Health Updates for Andre Nisly
for January 9-15, 2005
Congratulations to
Jon & April Nisly
for their son born Tuesday, January 4, 2005
Currently at Children's Mercy Hospital
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1-9-05
8:00am The nurses had told Jons last night that Andre probably would not have much change during the night. When they checked in this morning, the nurse told them that Andre woke up during the night and was wild. He was arching his back and trying to get the tube out of his mouth. The setting on the ventilator showed his breathing in the 50's when he was upset but otherwise in was in the 20's. The had given him pain medication during the night to calm him down but they said that they are going to quit that. They feel that the pain medicine slows his body down too much otherwise. They do have a PIC line in his head which doesn't look so great but really doesn't hurt Andre and is doing what the doctors need it to do (similar to an IV line see explanation). The doctors also performed an echocardiogram on his heart and everything looked great. They also did a CT scan and everything looked great. There were no other abnormalities in his abdomen area. Correction: Jons haven't been able to hold him since right before surgery. Jon Nislys and Jon Millers arrived at the hospital at 8:30pm on Friday night and by 9:00 they were in surgery. The doctors were waiting by the bed to take him into surgery when they arrived. They went directly there. Jon M did a great job of figuring out the maze of the hospital! Visitors are welcome! 1-9-05 8:30pm - Jon Andre had a rough day today. He was awake and alert this morning when we got to his bed but by midmorning his abdomen was looking a little distended and by noon he was really looking quite uncomfortable. His surgeon ordered an xray. The surgeon was in surgery until about 5:00 this evening and we did not get to talk with him but the nurse said the xray showed nothing wrong. She said he didn't seem too concerned. She did tell us that this is not common. He did seem more comfortable this evening when we left. |
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1-10-05
8:00am - Jon 7:30 AM, Monday. We have great news. He was taken off the ventilator at 12:30 last night and did well all night. He seems to be more comfortable this morning. His abdomen is still somewhat swollen but Dr. St. Peter is not concerned. They had thought that we would be able to hold him today but told us this morning that because of his chest tube maybe tomorrow we could hold him for short periods of time. They plan on starting to feed him through the NG stint. (the tube in his nose) sometime today. 1-10-05 7:30pm - Jon Today was rather uneventful and we are thankful. He had his photo therapy light removed this morning and so his cute little glasses are gone and he can look around when he is awake. They did not feed him today but think they will start tomorrow. They will feed him through his NG tube. His abdomen still looks sore and slightly distended but he doesn't seem to be uncomfortable. They also told us we may be able to hold him tomorrow for short periods of time. The last time we got to hold him was Friday, right before his surgery. Thanks for all your support and prayers! Jon |
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1-11-05
11:30am - Jon They stared feeding Andre through his NG tube this morning. He has done great with it. He is getting 2 ml/hour. That will be increased to 4ml/hour by this afternoon if he is still doing ok. He is awake a lot more and sucks on his little binky a lot. He cries very little and the nurses all marvel at how tough and content he seems to be. His abdomen seems to look better today. The surgeons think he was just bruised from surgery. He is back under the phototherapy light so he has his goggles back on. We are still waiting on the chromosome tests and will let you know as soon as we hear anything. Thanks for the e-mails and the words of encouragement. Jon 1-11-05 8:30pm - Jon Andre had a good day today. He did well with the 2 ml/hour feeding and they just doubled that this evening to 4 ml/hour. He seems to be tolerating it well. April got to hold him this afternoon for a while. They did give us the chromosome test results. He does have an extra chromosome and does have Trisomy 21 or Down syndrome. We were pretty sure that this would be the case but I guess hearing it from the staff made it seem so final. Don't be sad, don't be sorry. We have a beautiful baby that we are very proud of. He is a tough little guy and we truly have been blessed. We met with the genetics staff today and will be meeting with them throughout the next several days. We are taking one day at a time. If you connect to the following link http://www.dssupport.net/inspiration.html you will find a story that was handed to us by a Respiratory Therapist, here at CMH. We are still overwhelmed with landing in Holland. (I know that doesn't make sense unless you read the article, so read it :) Here are some links that we found informative: |
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1-12-05
7:00pm - Jon Little Andre had a very restful day. He is eating a whopping 5 ml/hour. He seems to be doing great. He is still under the photo therapy so we did not get to hold him today. Maybe tomorrow. We did meet the genetics staff again today and were presented with more information. Occupational therapy stopped by this afternoon and we will be starting some simple therapy and exercises to make sure he will continue to get stronger. April's friend, (Jon's friend too) Molly Jo, flew in from Phoenix today. She will be staying at our house and taking care of our other 3 children. My mom and dad have been taking care of the children and they have all done well but it will be a nice break. Thanks to all who have pitched in and helped mom and dad with meals and also helping with the children. We miss them so much and can't wait to get the whole family together again. Thanks for the e-mails of encouragement, the cards, gifts and phone calls. It means so much to have so many people reaching out to us. Jon |
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1-13-05
12:00pm - Jon Andre had another good night. He was wrapped up in a little blanket this morning when we got over there. He is off the photo therapy and has lost his goggles. He is looking so much better. They have doubled his feedings to 10ml/hour and he is still doing great. They had to go very slow to make sure he did not throw up as that would put a lot of stress on the repaired esophagus. We have had some questions from people and so I'll try and address those now. We don't really have any idea how long we will be here. On Tuesday, when we asked, they told us at least 2 weeks. We don't ask anymore. We do know that around day 7 (post op) which would be Friday evening or Saturday morning they will do an x-ray with dye and see if the repair is leaking. If it is then we would be looking at several more days of feeding through the NG tube. If it doesn't have a leak we would start feeding him a bottle and make sure he can swallow. He seems to have a strong suck reflex and this is unusual with Down syndrome. There is no way to know the severity of his Down Syndrome. All they knew with the chromosome testing is that he does have the extra chromosome. As far as what tubes and monitors he still is on. He has a small stint or tube in his nose and a PIC line in his head. He also has a chest tube in his side and the incision is right under his scapula (shoulder blade) and above his little ribs. Right under his right arm. He also has monitors for his temperature, his respirations, and his heart beat. 1-13-05 7:00pm - Jon I got to hold my baby! This evening the nurse said I could hold him for 5 maybe 10 minutes. She said it will depend on how he does and she said they would be watching his monitors closely. So we moved all his cables and tubes and I got to hold him. She came back after about 15 minutes and said I think he is quite content we'll let you hold him a while longer so I ended holding him about 35 minutes. It was great. I had held him a week ago today but not since he was here at CMH. April got to change several diapers today. I don't know why they won't let me? :) We also met with an OT today and she showed us some simple excersises to do while we talk with him and spend time with him. |
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1-14-05
10:00pm - Jon Andre had a long morning. When we got to the hospital they told us he was scheduled for his esophagram (a dye study to see if the esophagus had a leak). He was taken off his food at 4:00 AM and he was not impressed. He did not cry a lot but was very restless and the binky was not good enough anymore. April and I both got to hold him until he went in for the test at 11:45AM. They said he drank the dye from a bottle and did really well. The results of the test were good. The repair has no leaks however, around the area of the repair is a stricture or a area of narrowing in the esophagus. The surgeons think this may just be some swelling from the surgery so we are going to wait for 2-3 days and repeat the esophagram. He was put back on his NG tube feedings and it was raised to 12 ml/hour. He slept most of the afternoon. His chest tube was not removed today. They are doing a chest x-ray tomorrow and if everything looks OK then it "should" be removed. His weight tonight was 1 oz. over his birth weight. Thanks for all the cards, email, visits and prayers. |
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1-15-05
5:00pm - Jon We got rid of his chest tube today. After the surgeon had taken it out, he turned to April and said, "Do you want to give him a bottle?" We did not expect this and so the nurse tried to feed him 10 ml from a bottle. It didn't go as well as it could have. He was tired from all the fun of having a chest tube taken out and also his tummy was full. His feedings were bumped up to 18 ml/hr this morning. We tried it again about 3 or 4 hours later and he did a little better. It seems as if he is not sure how is suppose to swallow. He is doing fine, and this is not uncommon according to the nurses. He also was switched to a bassinet and we can dress him tonight. April and I both held him for a while this morning. It is good to see things progressing but at the same time it is scary at what else we might find wrong when we try new things. Today was a little bitter sweet. It was great to get rid of his chest tube but we would have liked for him to take off and take his bottle without difficulty. The nurse indicated that we would continue working on the bottle feeds over the next couple of days. The also warned us that it could take a little time and to not get discouraged. |