Health Updates for Andre Nisly
for April, 2005

Congratulations to Jon & April Nisly
for their son born Tuesday, January 4, 2005
4-8-05 Friday PM - Jon 

We are at home! We got home about 4:15 this afternoon. It is so nice to be at home. Andre has been doing really well. He continues to act more like himself and smiles and "talks" like he did before he got sick. Andre has an appointment on April the 19th, with the surgeon, to discuss and probably set up surgery to dilate his esophagus and a Nissen Fundoplication. This is a wrap around procedure of his stomach. He will almost certainly have reflux from his stomach up into his esophagus so they are suggesting we do the procedure at the same time as the dilation. This would be a scheduled procedure and we would need to be in the hospital for 5-7 days. This procedure is to correct the stricture from the scarring of the esophagus from the first procedure and is not related to what he was hospitalized for this time. Thank you for all your prayers and concerns. The children were happy to see us but it seems like they had lots of fun while we were gone. Thanks to those that help take care of them. Jon
4-7-05 Thursday - Jon 

10:00AM
Well we are not going home today. They had told us that he might be able to go home today if we can get him off the oxygen and get him to eat. The swallow study showed that he inhaled a very small amount of fluid in his lungs when he drank his bottle. It was a small amount but they are going to have us mix a thickener with his milk. Andre is not sure about the texture of the milk now but he will drink it. We are very thankful for this. He seems to be breathing ok but when he goes to sleep his oxygen level drops enough that they feels like he needs it. They are saying maybe tomorrow now. It will just depend on how well he does.
4:30PM
Andre has been eating well all day. We have to thicken his milk but he seems to be adjusting to this. The doctor was just in and she wants to send us home with a suction machine and with oxygen. He seems to be feeling a lot better. April has spending the night here at the hospital in Andre's room. We got a room at the Ronald McDonald house last night so I spent the night there. Hope to be home tomorrow. Jon
4-5-05 Tuesday - Jon 

5:20 AM
Well we are back in Kansas City. Andre has not been eating well. This started last Sunday. Throughout the week he didn't seem to have much of an appetite and ate less and less. April took him in to see our doctor earlier in the week and again on Saturday morning. By Saturday morning he had lost almost a pound and our doctor told April that if he continued not eating well that we would need to put him into the Hospital. We contacted the surgeon here at Children's Mercy on Saturday morning and he said it could be that his esophagus was closing down and he may need to have it dilated He said he would get a test scheduled for Andre when we here in KC (We had a previous follow-up appointment scheduled with the surgeon here in KC for this week.) Andre drank only 2 oz. from Saturday night at 10:00PM until Sunday morning and the decision was made to put into the Hutchinson Hospital. He was admitted around noon on Sunday and they started an IV, took some blood for lab, got a RSV test and a chest x-ray. The blood work and RSV were all normal. His chest x-ray showed some inflammation and signs of bronchitis. They started him on breathing treatments, and oxygen. By Monday morning he was no better. He was having trouble breathing and was still eating very little. Earlier we had planned on taking him home Monday afternoon and leaving for our appointment in KC on Tuesday morning Andre was not getting any better and our doctor thought we needed to try to get him here to Children's Mercy Hospital. It was decided that we needed to bring him by ambulance. April rode with him and I drove. Andre and April arrived here about 9:00 PM. They took another chest x-ray and increased his IV. The doctors told us he was in severe respiratory distress. The warned us that he may have to be put on a ventilator. He is not allowed to drink anything because of some other tests they want to do on Tuesday. One of the Dr's came in a little while ago and said the chest x-ray showed he has right sided pneumonia. They will continue the oxygen and start him on antibiotics. They think he is doing well for all that he has going on. It is nice to be here at Children's Mercy and we have some of the same nurses taking care of him that took care of him in January. I will try to update daily while we are here. We have no idea how long we will be here and haven't wanted to ask. Please pray for us. It isn't easier the second time around. Maybe Andre will do so well that we can go home in a day or two. Thanks for your support, Jon

10:00
Andre seems to be doing much better. His nurse for today was here yesterday and she said he looks 100% better today the yesterday. They did the esophagram yesterday and it seems like the esophagus looks pretty much like it did back in January. He will need to have it dilated but we don't know when. They are thinking in the next couple of months this would be scheduled. It has been a little frustrating up here because everyone has different ideas about what is wrong with him. Dr. St Peter, the surgeon that did the first surgery on him, is going to come and see him today.
Andre is scheduled for a swallow study. They will give him barium and x-ray him as he swallows and see if any is leaking into his lungs.
Things change fast around here it is not 45 minutes later and April just fed him 2 oz of milk. They do still want to do the swallow study but they are going to let April feed him because he does eat differently the some babies. This will be done at 1:00. We are praying that this test is normal. He would need other procedures.