Thursday, July 26, 2007

Yes...It's Late....VERY Late

I sit here at my computer at 3:40 a.m. with a heavy heart. I can not sleep (obviously) and therefore I blog asking for more prayers.

Here are the updated posts on sweet B, most of these are from the members in our group who've been able to go see them. They are all so heartbroken when they leave:

Went to the hospital for about 5-6 hours today. The good news is that they did a GI scan with dye and found that he has a VERY slow digestive track, so the gtube feedings were filling him up and they weren't being absorbed in the 2 hours and then the next feeding would come and basically he was backing up and that's why he's vomitting and gagging and part of the reflux. .

So today they did NO feedings in the Gtube and just all of them through the IV lines and he was better--wasn't in as much pain. D said he was up ALL night crying and siting and in so much pain because they were still trying to feed him then. He is still so listless-no smile, no laugh, no talking. Occasionally he'll take an ice chip for me, but that's it by mouth. He sleeps most of the time, which is good cause he's needs his strength. We stood him up in the bed today and he supported himself with his legs while leaning on me and I had my hands under his arms. That was progress.

7/25/07 - am
Devona called this morning. They ran some more tests and did more xrays on B this morning--last night was a very bad night again. He is already in an ICU of sorts from the surgery, but will now move I think to the cardiac ICU. His heart rate has been dropping into the 70's and low 80's and it's usually 120-130. She said they will have a full team of doctors to evaluate him now--I really think the drs are just as frustrated cause he has so many different things going on at once and they have to be careful treating one issue so it doesn't aggravate another.

7/25/07 - pm
B has been moved to PICU, (pediatric intensive care) which is good because they are monitoring his every breath, but there is no couch, no bathroom, no comforts, just 2 chairs for D and a visitor. Today, they did more tests. The barium from yesterday is still in his intestines, so that means nothing is hardly moving at all. They also diagnosed him to have an enlarged heart, an enlarged right and left ventricle and an enlarged spleen. The heart issues are new but could be related to the high blood pressure. His heart rate is slower than before.

The GI surgeon feels there is a leak either in the gallbladder or the fundo....thing (the stomach attached to the espophagus part). He said a leak is normal, but they normaly go in and do exploratory surgery to find it and seal it, however, B is not strong enough to go through that right now. So he is still being fed through IV's and the PIC line (the IV near his heart). Nothing by mouth except an ice chip or two when he'll take it. He had another swallow study and he swallows okay, but as something travels down to the stomach, things are not aligned so something isn't right. It's now been 9 days since he took anything by mouth.

B is nonresponsive--not really moving and not speaking at all. D said he won't even talk to her. She said he has lost the fighting look in his eyes and just kinda stares and looks scared. Ony 2 visitors are allowed in the room at a time, no one under age 14 and no one that is ill. There is a Ronald McDonalad family room on the 16th floor where D can go to take a shower but she has to leave B to do this now. They are trying to get them into the Ronald McDonald house so they have a room there of their own (her and C) but again, that means they have to leave B and D just can't bring herself to do that right now.

As you can see, the news is just heartbreaking. I can't even begin to imagine. I've also talked to another friend who said the same thing; B looks like he's giving up. She said that when she saw him today he looked like a different person. He just stares. I look at my little man and I can't even begin to imagine what I'd feel going through this. It's one thing when they are sick, but to see the light and joy gone from there just brings tears. So PLEASE keep my sweet friends in your prayers. They need every bit of it.

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