That's a complicated question too. From what we can tell on the outside, Oliver has been pretty stable; the medicine for his blood pressure and WPW-syndrome continue to do their work, there's some variability in how awake he is from day to day, and some gradual, slow improvement in nursing and how often he sets off his apnea monitor. His developmental assessment two weeks ago was encouraging - for his adjusted age (based on his due date) he is a little behind, but not as bad as the therapists were expecting, and the areas he was most behind on were obvious and expected (like nursing and being awake more often). We'll continue to watch his development closely (Nana, you need to come visit and get him to smile!). But even though he is doing well and seems pretty stable on the outside, we still have a full schedule of weekly lab draws, weekly pediatrician visits, and frequent scans, therapy visits, or other medical appointments to monitor what we may not be seeing on the outside.
Oliver was a "complicated discharge" from the NICU. In other words, coming home from the hospital did not signify the end of his need for intensive medical care, it just meant that after his blood pressure stabilized there was no medical reason for the the doctor to justify his remaining in the hospital. We are so thankful that he is home, but we still have a long road ahead of us with Oliver's medical needs.
You know those journal pages that doctors sometimes encourage parents to fill out to keep track feedings and diaper changes? Oliver has a three-ring binder. It reminds me of my lab book from grad school. We keep track of his meals, nursing, meds, poops, wake-time, monitor alarms, lab work, reports, appointments, etc, everything except the color of his blanket.
Things are slowly getting easier - getting off caffeine last month meant one less medicine, and we hope that he will no longer need the apnea monitor by the end of the month. Several people have asked me about the monitor, so here it is: it consists of two electrodes stuck to a foam band that velcros around his chest. The wires attach to a box (about the size of a small laptop) that records heart beats and breaths, and that sends off a loud, obnoxious alarm when the heart rate is too high or too low or he stops breathing for too long. I am thankful that we could have it to take care of him, but I can't wait for it to be gone. You know how annoying it is when your cell phone/laptop/whatever is low on battery and you have to continue your conversation or work plugged in somewhere slightly awkward? It feels like that, but all the time. It has a battery so it's mobile, but you can't just pick the kid up quickly without taking the wires and box with you.
One thing he has been doing well is gaining weight. The pediatric nurses at the hospital that try to draw his blood every week affectionately call him "Michelin Man." He has four fat creases just on his ankle. FOUR.
Regarding nursing he is still slowly improving. At this point he nurses up to a half of his meal 1 to 2 times a day, and he rarely chokes anymore, which is the big improvement. But he still is just too sleepy to nurse more often and still gets really fatigued easily as he has to work around his high breathing rate. We'll be meeting with a surgeon next week about putting in a gastric-tube (g-tube) that go directly into his stomach so we can get rid of his nasal tube. His doctors are also considering giving him a port - a device placed under the skin to give permanent, direct access for blood work. His weekly standing lab orders only require 0.4mL of blood, but it still takes an average of 4 to 5 attempts (we're usually at the hospital for several hours) and the sample is often clotted badly.
Next week we actually have two full days of appointments in Portland at OHSU and Legacy Emmanuel Hospital. We are so thankful that we could group them all together and make one big trip up there. We'll be getting doing some specialized scans for his kidneys and meeting with a surgeon, and doctors in urology, cardiology, and genetics. Please continue keep Oliver, our family, and all of his doctors in your prayers.
We love this kid so much. I could kiss his cheeks all day. Nora and Elsa continue to help take care of him, and Nora especially is very concerned when he cries and she thinks he needs his "nigh nigh" blanket.
And THANK YOU, THANK YOU to all our dear friends who keep helping us to watch our children, fold our laundry, and bring us dinner. What a blessing you all are. God has used you so many times to help us get through the day!
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