Sunday, April 10, 2011

Zoe and Wyatt's Excellent [Medical] Adventures

[Note:  This is one of the series of letters that I posted to my friends and family on Facebook between January and May of 2011.  They are rough, raw, painful in spots and are completely representative of the level of understanding I had about Down syndrome at the time (read: precious little).  Despite ump-teen years of nursing, I had very little understanding of what Intellectual Disabilities were and how deep my own ignorance ran. 

This is the story of Zoe's surgery and Wyatt's first trip to the cardiologist -Jxox]    

Believe it or not, we try to keep things reasonably drama free around here. The unwritten family rule is this: regardless of what washes up against the house, inside we stay cool.

We like it quiet.

Then we had twins. I fear that quiet is a thing of the past.

Monday and Tuesday of this past week were scheduled to be back to back appointment days. Monday was to be Zoe's consult with the surgeon while Tuesday was Wyatt's trip to the cardiologist. That changed Monday at Zoe's appointment. Her inguinal hernia  had become harder to reduce prior to this; in fact the last time I did it, I wanted to be sick as it required more pressure than I was comfortable with and it went in with an almost audible squish-pop. Yuck. The surgeon, who was French (which is only significant in that she is one of the few people that can pronounce my daughter's name correctly) had a hard time reducing it as well; she and Zoe battled it out for a few minutes before it popped back in. Zoe screamed the entire time. It was awful. The surgeon had an opening in her schedule the very next day, which when the shock wore off, we jumped at it. We took it for three reasons: 1) to get it over with, 2) as it was becoming harder to reduce, the chances of it becoming incarcerated were increasing all the time and 3) the surgeon was booked up for weeks doing complex 4 hour tumors and whatnot and with it getting worse, we didn't want to take any chances. Tuesday it was to be then.

Some of you may be shocked to learn that I don't have a cel phone... especially since I was practically married to mine at one time. To be honest, it's a leash that I'm happy to be without and I'm liking the money I'm saving. The unfortunate part is that there are probably three times a year that I could really use one. Monday was that day. I called Wyatt's cardiologist via payphone on my credit card and explained that we would have to reschedule and why. The receptionist was very sweet and told me she would leave a message at my home number with a new appointment. Fabulous. I figured it would be in a few weeks time, but what can you do? Wyatt's echo is very important, but Zoe's hernia was technically more "on fire" and as a parent, you have to make these difficult calls sometimes.

We did our pre-op, we headed home after a very long day at Mac. We planned to be home by noon and ended up being home just after four, which as you can imagine totally messed up everyone's feeding schedule and whatnot. Going anywhere with a baby is tricky as you have to pack their whole world; it's a major maneuver to get twins and a four year old out the door at any time. Once we had sorted out everyone and called a few people (and updated my status to take care of the rest of my peeps) we started our planning for the next day. I would be staying over with Zoe while Sean, Wyatt and Quinn would return home. I have enough EBM in my freezer for the whole NICU, so Wyatt would be more than taken care of for 24 hours. I packed clothes for both Zoe and myself, bottles, pumps, sterilizer bags, diapers, wipes... you name it. These days, hospitals don't supply anything as they expect you to bring your own supplies. If there is one thing I hate it is being unprepared, so it all had to go.

Zoe's surgery was booked for 1230; we were supposed to be there for 1100. We made it on time... and had to wait. And wait. And wait. Zoe had been NPO since her last feed at 6am, so keeping her quiet and happy was a bit of a challenge. Twins also make you a bit of a celebrity, so quite a few people were coming over to check us out and ask questions. This I normally don't mind, but with an hour's sleep and my daughter crying and her about to be cut open, I really didn't have the patience for it and had to grit my teeth a few times. We were finally called in and Zoe was "vitaled" and changed into a baby hospital gown (which was so big on her it looked like a christening gown). We wrapped her up in a hot flannel to soothe her a bit and it worked as she stopped crying and conked out. I was on edge as I walked back to the waiting area; halfway there I looked up and saw Sean's Aunt walking towards us. I almost burst into tears. It's amazing how comforting a familiar face can be in these situations; it's made even more so when it's family. (Also, thank you to the little birdie that passed my status update on... xox)

Our Aunt's visit also helped offset what was another lengthy wait. I have no idea what time they finally called us in, but it had to be close to 2. I walked in carrying my daughter and held her tight as I met quite a few members of her team and spoke to the surgeon. Since Zoe is only 6 weeks old I was unable to be with her as she went under and I was definitely banned from the OR. I had to hand my daughter over to a stranger and shuffle back to the waiting room to the rest of my family.

Sean wisely directed us to the cafeteria so that we could eat. Partly to take our minds off things but also to make sure that I would eat as I tend to forget these things when I am upset. Since I am breastfeeding twins, I need an extra thousand or so calories a day, so missing meals is right out. I rushed through my lunch, knowing that the surgeons actual part in the operation would take about 10 minutes and I wanted to be back there to meet up with her post-op. As it was, we got there just as she did. She let us know that Zoe did exceptionally well and I would be called in to be with her as soon as she started to wake up a bit. She also noted that there were no concerns from her point of view so that we could follow up with our pediatrician. Which, aside from being great news, is nice as it saves us another trip to Hamilton.

It seemed like an eternity passed before I was called in. Zoe was still asleep, but rooting like crazy and had to eat. She fed and before I knew it, our room upstairs was ready. This was a pleasant surprise as I expected to be in post op for at least a few more hours. As we were getting ready to move her upstairs, Sean told me that an old family friend of ours had stopped by and was waiting for us by the elevator. Zoe went upstairs while I talked to Dave for a little bit... once again, a friendly face in the middle of a chaotic day can make the world of difference. When we got upstairs, she was asleep in an enormous crib with rolled towels creating a little nest. They don't normally get babies that young I guess so she was a bit of a star with the staff as quite a few had to pop in to see "the baby" and "the twins". Since she was sleeping off the anesthetic and as comfortable as any princess, we nipped off to Shirley's for a fantastic (and much needed) home cooked meal.

I stayed on a hard little pull out couch thing that wrecked my hip and reminded me that I am old, but I did manage to get some solid sleep. I was very impressed with the staff... even though both her day nurse and night nurse's ages almost added up to mine, they were very knowledgeable and kind. They also gave us a bag with literature about the unit and a bear for Zoe (that was her second bear of the day as the OR nurses gave her a little one as well). Remember all my packing and planning? Not needed as they brought armfuls of diapers, wipes, formula, bottles... whatever I needed to the room. We're also talking proper wipes here, not the ghetto kleenex-y ones that they use at BCH that made my kids bums bleed. They were really helpful and ran to get anything that I thought I would need. It was almost a pleasure to be there.

Zoe was discharged home mid-afternoon on Wednesday and I was very happy to see my family again. We've managed her pain (if any) with Tylenol and kept her incision and tiny steri strips dry. They should come off in a day or two and then she can soak in the tub in another week.

Wyatt's cardiologist had re-booked him for Thursday afternoon, so there was to be no rest for this family. Knowing how busy he is, I was grateful that his secretary was able to totally rearrange the day to fit us in. I packed up all the kids and we headed off on another doctor adventure. I never really realized how many of these we've been doing until Friday morning when Quinn asked if we had to go to "the doctors". When I answered no, he then asked if we had to go to the hospital, to go for an ultrasound, to go for blood tests... After he had exhausted his list and I had answered no to all of them, he replied "Oh good. I'll just go play in the yard then. If I remember how...". Ouch.

The people at the cardiologist were very tolerant of the Swiss Family Logan descending upon them, with our massive stroller, diaper bags and assorted baby paraphernalia. Zoe and Quinn hung out in the waiting room with the secretary while Wyatt and I went in. Wyatt handled the checkup portion quite well but was pretty restless through the echocardiogram. I had to stoop down and hold his hands as he kept trying to take the probe away from the sonographer, the little monkey. We returned to our gear and the rest of the family for a few moments before the Doctor called me in again. He had the images running and told me that he wanted me to take a look at something.

As you all know, Wyatt has AVSD or Atrioventricular Septal Defect.  Wyatt's Dr. showed me that the ventricular part of the defect had narrowed since the last echo in utero. In other words, the bottom part of the hole was not as big as before, which was good news. In layman terms, this means that the mixing of oxygenated and deoxygenated blood in the heart would not be as much, thereby reducing his symptoms (as of now, he has none). He then continued to say that he wanted to repeat the echo in a month's time. If what he felt was happening was actually happening, we may be able to postpone Wyatt's surgery until he was four years old. The Doc was still going to present Wyatt at Sick Kids (ie: in Rounds) in a couple of months time, but he felt that things were not as dire as expected. This was fantastic news, to say the least. Waiting will give Wyatt's heart time to grow and he with it, thereby making it a little easier. We shall see in a month's time.

I'm not sure if I'm learning to appreciate the little things or if I'm getting better at handling new crises that come our way. The BFF commented the other day that I sound better (ie on her mini psychosocial assessment) this time (post-partum) than I did with Quinn, even though "this time" involves two very complicated babies. I have to agree with her. Even though Zoe has us all up all night long with her colic and revolving symptoms and Wyatt gives me the willies every time he freaks out and turns blue, it's do-able. I don't know how it is, but it is.

Now if I could only get some of that pesky sleep...
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