The good, the bad and the ugly

The good news is that Reuben was cleared of having pneumonia today by xray. He's still fighting this virus (although we're continuining with the Cipro antibiotics in case there is a bacterial infection still present), has a terribly raw throat (difficult for our mostly tube-fed babies to remedy), sleeping a lot, off formula/only on Pedialite, 10hrs of therapies cancelled this week for him, and now an ear infection which Dr Charlie Golden found. I've just realised I've entitled this part the Good News, but I think it is. No pneumonia is good news.

The bad news relates to my scan today at 32 weeks, the baby actually measuring 34 weeks and with a stomach measuring 37 weeks (I’m not sure how. My appetite has taken a nose dive in pregnancy, but I guess what I do eat, the baby takes). The baby is 5lbs 9oz, pretty large. The baby has what my ob/gyn described as an abdominal cyst, something you might see on other organs like the kidneys or brain, but not in the abdomen. My mind of course has transposed the word cyst with something far more frightening. I’ve now been referred to a perinatologist and with Dr Bo’s help, the appointment has been expedited to happen on Thursday. I left in tears.

On so many occasions, I have been reminded by friends during the crisis we find ourselves under in so many areas, that I have a healthy baby growing aside. Suddenly, that comfort factor has been taken away. My stress levels are at an all time high.

The other bad. I wonder how much stress can be piled on one family. Our financial crisis in the UK, the days of late when we get calls from the nursing agency saying "You owe us $15,000 to be paid by tomorrow" as ridiculously they put Reuben on a $5,500 share of Medical cost every month pending the Medical waiver. That's saying, they've somehow calculated we have $5,500 spare cash hanging around every month just to cover nursing. Our social worker at the Regional Center has pleaded our case to Medical citing humanitarianism, and that Reuben has a right to the waiver due to his complexity of needs. After being sent in the wrong direction at the outset after Reuben's birth, in those murky days of dealing with basic needs survival, the ability to then trace ourselves back from whence we came, or cutting across the huge chasm that lies between our path and that projected by a correct turn back then, seems impossible. The further we've gone along the wrong path, the harder it has been to get back.

The ugly. We unanimously agreed between us this morning that our night nurse has to go despite being 6 weeks away from birth now. It's interesting that the agency should advertise for nurses (I checked on Craigslist as I took the bull by the horn and posted one myself for a nurse) that can help relieve the burden on families with kids with special needs, and yet the list of 20 nightly tasks is too much for a nurse who much prefers to sit and watch videos on Reuben's player (last night 2.30am) and who consistently raises the suspicion of having slept. Why would a nurse not instintively feel, I have only an hour's work to do each night, the least I can do is help with Reuben's, not ours I must stress, wider needs and thus make this family's lives easier. The crunch I guess came by her not calling when sick last week, neither us nor the agency, and upon being questioned about it replying, "Yes you're right, I suppose I could have called". Kristina carries out a similar list of tasks each day, along with actively being involved in PT, OT, Early Intervention School, decision making, liasing with Drs, oh, and having a jolly good play with Reuben too. It's like having another me around. Yes, my expectations are very high, but for night nursing, they're rock bottom really. Enough said.

Please God, as Jennifer says, can we be blessed with some good karma so I stop crumbling over all of this. I try to remain upbeat on this blog for Reuben's sake and will in time probably delete any sadness as is here, but in the absence of writing a separate journal I have to exorcise these thoughts.

The great news. The Flock of Swanns are flying down and are to grace us with their presence in LA as John is being relocated about a 10 minute drive from us after graduating from the Academy in October. How ironic I should hear this news today after Kristi reminded me that it was a year ago today that they visited us at Children's, around the time of the trach op whilst on a trip down from the Bay area. I can't believe I'm to have such a great friend so close by to us and a family with whom we can share the highs and lows of CHARGE.