Goodbye stent, hello swollen kidney.

I do remember that G was in a fantastic mood and other than being overly tired. In fact, he was feeling so decent that we stopped at IKEA on the way home and bought him a new big-boy bed. After a quick, albeit late, lunch of chicken nuggets, fries and apple slices, we were on our way home. I felt so overjoyed that yet another hospital visit and surgery was behind us and that this is what it felt like to have a successful, non-complicated surgery. It was such a difference from open-heart surgery, which sounds obvious but until you've lived it, you don't really get it.

We got home around 3:00pm, I think, and decided that it was probably a good idea for everyone to take a nap. And this is when things got messy.

We awoke to the sound of G crying. Given the fact that he'd just had major surgery, we didn't think anything of it. I brought him downstairs and after a while, it became obvious that he was more than just uncomfortable, so I gave him some Advil and we soothed him on the couch and tried our best to distract him. Sure enough, he calmed down about 45 minutes later. I didn't want him to take the Advil on an empty stomach, so I made him eat some yogurt before the Advil. He refused it at first, but I was able to coax him into it. At around 7:00pm, he stood up to walk to the kitchen where I was standing and I saw the look on his face. I'm never sure if it's mother's intuition or a look of pure panic in the eyes or what, but I knew what was coming: puke. And it did. He threw up and didn't stop. We thought it was just the yogurt, so we cleaned him up, chalked it up to silly parenting and tucked him in for the night. An hour later, I could hear him whimpering "Mommy... Momma..." and I ran upstairs to find him and his bed covered in vomit. We reasoned that he probably was still reacting to the anesthesia, so we cleaned him up and tucked him in again. An hour later, we replayed the previous scene. This time, though, he made it to the bathroom and then began to be sick with real gusto. The poor kid had nothing left in his stomach and when the dry heaving started, I called the hospital. 

After talking to a few different doctors on call, we were told to bring him back to BCH immediately. And, almost on cue, G started vomiting blood. It was 10:30pm at night and we rushed around, packing him up into the car with a bowl, some towels and I drove the 45 minutes back to Boston. Alone. Pulling over every 10 minutes to help my three-year-old vomit blood. You want to feel alone? Try this some time. Or rather don't. It's not fun, trust me.

G and I finally made it to BCH at around 11:55pm and rushed into the ER. He was so lethargic at this point, he could barely open his eyes. There were a few nurses standing around when we walked in, but as soon as they saw me, they ran over, ushered G and me onto a chair and began working on him. After the initial intake paperwork, they found a room for us and the ER waiting game began. G alternated between vomiting more blood and sleeping. The doctor would come in, test the vomit, check him out, ask me some questions, and then leave to go order more tests. This went on for six hours. Six long, long hours...

Now, at this point, I will admit I think I started to crack. I had been awake for almost 26 hours straight, except for a 30 minute cat-nap at home. I was running on fumes and wanted nothing more than sleep. The doctors finally decided to leave it up to me on whether or not we should be admitted back into the hospital, but given that G was still vomiting blood and it had taken two doses of IV meds to get him to stop and they still had no real clear idea of what was causing all this, I gladly elected to call BCH our home for the night. Around six in the morning, they got a room ready and G and I passed out for a few hours. 

In the end, the drama seems to have been caused by the stent being removed and causing the kidney to swell, cutting off the kidneys function temporarily.  He was hospitalized for two days and after ensuring that his kidneys were functioning normally and getting the vomiting under control, we were released and sent on our merry way. 

Who says kidneys aren't exciting?

In rock, paper, scissors, kidneys win.

There are some times when you would rather not remember what happened the day or even the week before.  Most of those times, they involved lots of tequila, and don't tell me I'm the only one, but last week... No tequila, just a kidney. I have a bit to recap, since it's been a while since I've posted and I honestly was thinking that I would not want to post about our 'adventures' last week, but I'm hoping getting it out of my head may purge it from memory.  So, here goes.

After all the tests were said and done, it was found that G had a utero pelvic junction obstruction, or in those fancy medical letters, a UPJ obstruction. The only fix for this obstruction was, you guessed it, more surgery. AD, on the other hand, got off easy with a diagnosis of Grade 3 bilateral kidney reflux. Her likelihood of surgery is about 50/50 right now, so we'll wait to see what happens. We met with the surgeon at the local children's hospital, but since he only did the surgery in the 'traditional' method, we opted to go to Boston Children's Hospital instead and have it done robotically. Here's your biology lesson for the day! A UPJ obstruction is caused when a piece of the tube leading from the kidney to the bladder stops growing and becomes narrow. This causes the fluid in the kidney to drain slowly and in turn, causes the kidney to swell. After more tests, we discovered that his right kidney drained in about 9 minutes, while his left kidney was taking over 136 minutes to drain. The surgeon later told me that it probably takes longer than that, but they gave up after 136 minutes. Poor kidney even disappoints the doctors.

When we went for the initial consult in Boston, we met with a great doctor and G was this close to having the procedure as an outpatient operation, but the surgeon suddenly recalled that our G is a past-cardiac patient which meant that he'd be treated to an overnight stay, just in case. Aw, shucks, as G would say. So, we scheduled G for surgery for early March. We had the pre-op testing on March 6, and other than just getting over a cold that day, he passed with flying colors. Fast forward to just 36 hours before surgery and the hospital calls to tell us that the surgeon that was supposed to perform the pyeloplasty on G has left the hospital and all surgeries are being rescheduled. You know, I'm a silver lining type of gal, but I'll admit I was annoyed that we were pushed off, again! G's open-heart surgery was delayed because of pneumonia and fifth disease and now the surgeon leaves BCH? The nurse assured me that they had another surgeon lined up that specialized in robotic surgery and we went ahead and rescheduled the date for March 30.

The surgery lasted only an hour or so, if I remember correctly. Seems strange now to forget the exact details, but there you have it. Probably because everything else paled in comparison to his awful recovery. The surgeon came in to tell us that G did great, they didn't find anything out of the ordinary and were able to place a stent in his ureter to keep the tubes open while they healed. The nurse led us to the recovery area and we were able to sit with him while he woke up. At first, he was groggy, but the more he woke up, the more miserable he became. He complained of pain non-stop and cried for me to hold him and carry him. After about 30 minutes of trying to calm him, I climbed into the hospital bed with him and we managed, with all his tubes and wires, to have him lay on me in his bed for a few hours. The nurse had to call for additional morphine and Valium to help with his pain, but it finally did subside and they were able to get him out of recovery and into a room.

Sky Burger, again?!

G is one of those kids that has a rather large personal space bubble around him, so the fact that he wanted me to hold him for hours was unusual but post-op boy can have whatever post-op boy wants. When we made it to our room, we set-up camp for the day and got as comfortable as you can in a hospital. This time around, we booked a hotel room down the street, so I made myself a little bed on the window seat and TDH Man went and got some food. Ironically, we were in the same room location as G's CICU room at BCH, just a few floors away. We set up his personal TV and let him loose on the remote and PBS. He fought sleep for a long time, but what else is there to do in the hospital?

Puffy, tired boy demands PBS. 

Looking back now, G's stay was fairly unremarkable. I only say this because I'm writing it a few months later and I honestly can't remember much of it. Blame Mommy-brain, blame all the hospital trips blurring into one, blame whatever, but we were pretty much dismissed the next day, given instructions on how to care for our boy and sent on our merry way. During the surgery, the doctor had placed a stent in the kidney to assist in keeping the repaired tube open. We were told that the stent would need to be removed in about three to four weeks, but that it was a simple procedure and not to worry about it. 

Ha. That should have sent all those red flags a-flyin', but that's another story for another post.

Twins, really?!

Ever since AD was born, people have been telling us that she and G are practically twins. I have to admit, they look A LOT alike. At first, it was funny. Now? I'm not laughing anymore. The similarities are not only uncanny, they're making me nervous. I've already posted about AD's heart murmur; she has an echo-cardiogram scheduled for Monday, November 25. We're still hopeful that what the nurse has told us is true and that AD's murmur is benign. TDH Man and I are trying to ignore the repeated phrases that we heard when G had his evaluations: "Oh, I'm sure it's nothing... it sounds benign!" Instead, we're trying to focus on the odds: a congenital heart defect is pretty rare and to have TWO kids with it? Well, that would just be downright crazy. Right?

And then this past Monday, I took G and AD for kidney ultrasounds. We already knew that G has a duplex collection system on his right kidney, probably related to his microtia and atresia, since the kidneys and ears develop at the same time in utero. A few weeks ago, AD had a terribly high fever, spiking at 105 for a time. The pediatrician's office did a catheterized urine catch and the results came back as having a mild UTI. I have my doubts about that because her fever broke without ever taking any antibiotics and the fever resolved itself. Still, it was scary and because she's so young, the doctor wanted her kidneys evaluated to rule out any physical anomaly. Wouldn't you know it, they found that the tubes in her right kidney are split, so she has two where only one should be. We aren't sure what this means for her yet, but the next round of tests will be on Friday morning. They'll inject her bladder with contrasting dye to see if she has a reflux issue in her kidneys and once we know that result, we'll figure out the next step.

But, of course, that's not all. Here we were, worrying about our AD when G decided he didn't want to be left out of the testing-fun. You know it's never a good sign when, after the ultrasound tech leaves to check to see if she 'got enough good pictures', she brings the doctor on-duty back into the room with her. I have to say, my heart sunk a bit when she walked into the room. She gave me a brief run-down of both results, but I guess I was focused so much on AD that I didn't really understand what she was saying about G. Turns out his kidney is swelling and it's probably caused by a blockage somewhere. So now he has to go for more tests and yet another doctor.  Are you keeping track of how many specialists see G now?  Here!  Let me list them for you!

Maxillofacial surgeon - for Hemifacial microsomia
Facial Plastic and Reconstructive Surgeon - for Microtia
Cardiac Surgeon - for an Atrioventricular Septal Defect and cleft valve
Otologist - for Atresia and hearing loss
Audiologist - for hearing loss
Physical therapist - for gross motor delays
Occupational therapist - for fine motor delays
Hearing therapist - for severe deafness in right ear
Urologist - for Hydronephrosis

No wonder I'm dizzy...

Perspective

I have a day to myself, oh, yes I do. E had a dental cleaning this morning, so I took the opportunity to take a day off and sit at home. Normally, I'd use the time to catch up on housecleaning and call it a day. But I promised myself that I'd do some things for ME this time around. And so, here I am, writing a long-due blog post. What else have I done today for me? Yes, laundry and dishes, but I also cut my nails. That sounds like such a silly, small thing, doesn't it? It's all about perspective.

I've realized more and more lately that everything in my world is about perspective. There are some times when I'm really proud to be able to say I have a decent perspective on a situation and sometimes, I miss the mark completely. TDH Man almost always has a perspective that I envy. He's a person that's open to what life throws at him; I can only think of one time when something threw him for a real loop and it's not something I'd care to have happen again. I struggle with keeping things in perspective, especially when it comes to the kids. G just turned three and he is quite the handful. I was blessed to have my first boy be relatively easy. Perhaps God made him that way because everything else in my life at the time he was born was complete chaos. G, on the other hand, has been a handful since the second he was conceived. I'm trying to learn to embrace that, to watch him as he grows and to revel in the gifts that God has given him even when they don't jive with what I'd like them to be. He's strong-willed? Perhaps that's God's gift to him to be able to persevere through the medical issues that are ahead of him (or even those that are already behind him). He's not affectionate? Perhaps that's God's gift to him so that he won't get his feelings hurt by others when they realize he has physical differences and when he does get to be close to someone, he's certain they love him for him. I don't know, but it's got to be in the perspective.

AD had her nine-month appointment yesterday and the pediatrician found a heart murmur. I smiled. Yes, you read that right: I smiled. Not because I'm happy that he found something that could potentially cause us to have to walk the same path we've walked with G, but because I know that this is part of God's plan. Perhaps AD has holes in her heart, just as G did and God put her in our family because her parents and brother have already gone down that path in life. Perspective.

So now, while I pray that our little girl doesn't have to go through open-heart surgery, I am grateful that we've done it before and we know what's ahead if that's what it comes to for her.

So it begins.

As a Mom, I know that there are going to be many, many times in my children's lives that I'm going to want to protect them from a broken heart. Sometime that'll be possible, most times it won't and when it's not possible, I know my heart is going to break for and with them. Last week, I got the first taste of heartbreak for G, our middle child.

Little ear and all

See, not only was our precious boy born with three holes in his heart, but he was also born with two other congenital defects called microtia and atresia. It came as a complete surprise to my husband and me and wasn't discovered until G was born, (more on that journey later). The long and the short of it is that G doesn't have more than a little earlobe on his right side and no ear canal. He's been found to have about 10% of the hearing he should have on the right side, but believe me when I tell you that he's got perfect hearing on the left. As a result of this difference, TDH Man and I  have discussed many, many times the things G is going to have to experience on his own. Since he was three weeks old, he's undergone therapies for hearing, speech and other issues to prepare him for the day when he turns three and they set him free into the preschool world.

I'm not going to lie: when G was first born, his 'little ear' (as we learned to call it) was all I saw. But gradually, I stopped seeing it and just saw my child, different and beautiful. And now, three years later, it seems that others are seeing it too.

TDH Man has had the week off because our daycare is on vacation, so he's been Mr. Mom. One of the difference between when I stay home with the three young'uns and he stays home is that I tend to stay home. TDH Man, on the other hand, is a bit of a wanderlust and tends to find an adventure for the kids and barrels forth. Last week, he took G and AD to the park. While he was sitting with AD on the blanket, letting her practice her belly-rolls, TDH Man watched G playing in the sand with two little girls whom he'd never met. Later, when TDH Man was relating the story, he tells me that he couldn't be sure, but he was pretty certain that he heard one of the girls point and laugh, saying "Look at his ear!".

Despite three years of waiting for it, it still broke my heart to hear it.

I've had people tell me they didn't even notice G's difference at all. I'm never sure if they're saying that because they're being nice, or if they really didn't see it. As a parent of a child with a facial difference, I'm telling you right now, be honest. Don't make stuff up, just to be nice. I would rather you just didn't say anything at all if it freaks you out that my son has no ear than to give me a white lie and say you didn't notice because I wonder. I wonder so much that it keeps me up some nights. Yes, I understand that you don't want to be uncomfortable around my boy, and that he's got something different in his bag of tricks, but he's still my boy. He's still funny, smart, sweet, feisty and a toddler. But still, I wonder what people think some times. And that's my hang-up, not G's.

See, that little girl pointed and laughed, but G didn't hear her.  And not because he's partially deaf, but because it's the first time that someone has pointed it out and laughed at it and because it was the first time, he didn't realize it was directed at him. I know there will be a day when he'll realize it, but for now, I'm glad he's oblivious because right now, I needed it. I need to watch him and learn from his reaction and remember that no matter what, he's my boy, little ear and all.