Made of Gray

no good, terrible, horrible, bad day.......

Holly D Gray8 Comments
......with a good finish.

At 2am Caleigh's body started the usual shut down mode. This time it was worse than ever. She lost her periphrial IV access due to the swelling. So while they were trying to stick her everywhere.....and I mean EveryWhere; she wasn't getting the meds and fluids needed to help her little body. Finally, it was decided that she needed another central line called a perc-u (sp?). I've seen this done on several babies in need of access in the NICU and with Caleigh's swelling we were pretty certain that it would be almost impossible to get. By the grace of God the doctor got it on the first try and was quite amazed that she actually succeeded.

Before

By this point, Caleigh had no urine output for about 8 hrs, her kidneys had shut down. All the fluid was building and building and nothing was coming out. So they had to stop giving her fluids except a marginal amount of saline.

.....and then it started....by 8am Caleigh was moved over to the oscillator vent at 100%. Her body was so tight that the pressure dressing used for her incision was starting to tear the skin on her belly. By then Caleigh's body had a dusky gray color to it, no more pink baby. Even worse her extremities had started to turn purple, charcoal, black in color. Caleigh's body wasn't getting enough oxygen circulating. Her limbs were cold, so cold that when I held them trying to warm them up, they made my hands cold. Meanwhile, her blood pressure was all over the place, up and down. Caleigh's heart rate stayed above 210 for most of the morning, which is obviously not a good thing. Because of the dreadful swelling, Caleigh's heart was being crushed. She wasn't pumping well and her monitor rhythms were showing distress in the right chamber. They started epinephrine to help the heart muscles pump harder.

Caleigh looked like she did the moment she stopped breathing in her car seat a few months back. Terrible color and tongue fully sticking out. Terrible. The rush of emotions began. This is the point that we started to freak out. Since the beginning of the week we have been telling every person we saw how Caleigh acts up after surgery. How she swells. How she needs the oscillator. How she is a drama queen. Laughter is the best therapy. How this has happened before. How we are READY. Well I wasn't ready and I'm not. Horrible thoughts flew through my head. How could this be. Could this be it. Why. Thoughts of that little girl in the ICU, last time we were here, wearing her beautiful christening gown with family parading through to tell her bye. Yuck, stop it, get a hold of yourself. After almost 10 months, the bad thoughts finally set in hard. I've always had the occasional bleep of a fearful thought, but nothing like this. Lack of sleep, worn out and more in love with Caleigh than ever before; produced a fear like no other. And then there was peace & prayer.

So our neurologist, pulmonologist, pediatrician had come by to check on her. Not much they could do but wait. Then our surgeon came to check on Caleigh and it was decided that she had abdominal compartment syndrome. This is basically where the fluid & swelling is so severe that all the organs start to shut down and all the blood vessels (aorta) are smashed allowing the extremities to lose circulation. The next decision was "what to do?" We all agreed that she couldn't go much further like this. So Caleigh was scheduled to have surgery again (Lucky # 8) in an hour. They elected to do the surgery at Caleigh's bedside in the ICU because she wasn't stable enough to be moved. Then the circus of surgery people came and set up a sterile field. Moved in tons of equipment and then our surgeon came to talk to us about the risks. All bad of course but this was necessary. In all we were out of the room for about an hour. The surgeon went and opened Caleigh's incision, applied a material that will grow with her tissue, put a medicated cloth like material over that and then left her open. He did pull out about 12 ounces of fluid from the abdominal cavity and peeked at Caleigh's intestines, which looked good.

on to the pleasant finish.....

After

When we came back into the room, Caleigh was pink again and they were switching her back to the conventional ventilator. Blood pressure was more stable than before and her heart rate was down to the 170's. She started having large urine output and her heart rhythms were normal. Caleigh's extremities were warm and pink again which was just amazing. The nurses had cleaned her up and of course gave her a pink bed & bow to match the nice pink color of her skin. Caleigh's strength is just a wonderment. I don't know how she does it. Such a fighter and a miracle.
We are relieved and optimistic that this will help her recover faster. In time the surgeon will have to take the outer skin and pull it together, and then staple or stitch the area closed. It will be more than 2 weeks before they try to feed Caleigh and now maybe longer due to this. Our ICU stay could be longer than anticipated, but with Caleigh we should learn not to anticipate much of anything normal.

Amazement & Wonderment, anything but normal.

I know I always say it, but Thank you for your thoughts and prayers. They provide peace to Caleigh, Eric and I during this exhausting and trying time. Please Keep them coming.
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