No matter how hard I work or how much money I earn I will never be comfortable lavishly spending money. It took Liz many days (many, many days) of convincing to get me to agree to this vacation. She thought it was an amazing deal, I thought it was way too much money to spend. I’d rather be saving money to actually buy a house again. Although it pains me to say it…Liz was right. We work hard and we rush our kids around every morning and every night. We need this time to unwind and be a family again. And if we work hard and never take time to do something like this then what is the point?
Yesterday was our first full day here. We went out to breakfast, drank margaritas, ate ice cream…twice, went out to a nice dinner and then watched the sunset. Just as newsworthy…Liz and I sat up talking and listening to music. We didn’t have to make lunches, fill out a reading list, sign permission slips for field trips we cannot attend, clean the kitchen, make dinners, feed the dogs, etc……That alone has been a small miracle.
We had a crazy stressful January/February/March. We found out at the beginning of March that Christian will likely need surgery (the year of specialists continued…). Our pulmonologist started treating him for asthma and allergies so he’s on a strict daily regimen of inhalers, chest pounding, and allergy meds. In the meantime, she referred us to an ENT doctor and asked us to get a swallow test done. The swallow test involves him swallowing a special drink or pudding they can track from his mouth to his esophogas. The results showed that he is aspirating fluid into his lungs. The ENT doctor believes that he has a cleft esophagus which is very similar to a cleft palate or a cleft lip and likely developed while he was in utero. It is most likely the reason why he has been so susceptible to chest infections and also why he’s had such a hard time recovering from them.
The problem with the ENT doctor’s diagnosis is that she cannot factually tell us until she puts him under anesthesia and runs a tube down his throat to measure the space between his esophagus and his larynx. The grading system is 1-4, 1 representing mild and not necessary for surgery but recommended, 2: medium and surgery highly recommended to correct the issue, 3: would have required a tracheotomy at birth and 4: not able to sustain life. The doctor told me during his consult visit that she would be able to do the surgery while he was under anesthesia. She also told me that the good news was that he is just old enough to be eligible for the surgery as if this was supposed to be fantastic news for me to hear.
After I heard the words, “in my opinion he needs surgery to correct it” she may as well have been Charlie Brown’s teacher. As hard as I focused I could not hear any other words coming from her mouth. I tried hard to focus because I know as a mom who just heard that my kid needs surgery I should have 1 billion questions and also because this attorney I’m married to is going to ask me all of those questions after this appointment. But my brain wasn’t keeping speed with her words and she knew it. She started to say things like: so most parents ask me….X question….and I tell them Y answer. I remember a story she told about an 8-year-old she just did the surgery on successfully and in her words, it was easier because she was older.
My head was spinning…. his tiny esophagus…he has to stay in ICU for 2 days after….waaaa whaaa….complications…..waaa whaaa….closing the space in his throat. I wanted to cry and at the same time research her credentials. I wanted to force her to look into his eyes and know that it wasn’t some run of the mill procedure she does from time to time, but our whole world on the line. And at the same time I wanted to sprint out of the door and protect him from this crazy lady with a scalpel. Instead I took the card she handed me for her surgery scheduler, asked an insignificant question, and walked out feeling numb.
For 3, almost 4 months now we have been giving Christian “nectar” like substances…he’s better with thicker substances. We found a good solution for milk so we now mix whole milk with a Kefir (thick yogurt) drink and a little bit of protein powder so it’s not so bitter. There isn’t really a solution for water and we have to use a thickening agent called “Thick-It” … super creative I know. It’s basically chemicals and water mixed together and tastes like shit so we poor some juice and mix it with the thickening agent and boom…disgusting gelatinous juice.
We also had multiple visits to an occupational therapist who believes that Christian may have an issue actually feeling the liquid in his mouth and since he can’t feel it well he doesn’t have the muscle coordination to swallow it. She watches his movements while he plays and watches him eat. She gives me mouth exercises to ‘wake up his mouth’ and tells me we need to be brushing his teeth 5-7 times a day. No offense to her, this is her job, but I’m pretty sure she doesn’t understand what life is like with 3 kids. Hell, I forget to brush my teeth in the morning sometimes.
Three days after the appointment we were grabbing dinner out for my birthday when my phone rang. It was the surgery scheduler calling to see if she could schedule the surgery for before the doctor’s maternity leave in April or when she comes back later in the summer. I quickly told her the summer would work much better and that I would call back to schedule. Liz talked to our regular pediatrician later that week. She agrees with the ENT that he likely needs the surgery but said we didn’t need to be in a rush to do it. She also believes that his two incidents from 3 months old and 6 months old when he vomited and passed out may have been due to him aspirating into his lungs and his little system not being able to handle it. She was mad with herself that she hadn’t thought of it before. Honestly, we would never blame her for not putting two and two together. We trust her and her giant brain and at the time we felt like she did everything in her power to explore his unexplained episodes.
Between the surgeon’s maternity leave and our pediatrician’s advice we have happily been putting our heads in the sand. We’ve been religious about the medication regiment and his liquids and his chest and lung health has been significantly better (with only one emergency room scare). He’s growing like a weed…unfortunate for us he’s thinning out but he’s getting tall. I’ve requested another swallow test before we just go ahead and agree to surgery. Keep us and the Bear in your thoughts and prayers that we can avoid the surgery.
The above just explains the health of one of our kids in the months leading up to this vacation. We had plenty to work through with the other two boys but that seemed like nothing compared to possible surgery. My new job, which had me on an airplane and away from my family every week but maybe 2 during that 3-month span, was also a full court press. So….when I say we needed this time as a family, words just don’t do it justice.
We loved Mexico and it was very much the reset that we all needed. Puerto Vallarta is beautiful and clean and safe. Just the other night and a good 7 weeks since our vacation, we were laying in bed and Mckay said, “Mommy, I loved that time we spent together in Mexico” And right there our money was well spent.