Tonight Justin is bunking in with Leo at the PICU and I get to sleep at home. Ahh actually sleep without waking from the night checks, and alarms every ten minutes..it seems almost decadent.
Anyway so far the news at the end of this Christmas Eve is much the same as the day before it. Doctors still have no diagnosis for Leo's poor condition, and no explanation for the massive fluid collection in his pleural lung space. It must have been the lack of sleep, but this morning after rounds I had a hard time keeping perspective. It all seemed so hopeless and doomed. But after a shower and a nap, we rallied and kept trucking on.
The two main ideas the docs are playing with right now are shunt malfunction, and depakote allergy. However neither of those theories can be easily proved at this point, since boy's symptoms are so illusive. His mental status is very poor, with him in a lethargic state and mostly dozing throughout the day. Tonight however, perhaps because of more relief happening from the chest drain, or maybe because of some Christmas magic, Leo seemed to perk up a bit and focus and recognize his favorite people. He ate a bowl of chicken soup and played with his mozart cube. Then to the total amazement of his weary mum, he smiled, not once, but three times at the silly antics of his uncle and sister. These were the first smiles to be had since he got sick several weeks ago. This was the only present I wanted tonight and it was awesome.
Because of the holiday, tests and labs are harder to obtain so the docs are going to get creative. In the morning they will put in a radioactive trace dye into his shunt valve and then follow the path of the fluid through his body with a special scanner. The result of this will hopefully put to rest once and for all the question of wether or not his shunt is emptying into his lungs instead of his abdominal cavity. Testing the fluid for cerebral spinal fluid cells has to be mailed out and the results would only get back to us on Monday next. This is not acceptable because everyday the chest tube is in, is a higher risk for infection.
The depakote allergy reaction is also proving illusive with negative results within the fluid tests, but the docs aren't discounting it totally yet. Honestly they have nothing else to work with at this point!
Anyway the questions continue and meanwhile we have a very sick little lion on our hands.
But the pluses right now is that his lungs are doing great and have inflated fine after their experience of being squashed and collapsed like in a sardine can. Leo is breathing room air just fine, and his stats are perfect. Big plus there. Also the plus is that he hasn't been getting worse, he hasn't been getting a whole lot better, but there haven't been any sharp declines. He ate some soup, and smiled. All very good things.
Please keep him in your prayers as we continue to wade through this mystery with the PICU team, and so far, there are no plans to send him home. I have a feeling he will be moved into the Pedi Ward however if he continues to stabilize, but if the problem is with the shunt, he will be having revision surgery and will continue on in the intensive care unit. To be honest, we are more used to it then the ward...
Here are some photos from the past couple days...
Thank you to all who have been lifting up our Lion in prayer. He breathes on the wings of your efforts! Thank you, thank you, thank you!
Anyway so far the news at the end of this Christmas Eve is much the same as the day before it. Doctors still have no diagnosis for Leo's poor condition, and no explanation for the massive fluid collection in his pleural lung space. It must have been the lack of sleep, but this morning after rounds I had a hard time keeping perspective. It all seemed so hopeless and doomed. But after a shower and a nap, we rallied and kept trucking on.
The two main ideas the docs are playing with right now are shunt malfunction, and depakote allergy. However neither of those theories can be easily proved at this point, since boy's symptoms are so illusive. His mental status is very poor, with him in a lethargic state and mostly dozing throughout the day. Tonight however, perhaps because of more relief happening from the chest drain, or maybe because of some Christmas magic, Leo seemed to perk up a bit and focus and recognize his favorite people. He ate a bowl of chicken soup and played with his mozart cube. Then to the total amazement of his weary mum, he smiled, not once, but three times at the silly antics of his uncle and sister. These were the first smiles to be had since he got sick several weeks ago. This was the only present I wanted tonight and it was awesome.
Because of the holiday, tests and labs are harder to obtain so the docs are going to get creative. In the morning they will put in a radioactive trace dye into his shunt valve and then follow the path of the fluid through his body with a special scanner. The result of this will hopefully put to rest once and for all the question of wether or not his shunt is emptying into his lungs instead of his abdominal cavity. Testing the fluid for cerebral spinal fluid cells has to be mailed out and the results would only get back to us on Monday next. This is not acceptable because everyday the chest tube is in, is a higher risk for infection.
The depakote allergy reaction is also proving illusive with negative results within the fluid tests, but the docs aren't discounting it totally yet. Honestly they have nothing else to work with at this point!
Anyway the questions continue and meanwhile we have a very sick little lion on our hands.
But the pluses right now is that his lungs are doing great and have inflated fine after their experience of being squashed and collapsed like in a sardine can. Leo is breathing room air just fine, and his stats are perfect. Big plus there. Also the plus is that he hasn't been getting worse, he hasn't been getting a whole lot better, but there haven't been any sharp declines. He ate some soup, and smiled. All very good things.
Please keep him in your prayers as we continue to wade through this mystery with the PICU team, and so far, there are no plans to send him home. I have a feeling he will be moved into the Pedi Ward however if he continues to stabilize, but if the problem is with the shunt, he will be having revision surgery and will continue on in the intensive care unit. To be honest, we are more used to it then the ward...
Here are some photos from the past couple days...
Thank you to all who have been lifting up our Lion in prayer. He breathes on the wings of your efforts! Thank you, thank you, thank you!
Keeping you in prayer. Wishing you were all together for Christmas, but thankful for the smiles and the stability!
ReplyDeleteKeeping Leo and your whole family in our prayers.
ReplyDeleteLots of love and Christmas wishes to the Little Lion and his absolutely steadfast family. Jesus is the same...yesterday, today and forever. God bless all of you in your time of need and during this splendid celebration of our Lord's birth. Hopefully a new beginning for all. xoxoxoxoxoxoxoxo
ReplyDeletePrayers for you all.
ReplyDelete