25
December
2008
The end of the year is when one is supposed to look back and see how far you’ve come in the past twelve months. As far as Dorrie goes, I’m not sure we’ve really made all that much progress. We are home, yes, but last Christmas she was on nasal cannula; now she has a trach and is attached to a vent. Last Christmas she was eating about 15-20% of her food by mouth, but this Christmas we are down to 0%. Last Christmas she was working on her head control and starting to lift it up a bit; this Christmas she’s still doing that. Last Christmas we could hear her making sounds; this Christmas the trach prevents that.
The biggest changes are that she is home, that her oxygen saturations are quite stable, and that she is much bigger than last year (she was about 9-10lbs then, she’s 21-22lbs now, and about 7 inches longer). She hasn’t really made any developmental progress to speak of — still, at least we can sit her up now in a seat and strap her in.
But she is a happy baby, and she enjoyed her Christmas, even if it wasn’t quite the Christmas we imagined having this year.
Dorrie helped us open presents, this one from Aunt Cookie.
She was happy to see Grammy.
She got to wear her Christmas dress again, this time with cool slippers, courtesy of one of her nurses!
And then it was time for a nap.
Posted: moving forward... or not, our little witch
15
December
2008
The middle of last week was a balmy 60 degrees around here.
The next day, it started to rain, and the temperature dropped, and ICE arrived. Conditions deteriorated massively between about 9pm (when I got home from grocery shopping) and 11pm (when the nurse arrived at our house).
The power went out first around 11, and stayed out for about a half hour. Luckily, we had anticipated something of this nature, and had swapped Dorrie to the suction machine with the battery in it, so it was more or less charged. Our big vent battery was also charged. We disconnected her from the non-running humidifier and stuck an HME into her vent circuit. Another plus, we FINALLY got our equipment provider to switch us from the non AD/AN friendly O2 concentrator to liquid O2 just 10 days before all this happened. So our oxygen supply was not dependent upon electricity.
After the power came on and seemed as if it was going to stay on, I went to bed, and managed to sleep through the next outage, which lasted from about 2am – 6:30am. Bob had the foresight to begin recharging the vent battery directly it came on, so when the power went down once more at 9:30am, it was mostly ready to go again.
The power company couldn’t predict how long it would be before we got our power back, so we were trying to figure out what to do exactly if it should stay off too long. Obviously staying at home is the preference — hospitals have sick people in them and we have not had great experiences with the one in town anyway. But reports suggested that most of the northern part of town had power, so getting a room in a hotel and sneaking Dorrie in was an option.
Happily, PSNH restored our power by about 1:20pm on Friday and it has been up since then, so we never had to pick where to go. We are on the priority list with them, but there’s also a fire station just down the road, so we may well be on the circuit with them too. We’re also fortunate in that we live in a densely packed area which is right next to the highway — there are trees around but not so many as in some parts of town, and the roads tend to be kept pretty clear. As I’m writing this though, there are still over 15,000 people in town who don’t have power back, and over 150,000 in the state! It looks like power at my mom’s house didn’t come back on until some time today (she had already planned to spend the weekend here) as all of her food in her fridge was still warm when she got home this afternoon. PSNH has a twitter feed that actually appears to have someone reading it and responding to peoples’ questions.
Posted: we interrupt this blog
4
December
2008
When Dorrie was born, there were quite a few other small babies who joined us in the ICN around the same time. Most were 27, 28 weekers with uncomplicated courses (comparitively) who spent some time on CPAP and then nasal cannula and were soon just in the ICN to grow and learn to eat. There were two babies, though, one a 25 weeker and one a 24 weeker, whose parents we would talk to and who had a pretty rough course of it. The 25 weeker eventually transferred back to a hospital closer to her parents’ home and unfortunately passed away last April. We received some more sad news a couple of weeks ago. This was originally published in the Manchester Union Leader, but I copy the text here since obituaries don’t stay up for very long.
Andrew-John “A.J.” St. Jean
SWANZEY — A.J. (Andrew-John W.) St. Jean, 15 months, son of John M. and Bridgette K. (Munday) St. Jean, died Oct. 30, 2008, at Dartmouth-Hitchcock Medical Center, Lebanon, after a long illness.
He was born July 22, 2007, in Lebanon.
He loved his family and loved to be with people. He had made many friendships over his short life and was loved by all of those who met him. He loved to smile and flirt with those around him.
Besides his parents of Swanzey, family members include a sister, Bella C. St. Jean of Swanzey; his paternal grandparents, Francis and Carole St. Jean of Hooksett; his maternal grandmother, Priscilla Favreau of Manchester; his maternal grandfather and step-grandmother, Ronald and Virginia Munday of Seabrook; and many aunts, uncles and cousins.
He is also survived by his special extended family at the Dartmouth-Hitchcock Medical Center in Lebanon, where he spent many months.
Memorial contributions may be made CHaD Program, Dartmouth-Hitchcock Medical Center, One Medical Center Way, Lebanon 03766 or to David’s House, 460 Mt. Support Road, PO Box 660, Lebanon 03766.
He was a strong little guy, and he fought hard for a long time.
Posted: we interrupt this blog
4
December
2008
I’ll try to get some pictures up in the next few days, as it’s been a while since we’ve had any of those.
As far as updates go, the second half of November was pretty busy, but stable from a health point of view. Dorrie got to meet her grandpa for the first time, along with his friend, and we had a nice little visit. It had been quite a long time since Bob had seen any of his family, since they live out in the midwest.
We’d also been scheduled to go back up to the hospital for an appointment the day before Thanksgiving, but based on what we knew, we were dubious that this appointment would be worth the 6 hours of overhead involved in getting us and Dorrie up there. It just took us 2 months of periodic requests to finally get the specialist involved to confirm that the appointment was useless — he still can’t do the test he wants to do because of one of the medications Dorrie is on.
So that was a relief. The last thing I want to be doing during cold and flu season is taking her out. I can’t help remembering that it was 2 days after her Synagis shot last February that she came down with the cold that eventually landed us in PICU for 65 days. I’d like to avoid a repeat performance.
Dr. Optimist and her nurse have come around to our way of thinking, because though they had originally (in August or Sept) said that we would have to come to the office for our visits over the winter, they changed their minds and today made another home visit. Dorrie objected mightily to the shots and screamed for quite a while after. But at least her exposure to exotic germs was kept to a minimum.
We finally also have a second nurse again. Our original nurse from back in February had some availability again and so she’s now coming on Monday and Wed during the day. I’m still getting used to her; we’d only had her for 3 weeks before Dorrie got sick, so I didn’t really know her all that well to begin with. My major peeve right now is that she speaks too softly. Now this might normally be a plus when dealing with babies, but Dorrie’s hearing disorder makes it difficult for her to distinguish what noises she should be listening to and what are background noise. So we try to speak loudly and slowly to her to give her some assistance.
Posted: hospital crack, moving forward... or not, our little witch, trying to stay healthy