Christmas morning, the day after Demetri's arriving at home... What a blessing! We couldn't imagine a happier moment. Nor could we imagine a more nerve racking one. Cords, monitors, tanks, medicines, appointments, visits (by nurses and therapists) and NO SLEEP. As much as we knew Demetri, we quickly learned that without the close comfort of the best doctors, nurses and medical facilities, we were scared.
As Christmas night came to a close and the kids began to fall asleep, Demetri began crying and just could not be comforted. Within 48 hours of coming home, we rushed Demetri back to the hospital. After hearing my laundry list of Demetri's medical history, the great doctor picked our six month old bundle of joy off the hospital bed and said, "young man, I think you are withdrawing." Demetri was given a dose of morphine and was comfortably sleeping within minutes. We took Demetri home that night and weaned him off the morphine within 24 hours. (Great CDH SIDE NOTE: [dependency built upon as a result of the surgeries, etc] Narcotics SUCK... outside of their absolute necessity, and even then they still suck. Narcotic and diazapam weaning one of the worst things Demetri had to suffer through. It was horrendous for us as well)
So that was just the beginning. Literally. Within the next couple of weeks, we learned how to survive on less than 2 hours of sleep a night, fix breakfast lunch and dinner for ourselves and three other children, clean house, oh and take care of a special needs baby. "Special Needs". Ha, I used to deny the crap out of that term, but no more. My son has many special needs and that is that. At the time (beginning of 2010) Demetri's "specials" as I like to call them, to name a few, were puking/changing bed linens and clothing at least three times a day due to severe reflux, continuous feeds via feeding pump/g-tube, 1/8 of a liter continuous oxygen a.k.a. heavy tanks to carry around, 4 different medications twice a day, home nursing, occupational and physical therapy and then of course there are the "non-specials" that come with every baby like your standard diaper change. I am certain that had I wrote this back then when I was just learning these processes and techniques, I would have written a lot more with a lot more detail. Nevertheless, we did it all and we did it tired, grouchy but never without a true feeling of genuine appreciation for all that we have.
I remember taking Demetri to the doctors (pediatrician) for the first time. It had been a little over a week since he came home because of the holidays. So there I was, walking into the doctors office with Demetri, carrier, stroller, two monitors, O2 tank, diaper bag, feeding pump and enough hoses and cords to stretch across the Grand Canyon. I remember someone asking if I needed help. I kindly replied that I needed to learn and declined any assistance. Then we met with Demetri's doctor. I didn't look at the other kids in the office or notice if the nurse or doctor washed their hands (though I am sure they did). Nor did I notice the tissue paper on the scale and whether or not Demetri touched anything other than that tissue.
The doctor and I started talking. He received Demetri's "book" from Hopkins, so he was pretty up to speed on everything we were and had dealt with. I felt very comfortable with him and his knowledge of CDH, ASD, and PPHN (three of our biggest concerns at the time). The doctor told me an amazing story about a CDH baby girl he delivered 20 years ago. He told me that she just sent him an invitation to her graduation! I cried. Then I asked him if Demetri could live that long. Amazingly enough, I was still asking that question. I should know better. No one knows, outside of the lord, the answer to this question, but I kept trying to find a human to give me this guarantee. He looked at me and told me that Demetri may very well end up back in the hospital and that his life, like any of ours could be cut short by many things but if I wanted a clearer answer as far as Demetri's heart and lungs were concerned, well then I should talk in depth with his cardiologist and pulmonologist. With that said, oh and a brief mention of my getting more sleep, he sent us on our way.
I was so sure of everything the doctor said except the part about us ending up back in the hospital...that comment, I was sure, was wrong and quite negative...And then we wound up back in the hospital!
Sometime in late January,early February Demetri began coughing more than normal so we took him to his pulmonologist. NOTE: Not his Hopkins pulmonologist but one that came highly recommended from another CDHstenosis and pneumonia. The pulmonary vein stenosis was very scary. Is very scary. The fact is that it may be a life threatening issue in which each pulmonary vein closes off one at a time leading to death OR (and "most likely" per cardiology) that pulmonary vein has a "kink" as a result of the movement in the chest following the CDH repair.
After a week of antibiotics Demetri improved enough to come back home! But not without a new tube... An ND tube was placed for feeding to reduce the possibility of him aspirating and getting pneumonia again.
SIDE NOTE: There is a very, verrry, fine line between advocating for your child and listening to the men and women who study for YEARS to know exactly how to advocate for your child. The doctors sent us home with the ND because they knew that Demetri's reflux was bad and that his puking may have led to his getting pneumonia, which could lead to his PPHN coming back or worsening, and either or both of those could lead to his very premature death. Unfortunately we didn't get that very serious memo. I mean, we were probably told, we just didn't get it. WE DO NOW.
After a few days at home, tired and sick of the ND. We pulled it. After all, Demetri was better. He was happy again, he wasn't coughing and really wasn't puking that bad. Maybe once or twice a day. Okay, I take it back, we didn't pull it, we thought that it pulled out of place so we figured we might as well pull it the rest of the way out. Remember what I said about the doctors who studied so hard and the whole possibility of another, harsher pneumonia bout...Yep, that were to follow.
So back to Hopkins with us all. Initially we all thought the worst. We all, including the doctors, thought that maybe Demetri's pulmonary vein stenosis was worsening.. After many more test and a very scary trip back to the PICU, it was determined that Demetri again had pneumonia. Our GI doctor and surgeon discussed the only happy and safest alternative which would be another surgery. When Demetri improved enough, he went into surgery for the nissen to reduce the possibility of anything coming up and out of his belly. This, if you have been playing close enough attention, was the procedure that I refused when the g-tube was placed during that surgery back in December. Again, there is that fine line between advocating and placing a certain trust with the doctors who have mucho knowledge when it comes to this stuff. I guess looking back, I should have just listened a lot more and listened to a lot more. Meaning: I should have asked a lot more questions and really pondered on what the doctors and I discussed.
After a short recovery from the nissen Demetri and I headed home again!
We'll call this part one. I am physically and mentally exhausted just from rehashing this stuff. Part two of D's first year at home to come. Heads up...It gets much better!