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. 

Blessed, but angry

Cora turns ONE tomorrow!  What a joy she is!  It's crazy to think of how fast time is flying by!  We are loving watching her explore and learn.  Ethan's development was much more delayed so Cora's seems to be quite advanced and accelerated!  We are loving every minute of it!

So, one year ago today, I headed to Women's Hospital of Greensboro to check in on my friend/client who was in labor.  I had made arrangements for a backup doula from the very beginning because of how close our due dates were (hers:  3/31, mine:  4/4).  When she called to tell me that her contractions had begun, I called the backup doula since I was having steady braxton hicks contractions whenever I stood up or exerted myself.  Because of that, I felt that my client would be better taken care of with a doula that could be more hands-on.  I am pretty possessive over my clients- meaning, I've bonded with them and I want to be with them the entire journey- so, making the call to the backup was not easy for me to do, but client's best interest comes first.  The morning of the first, I felt great and was itching to check on my client so I planned to go visit and give some emotional support for a couple of hours and maybe give the backup a chance to step out and rest and/or get something to eat.  As I headed out, I assured my family that I was only going to check on my client and that I'd be home in a few hours.  But, 15 minutes after my arrival, the backup doula checked out.  She didn't say anything to me about how labor was so far or even that she was leaving for good.  She told my client "good luck" and left.  Right then and there, I wasn't leaving.  I was not going to leave my friend/client.

A little after 10pm that night (4/1/14), I started having contractions.  No one knew, they weren't unbearable by any means, more of an annoyance.  I didn't want to say anything and distract away from my client's birth.  But, after baby was born {Happy Birthday, Gabriel!!!}, I excused myself earlier than usual because I was 45 minutes away from home and I needed to be home if labor was going to kick in for me.  After a contraction-filled drive home, I was home and felt that I could relax a little.  If I had only known Cora had other plans...

While I love Cora's birth story and it's wildness and the fact that I was able to be with my friend/client to welcome her son, I find myself angry.  I am so angry that my client was left.  I am angry that I was left.  I am angry that someone would think that a 39w4d pregnant woman was ok to leave to do hands-on doula work (any doula knows how physical the work is).  I am angry that because I was so far away from home, I didn't have those last moments with my family before Cora arrived.  I am angry because my doctor thought I had a home birth intentionally and that I "pushed the envelope".  I am angry that Cora's birth, while beautiful, was traumatic. 

This past year, I have tried to figure out how I can get over it.  Yes, I've prayed.  No, I haven't had contact with the backup doula- I am that hurt and angry.  I have found myself, randomly, in tears because I let my mind wander to the "what-ifs" of that night.  My doctor made me feel like utter crap and that I purposely put my daughter at risk by having a home birth.  I have had to remove myself from my local doula circle because the backup has become so involved in it and I just can't deal.  I can't deal with the fact that I know what she did to me and my client and can't say anything about it because I'm always the bigger person.  I've waited for her to reach out and and apologize, but that's obviously not happening.  I refuse to take the first step on this one.  I feel that it may end up getting me more hurt and, possibly, more angry.  I'm not an angry person, but this whole situation has rocked me to my core and I just don't know how to deal.  I know I am supposed to forgive, but I haven't been able to be at that point yet- it's all still too raw, even a year later.  Anyone who I have confided this to {very few} know that I cannot talk about it without crying.  I'm not sure I've ever had something affect my emotional well-being so drastically as this.

Thank you to those who have been so kind and supportive in regards to this, namely, the Hubs.  I welcome your prayers for peace.

Cora's Birth Story

I am sitting here in my trusty recliner, looking over at our beautiful 3-week old daughter, needing to write down the events of her birth.  I've wanted to do it right, make it special, make it creative, but really- the fact that she was born at home was pretty special.  But, here we go...

*****

Cora Lynlie Faulkner's Birth Story

My estimated due date was April 4th, 2014.  I never thought that I would make it to that date- heck, I never thought I would make it to April!  I had hoped for March 31st simply because Scott had proposed to me March 31, 1998.  I thought it would have been a really awesome "full circle" way of completing our family.  I wouldn't be upset or anything if it didn't happen, I just thought it would be a cool story.  I did NOT want an April Fool's baby.  My cousin's birthday is April 1st and I just wanted our baby to have her own day.

March 31st came and even though I was having a lot of Braxton Hicks contractions, it just wasn't going to happen.  So, I planned to take it easy on April 1st so as to not press my luck with her arrival on the day I was really trying to avoid.  I had a client/friend who was due March 30th that I had arranged to have a backup doula along with me if I was still pregnant when she went into labor.  My client ended up heading to the hospital the early morning of April 1st after a couple days of early labor at home.  Since I was still pregnant and very  close to my own onset of labor, the backup doula was with her.  I decided that I would go to the hospital to check in on her progress and offer emotional support.  Her hospital was 45 minutes away from my house and my mom was NOT happy about me leaving to go so far away from home.  I figured that I was going to a women's hospital where they deliver babies every day, so worst case scenario, I was good.  I arrived to the hospital to find my client laboring beautifully and the backup doula working well with her.  Then, about 15 minutes after I arrived, the backup doula decided to leave.  This meant that I was not leaving my client until her baby was born.

I began having contractions while with my client.  They weren't anything that screamed to me that it was my time- they were more annoying than anything.  I could talk through them and I never let on to my client that I was having them.  To me, there was no need since they weren't keeping me from doing what I needed to for her.  Around 11pm, client and her hubby were resting so I did as well.  It was during this rest time that the contractions were actually gaining intensity.  Client's beautiful baby boy was born at 11:58pm on April 1st.  Normally, I stay with a client for an hour or two after delivery, but due to my contractions, I excused myself early.

I left the hospital at 12:45am, got in my van, and immediately called my sister (Kamrin) in California to distract me from the contractions on the drive home.  Sitting was not my friend.  The contractions gained intensity during the drive.  I got home at 1:30am and decided to labor over the toilet for a bit.  After 15 or so minutes, I was over that so I climbed onto my bed on all fours so I could rock my pelvis and relieve some pressure.  That didn't last long before Scott woke up and I was able to tell him that baby girl was coming.  Scott hopped up to get stuff ready and asked me what I wanted.  I said that I wanted to get in the bath.  While Scott drew a bath, I called Katie- my dearest friend and doula partner.  Even after talking to Katie, I knew that I was in labor but still thought we may have a bit of time before needing to go to the hospital.  

I climbed into the warm bath and was immediately more relaxed.  The contractions weren't stopping and were definitely intense, but in between I was talking like nothing was happening.  I even started shaking- a sign of transition, but the fact that I was still talking in between threw me off.  Katie arrived at 2:45am and I was still in the tub.  She looked at me, listened to me, and immediately said "We need to GO.  You're in transition!  We need to get you to the hospital."  I agreed to go after getting through one.more.contraction in the tub since I knew one was rapidly approaching.  With that next contraction, at 2:50am, my water broke.  I remember yelling that my water broke, asked if the fluid was clear (it was), and said to mark the time.  As soon as the contraction was over, everyone was rushing to get me OUT of the bath, dressed and ready to head to the hospital (my Mom will tell you that she knew that we were never going to the hospital to have the baby).  I wanted to pee first...

While on the toilet, the pressure was intense.  My mom and Katie were both telling me to GET OFF of the toilet.  I think my mom was seriously afraid that I was going to deliver the baby in the toilet.  As it turns out, she had valid concerns.  As soon as I stood up from the toilet, I felt her.  I reached down and could feel her head.  To the floor I went and to the phone for 911 my mom went and I hugged my bathroom cabinets like my life depended on it.  My mom called 911 at 3:09am and was incredibly calm while relaying everything to the dispatcher, and after some significant screaming on my part, Cora Lynlie Faulkner was born at 3:10am on April 2, 2014.  Scott was behind me and Katie caught Cora.  Cora's cord was wrapped around her neck and around her body twice.  Both Katie and Scott worked together to get the cord unwrapped.  They were incredibly calm and handled everything so well.  The 911 dispatcher talked my mom through everything for Scott and Katie...and, me.  

EMS arrived just under 10 minutes after Cora was born.  By the time they checked her, she had pinked up from her original blue.  A little joke- when I asked what her APGAR score was, they said that she was a 12!  My little overachiever was given a score of 12 when APGAR scores only go to 10!  HA!  

Hello, sweet baby girl.  That was quite the entrance you just made!

Daddy cutting the cord with a scalpel from EMS

Proud Daddy.  Yes, I am still on the bathroom floor back there.

He can finally breathe and laugh.  :)

I had joked throughout most of my pregnancy that I was going to deliver at home.  I loved the idea of a home birth, but I was considered "high risk" and no one would have ever signed on for that responsibility.  With that said, it was NEVER intentional for me to have this home birth.  Just because Katie and I are doula's doesn't mean that we are irresponsible or negligent purposefully.  We are not the doula's who pass themselves off as midwives (big NO-NO!).  We happily tell clients that we do NOT do medical procedures and that if it requires gloves, we don't do it.  :)  With that said, if the roles were reversed, I would have no hesitation in doing what needed to be done in order to deliver a baby as safely as possible and that's exactly what Katie did.  While many women have unassisted births all of the time, that was never in the plans for me.  It may make for a fun story now, but I want to be clear- we had NO idea that Cora would make such a rapid entrance.  We had a strong suspicion that her entrance would not be long since Ethan's birth was also fast, but Cora's labor was so much different than his and that ended up suspending a quicker decision to go to the hospital.  In hindsight, I should've gone straight to the hospital after leaving my client.  But, let's face it- if I was able to drive home, surely I wasn't close to delivering, right?  Guess not.  Even if we had left for the hospital when Katie first arrived, we wouldn't have made it; we would've had a baby mid-route in the car.  We were safer staying home and letting EMS come.  We are eternally grateful that everything ended well and that both Cora and I are good. 

EMS gave me over a half an hour to deliver the placenta.  I was having intense contractions again but no sensation to push.  I didn't have any of that with Ethan's placenta.  The doctor just "guided" it out and I didn't have to do a thing, nor did it hurt.  This beyotch of a placenta had other plans.  It retained.  That means that it would need to be manually extracted.  Scott needed to drive to the hospital so I wanted my Mom with me in the ambulance.  I thought she would ride in the back with me, but she had to ride in front.  It did bring me some comfort having my Mommy with me through it all.  So, I held Cora as we were taken to the hospital via the ambulance.  Holding Cora, having way strong contractions without any way of moving positions, having an IV placed in the ambulance, all while on a bumpy ride was no picnic.  We arrived to the ER and all I could say was, "Get it OUT!"

Before leaving home for the hospital, Mary was holding Ethan.  All of the commotion woke him up (ya think?!?!?).  He had seen his baby sister for the first time and even signed, "Hi, baby."  As soon as Mary told me that, I started to cry.  My sweet boy.

Ethan meeting his sister for the first time

 

Sweet smooches from my boy

This.  The moment after I was told Bubs signed to his sister.  Overwhelmed with emotion in that moment.

Lighting up the neighborhood.  BOTH of my children's first car ride was in an ambulance.  :/

Retained placenta can kiss it.  My doctor arrived to my room and had to manually remove beyotch.  Yes, I was turned into a human pumpkin being scooped out for Halloween.  That was excruciating.  I could've given birth to Cora again, happily, before ever wanting to feel that pain again.  

Once Cora was checked out and given a clear bill and I no longer had beyotch taking up residence, we were all able to breathe and say, "Holy bleep.  That JUST happened."

♥♥♥

Katie doesn't want a big deal made of what she did for us, but I will just say that she was a rock.  I know that Scott and my mom were able to remain as calm as they were because Katie was calm.  Even though we aren't in the delivering babies ourselves business, we do see birth a lot more than anyone else that was in that bathroom and her experience kept everyone focused.  Thinking of the "what-ifs" has affected both of us.  It has been quite the emotional roller coaster when thinking of the events and honestly, they are traumatic for all of us.  Shoot, her having to see and hear me in the moment of birth earns her mad props and if we weren't close before, well- we are now!  :)  {Love you, Katie!}

So, there you have it.  I am so thankful that my Mom was here, that Mary arrived just in time to be here with Ethan, that EMS was fast, for Katie, and for Scott.  We ended up making a pretty fabulous team.  

*****

Cliff's Notes Version

• annoying contractions started evening 4/1
• intense contractions started early morning 4/2
• labored 30 minutes or less in the bath
• water broke in bath 2:50am 4/2
• baby born on bathroom floor 20 minutes later 3:10am
• Stats:  7lbs. 10oz. 21"

 Next up...how to cause a major sh*t storm at the hospital.