Phew!

Yesterday was a bit rough on 6C. Ayden started the day with fussiness and ended with some respiratory distress. We first thought that he was being a bit overdramatic about teething, but as the day came to a close, signs pointed more closely to Methadone withdrawal. In addition to withdrawal, Ayden's right lung yet again accumulated fluid and suffered some collapse. His sats were all over the place, but clinically his coloring never changed to indicate more or less oxygen to his body. The decision was made to give Ayden an extra dose of Methadone and to put him back on the nasal cannula at one liter of oxygen.

We were supposed to go home today, but Ayden wasn't ready. Bryan always tells Ayden that his job is to tell us when he isn't ready for the next step, and Ayden spoke up. We are disappointed that we can't take him home today, but we are glad that we were in the hospital instead of at home-- only to return.

PRAYER REQUESTS:

• Ayden's right lung to fully inflate
• Ayden's right lung to rid itself of fluid (Ayden needs to pee to help with this!)
• Medications to be effectively and comfortably weaned
• Ayden, Bryan, and me to get a good night's rest
• Patience (for Bryan and me) and peace (for the three of us)
• Wisdom (for Bryan, the doctors, nurses, and me)

Though yesterday and last night were horrible experiences for all involved, today was much better. He had a few tantrums, but they were not nearly as often or as long-lasting. He has been resting comfortably for the first time in many days. Havilah was able to give Ayden a bath and change the tape job on his face without too much protest. She was able to wean his oxygen to half of a liter. Havilah is truly a Godsend; she has to put up with me. My mama has been here to help me smile and relax and to help Ayden do the same (no easy task, I can assure you). Phew!

Sponging my incision

Did I mention that I am not a huge fan of baths?

But Ms. Havilah, I don't like this!

AAAH! Not the neck!

The front wasn't good enough?!?!

Grancee, save me!

Ms. Havilah, did Mommy really think I smelled? Are you sure this is necessary?

Same Story, Different Day

Sometimes it's good to maintain, to remain the same. Ayden's chest x-ray looked the same. His saturations have been high enough to keep him off the nasal cannula. The doctors continue to wean sedatives. He is now at his normal home regiment of feeds, though he is not really taking the bottle quite yet. Ayden is in a good place today.

This is my newest WubbaNub, Dr. Baldwin.

Falling...

What are you people so happy about?!?!?
You are about to torture me!
(PICC Dressing Change with Courtney, Nicole, and Margaret)

 They are beating on my back again!
I have got to figure out how to inflate that lung!
(CPPD therapy)

 I am working on my form for my first snow ski jump!

 Aahh... Ms. Courtney is so pretty.

 I think I'm in love.

 I'm... falling...

 

... asleeeeep. 

That was just about the only sleep he got last night, which means that Bryan and I got none. Ayden is really struggling with this whole teething experience.

See Anything Different?

I'm on room air!
Thanks, Ms. Margaret, for going out on a limb to see if I could breathe on my own!

Please pray that I can keep the nasal cannula off my face!
(And not because I pulled it off!)

The real test will come tonight when I am in a deep sleep.
(Mommy & Daddy will lose it if I don't sleep tonight... after two nights of restless sleep!)

On Top of It All-- He's Teething!

Yes, Ayden is teething at the hospital (oh, joy!), and, as a result, he is chewing everything in sight (and crying at random times). Those hands that he didn't think tasted good... oh, they taste excellent now. He has even tried putting more than one teether in his mouth, which doesn't work out as well as he would like it to.

What You All Have Been Waiting For

Pink, huh? That all ya got? Well, I can still smile in pink!

HA HA! I surprised Mommy by eating 4ml of my Cheez-Its!
Ms. Denise told me that I made her day.

For two days I have been working pretty hard to cause enough of a ruckus
to make Ms. Courtney and Ms. Havilah visit me more often! I can tell Mommy loves the pulse-ox.

Ayden's Way or No Way

We haven't updated the blog because there hasn't been much to update. Ayden continues to do well. They are removing diuretics because his chest x-rays continue to show improvement. They are weaning his oxygen; he currently sits at .025, which is quite literally next to nothing. They are also weaning his Methadone and Ativan.

Ayden had a bedside bottle evaluation, and he only sucked on the bottle twice. The rest of the time was spent gnawing on the bottle or falling asleep. I don't expect much to happen with eating for a little while, but I will admit that our little one is good at surprising me.

Since we have to hang out until his antibiotic run is over (his last day is the 29th), no one is any real hurry to push Ayden. We have time to do things his way, which, if five months of life is any indication, that is how we would be doing things anyway.

Hope?

A few days ago, Allison wrote a very aptly titled post, although my reasons for why it was so apropos are probably quite different than hers.  Three days prior, as we were waiting for that all important blood gas to come back, I was more devoid of hope than I have been at any point in this process.  More so than the day I learned of his heart defect.  More so than when I was struggling with the reality that Ayden's lifespan could ultimately be measured in only days, not weeks, months, or years.  More so than even the day Ayden was hooked up to ECMO.

We were not making progress.  (Even after Ayden was connected to ECMO, there were positive signs, a sense of progress.)  We were one test result from seeing Ayden intubated for the fourth time.  I had no confidence anything would be different after a couple more days on the ventilator.  I was utterly discouraged.  Many times, I have made reference to "shades of grey" when discussing my state of mind.  Not last Sunday.  Last Sunday there was no grey.  There was no color at all.  There was nothing but an all-encompassing blackness that was one hour away from swallowing me whole.  I stepped out of Ayden's PCCU room, walked to the quiet room at the end of the hall, and asked (begged is probably more accurate) God to bring the CO2 level down.

As has been chronicled here, God responded.  That critical blood gas showed improvement.  Ayden had more time.  Then the next was steady.  Even more time.  Then BiPAP was weaned down and replaced with Vapotherm.  More time.  Then came the nasal cannula.  Then going to the floor.  Now, as I sit in Ayden's room almost a week later, he's sleeping peacefully, and smiling while he does so.  More time.

What a difference a week can make.

Since I arrived at the hospital Friday afternoon, after Ayden had moved to the floor, I have again seen him suck on his pacifier, smile his big, opened mouth smile, and start to "talk."  Pieces of him are coming back.  Seeing him smile yesterday when I approached him just made my day.  As always, there are no guarantees, but we are in a much better place today than we were a week ago.  Now I'm asking God to ensure it continues so that we may go home.

This post's title is a question.  The answer:

Yes.

Day Two

Ayden's first morning on the floor started out with some persistent grumpiness, a major blowout diaper, and a few bouts of spit up.  All that aside, he is doing well.

The x-ray taken this morning probably looks better than any he has had since the Glenn.  We have started the process of getting him back down to 30 minute bolus feeds.  He seems to be tolerating that well, so far.  He still has the nasal cannula, but that is being slowly weaned down, as well.  Since we are stuck here until he has completed his antibiotic run, we have some time to get these things where they need to be in order to go home.  In other words, there is no point in pushing him, which may be for the best.

I just can't hide it!

I'm so excited! Ayden is ON THE FLOOR! I just about cried when they told me he had a room in 6C. (I think I might have offended the PCCU nurses a little! Sorry!) Ever since he moved to the floor, his behavior has completely changed. His sats are better. He sleeps more soundly. He began sucking on his pacifier. AND Ayden is SMILING! He is so much happier, and I feel so immensely blessed. I can hardly believe that he was still intubated only five days ago. God is always good.

Some much more boring, though still important, details (and prayer requests) are as follows:

• Ayden's morning x-ray was the same as yesterday's. It is good that his lung shows no increased collapse or wetness; however, it has still not shown any recovery either. They are continuing Ayden's respiratory therapies and increased Lasix doses while on the floor. Some other things that will help his lung will be Ayden's activity level, as well as his ability to cough. He has demonstrated an excellent ability to kick, especially while angry, and he is willing to sit up. He is also coughing, but it makes him upset and start to gag; coughing hurts a great deal after having been intubated for so long.
  
• Ayden is currently at full continuous feeds. At 6:00PM, they are going to slowly begin bolus feeds. The fact that Ayden is sucking on his pacifer (and appears to have no vocal paralysis) bodes well for eating by mouth, but he will not be able to start that right away. Perhaps we can talk the weekend attending cardiologist (Dr. Kavanaugh! HA!) into allowing him to at least suck on formula on his pacifier.
  
• Ayden is still on the nasal cannula at .25 liters. He has done super well with weaning so far, so we are hopeful for continued progress with that.
  
• Though Ayden's cultures show no indication of further infection, Ayden must remain on contact isolation. This means that people other than Bryan and me must enter the room in a yellow gown and plastic gloves. Ayden has bad associations with the yellow attire, but he's not as scared of the people on 6C. I am hoping that the atmosphere here will make him less fearful.

Blessing the Angels -- Mom Mom

We heard this morning that Bryan's grandmother, Mom Mom, went to be with the Lord. We know she is blessing the angels with her witty sense of humor. We send our love to Maryland!

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Ayden's afternoon chest x-ray was the same, so the nasal cannula remains. They added another respiratory therapy called HIT, hyperinflation therapy, which is designed to give the patient big breaths to inflate his/her lungs. Ayden received his other two therapies this afternoon and cried during CPPD because both RT's ignored the fact that he doesn't tolerate it on his chest. (Havilah, we need another crib sign!) Ayden's blood gas was perfect; they wouldn't even show it to me because it was so perfect. They are weaning the nasal cannula; he started out at 2 liters, and he is now at .5 with sats in the high 80's. They are afraid to turn it off altogether, but he's really doing so great with decreased oxygen. We have discovered that Ayden's problem has never really been the need for oxygen; he just needs help with inflation of that right lung. One would think that lack of inflation would affect a need for oxygen and create lower saturation, but Ayden has proven on many occasions that he likes to do things his way. Pray that the right lung pops open, so Ayden doesn't have to go backwards in treatment. Ayden cannot go to the floor (or home) on Vapotherm; he must be on a regular nasal cannula (or nothing!).

Ayden was only sort of tolerating his feeds most of the day. He was digesting enough that his nurse, per protocol, didn't have to turn his feeds off, but he had too much in his stomach to be able to increase his feeds. The nurse just checked stomach residuals, and finally, his bowels have woken up enough for her to increase to 20ml/hr. His goal is 34ml/hr.

His Milrinone drip is to be turned off by 8PM. One cannot go to the floor on Milrinone, so he will have hurdled one more thing.

Ayden is having another good day. He continues to be angry at the medical staff, but he settles out when Bryan and I comfort him. In the picture below, Ayden is receiving normal nasal cannula oxygenation (not Vapotherm), but they have not removed the bigger nasal cannula for fear of making him mad. In the bottom picture, you will see Ayden in the smaller nasal cannula, thanks to his nurse, Ashley, mustering the courage to make our little man tantrum.

I have mastered the frown.

Ayden doesn't appear to have any oral aversions. I mentioned in a previous post that he enjoys his mouthcare; he eats the "toothbrush" and minty moisturizer. He enjoys his bubblegum Tylenol as well. We have tried giving him the pacifier; he likes to hold it in his mouth, but he's still not sure what to do with it.

 

Two Goals

They were able to wean Ayden to the nasal cannula (at 2 liters) overnight; however, his chest x-ray this morning showed right lung atelectasis and edema (again). They are going to try a few respiratory therapies, such as CPPD and Pulmozyme, to see if they can open up and clear out his right lung. They are taking an afternoon chest x-ray. If the x-ray looks good, they will probably keep him on the nasal cannula; if it doesn't, they will either be more aggressive with respiratory treatments or put him back on Vapotherm. They removed his chest tube because it was no longer helping to remove fluid. (Ayden has been unhappy with everyone ever since the chest tube removal; removing a chest tube is supposed to be one of the most painful experiences in a hospital.)

Ayden was also able to tolerate his feeds, so they are working him toward full feeds today. If he does well, they will work toward bolus feeds tomorrow. They have moved all of his medications to the feeding tube (except for Milrinone), rather than through the PICC or IV. This is safer for Ayden because it means that they will access the line less often. I found out how much Methadone Ayden will be tapering... it's going to be a LONG taper. They are also weaning his Milrinone with the hopes of having him off that by this evening.

There are rumblings of going to the floor, but two things have to happen before that is possible: Ayden's right lung has to show improvement while on the nasal cannula, and Ayden needs to continue to tolerate his feeds.

HOPE

"Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us" (Romans 5: 1-5 NIV).

It is difficult to feel hope in a hospital; it is even more so in a children's hospital. Every day I hurt for my own son, and then that pain is compounded by the struggles of the young people (and their families) below him, beside him, and above him. Children are so resilient; their parents, not as much. I haven't rejoiced all that much in Ayden's (our) suffering. I have tried to maintain perspective, and I am always aware of God's Healing Hand, but watching Ayden have difficulty breathing, writhe in pain, become anxious, lose weight, stop smiling... my heart has broken a thousand times over.

I always wonder what people do who don't know the Lord. What hope do they have in a children's hospital? What hope do they have... ever? I know I don't have the strength to get through this without Him. I don't have the patience. I certainly don't have the joy. God builds me up when I am positive that I can't take one more minute of this insanity.

And He gives me things to hold on to... like the fact that Ayden's chest x-rays continue to show lung improvement or that today they are weaning Ayden from the Vapotherm to the nasal cannula. His recent blood gas showed 51% CO2, a big improvement over yesterday's. They are going to restart his feeds. They have taken off Ayden's Lasix drip, and they have made appropriate sedative schedules/doses. When Ayden wakes up, he doesn't automatically start to panic; one can play with him without him crying. (Actually, the only time he seems to get upset is when he coughs or when a white coat enters the room.) Yes, Ayden is still in the PCCU, but he is having an excellent day. There is much rejoicing to be had!

More Like Giant Steps

Ayden would have preferred "Ayden Steps," but today turned out to be much bigger. They switched Ayden from the BiPAP machine to Vapotherm. That alone is a big step; however, he also had his RA line removed, as well as his pacing wires. He had a PICC line put in, in addition to an IV. Over the past few days, he has been oversedated, so they have been holding doses of medication, but now we think he may be going through withdrawal. Like I said, big day. They have asked a lot of a little guy with respiratory issues, but he is hanging in there. He continues to let everyone know that he ain't happy by desatting and turning, yes, the color of eggplant. We are making progress, but his CO2 levels continue to a bit on the high side. They are not necessarily getting worse, but nor are they getting any better. At some point, they need to improve.

Some fun details: I got to enjoy holding my little one. He fell asleep in my arms, nestling his head in my belly or chest. He likes for people to do mouth care on him; he eats the minty moisturizer. He also likes for people to sit him up in the bed. He likes it so much that he will fall asleep that way, and if you try to lay him back in the bed, he will start to scream.... well, scream as much as he can. He doesn't have a loud cry, but one can hear him; he does not appear to have vocal paralysis (phew!). Ayden may also be teething... or it could just be mouth sores from being intubated; I'm not sure which is preferable.

Daddy, I am just going to take a little nap.

Praises All Around

I feel so grateful. Ayden's morning chest x-ray was better. His blood and sputum cultures continue to grow nothing. They have been able to wean sedations. They are taking Ayden off the BiPAP and putting him on Vapotherm (possibly just the regular nasal cannula). If Ayden does well on Vapotherm, they can restart his feeds; he has been without food in his tummy for many days now. The only somewhat negative information we received in rounds was that his RA continues to not draw (it will flush, so they can give meds through it), so they need another access and will need to put in a PICC today. I'm shouting praises to our Lord, for His mercies abound!

"Baby Steps" or "Ayden Steps"

Ayden's early morning chest x-ray showed no collapse! YEAH! His lungs were, however, still a bit wet. His nurse, Lauren, tells me that his chest tubes dumped about 40ml all at one time, so it's possible that that fluid was part of the wetness shown on the x-ray. Ayden's respiratory therapists did some deep suctioning, and they got out a lot of gunk, which is also good; his RT also changed out his mask to something that wouldn't leak quite so much. (Ayden has a big head but a little chin, so there has been much discussion on what kind of mask to put on him to maximize the support he is receiving from the BiPAP.) They are continuing to diurese him; Dr. Smith says he wants to keep Ayden a little bit on the drier side, and he determined that they needed to slowly wean the BiPAP; they started by going down on the pressures (from 10 to 8) and oxygen (45% to 40%). English, Ayden's former NICU resident and current PCCU fellow, comforted me by telling me, "Ayden is by no means failing the BiPAP." They are going to continue to draw blood gases every four hours, so we'll see...

Ayden is a tad bit out of it. He got angry when they were messing with him this morning, but he hasn't really tantrumed since then. They decreased his Methadone and Ativan to see if they could wake him up a bit without causing him to be too upset.

The sputum and blood cultures that they took yesterday showed NO infection! I am thrilled by this because it means that the tracheitis (if he ever actually had it) has cleared up. Ayden has to stay on Vancomycin for 14 days and remain on contact isolation during that time as a precaution.

Dr. Smith, a new cardiac intensivist that I have grown to really like (the same one that investigated possible diaphragm paralysis), says that we are going to take this "baby steps." Bryan says what he really means is that we are going to take this "Ayden steps."

Christie Huggins and Diana Dowdle, mothers of their own precious hypoplasts, have been very supportive during these frustrating days in the PCCU. Christie shared with me some verses in 2 Corinthians that remind me that I have Hope. We are not spared sin and suffering on this earth, but God has never abandoned Ayden or us. I know too that our struggles provide opportunity for God to demonstrate his greatness. Therefore, I "do not lose heart" (2 Corinthians 4: 16 NIV).

------

Note: We just got the 12:30 blood gas back, which reflects how Ayden is doing on the new BiPAP settings. His CO2 is the same, and his lactate came down (good!). All other numbers remain the same. The RT tells me Ayden is on the smallest settings that they place someone on when they place them on that particular machine. I am encouraged!

Note #2: As a result of his better blood gas, Dr. Smith took him down to a peep of 6 on BiPAP. Yeah, Ayden! Praise Jesus!

He's trying...

Our little man is really trying. This morning brought mixed news. Ayden's saturations are higher, and his oxygen setting is lower. In addition, his CO2 levels are now in the 60's. However, his lactate rose a point overnight, and his right lung sounds a bit diminished. He looks cozy, which is encouraging for me.

The Evening Progresses

Ayden's blood gas revealed the same levels. That buys him some more time. Bryan and I are going to try to get some rest. We have requested that they call us if they think they want to reintubate in a nonemergent situation (i.e. blood gases suggest that he should be reintubated). Please continue to pray!

Thank you, Lord!

Ayden's previous CO2 was in the 90's, and the new blood gas shows it to be in the 70's. Since his CO2 has decreased, he has been given more time. Ideal numbers for CO2 are 35-45. Ayden's CO2 needs to continue to trend down. I am begging the Lord that his levels will continue to do so. They draw another blood gas in two hours.

Please, God, decrease Ayden's CO2!

Ayden is breathing comfortably. His coloring is good. He has good pulses. His sats, blood pressures, and heart rates all look good. On Ayden's last blood gas, all of his numbers had improved, except his CO2. If Ayden's CO2 does not decrease, they are saying they are going to reintubate. We should know within the hour.

"Patience is a Virtue"

It is several hours later and Ayden is still extubated.  There has, however, been quite a bit of activity in his room since then.

He got rather mad with the extubation team after they pulled the tube and were attempting to hook him up to the vapotherm machine.  Several times he was apparently rather content to just hold his breath.  Their solution to that was to hook him up to CPAP, which he isn't exactly a huge fan of, either.  He remained settled for a while, but eventually became rather upset.  After about 15 minutes, it got to the point that the doctors were called in to assist.

To make a long story short, after much consternation and hand-wringing, Ayden is now connected to a BiPAP (bilevel positive airway pressure) machine.  This does not constantly blow air up his nose like the CPAP.  Instead, it jumps in with a little bit of air movement support once Ayden initiates a breath.  In other words, it gives each breath he takes a little boost, without the constant, head-hanging-out-the-car-window-at-70-miles-an-hour sensation.  His last blood gas wasn't all that great, so they are playing with the settings on the BiPAP.  With it on, he really looks like he's going to flight school:

It is becoming very hard for us to not be frustrated.  I have tried to tell them how he will react to the CPAP, but they do it anyway.  What I expected to happen is exactly what happened.  We seem to be doing the same things over and over again and getting the same results.  What was it Einstein said about insanity?

I know they are trying their best, but I am quickly losing my grip on rationality and objectivity when it comes to Ayden's situation.  It doesn't help that some of the decision makers involved right now aren't all that familiar with his history and how he responds to certain things.  I wish they had tried the regular nasal cannula first after extubating, rather than going straight to vapotherm and its much larger cannula.

I really don't know what to think anymore.  We're still chasing Ayden up and down and around.  He seems to be either too sedated or not sedated enough.  Each causes their own problems.  He is certainly not making it easy on us, or on the hospital staff.

As I said, we are frustrated.  Increasingly so.  Undoubtedly, the staff is therefore becoming increasingly frustrated with us.  I am trying my best to not become "that parent."

Patience is a virtue.  I'm trying really hard to be virtuous.

Round Three

Ayden's chest x-ray was better, and he has done everything that they have asked of him. He is to be extubated at 12:30. Please lift up our little one!

Sweet Spot

To my knowledge, Ayden has only received one PRN today for his anger streak. He has responded well to his current doses of Methadone and Ativan. He was awake for three hours this afternoon, so I got to talk to him during that time. He got angry at appropriate times (diaper change, suctioning, etc.), but it was nothing that he didn't overcome in a short amount of time on his own. He has had two CPAP trials, and he was taking good, deep breaths at the same percent oxygen he had while on the ventilator (21%). He has diuresed well; his goal was -100 to -200. He is over the -100 mark. His chest tubes are also helping to remove a lot of fluid. All of that is to say that Ayden has had a good day, and I am encouraged by the response he has had to the medication; he has enough on board to keep him "happy" but not so much that he can't breath without the vent. The doctors and nurses refer to this state as Ayden's "sweet spot."

Chasing Ayden & Chasing Tails

The nurses chased Ayden's agitation all night long. They gave him nine extra doses (PRN's) of sedation, pain medication, anxiety meds, etc. They kept bumping his Precedex, but that seemed to do nothing more than decrease his heart rate and blood pressure. (That scenario, of course, freaks Bryan and me out because of the last time we experienced medication lowering his heart rate.) The doctors have taken the Precedex off, increased his Methadone and Ativan, and provided the nurses with PRN's of Delaudid, Methadone, and Ativan in the event that they should need them. Ayden seems far more calm during the day shift. He is currently on a CPAP trial, and he is slumbering (and breathing) appropriately.

The original plan was to extubate Ayden early morning, but his chest x-ray showed increased wetness. While that initially sounded discouraging to Bryan and me, they assured us that wetness can be expected after a surgery. They are diuresing him as usual. He does have a chest tube in on that right side, and that appears to be ridding his body of a decent amount of fluid as well. If the numbers reveal that Ayden has gotten rid of enough fluid, they may extubate tonight. We are not holding our breath... Ayden does enough of that for both of us.

They got more sputum and blood to check for infections. The sputum one has already been positive, so we are certain that will remain the same. The last blood culture showed nothing growing, and we are praying that also remains the same. Ayden is currently on contact isolation; all nurses and doctors must wear gowns and gloves before entering Ayden's room.

I'll admit that Ayden appears sad and that Bryan and I are... okay. The plication appears to have taken care of Ayden's lung inflation difficulty, so that's progress. We are just hoping that the doctors aren't chasing their tails.

"Have I not commanded you?

Be strong and courageous.

Do not be terrified;

do not be discouraged,

for the Lord your God will be with you

wherever you go."

Joshua 1: 9 NIV

Agitated

Bryan and I have grown tired of the word "agitated." However, Ayden's awake state today may be accurately described as such. He coughs (or just randomly freaks out), gets mad, holds his breath, drops his sats, turns purple... and twice today has made himself pass out while on CPAP trials, but he didn't stop breathing. All day Ayden's nurse has been going to the nurse practitioners and fellows requesting more medication to make Ayden more comfortable. So far, Ayden's temper has not been stopped by more medication. Our little man is making things a bit difficult.

Back to the Room

Ayden is now in his PCCU room, and his nurse, Maribeth, tells me he looks great. They are just trying to get him situated before I can go back to see him.

The rest of today will be fairly restful for Ayden. They will continue CPAP trials every three hours to continue to exercise his lungs and to monitor how he would do if he were off the ventilator. (He has done well on CPAP trials over the past 24 hours.)

Ayden's chest x-ray was better this morning, so I am hopeful that the combination of healthier lungs and surgery will get him out of the PCCU soon.

Surgery #3: Plication Begins

I just received my first phone call that Bichell has begun Ayden's plication and that Ayden is doing well.

Surgery #3 Comes a Bit Earlier Than Expected.

When I arrived at the hospital from work today, Dr. Bichell was in Ayden's room talking with Allison.  This was a clear indication Dr. Bichell had decided to do the surgery to tack down Ayden's right diaphragm, for which he needed our consent.

Thus, one unknown from this afternoon, yet one still remains:  when will the surgery be done?  It could be tonight (possibly as late (early?) as 2 a.m.).  It could be Saturday.  It could be next week.  If he can avoid it, Dr. Bichell does not want to make Ayden wait, because they will not extubate him again until the procedure has been done.  (One of the fellows likened extubating Ayden while he has a paralyzed diaphragm to asking someone to run a race on only one leg.)

We probably will not know until at least 10 p.m. if the surgery will be done tonight.  Dr. Bichell seemingly does not require sleep, so it's at least possible it could happen.  Then again, the surgery he's performing right now could easily balloon to an 8 hour one.

Yet again, we must hurry up and wait.

Some Answers

This morning's chest x-ray was better, and they have continued down the road of possible extubation (keep reading to see why I say "possible extubation") by weaning the heavy hitter drugs and continuing the CPAP trials. Ayden has done exceptionally well on CPAP trials.

Okay, the other side of things...

Ayden's sputum culture revealed infection, some form of tracheitis, most likely caused by staph. Ayden got this infection from being intubated/extubated. They have started Vancomycin, a generic antibiotic, until they can determine the exact infection. They have taken a blood culture and are working to determine white blood cell count, etc. He does NOT have a fever and shows no outward signs of infection. It is possible (there's that word again) that he has failed extubation due to the infection.

Perhaps the more likely culprit is that Ayden has right diaphragm paralysis, which keeps Ayden's right lung from fully inflating. Apparently, it is difficult to see paralysis in a chest x-ray because Ayden is getting big enough breaths on the ventilator to cause his diaphragm to move. The diagnosis was determined by an ultrasound done this afternoon. Dr. Bichell inadvertently cut a nerve during surgery to create the paralysis. This paralysis can heal on its own, but it takes months to do so, and they obviously do not want to keep Ayden in the hospital that long. The situation is easily fixed with a plication. The surgeon makes a small incision on Ayden's right side, sutures down the diaphragm, and sews him back up. The thirty minute procedure is less risky than a catheterization and more risky than putting in chest tubes. Dr. Bichell makes the call on when or if this procedure happens. He may want to see if Ayden fails another extubation before doing so. He may want to wait to hear more about the infection. Dr. Bichell gets out of a Norwood surgery around 3:00, and Ayden will be addressed then.

While Bryan and I hate that Ayden has an infection and diaphram paralysis, we are grateful that the doctors now have something they can easily treat. They won't just be putting him through another failed extubation without going in to the situation more informed; instead, they will be addressing the problems. For the first time this week, I feel like Ayden is on his way home, even if he has a few hurdles to overcome before we get there. *BIG SIGH*

Whispers

They held Ayden's feeds last night, and they began him on CPAP trials. There are rumors of extubation. Ayden is on 25% oxygen on the vent, which was less than where he was last time he was extubated, and he did well on the trials. I believe they have increased Ativan and Methadone so that they can wean Delaudid and Versed; they need to have him off some of these drugs so that he will breathe on his own, should they extubate, but they don't want him to freak out like he did the last time. Of course, they are also making sure that all else is well (diaphragm, infection, etc.) before they go pullin' the tube again. I believe they started rounds in the other pod, so it will be awhile before I know more.

Ayden and the Good Day

They gave us a sleep room tonight, even though Ayden is doing well. I think they felt sorry for us... especially when I told them that I hadn't left Ayden's room all day, not even to use the restroom. I have been stressed and sad and overwhelmed and tired and concerned and questioning, and the hospital staff has responded to all of those feelings. This afternoon, doctors, nurses, nurse educators, charge nurses, Ayden's speech pathologist and social worker, and various other staff members have been working together to figure out what is going on with Ayden and to help us feel less frustrated in the meantime. They have talked and talked and talked to us and each other all day. Bryan and I feel more at ease about Ayden's current situation, though we will never feel truly better until we get our son home.

They did an ECHO, and his heart is still doing well. They took some spit to see if Ayden has an infection; usually it takes 48 hours to see if the saliva grows bad bacteria. They are investigating if Ayden has diaphragm paralysis on his right side. They will continue to repeat chest x-rays in the mornings. They will continue hit therapy. They will continue diuresing him.

In the foreground, Ayden is demonstrating his strength by allowing them to wean the vent to 35% oxygen (one needs to be at least 40% to be extubated); his sats have been 73-89, usually depending on positioning and the amount of sedation on board. He responds well to hit therapy, and they have been able to suction a decent amount of gunk from his lungs. He is tolerating his feeds well, so that's a praise; they have even been able to put his regular medications in his tube, rather than through the IV. He is peeing well again, which will aid getting rid of the lung edema (wetness) and possibly the atelectasis (collapse). He hasn't really been awake, but he does occasionally move his arms and legs around. He seems especially interested in reaching for his vent, which makes the nurses nervous, but he hasn't seemed hostile toward the equipment; he just appears to want to hold something close to his face.

At the end of the day, it's been a good one. I am praying for a better chest x-ray in the morning and for continued good days.

Ayden and the Terrible, Horrible, No Good, Very Bad Day

Okay. So it wasn't the worst day that Ayden has had, but from my perspective, it was certainly no fun.

Yesterday, Ayden had a good morning. He was breathing comfortably and interacting appropriately. Around noon, they moved Ayden to a different room. (It's the second time Ayden has moved since he has returned to the hospital; we call these moves "the PCCU shuffle.") Not long after we settled in to the new space, Ayden got very upset. He began to cry and thrash, and I had a hard time getting him to calm down. The nurse gave him Tylenol, and he eventually returned to a happy sleep. The nurse and I agreed that he seemed quite content.

Since Ayden was asleep, I retreated to the back of his room to read a book. His nurse was sitting bedside. I remember the nurse commenting that Ayden looked like he had a bad dream. I went to the bedside to check on him, and he was obviously vexed. Vexed became angry and tearful, and eventually he was arching his back with my arms underneath him to keep him from leaping from the bed. (I had seen Ayden turn eggplant and drop his sats before, but I have never seen him arch his back.) He then collapsed and turned blue. I told the nurse that he had stopped breathing, and we held the oxygen in front of his face. He immediately bounced back. His color was fine, and he seemed yet again comfortable.

Fifteen minutes after the first incident, Ayden yet again freaked out. He desatted, turned purple and then blue, and stopped breathing. I couldn't see the monitors to determine anything else, but his nurse later told me that he also dropped his heart rate, which was something he did not do the first time. Since I was closest to the oxygen, I grabbed the mask and placed it in front of his face for a whiff, just as we did last time. After a few seconds, I realized that he wasn't responding, and I placed the mask on his face. With no further response from Ayden, I asked the nurse if we needed help, and she gave me the affirmative. I ran to the hallways yelling in every direction for help.

A swarm responded to both Ayden's predicament and mine. While doctors and nurses bagged Ayden, various staff members held me. I kept telling them to "please call Bryan," but they couldn't hear me the first few times. Once they realized what I needed, Heather, who happens to also be a 6C charge nurse, made the call. At first, she would only tell Bryan that I had requested for him to come to the hospital. When Bryan wanted to know if Ayden was okay, I told her to tell him that Ayden had stopped breathing. When Heather hung up with Bryan, she admitted that she didn't want to tell him that because she didn't want him getting hurt in transit to the hospital.

I know that I cried in the hallways. I know that they eventually sat me down on a chair for fear that I would pass out. I know that they kept asking me what they could do to help me, and I kept declining everything. I kept closing my eyes pleading with God to take care of Ayden, and every time I opened my eyes, I could see the nurses and respiratory therapists/ECMO nurses on "ECMO Row" pressing their faces to the glass and searching my face for what was going on with Ayden. I was grateful for their sincere concern for the boy they had taken care of once upon a time.

I was only in the hall for a few minutes, but it felt like hours. Ayden was easily bagged, and they came to get me. His Vapotherm was still on his face, and they were maxing it out with 100% oxygen and 20 flow. (That would feel like sticking your head out of the window of a moving train.) His color was a little ashy, but he was breathing fairly comfortably. By this time, Bryan showed up, and with the exception of the two of us, not a single soul in the room was that familiar with Ayden. They did a chest x-ray, and it looked no different from the one that morning, which means that he didn't have complete lung collapse. They took a blood gas, and his lactate was ridiculously high, which indicates stress to the body. (big shock) They mentioned putting the Aladdin (CPAP) on his face, and we told them that he would hate it and desat on them. They did it anyway, and he did just that. They then decided to reintubate. We aren't sure if reintubation would have been necessary for Ayden, but now there is no way to know.

Ayden has been fine, though his sats have been kind of low, and because of Dopamine (which was started with reintubation), his heart rate has been high. (It started out in the 170s.) He started out on the vent at 100% oxygen, but they have weaned him to 72%. They are now weaning Dopamine as well, and his heart rate is at a more comfortable rate in the 130s. Ayden IS on a ridiculous amount of sedation because he is powering through just about everything they give him... Versed, Delaudid, Methadone, and Ativan. His chest x-ray this morning was worse than the last one, so they have continued the usual methods of dealing with lung wetness and collapse-- hit therapy and diuresing. They made him so dry yesterday that they stopped the Lasix, but now they want him to pee again. He finally complied early this morning. He responded well to feeds yesterday, and they have continued those today at 10ml/hour. They finally decided to get an ECHO to make sure that his heart still looks okay.

So you might be asking, "What happened?" There are a couple of theories. One theory is that they stopped the Milrinone, a cardiovascular afterload reducer, too quickly, and he wasn't responding well to that. In addition, it is possible that he did not have enough sedatives or anxiety meds on board, so when he woke up, he was scared, hurting, overwhelmed, etc. Another possibility is that his body hasn't fully adopted the new flow of blood that the Glenn surgery creates. Regardless, all have decided that Ayden needs more time. None are concerned about him at all. Though he is not ahead of the curve, they do not think he is behind or in any kind of danger. I wonder if that's easier for them to feel because he's not their baby.

Now we just wait on Ayden to tell us what the plan is for his recovery.

Navy Blue

I don't have it in me to tell the story right now. I just wanted to inform everyone that I saw my son turn navy blue twice this afternoon because he had stopped breathing. The nurse and I were able to just wave oxygen in front of his face the first time, and he came to quickly. The second time I had to run into the hallway yelling, "Help!" They were able to bag him to get him to come to the second time. His chest x-ray revealed that his lungs have not gotten worse, but obviously, something is not right. They just reintubated him, and we are waiting on the doctors to come tell us their plan. Ayden is currently stable.

"The Plan for Ayden"

"So here we have Mr. Ayden. Hypoplastic left heart. Had a difficult course with the Norwood, experiencing SVTs and eventually coding to ECMO... He is post-Glenn... Last night he was extubated at approximately 5:30. He was on Vapotherm 100% oxygen with a 10 flow when extubated. This morning he was 35% with a 12 flow. His lungs sound clear, but his chest x-ray this morning seems to indicate some collapse in his right lung... He was supposed to start feeds overnight, but the nurse pulled 14ml gastric at the start of his shift, so feeds were held. At 2:00AM, Ayden only had 2ml gastric, so his bowels appear to be waking up..."

At morning rounds, the PCCU nurse practitioner rattles off the events of the day before. After reminding everyone of Ayden's current situation, he/she takes a deep breath and begins, "So... the plan for Ayden..." They must teach that phrase in medical school because all present seem to wait for that to be their cue to participate.

"So the plan for Ayden from head to toe... wean him off Melrinone... continue hit therapy and PRN Albuterol treatments. Wean his Methadone and Ativan so that he will be awake to better inflate his lungs and break up secretions. Wean the Vapotherm to possibly transition to the nasal cannula. Take an afternoon chest x-ray, and if it's worse, try the Aladdin for the higher pressures to inflate that right lung. If things continue to go poorly, we will have to reintubate. If things stay the same or get better, and his blood pressures are good, remove the ART line... start his feeds at 5ml with a slow increase to see if he tolerates the feed...."

Basically, they are just trying to see what Ayden's lungs will do. He is currently breathing comfortably, and his saturations have been good. They have been weaning his oxygen support fairly aggressively, and he continues to do well. He has been coughing on his own, but he has been unable to get the secretions out on his own, so they have been helping that with suctioning. He is trying to suck on a pacifier, but his coordination is not quite there, and the Vapotherm nasal cannula makes it difficult to keep a pacifier close to his face. He has been very interactive. I have been able to play with him and hold him. He does occasionally look a bit stressed and near tears, but if someone talks to him, he usually holds it together. A lot is happening today, and I am trying to be positive that he will continue to progress so that I can see my little one smile more often. (He has begun to smile in his sleep.)

Round Two

 Ayden was comfortable before extubation, and...

 he's comfortable off the ventillator as well!

 Please pray that his lungs continue to gain strength,
so he can stay extubated this time!

Reintubation Update #3: Ready

So... Ayden seems ready. They turned the vent off to see how successfully he would breathe on his own (called a "CPAP trial"), and he did great for the full hour and forty-five minutes. (Oops. They are only supposed to trial for an hour!) The plan is to extubate as soon as they can get a team ready to do it.

The PCCU world is a tornado funnel around us. There are a lot of sick cardiac babies. As soon as an ECMO connection is made available, another baby needs it. At one point, they were essentially using a makeshift ECMO made from a bypass machine and ECMO parts. (If you are thinking back to a previous post, yes, that means that SIX babies were on ECMO at one time.) The cardiac team is weathered and worn and probably discouraged.

Reintubation Update #2: Getting There

Quick Details:

• Ayden's morning chest x-ray looked much better. Praise the Lord!
• They changed over his medications last night in preparation for possible extubation today. 
• He is a sleepy boy, but he wakes up occasionally to check out what everyone is doing. 
• He drops his sats during IPV respiratory therapy, so they are considering either dropping the therapy or changing the way they do it. They are continuing his hit therapy.
• Ayden has not tolerated his feeds; his stomach is not digesting anything. They are hypothesizing that his gut is sluggish because of the sedation.
• They pulled his subclavian line.

I can perhaps share more once they have rounded.

Reintubation Update #1: Do Not Be Anxious

Ayden did fine last night with reintubation. In fact, the chest x-ray following the event revealed that Ayden's lungs had reinflated. Ayden had a calm night, and even though he is on the ventillator and the previous sedations, he is not "riding the vent." Instead, he is initiating breaths or joining the ones the vent begins.

Dazed & Confused

Today Ayden will receive various respiratory therapies, such as IPV and hit, as well as Albuterol treatments. They are continuing to diurese him, but since he is wasting away to nothing (maybe this is slight exaggeration, but he is certainly skinnier), they have begun to give him food through his feeding tube. Over the next 24 hours, they will increase his feeds to what he was receiving before the Glenn procedure. He will be receiving the food as continuous feeds since that is safer while he is on the vent, but they assure me that it will be easy to move him back to boluses once he is extubated.

I needed something to hold, so I wouldn't pull on things I'm not supposed to touch.

So... it looks like his lungs need a couple more days before they extubate again. I am personally struggling. I am trying to be patient. I am trying to trust. I am trying to maintain perspective. I'm biting back tears... only sometimes successfully. I just want to see Ayden happy again. And I miss my little boy.

Peaceful Slumber

"Rejoice in the Lord always. I will say it again: Rejoice!

Let your gentleness be evident to all. The Lord is near.

Do not be anxious about anything, but in everything,

by prayer and petition, with thanksgiving,

present your requests to God.

And the peace of God, which transcends all understanding

will guard your hearts and your minds

in Christ Jesus."

Philippians 4: 4-7 NIV

Intubation Update #8: Is "reintubation" a word?

Despite the valiant efforts of everyone involved, they are, as I type this, putting the breathing tube back in.  Ultimately, there was just too much build up in his lungs, causing him to have to work too hard to breathe.  They believe it was best to go ahead and put it back in now while he is stable then have to do it in an emergent situation.  And that makes sense.  I don't like it.  But it makes sense.

Where I have my doubts is as to whether or not this will make a difference.  They have been making him pee like crazy for the better part of three days now and, if anything, we have lost ground on the fluid build up.  I hope more time doing that will make progress, but I don't know how much confidence I have that it will.  I don't know if we're missing the source of the problem entirely, or what.  I don't know if this all would have been avoided if Wednesday night's fellow hadn't taken the conservative route.

There's a lot of "don't knows" and very little answers, which is very frustrating.  Regardless, the tube is going back in.  At this point, I highly doubt they'll be willing to even consider taking it out again before Monday.

This has not gone how we had expected, though I suppose it was foolish to come in with any expectations, anyways.  It is certainly hard to keep the appropriate perspective.  There are four children on this floor who are on ECMO.  Objectively, Ayden's issues are minor, by comparison.  Subjectively, it sure doesn't feel like it.

Intubation Update #7: Tube's Out, But...

Somewhere around 4:15, they extubated.  He remains that way right now, but it's been a bit of a battle.  He's on vapotherm, which is one step up from a regular nasal cannula.  He's doing okay with it.  Things could be better, but they could also be worse.

As it stands now, it's still possible the breathing tube could go back in.  He's been moving around quite a bit, causing the pulse ox to read all different kinds of numbers, making it hard to believe what's real and what's not.  Before extubation, they stopped all of the sedative drips, so he's approaching the three hour mark without any sedation or pain management.  (Things that could be hurting:  his chest, both his incision and where the tubes were pulled; his throat from 4 days of intubation; his head, from a Glenn headache.)  That very well could be contributing to his constant movement.  Once it arrives from pharmacy, he'll be getting some Tylenol to hopefully help with that.  Unfortunately, he can't have anything in his stomach right now, so it'll have to go up his butt.

We're in an okay place right now, so I'm hopeful the tube will stay out.  I'm also preparing myself for the very real possibility it could go back in.  I know the doctors and nurses will do everything they can to avoid that, but he may eventually force their hand.  (I also know a different group may have already pulled the plug on this little experiment and put it back in.)

If you get a chance, please pray Ayden makes them happy with his saturation levels and the tube can stay out.  This will allow some other things - ART line, and maybe one other line - to come out, too.