Happy Halloween!

Continued Progress

Bryan said Ayden had a great night. They both got a lot of sleep, which I was encouraged to hear since the two previous nights were so terrible. Rest is essential for recovery, but it is difficult to come by in a hospital.

Ayden obviously feels better; he is smiling a lot more often, and he is enjoying his toys. The Halloween parade brought Ayden a stuffed animal panda yesterday, so I washed it last night. His nurse, Ginny, showed his new toy to him, and he was very fascinated. We could not have entertained him with the panda yesterday, so I was happy to see him interested in playtime again.

Ayden's chest x-ray showed some improvement. It has been difficult to appreciate the progress day-to-day. Ayden's resident, Brian, showed me x-ray shots from readmittance, and I can definitely see the improvement in both lungs. Brian also explained to me the process of weaning from IV diuretics to PO diuretics (by mouth, or in Ayden's case, per tube), and I was very fascinated by the physiological aspects. They hope to have him on full PO diuretics by tomorrow, so they can then begin determining Ayden's home regiment. (As a side note, the resident team currently on 6C has been fantastic; we are sad to see them move on to a different area of the hospital on Monday.)

Ayden's blood and urine cultures have still not grown anything, so they took him off antibiotics. Knowing Ayden probably does not have an infection is a huge relief.

I know that we are, most likely, getting closer to going home, but Bryan and I try not to have expectations. We try hard to balance hope and realism. We want Ayden to be stable and capable before we try to take him home again.

Crazy Day at the Hospital (But NOT Because of Ayden!)

I remember my friend, MJ, telling me that x-rays can be a day behind in revealing what is actually clinically happening with a patient. The doctors believe that may be the case with Ayden today. Today's chest x-ray was only slightly better, but he has been off the nasal cannula since 6PM yesterday, and he has clinically improved over the past 24 hours. His coloring is better, and he isn't working as hard to breathe. Since he isn't peeing as well today, they are thinking that they have dried him out and that tomorrow's x-ray should show where Ayden really is today. (Or we could look at things negatively and wonder if Ayden's kidneys are failing... probably not.)

Ayden's blood and urine cultures have not grown anything. If that continues to be the case this evening, they will take him off the antibiotics.

Ayden's speech pathologist, whom you have already heard a lot about, came by to work with Ayden. Denise gave him sweet potato baby food. Not only did Ayden like it, but he actually used his lower lip to get it in his mouth to swallow it! Denise was very impressed by what she saw, and I kept teasing her by asking her where his spoon was. (He's not quite there yet.)

The hospital was a crazy place today. 6C has more sick babies than normal (probably because the PCCU has more sick babies). The hospital had a Halloween parade, where people in costumes delivered goodies to all of the children. Then Rascal Flatts visited the children in the hospital; the group was honored with the naming of the children's hospital surgery center, Rascal Flatts Surgery Center. Rascall Flatts brought Ayden a toy and a signed photo, and they posed for a photo. (Ayden had just woken up from a long nap, so he looks a bit out of it.)

Another Day

Ayden has not had a temperature since the one taken last night. However, they are still progressing as if he has an infection. He is receiving antibiotics until we have more information. Based on the blood taken from Ayden yesterday, his white blood cell count was on the high end of normal, and his inflammatory marker was high. We will know more tomorrow based on his blood and urine cultures. (Technically, it takes five days for them to officially say whether or not he has an infection, but they usually have some idea after 48 hours.)

Ayden's PICC line dressing was changed for the third day in a row. Something new happens every day that makes them concerned that the PICC will be compromised. A PICC dressing is not terribly fun for Ayden, but each time has been necessary. Every time they access the PICC or change the dressing, I am prayerful that the line doesn't get compromised... if it hasn't been already.

This morning's chest x-ray wasn't much different from yesterday's, so Ayden will receive the same insane amount of diuretics today that he received yesterday. He is peeing well, so maybe tomorrow's x-ray will show more promise. Dr. K came by to see him, and she seems to think that the two lungs sound more equal (i.e. problem lung sounds as good as the other). He must be doing somewhat better because he is on .1 liters of oxygen. (Update: He is now on room air.)

Havilah came in this afternoon to help give Ayden a bath. (Honestly, she did all the work.) We have missed having her as a nurse, but we understood that we can't hog her all of the time.

Ayden has been pretty fussy. He is afraid of most everyone. He hates the nasal cannula and often manages to get it out of his nose. He won't suck on a pacifier, but he munches on his fingers quite a bit. The hospital is just not the place for a baby, especially a baby that knows what it is like to be home.

Pieces

I believe that Bryan has written in the past about how we look for pieces of Ayden to return after a major physiological change or event. Well, after a very difficult night and morning filled with out-of-control crying and sweating, Ayden has begun to be Ayden again. He has been cooing and laughing at his nurse visitors, and he is currently slumbering without restlessness. In addition, his oxygen assistance has been decreased from 2 liters to .25 liters, and he is currently satting 78-82 while in a deep sleep. They will probably be able to wean his oxygen further (off???) overnight. Another exciting change is that Ayden took some formula by mouth (through use of syringe, not bottle). I think he enjoyed the feeling of the liquid on his sore throat. I was encouraged by his willingness to eat.

So... why the quick change? I think he feels better because a significant amount of fluid on his lungs has been lifted during the course of the day. They have him on a ridiculous amount of IV diuretics, but they needed to get his lungs cleared quickly, so they can figure out an appropriate home medication regiment. This process could take a week... maybe more... I don't ask for numbers because I don't ever believe discharge until we are actually experiencing it. What I do know is that Dr. Kavanaugh wants to get him home; she told Ayden that he needed to be working on being a little boy.

There's always a catch. Ayden had a fever at his last temperature check. While it is possible that a fever could be the result of having had the cath yesterday, it is also possible that he has an infection. His nurse, Stephanie, has already drawn blood to determine white blood cell count, etc. She is also going to get a urine sample for a culture. The really bad news could be that Ayden's PICC has been compromised, and he has central line infection. If the blood drawn from the PICC indicates that he has an infection, they have to get further blood from a different site. If the blood from a different site shows no infection, they will have confirmed the central line infection; if it too shows infection, then we are probably dealing with something else. We are hoping that the fever is a fluke, a result of the cath, and nothing to worry about.

_____

6:04 PM -- White blood cell count is normal. We are waiting to hear back regarding the test for inflammation. Stephanie still needs a urine sample. Ayden peed on her for the first attempt, and she didn't get the sample.

Cath Update #4

Ayden is out of the procedure and is back up in his room on the floor.  This means he was extubated afterwards, thankfully.  He's not a very happy camper right now (typical after a cath), but he came through it just fine and is doing okay right now.  The more he can sleep over the next several hours, the easier the recovery will be on him and on us.

Dr. Ammons did address an issue he found during the procedure.  Ayden had a vessel that was allowing blood to flow from his heart to his right lung.  This blood was flowing at a higher pressure than the blood passively flowing to his lungs from his upper body.  Essentially, the higher pressure flow was impeding the other blood from going where it needed to.  This extra vessel is what was "coiled off."

Dr. Ammons showed us pictures and video from the procedure.  We could see the bad blood flow and the coils that were put in place.  It was actually rather fascinating.  At any rate, hopefully this was the thing holding him back.  Time will tell.

Cath Update #3

Ayden is continuing to do well.  They finished checking pressures, took some pictures of his pulmonary veins, and are now "putting in more coils."  Until Dr. K. just came by, I had no idea what that means. (She went down and checked on him.  She really cares about Ayden.)  As it turns out, Ayden has some vessels that are sending extra blood flow to his right lung.  Yes, the right lung, which has been the problem lung, is getting extra fluid sent to it.

So, Dr. Ammons is "coiling off" those extra vessels.  This involves inserting a straightened platinum (Dr.K: Ayden is "very expensive") wire into the vessel that then coils up, taking the vessel along with it.  This causes the vessel to clot off, thus stopping it from continuing to transport excess blood flow.

It sounds like Ayden has been operating with a bit of handicap in that lung, and this should help.  The finally thing Dr. K told us was that there was no scary monster lurking somewhere in Ayden.  Nothing really troubling has shown up today.  Thank God for that.

Cath Update #2

They have finished getting access and have started the procedure.  I believe the first things they will be checking are pressures and oxygen levels in various places.  We should get another update in 30 to 45 minutes.

Cath Update #1

Ayden's cath started earlier than expected today.  He went down form the floor to the cath lab at around 11 this morning.  We just got our first update a little while ago.  He is doing fine and they are still working on getting access.

One related thing Allison wanted me to mention:  we are a big fan of one of the cardiac anesthesiologists, Dr. Daves.  She was in charge of Ayden when he went down for his Norwood way back in April.  She is again in charge of him today for his cath.  Allison says this is "a God thing."

ECHO/Cath Update

The results of Ayden's ECHO are in.  There was no sign of any previously undetected problem.  In fact, his wall motion (i.e., how well his heart squeezes), which has always been "mildly depressed" at best, was "almost" normal, according to Dr. K.  This is music to my ears, as the depressed motion has been my main source of ongoing, irrational parent-type concern since the SVT issue was remedied. (The tricuspid valve is still leaking, so I guess that now becomes the focus of my irrational fears.)

This is all good news.  The flip side of that good news, however, is Ayden being scheduled for a cath.  Tomorrow.  He's set up to be the third case.  I consider the procedure to be a necessary evil.  I think it is good they are looking for possible structural explanations for his current plight.  Of course, when you go looking for a problem, it's possible you will find one.  So, I think it's the right thing to do, but I'm wary of what might come from it.  Additionally, the procedure requires intubation, which is an unequivocal downside to this course of action.  Typically, extubation after caths occurs quickly, while the patient is still down in the OR (this was one area where Ayden was typical - he came up from his pre-Glenn cath sans ventilator).  If that happens tomorrow, Ayden can come back to the floor, rather than staying at least one night in the PCCU (one of the perks of no longer being a Norwood).

Please keep him in your thoughts through tomorrow afternoon.  We will be asking God for the doctor to find no problems (or, secondarily, to find only problems that are benign and fixable) and for Ayden's intubation to not extend beyond the bounds of the procedure itself.


Also:  Ayden now has a PICC line, thanks to the willingness of the PICC team to make the attempt in his room on the floor, rather than dragging him down to the cath lab.

More Gray

I feel a little bit like I am going to throw up. That is a completely irrational response to our current situation, but I think I'm entitled to a few unreasonable reactions.

Ayden seems to be experiencing cyclical issues with his lungs. He has little (.05 liters) or no oxygen and sats beautifully for many hours, and then he will have a few hours where he requires more oxygen (no more than .5 liters, which is still not much, but it's more than what he was on) to stay within his sat range.

Dr. Kavanaugh feels that we could be missing something. She has ordered an ECHO to check on Ayden's heart function. If nothing can be found, she is considering a catheterization to check on things more closely. We don't want any collateral veins, etc. causing issues with Ayden's heart, lungs, or blood flow.

In addition, there is concern that the IV (yes, the five attempt IV) is no longer drawing blood. Dr. K wants a PICC put in, which may or may not mean a return to the cath lab and then an overnight in the PCCU.

In summary, all regarding Ayden's physical health is up in the air. Did I mention that I feel as though I am going to throw up?

Update

Ayden has been readmitted to the hospital and has moved into his room on the floor (in the cardiac pod this time).  His chest x-ray was a little bit worse than the last one, but none of them have been anything like what they were after the Glenn when he was having trouble getting off the ventilator.

The course of action right now is to give him some IV diuretic doses (IV is a more efficient delivery method than is using his feeding tube) to get rid of that fluid.  This, of course, necessitates him having IV access (the last thing that occurred before discharge yesterday was the pulling of his IV line).  It only took five tries to get one in.  Fun, huh?

At any rate, he is sleeping comfortably, and will hopefully continue to do so until radiology comes in at around 5:30 or so to take an x-ray and wakes him up.  There's always something in the hospital to look forward to...

Home (briefly)

Yesterday afternoon, Ayden stayed off oxygen, his ins and outs were good (i.e., the diuretics were working), so early in the evening, we took him home.  Unfortunately, his stay was rather brief.  Allison is taking him back as I type this.

His oxygen levels stayed acceptable overnight and into this morning.  Indeed, the last time I checked them earlier in the morning, he was above 80 consistently, which is great.  Later, Allison noticed Ayden was breathing more rapidly than normal.  We checked his sats again and they were low.  And stayed low.

So, back to the hospital he goes.  I'm guessing this is a fluid retention issue.  The first thing that will probably be done upon his arrival is an x-ray, which will either confirm or deny my suspicion.

Please keep Ayden in your prayers.

Off Oxygen... Again

Ayden has been off oxygen since midnight. He had a chest x-ray done this morning. We will know more at rounds. We really want to take Ayden home.

Ayden on His First Half-Birthday

Happy Half-Birthday, Ayden!

Ayden turned six months old Tuesday, October 19th. I realize that six months old is not all that important to most, but to this mom, six months felt monumental. Having a baby with a congenital heart defect certainly puts minutes, hours, days, months, years-- past, present, and future-- into perspective. Ayden's life is so precious; he is molded so perfectly, and I marvel at the good work God is doing in him, with him, and for him. Yes, Ayden's six months of life are extraordinary!

To celebrate this awesome occasion, Bryan took a half day from work, and we went to lunch with the Glassers and then to the park as a family. Ayden had the most fun with us at home. He was a big fan of playing with his feet and his red bib. Easy to please. And super cute!

Here We Are, Yes, Again

Wednesday I frantically brought Ayden to the hospital. I didn't know if we were going to clinic or to the ED (no longer called "ER"), but I called clinic to tell them to be ready to tell me where to take Ayden. As it turned out, we met Dr. Kavanaugh at clinic, and since Ayden was obviously uncontrollable AND his saturations were in the 60's, Dr. K admitted him to 6B, which is the oncology pod. (No rooms were available in 6C.) I am normally viciously biased against noncardiac nurses taking care of Ayden and was initially wary, but the oncology nurses have been very good to our family and have asked a lot of questions to best care for our son.

On Wednesday evening, Ayden had two chest x-rays done, each representing a different view of Ayden's lungs. The x-rays showed some minor plural effusion (wetness), but it wasn't anything anyone was too worried about. However, Ayden was requiring oxygen, so it was difficult to know if the low sats were due to sedative withdrawal or to a wet lung. Dr. K decided to treat both. She put one of the sedatives back on, and put another back at its previous dosage. She also increased his Lasix to help reduce the fluid.

Ayden came off the oxygen at 10:30 yesterday morning, and all appeared to be going perfectly. Ayden slept well, and he maintained perfect sats. We were told he would be discharged this morning.

Then there was this morning... Ayden's sats were all over the place, and his morning x-ray showed increased fluid. While the withdrawal symptoms seemed to be taken care of, Ayden is back on oxygen at .1 liters. That amount is ridiculously small, but in this little guy, it seems to be the thing to help him stay consistent.

Bryan and I can see that Ayden is mentally ready to go home. He is way over this place (and so are we). Please pray that dealing with the fluid issue takes no longer than one more overnight stay.

We have been working with Ayden on side lying, which he tolerates best when we lie with him.
I have experienced many sweet moments of smiles and laughter while side lying with Ayden.

Again?

It appears Ayden, for what I believe is the fifth time in his young life, is dealing with sedative withdrawal.

The short version:  Allison called me yesterday afternoon, concerned about Ayden being inconsolable all day.  Our initial thought was go to the pediatrician.  After Allison checked Ayden's oxygen saturation and it was low, the pediatrician was replaced by the hospital.  Dr. K, who thankfully is on service this week, admitted him to the floor yesterday afternoon, which is where he still is right now.  After seeing how he was acting for a while, my gut reaction was withdrawal (Ativan tapered off a few days ago).  So far, x-rays and bloodwork have not produced a competing theory.  Withdrawal remains the most likely explanation.  As miserable as that is for him, it's probably the most desirable one.

I think he's ready to go back home.  Allison thinks they'll hang on to him for another night.  Unfortunately, she's probably right.  Please keep him in your thoughts and prayers.  The hospital is a miserable place for him - for all of us - to be.

Visitors for Ayden

Over the past few days, Ayden not only got eleven lovely visitors from BA, but he also was able to spend time with his Grancee, Aunt Lisey, and Uncle Phil.

Grancee and Ayden at Harvey Park-- Ayden's First Park Adventure

Ayden didn't like the sunlight, so he kept his eyes closed most of the time...
Then he fell asleep.

Ayden met Uncle Phil and was quite content in Uncle Phil's arms.

Aunt Elise & Uncle Phil joined Grancee, Ayden, and me at Saffire Restaurant in The Factory.
Ayden was able to be there because the place was empty.

Grancee read Ayden many stories. He was very attentive.
He enjoyed kicking the books as much as hearing them read to him.

Grancee thinks Ayden will roll soon.

Grancee bought Ayden his first pumpkin.