Super Rare Surgery Complication

It appears that I have failed to update this platform since we were released from the hospital. Oops! We were released from the hospital the following day after my last post here. I guess the updates post-admission were fairly small and not worth using the space here. I don't know. Anywho...

It's been 89 days since Ethan's major surgery to advance his jaw in hopes to create enough airway space for him when he sleeps because of his severe sleep apnea. We've now been home for 2.5 months and the #1 question we get is: Did the surgery help?

The answer is semi-complicated, but the short answer is, YES, yes it has helped some. We can tell that he's a little bit more rested and his dark circles are not as bad as before; he's also not falling asleep the second he gets in the car anymore. The longer answer is: we aren't sure if it helped enough. His pulse ox still has him dropping into the mid-high 80's every night and he is still super restless. He might be getting longer stretches of sleep, but still not fully restful. We aren't able to have another sleep study done for 3.5 more months still.

Onto the super rare complication, because anything involving Ethan wouldn't be complete without something super rare or complicated attached to it. *all the eye rolls and sad faces*

About a week after we were released home, Ethan's mouth really started to smell. I mean, we are talking DEATH BREATH. It was awful; I could even smell it in my nostrils after I went to bed and needed to place Mentholatum in my nose to not smell it anymore (a trick I learned from visiting the slums in Kenya).

Ethan is not the most compliant when it comes to oral health, but Scott and I tackled getting into his mouth to see what was going on. As I brushed gently, I pulled up on his upper lip so I could see his upper teeth. Then, I saw it. "Well, that's the problem", I told Scott. Ethan's gums in the upper right quadrant were WHITE. I didn't feel it was thrush or some funky gingivitis that you read about when searching Google for "white gums". Something was obviously wrong so I wrote to our surgeon, pediatrician, and dentist.

We saw our pediatrician the next day and he confirmed it wasn't thrush. Our dentist had no idea what was happening. Our surgeon wanted to see him.

Once our surgeon was able to see Ethan's gums, he confirmed that the gum tissue was necrotic. That's DEAD for all of you non-medically termed people. So, he did in fact have death breath.

The SUPER DUPER RARE complication from surgery was that for some unbeknownst reason Ethan lost blood supply to that quadrant of his mouth. Our surgeon had never had a patient with this issue and the oral surgeon that he consulted with has only seen in 3-4 times in his 40 years of practice. The good news was that his palate was still pink and I could still get blood if I aggressively flossed his teeth in that area. We had hope that the tissue would slough off and regenerate, but he was now at a high risk to lose all of those teeth in that upper-right quadrant.

I took Ethan for another surgical follow-up on November 28th. The odor in Ethan's mouth is still there, but not as potent as before so our surgeon took a peek and took his finger to the white surface only for it to crumble off into his (gloved) hand. We now have exposed bone and an even higher probability of losing the teeth, but we still had some hope his teeth would be ok- especially because he doesn't chew on food; he does chew on his cloth, but we have noticed that he only chews on the LEFT side.

Our surgeon mentioned that there has been great success with tissue regeneration from hyperbaric oxygen therapy  but can we all agree that there is NO WAY that Ethan is going to lay still inside of a chamber? Yeah, no.

The odor coming from his mouth was starting to get pretty strong again, so Scott and I tackled his oral care again last night. I've actually been afraid to brush his teeth out of fear that his teeth will crumble in my hand, but we had to do it.

I brushed his teeth the best I could and felt to see if any of his teeth were loose. They ALL are in that quadrant. My hope is lost; Ethan is going to lose a quarter of his teeth.

I'd like to say that I can focus on the perspective that Scott keeps trying to remind me of- he's here. Toothless or not, he's here. Would I rather him have teeth or be alive? I know, I know. I'm just having my moment as I think anyone in my place would.

This complication also puts him at a high risk for an oral infection which could be super dangerous.

The other rare complication was the pressure sore on Ethan's head that completely scabbed over and caused pressure alopecia. He does have some new hair growth beginning, but I doubt it will ever all grow back.

So, that's it. Ethan has a huge bald spot and it going to be missing a quarter of his teeth, but he's here and (seemingly) resting better, so there is that.

I think that we can all agree that Ethan has been through ENOUGH. He deserves a BREAK. No more. Please, no more. Lord, please, no more.

Day 13 - ALMOST DONE!

Well, if this doesn't just make you get a lump in your throat, there's something wrong with you 😊

Nothing too major happening around here the past couple of days. Well, Ethan sitting up on his own is pretty major, I guess. We've even got him out of bed the past two days, along with PT/OT help. Ethan is super weak from being sedated/in bed for so long. He's lost a lot of weight even though I've had him on full feeds for over a week. 

Ethan finished his last dose of Zosyn tonight, so we are keeping our fingers crossed for a discharge tomorrow. The powers that be are concerned for his safety, as they should be, but both Scott and I feel that we need to get Ethan home where he can roam/crawl/scoot in his own home to get stronger in order to walk again. The therapists have shown us the stretches we need to do for him so we see no point in keeping him inpatient just for a 30 minute/day therapy session. There was discussion to send him to inpatient rehab at Levine in Charlotte, but thankfully he did so much better on his feet today than yesterday so the PT really thinks that he will continue to get stronger the more he's weaned off of the methadone and ativan. We can continue to wean him at home with a schedule from the pharmacy and he can continue the flagyl for the C.diff at home as well.

I have asked about possibly getting some nursing help once we go home, but I'm not sure it's going to get approved. We did get a pulse ox approved finally, so we can pick that up tomorrow. So far tonight, he's sitting at 100 sats on room air. What a difference a week can make! 

We were moved to another floor at 5:30am this morning because they needed the room for babies, I guess. I was none too thrilled, but we had one of our most beloved HEMOC nurses waiting for us upstairs when we came to the adolescents floor. One thing is for sure- our rooms keep getting bigger. haha

Here's to hoping for home tomorrow. Ethan wants to be home. I want to be home. My back wants to be in a real bed. Cora NEEDS us all home. Tomorrow. Please let it be tomorrow.

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...