Brady Bunch

Check out Hank's beautiful long eyelashes - and growing!...

Well, we're back at being somewhere other than HOME a little too soon for my taste. What's kind of funny about that comment coming from me is that when I was here that first month of Henry's life, i remember being very leery about coming home. I liked and appreciated the comforts (so to speak) of the hospital. The reassurance that Henry had a nurse to his beck and call, quite literally, was a nice thing. I would get asked "aren't you eager to go home?" and i knew i was SUPPOSED to say "oh yes, very!" I mean sure, i missed the gang, but i was uneasy about taking on Henry sans nurses and with no monitors.

But i digress. Let's backtrack through to now. BTW, this is another long read, so go getcher self a glass/mug of your favorite beverage first (i'd quite enjoy an ice cold Shock Top, but the most i'm gonna get sitting here next to Henry's bedside while he's off to a milk test, is a ginger ale on ice! Ho hum.)

Sometime last week i was running around trying to sync up all our CHOP appointments to happen in at least the same week, if not for the same day. At this point, it was my understanding that we would have to be here twice in one week: at the beginning for his infected incision site inspection and at the end for a meeting with plastics to talk about the game plan for fixing Henry's lip. After being led from one person to the next, I ended up talking with the plastics division directly to set up a time and date. 10 minutes later they called me back to say they had discovered we have NY Medicaid (or "MA" (medical assistance)) and could not accept it. She was minorly apologetic. I sat there for a good 7 seconds with no sound or words to form. I truly was in shock. I actually made her clarify the news by saying it again, which she did apathetically. Well okay then. That's one appointment i don't have to stress about adjusting Ron's schedule and finding a sitter for the boys. As for the incision appointment - with a simple phone call, found out it is NOT necessary we return to Hank's surgeon for inspection - a simple check by Dr. Finnerty, his local cardiologist would do. Um, yeah, that saved us a 10+ HOUR drive...

Left: Dorene, an awesome volunteer who i chatted with extensively when i came in this a.m.
Right: a knee's-eye view of Henry and Mommy.

I then surfed the net for the Pediatric Cleft and Craniofacial Center in Rochester, NY, in conjunction with Golisano's Children's Hospital at Strong. I got their phone number and left a message. I was called back Thursday and chatted extensively with the nurse practitioner Christine and we had an appointment the following day, Good Friday, at their office. Ron had a big group of days off (some because we had planned for him to come to CHOP or to watch the boys at home if i went) and we we decided to "make a day of it" with the whole family. I also called my college roomie Kerry in Geneva to see if she had the day off and did she wanna get together, the whole gang. And she did! Sorry to all who might have loved seeing pics of all four boys (minus Henry) boys playing in a small sandbox shaped like a tugboat - we forgot the camera! Phooey.

The appointment went very well. I like Christine - she is forward, outgoing and most of all honest and direct. KINDA LIKE ME! She was totally cool holding Henry and impressed with his sucking ability given his situation. She was also excited at the small progress we made during a feed with a bottle. Henry was definitely working at the nipple and getting some dribbles. Then he just started fussing and not working at it, and so the consensus was to start bottle feeding for about 10 minutes right before a feeding. When he starts fussing or it starts taxing him, just finish the feed via G-Tube. Sounded good to me. She also evaluated the severity of his nose "nubbin" and the course of action to help bring it closer to his face before surgery. You can use a taping method or a retainer method. It was not decided yet which route to go. Christine should be in touch with me shortly.

Notice Henry's scalp IV. I had no idea the head was a GREAT place to find a baby vein.

Later that night, actually Saturday morning around 12:30, i was awoken by Henry refluxing his overnight feed. We give it to him in 2 portions, due to the time it takes to feed him; it's a 10-hr feed using formula, which should only be out at room temp for 4 hours max. After he settled down a bit and i wiped him up, he looked so groggy and seemed to be falling back asleep quickly so i changed his diaper quick and put him back "down." And by down, these days, it means inclined at about a 25-30 degree angle due to his reflux inclinations. Reflux is common with cardiac issues, especially cardiac babies. He's on Zantac to help ease this discomfort.

In laying back down myself, i was listening to Henry and felt uncomfortable with his breathing pattern. It was not only gurgly, as though there was still formula stuck in his throat, but it was SHORT, and then he sounded like he stopped breathing for about 10-12 seconds. If you're familiar with sleep apnea, its a similar sound. Breathing - pause - not breathing. Apnea can also be a fairly common thing with cardiac babies but Henry had done an apnea test without a noteworthy outcome. Nonetheless, he had developed a very steady pattern: gurgly labored breathing for 40-50 seconds, and no breathing for the rest of the minute. The breathing would come back with a gaspy coughy breath, a mini cry, then back to the gurgly breathing. I laid there disconcerted with how it all sounded and called the overnight number to my ped's office. The operator paged a nurse on call. Her return call was taking too long so i thought to call CHOP and spoke with the cardiologist on call there. The doctor, Camila, remembered Henry quite well and gave me some valuable direction: to monitor the breathing and check his color. If he was dusky/grey and the lack of breathing continued, she suggested i go to the ER.

Which is what i did. I picked him up to get him packed and he threw up again. This time, he looked so grey/white and kind of spacy, his eyes bugged wide open. Ron and i both thought it looked visibly bad. I chose to drive him myself to Arnot. Ron called the ER to let them know i was en route.

When i got there, the front desk nurse sat me down to get some general info, all while putting a pulse-oxygen monitor on Henry's toe, a common practice. Once the machine fired up after a series of beeps and boops (i like that phrase), his number came up 50. In hanging out at CHOP for a month and being inquisitive, i've grown quite familiar and knowledgable of all the numbers, what they mean, and what's appropriate for HENRY. 50 was not good. I looked at the nurse and as i was saying "is that right?" he was picking up Henry's carseat and abrubtly said "walk with me." He notified several people he walked into on his way to a room and by the time he sat Henry down on the bed, there were 7 people in the room.

Henry was put on oxygen immediately and his number QUICKLY and immediately came up - 60 - 67 - 76 - 83 - 91 - 96. Technically, 96 is HIGH for Henry; Henry breathes comfortably and safely on his own, with plain ol room air, at about 86-90. No matter though - he was getting some good air and his color literally rolled back up and only his face. Poor little guy was starved of oxygen. I was gently reprimanded for driving instead of calling 911 and getting in an ambulance (it never really occurred to me that he might need LIFE-SAVING equipment en route!). I was also told that we could have lost him if i gone back to bed and let things remain as they were. Well, i guess you can chalk the WHOLE event up to Mother's intuition/instinct. I mean - why did i wake up to his throwing up in the first place? Then of course after tracking his questionable breathing pattern and calling CHOP, i made the right choice to go in. It felt SO GOOD to get a cardiologist in REAL TIME on the phone to guide me, even if all the way from Philly (little foreshadowing here...)

Open............................ Closed

Two hours later, Henry was taken up to the pediatric unit on the 4th floor. I learned two things that night. 1) Henry, and babies/children in general, will only be in the NICU while still in the hospital after birth. Once the baby/child is discharged, it can never return to NICU. I do not know if this is a general NICU rule or Arnot's rule. I'm guessing the former. 2) Arnot does not have a PICU (pediatric intensive care unit). I thought they did. This too is a mini foreshadowing on why we are back at CHOP.

Henry remained in the ped wing for a day and a half. All day Saturday they basically monitored him. Took him off feeds and replaced with IV fluids. He was bradying (lower than average heartrate, which for Henry, is anything lower than 90-100) at beats from 88, 78, 58... off and on all day. His oxygen levels never baselined (and again, for Henry, are 85 to low 90s) and remained around 60 and 70 if he only breathed on room air, thus he was kept on an oxygen flow blown in the direction of his mouth. That kept it at a comfortable level. I went home that evening to have dinner with the family and take a shower.

Easter Sunday morning after midnight, the nurse and i were noticing Henry's bradys happening VERY frequently, sometimes 3 in a minute, going down to 50 BPM, and then recovering slowly. Whenever this stuff happens, Henry seems very peaceful and almost always sleeping. If you look closely, you will listen and not hear him breathing. If you are particularly observant, you can look in his mouth and most likely (but not always) notice his tongue all the way pushed back into his throat, quite literally closing off his breath. That's when you shake him awake and he'll gasp, set off a little cry, and then go back to breathing. This just KEPT happening. Paired with some other concerns, the nurse called Henry's pediatrician who came in, showed concern and called Dr. Finnerty, Henry's cardiologist. I figured worries must be important enough to call The Crew in at 3am. An echocardiogram was ordered and i sat and watched Dr. Finnerty point out the parts of the heart, even the PA Band that was put in on 2/17 to limit the bloodflow into his heart. Dr. Finnerty did not find anything different or concerning on the echo, so that only added to the mystery. Henry's bradying and low oxygen are going unexplained. He's been tested for RSV, flu and pneumonia, all negative. There is the question of reflux - why is it happening so frequently, what is causing it.

Daydreaming of calmer days....

So Dr. Finnerty and Hank's pediatrician Dr. Ruas both agreed, along with some calls to CHOP, that Henry needed to be transported back to his "old stompin' grounds." There were three options: 1) airlift, 2) ground transport coming from Elmira or 3) ground transport coming from Philly, preferable in that order. It didn't seem like option #1 was happening fast enough, and #3 is just dumb when #2 can happen. And so #2 did and Henry was packed up in his "pod" around 8:00am.

Meanwhile, i went home and broke the news to Ron. I think he was completely surprised, given the look on his face. I thought about a lot of stuff on the 25 min ride home and decided that i would go home and take some time to pack and spend quality time with the family. No need to RUSH behind the ambulance when Henry was going to arrive in comfort and care. It was Easter after all and we originally had plans to have dinner with my dad (Shirley's in FL). We changed the plans to Easter Breakfast (enjoyed at Spencer's, YUM) and Sam and i had yet to dye eggs with the kit we bought about a week ago. So i promised to do that with him after breakfast. I was able to pack slowly with thought (more than TWO outfits, thank you very much) and all four of us dyed eggs (well, Thom watched joyfully from his porch swing). It was really a nice morning. The perfect way to preclude a potentially long time away from home.

And now here i am. It's taken all day, off and on, to write this entry, and in the course of time, not a whole lot has been discovered. In fact, Henry is apparently only here to bat his long reddish eyelashes at all the pretty ladies, because he has yet to truly exhibit ALL the concerns that prompted our coming down here in the first place! He's only brady'd about three times total in 30 hours, and they've all recovered within 3 seconds. He's not refluxed at all and his oxygen saturation levels are good for him, not necessitating supplemental oxygen. The only indication that this whole trip is not a joke is this tiny cough that is still a mystery as well. There's speculation that it is related to reflux. At this point, i have no idea what they are going to do to even FIGURE OUT what's wrong, especially if there are no symptoms to show them!

So we'll see what tomorrow brings. And tomorrow's tomorrow. Beyond that, i'm not counting days. I'm just goin' with Henry's flow...