciative!
• Our nurses. They have been nothing short of amazing. They also led me in the direction to where I could shower, so thank you! My spirit has been refreshed, most definitely. 
• Our PICU attendings and residents. Goodness, they've all be great. 

 

The above pictures were taken a week ago. This was Ethan every day; tired, exhausted, grumpy, irritable, and miserable. I really hope and pray that pictures like those will be far and few between once he's recovered.

Again, much love and thanks to everyone who has prayed for Ethan and/or been a support to us during these challenging times. It takes a village, y'all. We love you.

CT/Endoscopy/Urodynamics/Surgeon

Ethan's had some tests over the past few months so we can move forward with the right decisions for his care/future. Most of these surround his needs to protect his lungs from continued aspirations.

May 10th: Urodynamics/Renal Ultrasound
Ethan was scheduled for urodynamics and left the office in an ambulance due to respiratory distress. We spent a number of hours in the ER to monitor his O2 levels and we were able to go home. Prior to the versed making him stop breathing, Ethan had a renal ultrasound. Results below.

ULTRASOUND OF RETROPERITONEUM/URINARY TRACT, 5/11/2017 1:43 PM  INDICATION: Q90.9 Down syndrome R32 Enuresis ADDITIONAL HISTORY: None.COMPARISON: No recent comparison, ultrasound July 2004  TECHNIQUE: Multiplanar real-time ultrasonography of the retroperitoneum and urinary tract using grayscale imaging, supplemented by color and spectral Doppler as needed.Study was technically challenging given patient's limited ability to cooperateFINDINGS:  . Right kidney: Normal size, contour, and echogenicity. No hydronephrosis or perinephric fluid. No shadowing stone or focal mass is identified. Length = 10.4 cm.. Left kidney: Normal size, contour, and echogenicity. No hydronephrosis or perinephric fluid. No shadowing stone or focal mass is identified. Length = 10.3 cm.. Bladder: Generous in volume with no bladder wall thickening. Post voiding imaging was not obtained. Vascular: Perfusion to both kidneys is documented with color Doppler.    CONCLUSION: Technically challenging exam shows normal renal echogenicity and size with no hydronephrosis.Generous volume bladder

May 11th: Endoscopy/pH probe

The following day, he went in for an endoscopy and pH probe. We were then told that his esophagus was covered in a white substance later to be proven to be candida. Due to the candida, we couldn't do the probe. It was also shown that Ethan's esophageal motility was poor and the plan for a nissen and G-tube was now off the table as having the nissen would potentially come with more complications than help since his esophagus has to be strong enough to push his own saliva through and if it's not, he could "pool" and aspirate. No bueno as that's why we are doing all of these tests.

Ethan was treated for the candida but also acquired another aspiration pneumonia that had to be treated with another double round of abx. I have a theory that Ethan is starting to build a resistance to the abx that treats his pneumonias. :(

July 19th: Sedated CT of the lungs
The Friday before this procedure was scheduled to take place I received a certified letter saying that the 3rd party authorization company had denied the approval for the CT and could file an appeal. Understandably angry, I made calls and got the approval.

Any time Ethan is sedated, I get nervous because of his history, but this was the easiest sedation ever. Maybe because it was such a fast procedure? He went to sleep well, woke up well, and was fully active within the hour.  Results below.

CT CHEST WO CONTRAST, 7/19/2017 10:24 AM

  

INDICATION: BRONCHIECTASIS ASPIRATION, KNOWN OR SUSPECTEDJ69.0 Aspiration pneumonia of left lower lobe due to regurgitated food (HCC) J69.0 Aspiration pneumonia, unspecified aspiration pneumonia type, unspecified laterality, unspecified part of lung

COMPARISON: Chest radiograph from 6/22/2017. CT of the chest with contrast from 2/20/2006.

  

TECHNIQUE: Multislice axial images were obtained through the chest without administration of iodinated intravenous contrast material. Multi-planar reformatted images were generated for additional analysis. Nongated technique limits cardiac detail.

  

Wake Forest Baptist Health Radiology and its affiliates are committed to minimizing radiation dose to patients while maintaining necessary diagnostic image quality. All CT scans are therefore performed using "As Low As Reasonably Achievable (ALARA)" protocols with either manual or automated exposure controls calibrated to the age and size of each patient.

  

FINDINGS:

  

Thoracic inlet/central airways: The thyroid gland is unremarkable. There are punctate calcific densities (series 3, images 15 and 27) in the right supraclavicular region, favored to be vascular in etiology and could relate to the patient's prior right IJ Port-A-Cath. There is mass effect on the posterior trachea and esophagus, related to aberrant right subclavian artery, which is better demonstrated on the prior contrast enhanced CT of the chest from February 2006. Soft tissue density in the right mainstem bronchus, compatible with mucus secretions or debris.There is cylindrical bronchiectasis in the right middle lobe. There is mild, less pronounced, bronchiectasis in the lower lobes bilaterally.

  

Mediastinum/hila/axilla: No discrete mediastinal lymphadenopathy, although evaluation is limited in the absence of IV contrast. Patulous appearance of the esophagus.

  

Heart/vessels: Normal heart size. No pericardial effusion. Three-vessel left aortic arch with aberrant right subclavian origin, better delineated on prior contrasted CT.

  

Lungs/pleura: No pleural effusion or pneumothorax. Minimal dependent atelectasis. There are tiny subpleural cysts located along the lung periphery and extending along the fissures, which measure less than 5 mm in size, and are upper lobe predominant. Thickening of the interlobular septa, predominantly within the upper lobes in the region of the most pronounced subpleural cysts. There is diffuse bronchial wall thickening. Focal solid opacification within the right middle lobe, and this area also demonstrates bronchiectasis and architectural distortion.

  

Upper abdomen: Visualized portions of the upper abdomen are unremarkable.

  

Chest wall/MSK: No acute osseus abnormality. No aggressive lytic or sclerotic osseous lesions are identified.

  

CONCLUSION:

 

1. Focal solid opacification within the right middle lobe with associated bronchiectasis and architectural distortion, compatible with sequela of prior pneumonia or other insult.

2. Upper lobe predominant subpleural cysts with associated interlobular septal thickening, favored to represent Down's syndrome-related interstitial lung disease.

3. Diffuse bronchial wall thickening is a nonspecific marker of inflammation, possibly due to chronic aspiration.

These results kind of made me have what we will call a "moment". I cried, a lot. Like, ugly cry tears. I even called our ENT on his personal cell phone at 9pm while he was out of town to go over it (he's the BEST!). Layman's terms on these results are: Ethan has lung damage and we need to keep it from progressing. The feeding tube is no longer a question, it's happening.

August 3rd: General Surgery
We met with Dr. Zeller again to discuss the feeding tube surgery. The only saving grace to keeping the G-tube on the table is if the upcoming pH probe shows that Ethan is NOT refluxing stomach contents (the acid is under control with Prevacid). High probability is that E will have at the very least a GJ-tube, but likely a J-tube. Dr. Zeller also brings up that we don't have to intervene at all. This was another "quality vs. quantity of life" discussion. NO. There is no way I could ever not intervene to keep his lungs safe. Nope. I hate the fact that we will be taking a love of his (food) away, but I love HIM and his functioning lungs way more than his love of pancakes. I want to have the surgery done ASAP before school starts. I don't want him to be dealing with the transition to high school only to be pulled soon after for the transition to a feeding tube, so I'd like it done before school starts if possible.

August 10th: Endoscopy/pH probe/Urodynamics
Because of what happened on May 10th, I requested that all sedated procedures now be done at the hospital with anesthesiologists directly overseeing care. Because Ethan is a complex case and needs to be sedated for things most wouldn't, we arranged to have GI and Urology coordinate schedules to see him during the same sedated event. We arrived to the hospital at 6am. We were going to be admitted for 24 hours for the pH probe.

Dr. Safta (GI) came out and said that Ethan still has candida on his esophagus. (Grrrrrrr....) We can't do the pH probe, AGAIN. He also may be developing Celiac disease (yay! ::sarcasm::). We discuss options and I've decided that we will move forward with a GJ-tube. Dr. Safta says that the candida and Celiac may be affecting the motility of the esophagus. She will discuss with Dr. Glock (GI) and Dr. Zeller (surgeon). I want it scheduled ASAP.

Next, Dr. Atala (Urology) comes out and says that they placed the catheters for the urodynamics study without any problems. Then, the information I had no idea about...the only thing they did was place the catheters- the actual urodynamics study had to be done at the off-site clinic. Ummmm, ok.

So, I've got to get Ethan over to the clinic while he has two catheters placed in him (urethra & rectum). I call ahead to request someone meet me outside with a wheelchair- what a freaking ordeal. Get in to the office, am told to go across the hall to check in. Go across hall to the adult lobby that is handling peds as well only to wait in a line that is going out the door. (Pick a number- 37, and they were only on 20) Ethan is showing signs of discomfort (hello, TWO catheters!) so I go to another window and ask how to get the process expedited. I'm told that the computers are slow and I just have to wait. That doesn't go over so well for me and I tell them that we just came from the OR and things are already in place so we need to be seen right away. They look him up and then tell me that our appointment was at 8am. Ummmmmm, who the freaking frack did that?!!?? We were still in the hospital then. The assistant nurse manager proceeds to tell me that there were other patient appointments for 9/10/11am. I'm sorry someone screwed up, but Ethan's next. She said it wasn't fair to bump the other patients. But it's ok to bump the kid with a disability with cath's already in place? Nope. Not happening. Ethan's next. End of discussion.

I was PISSED. There isn't any way to sugarcoat it. I dropped many "f-bombs" and an entire lobby of people were introduced to this mama bear.

The test was torture. They had to fill Ethan's bladder with fluid to check capacity and pressures. He had over 500 mL added and was obviously hurting, but he hadn't peed yet. They took the cath's out and still waited another 5 minutes or so to pee. I could tell that even after peeing, it sure wasn't 500 mL worth. After a small ultrasound that can measure the bladder's contents, it showed that he still had 350 mL left in his bladder. That's not good news. They need him to be at least below 200 mL so they had to re-cath him to empty his bladder down to 1mL.

It took 4 of us adults, including one man, to hold Ethan down for this test. It was torture. And, I don't know if these results are going to end in Dr. Atala saying we have to cath him regularly now. I have no idea. Results on Tuesday, August 15th.

Someone really messed up with the urology side of these tests/appointment and I let Patient Relations know it.

*********************************************************************************

So, I've really been struggling with all of this, like bad. I've cried so many tears, I can't understand how I have any left. I've not reached out to talk about it because I just cry and I don't want to cry anymore.  My heart hurts for my baby. I just want him to be able to enjoy life, you know? No more doctors/tests. Enough already. Just let my boy be happy.


{totally not proofreading this tonight, maybe another day}

  

Quality vs. Quantity

Last night on Facebook, I wrote: "For the first time ever, the phrase "quality of life over quantity" was spoken today. I'm not ok with that.{I'm going to have to write a blog soon to explain everything}

So, here we are. My blog...the place I used to frequent and haven't for almost two years. Where to begin? There's a long story short version, I suppose, but it will probably get to be long story long once I actually let my fingers start moving.

Way back when Ethan was a baby, he would cough after having apple juice. He could drink his formula fine, but apple juice would trigger him into a coughing spell. Fast forward to being inpatient during leukemia treatment and a doctor noticed this happen. 

"Has Ethan ever had a swallow study?"

No. 

Swallow study is ordered and dysphagia/aspiration confirmed with thin/nectar thick liquids {insert thickening agents here (Thick It/Simply Thick}. We've been thickening drinks for 13 years now. We've been pureeing food even longer as Ethan doesn't chew food or know how to manipulate food safely in his mouth. His food procession to swallow is rapid and can be quite unsafe if not watched carefully. Despite thickened drinks and pureed foods, Ethan LOVES to eat. He has quite the sweet tooth! He loves ice cream, yogurt, pudding, and most of all- pancakes. Due to rapidly progressing aspiration pneumonias over the past few years, we have since eliminated ice cream which is so sad. That boy LOVES him some frozen yogurt/ice cream! Ice cream was one of his first signs! He'd always been motivated by that special treat and we've had to take it away. 😢

Enter where we've been the past 8 months or so... Due to Ethan's severe reflux (acid is under control, but he likely still refluxes stomach contents), Ethan's GI doctor has suggested surgery- nissen and g-tube. This has not been a decision taken lightly and we still haven't come to a decision. We have been weighing over LOTS of info and seeing many different doctors.

GI: feels that for safe nutrition to be provided, surgery is needed.

Pulmonology: Agreed with GI at first, but since adding the shaker vest to our daily routine, she is on the fence as to whether surgery is necessary. Ethan has lung damage from prior aspiration pneumonias and we, obviously, want to keep his lungs from progressing with further damage.

Genetics: Notices that Ethan isn't growing/gaining weight which could be nothing as he's almost 16 and nearing end of growth or it could be that there's an underlying issue as to why he's not growing.

Cardiology: EKG was perfect and no murmur was detected. Cleared. :)

Surgery:  Surgeon recommends more tests which I will discuss more in a minute

pH probe: a spaghetti noodle-type probe to measure reflux over a 24-hour period. We will probably do this test inpatient with the anticipation that E is not going to be compliant in keeping it in. This way, we are where nurses can place it back in properly. The last time we had this done was over 7 years ago and the findings were that Ethan had silent reflux up to his sinuses. We have kept the acid under control with Prevacid, but it is likely that the actual reflux hasn't improved. It is highly possible that Ethan has been aspirating reflux.

Endoscopy: To see closer esophageal damage/esophagus function

Esophageal Manometry: Esophageal manometry is a test used to measure the function of the esophageal sphincter (the valve that prevents reflux of gastric acid into the esophagus and the muscles of the esophagus.This test will tell your doctor if your esophagus is able to move food to your stomach normally. The manometry test is complicated. Ideally, this test would be done on someone who is awake and able to follow commands as when to swallow. Because Ethan has proven to be non-compliant, it is suggested that his test be done sedated. It's not ideal nor perfect, but the only option for Ethan. Problem being that there is ONE doctor in all of North Carolina that performs this test on kids and he's in Charlotte. I don't mind driving there, but his wait list is a few months out. We are going to get Ethan on the books for the first two tests here locally and if our GI gets the info he needs from those, then we can cancel the manometry test in Charlotte.

So, what are we looking for? We are trying to figure out if 1) surgery is even necessary 2) if surgery is necessary, can Ethan still eat by mouth?

It seemed cut and dry- the nissen will keep things from coming back up (YAY!), but it's not that simple. It will also make getting things pushed past it a little bit tougher. This is why we need to know how his esophagus is functioning. We can bypass the nissen and only get a feeding tube, but that doesn't help him if the pH probe still says that he refluxes with aspiration risk. Then, the GI says that we can just bypass it all with a G-J tube. I'm not a fan of that option at all because this would require continuous feeds vs. bolus feeds. While discussing all of this with the doctor yesterday, I voiced my concerns about the fact that as Ethan gets older, things that bring him obvious happiness are fewer and fewer to obtain. Food makes him happy. The idea of taking food away crushes my soul.

"This is when you have to consider quality of life over quantity of life."

I understood at the moment what he was saying- what he meant, but it wasn't until I was telling Scott about it last night that it actually hit me the words that were spoken and what they actually meant. He was basically saying that if the tests come back telling us what we think they will, Ethan's ability to eat by mouth will have to be drastically reduced to keep his lungs safe (quantity). This will be a really tough and sad transition for Ethan (quality), and all of us. This is a long-term decision for Ethan's life and we don't take that lightly.

Moving forward, we just have to keep the faith that the tests will show definitive results that will help us make the decision easily. We welcome your prayers and good thought juju over the next few months as we make a decision. Ethan's a fighter and a trouper- always has been, always will be. This will, one day, all be a blip on the screen of Ethan's continuing life story.