Well, as anyone who is a parent knows, kids like to keep you on your toes (totally unintentional rhyme there). Grif settled down a lot today (more on that later), but Regan has decided to let us know that she is in need of a little more TLC. Last night was VERY hard for her. She was up most of it, and Fred took care of her and let me sleep in between pumping sessions. At one point when he was sitting by her bed trying to soothe her to sleep she looked at him and said "I'm very glad you are home now, but I don't know if you love me anymore." He said it broke his heart b/c it wasn't said in a bratty "you don't love me anymore, now let me run with the scissors" way, but in a very solemn sad way. Of course when he shared that with me this morning it broke my heart, so we decided we had to do things a little differently from now on. Fred stayed home with Regan, and I went to the NICU to be with Grif and stayed only until around 2 p.m. B/c Pernilla (I will never stop singing that woman's praises) was his nurse again today, I felt very comfortable leaving b/c I knew he was in excellent hands. Right now Fred and Papa and Regan are swimming, so I have a moment to "blog."
As for Griffin, we were thrilled to learn that we do NOT have to do a bone scan, b/c his sed rate was fine (yeah!). His labs are looking better and he remains afebrile. I am still holding my breath that the culture which was plated yesterday at 9 a.m. stays negative. Needless to say, I will jump anytime the phone rings! As of when I left the NICU we didn't have a "formal read" on the echo, but as I said yesterday the preliminary looks good so we are thinking positively. And wonder of wonders, his scalp IV is STILL in place!!! I didn't even want to vocalize this to Pernilla, but she said it first: the site around it looks even less red than yesterday, and it is flushing like a dream. This weekend will probably be the most nerve-wracking of my life thus far b/c Pernilla is off (yes, I have come to depend on her), so if he loses that line and we have to start another one, I'm not sure who is on and if they will be able to do it. So, in other words: keep those "stable peripheral IV" prayers coming strong!!! We're still not sure how long he will need the IV antibiotics. The countdown starts from the first negative culture which we hope will be yesterday at 9 a.m., but, and here is where the 'art' part of medicine comes in: each ID Attending has a different threshold for how long he should be on them. I don't think anyone, even the most 'cowboy' of attendings would opt for less than 7 days of in-house antibiotics, but my ID Attending Angel (whom I descibed yesterday), said she would probably go for 14 days, as would a few other attendings, however the doc on next week (whom I love and trust) is a little more "gutsy." However I am not in a gutsy mood these days, and as much as I want Grif home, I also want to blast this infection to smithereens and if that means keeping him hospitalized longer to kill it completely, so be it. Of course the longer he is in the hospital, the more risk there is of him picking up another infection, so it really is a judgment call. I will have to talk with the ID doc, and see what we can come up with, provided all else remains stable.
Griffin had some visitors today. Amber (my amazing friend who has gone far above and beyond the call of "friend" duty, and is our own personal webmaster -- obviously everyone who knows me knows I have NOTHING to do with how professional our website looks, that is ALL her) and her equally phenomenal Mom (and Grif's honorary Grammie) Susan came to see him. He showed off making lots of cute faces, and then proceeded to make eyes at them while his diaper was being changed. B/c I see G everyday, I don't see the incremental changes in him, but Amber kept remarking on how much better his color looked since the last time she saw him -- a lovely observation!
Well, I'm off to pump, and speaking of pumping: Grif was at the breast for about 30 minutes today and latched on beautifully several times. I was very proud of him. It will be surreal to nurse him without having to maneuver around an IV, worried that I will somehow dislodge it (no matter how many times Pernilla reassures me), or change his diaper without all those leads. I can't wait!
I am convinced that all you wonderful people thinking and praying for Griffin are sending him the positive energy he needs to get better, and for that I am forever grateful. I also want to thank everyone who has emailed us and offered to help in any way they can. It is said the measure of a person comes out in a time of crisis, and I can say that as far as our friends are concerned, everyone has shown us more generosity and good will than we could have hoped for. Thank you so much.
-Sheila
4 comments:
Yea, a better report! I can rest a little bit better now knowing the antibiotics are kicking it nicely. Wonderful to hear that he is eating better and hopefully gaining more strength each day. Still thinking good thoughts and good ju ju to gor his and your way!
Gotta love changing diapers with all the leads in the way, I feel your pain!
Susannah
Good news!! You,Fred and Griffen deserve a big break and he looks great in the pictures. Can't say enough about the great staff at Choc--he couldn't be at a better place. Blessings to you all--keep your spirits up, it helps!
We LOVE the second-last picture where the look on Griffin's face says "enough with all the fuss already - let me get back to that cool latching thing!".
Way to go Griff!
Love, Arthur & Conrad
So glad for positive progress. Amber is right, Griffin does have better color to him, and he looks much more alert too. He's a cutie!
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