Here's our little Jellybean, almost three weeks old now. I absolutely cannot believe it. Jason and I discussed today that we kind of feel like we are walking in a dream state, or maybe more like zombies. Yes, I think I feel much more zombie-like. We are absolutely exhausted but we are also absolutely good. The last week or so has been fairly uneventful compared to the first couple of weeks, but it has been full of ups and downs, for sure.
Jolene's doctors have been slowly adjusting her ventilator settings so that she can be weaned off of it and then can "advance" on to the c-pap machine. She is basically learning how to breath with one lung and her body is learning how to process all of the gases (oxygen, CO2). She got her bandages taken off of her surgical incision and I must say I am impressed. The line looks great and the girl is a fast healer! (I'm a little jealous - her surgery scar looks waaaaay better than mine!). She also got the stitches out of her neck where the ECMO cannulas were.
The big issue this week has been feeding. Doctors gave the go ahead (finally!) for Jolene to start receiving milk through her feeding tube. Up until now she has only been getting nutrition through her TPN (think giant cocktail of electrolytes, minerals, etc.) and lipid (nutritional and essential fats) lines. In the meantime I have been pumping milk for her (I think the whole pumping topic may warrant a blog post itself) and the hospital stores it for when she is ready. At first it seemed everything was going swell. But then Jolene started spitting up the small feeds she was getting, along with really dark, granule-like gunk (looks almost like coffee grounds). It was somewhat alarming but the doctors didn't seem too worried. The "gunk" was old blood and they said as long as it wasn't red they would keep feeding through it to see if it got better. Eventually the coffee-ground stuff went away, but the spitting up did not. One of the worst issues CDH kids have is eating. Go figure! They make it through all of the life support, ventilators, surgeries and lung issues and they end up having eating problems. It makes sense if you think about it though...all of their organs have been rearranged and things are bound to get a little off kilter in the process. Zantac was prescribed for the reflux to see if that would help but no luck. Next an upper GI/bowel study was ordered to make sure that there wasn't anything really wrong (dye is injected and X-rays are taken to see where it goes). Thankfully no blockages were found, but there is some rotation of the stomach and intestines (not a huge deal for right now as long as there are no blockages). Next up was erythromycin, which is actually an antibiotic but it is also useful for getting things flowing in the right direction. Still some spit up. Next they wanted to do a really slow continuous feed. This seemed to be going well. Until yesterday morning.
I came in to see Jolene and the nurse was trying to calm her down. Occasionally she has coughing/choking fits from all of the secretions caused by being on a ventilator and needs to be suctioned out and calmed down. But apparently this episode was huge. Her heart rate and oxygen had dropped scarily low and she was as white as a ghost. No one can really know for sure what happened - maybe a tube got kinked, maybe she was trying to spit up and it got stuck in the tubes, maybe, maybe, maybe. Feeds were stopped (for fear of aspiration) and tests were ordered - X-ray, CBC (complete blood count) were first. X-ray looked fine but the CBC showed that Jolene's hematocrits (ratio of red blood cells to total blood volume) were super low. So, a blood transfusion was ordered and an IV had to be put in because her picc line is too small to deliver blood products. Blood cultures and a urine culture (via catheter) were also taken because the white blood cell count was a little elevated - not enough to be a definite indicator of infection, but Jolene is now on more antibiotics just in case there is an infection while we are waiting for the cultures to come back. They also tried to move her feeding tube down into her intestines, to bypass the stomach and help with the reflux issues for now. However, another X-ray showed that the tube only curled up in the stomach (and Jolene was not happy about it). Since the nurses couldn't get the tube to cooperate, we are waiting on the radiology and tube specialists to get it into place. And no feeding until then. This girl is hungry!!! (She told me so several times). Jolene has begun sucking on her mits and also a small pacifier. How she does this with those tubes in her mouth are beyond me, but she is going to town!
So, yesterday was full of Jolene being messed with, and you should see how mad this girl gets when people bother her. She's got the nasty sideways glance and the swinging arms already mastered, as well as the silent cry (because of her ventilator) and the frowning, purple face. There is no questioning whether Jolene is upset! But this feisty-ness, I believe, is what has gotten her this far. She is incredibly strong physically and mentally and it has allowed her to continue to make progress each day, even when she's having a not-so-good day in other areas (despite everything going on yesterday she was still weaned a bit on her breathing rate). Today was a much better day...her skin was pink again (hematocrit levels were almost double what they were yesterday) and nobody needed to mess with needles and tubes. She was awake for long periods of time and was exercising like crazy - trying to wiggle herself down in her bed and grabbing her tubes for the bazillionth time. We have to put mits on her hands and hold her arms down with a tight blanket over her bed (she gets too hot to swaddle) to try and prevent her from grabbing them, but she still tends to wiggle her little hands up. I think we may be in trouble when this feisty little Jellybean finally gets to come home. :)
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Here are big brother and sister at the hospital this weekend,
looking over the light rail and cars from the skybridge.
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