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 July 1 - Erica says: "Right now Erin is still in ICU is critical condition. He is having problems stabilizing his blood pressure. Nimfa is very anxious and worried, please remember them in your prayers." July 1, 2002 9:28 PM (Eastern Standard Time). By host Mike Kurzer: "I just got off the phone with Nimfa. She seems to be OK and had just got back to her room from being with Erin. Yesterday Erin was running a fever and he was not urinating so after a kidney specialist saw him they decided to try dialysis." "Nimfa said Erin just got back from the OR a little while ago from the dialysis and they think it 'will help him a lot'. She also said he had no more 'incidents' today but I am not sure what she meant and she sounded so tired I did not want to ask for details. Now that he is in the intensive care unit, the nurses there do not know me and will not release any information so it is difficult to get any details. Hilary and I will be going down there tomorrow. I'll see if I can have Nimfa tell the nurses it is OK to release information to me so I can get the details directly from them and do not have to bother Nimfa. All in all, the impression I got from her is that Erin did a little bit better today but they really need to see if he responds to the dialysis." July 2 - Joann and Ken, Rotary/GOL, says: "We spoke to Cindy tonight, and she said that Nimfa is a little more positive. Her Aunt is staying for a few more days. According to a medical friend of Cindy's, the dialysis that Erin is on can help him overall. She also said that one of the difficulties with Erin's condition is that his body is used to functioning with very little oxygen. Since he now has a full quota of oxygen flowing through his body, he's having difficulty adjusting." July 3, 21:51:55 (Eastern Standard Time). Nimfa writes: "Erin's more or less the same. I had a talk with Dr. McGrath today and he said that unless Erin gets back to his weight before the surgery which is around 10kg then his chest will remain open. As of now he still has to lose 2kg or more. Also he's still not urinating much as they want him to." July 5 - By Nimfa: "Erin was brought again to the OR to clean his open chest. Finally they decided to close his chest and he was out of the OR around 2pm after two hours. So far he's doing ok although his temperature is a little bit high but Nancy (a nurse) put ice under his back and cold towel on his forehead in order to stop it earlier. He is also urinating more now but his kidney is not functioning normally yet and they are keeping a close watch on it. I do hope that everything will be alright with his chest being close now." July 5-6 (Eastern Standard Time). It's still so important with the visiting-support from the Members of Wayne/Pompton Lakes Rotary Gift of Life, at Deborah Hospital. Host Mike Kurzer wrote: "It is Friday night. I just spoke to Nimfa and it seems like Erin is still improving a little at a time. He got out of surgery around 2PM and has been stable since. I did not have a chance to speak with the nurse so I did not get all the details but I would think the next twenty-four hours will be crucial since his chest was open for so long and his heart will need to adjust again. He is also off the dialysis, but not by choice. Again, I did not get the details yet but apparantly the dialysis was not working as they had hoped so they took him off of it. I believe he has been off of it since yesterday. He is still not producing as much urine as they would like but he is also not getting any worse so they are encouraged by that. A kidney specialist has been seeing him and they will continue to watch him closely. It sounds like they are hoping his kidneys will recover on their own. Hilary and I will be going down tomorrow so I will try to get the details then." "I will also speak to Nimfa about her husband Ernesto coming here. Andy Topp thinks that he will be granted the visa but Ernesto will need to go to the embassy and go through an interview first. Once he has the visa, we will try to get him on a flight as soon as he can come over here. Your prayers help the family Ocampo." /Mike 
July 6 - By Nimfa: "Dr. Esperraza talked to me this morning and he said Ein is doing ok. All his vital signs are ok. The lab results of his bloodworks showed that his
liver has improved a little. As of now they are slowly decreasing his
medication such as the epinephrine which helps his heart to pump. They have
also stopped the sedation but it will still take a while for Erin to wake up
because his metabolism is still slow."July 7 - Nimfa continues: "Erin is doing very well. The sedatives are probably starting to wear off because he is twitching every now and then which is a good sign according to the nurses." July 8 - "They took off the chest tube today and turn off the epinephrine medication. He's not waking up yet so just to eliminate possible problems a neurologist will come to see him either midweek or by the end of the week. He might undergo CT Scan or EEG testing." July 9 - "They took off another tube again from his abdomen. They also took off the bandage in his chest and very little dressing was on top of it that i can see his scars clearly. He still has lots of wound from the tubes that just came out. He hasn't waken up yet. I'm very grateful to Kyle Chesly (nurse) for taking care of Erin. She washed his hair and massages him every now and then to stimulate him. I'm actually doing it with him. We hope this massages will help him to respond more from our touches." July 9 - Joann and Ken, Rotarians, wrote: "We heard from Sarina Matos, who went down to see Erin and Nimfa today. The report is quite positive. Erin's liver and kidneys are functioning quite well. There is no sign of infection in his body. He is off all sedatives and the nurses told Nimfa that he should be waking up today. Sarina said he's moving his toes and looks very peaceful. 'He's a beautiful baby', was her comment. The other good news is that his hands and feet are warm (they had been cold before) and his swelling is down. His color is good and he seems to breathing well." Sarina spent about 1-1/2 hours at Deborah, and she and Nimfa went into the hospital garden to talk. She also got to see Erin in the ICU. "Nimfa seemed very anxious to stay with Erin", Sarina said. "She wanted to be there when he woke up, so I did not spend too much time. Nimfa seems quite relaxed and very hopeful. She is extremely grateful for the visits, attention and the whole Rotary Club and Gift of Life program. She said that she has been sleeping, misses her husband and hopes he can come here. Things are looking up, but Erin still has a long way to go. Keep him in your prayers" /Joann and Ken July 9 - Hilary Kurzer, Erin's host, wrote: "I spoke to both Nimfa and the ICU nurses today and they all say Erin is doing well. He had a good day today and they continue to wean him off some of the medications. He has responded well. At this point they are waiting for him to wake up. He has had involuntary movements of his body, but as the nurse put it, 'nothing purposeful'. He will be seen by a neurologist later in the week, but they are in contact with one daily. All the positive thoughts and prayers seem to be working, so please keep it up!" /Hilary 
July 10 - Joann and Ken Gold, Rotary/GOL writes: "We went down to see Erin today…and it was a truly wonderful experience.
This little boy is getting the best care possible. There is a nurse
assigned just to him, doctors and specialists constantly visiting and a
mother who rarely leaves his side.""Erin has not woken up yet, but he’s about to. You can tell. His movements are bigger and more prolonged. He is responding to touch. And he is trying to open his eyes." "When we got down there, Erin had just finished having a CT scan on his head, as well as a lengthy physical therapy session. He was really tired. His nurse, Kyle Chesley, and his pediatric cardiologist, Neils Giddins, MD, were there monitoring his breathing-lowering the amount of oxygen he’s being given to balance off his own breathing. They are both quite optimistic." "Erin is now eliminating normally, which will help get rid of the medicine in his body. Although he is still hooked up to tubes and wires, his kidneys and liver are starting to function properly." "This little boy looks like a science fiction baby. When his body temperature gets low, an overhead light comes on automatically to warm him. When he gets clogged up, they aspirate him. His bodily functions are being monitored constantly." "Nimfa is more positive each day. She is tired, but stays by his side for as many hours as possible. She says she leaves about 9:00 pm and returns around 8:00 am. She is constantly massaging him and fondling him, which he seems to react to. Today, she even had the chance to change his diaper for the first time in 10 days." "We couldn’t wish for better care, or more caring people. Keep thinking good thoughts and praying for 'our' baby." /Joann and Ken Gold Windows media player's, actual Erin-movie, with doctor-comment. July 11 - Mary Alice Foster, Rotarian reported on: "Well I went south hoping for a miracle, based on Ken and Joann's report yesterday. No miracle, unless you consider that Erin's being alive is miracle enough. He's still asleep, but definitely not comatose. He looks to me like a sleeping child who's about to wake any minute. And the nurses feel the same. He's still moving arms and legs, and today is doing all kinds of movements with his mouth. When Nimfa tickled his chin, he actually moaned and shook his head, as if saying, 'leave me alone.' The nurses continue to be optimistic and say it's just a matter of time. I think it's going to be a short time. Today he is running a slight fever which they're monitoring closely. But they feel there's no cause for alarm. In fact the nurse finds it encouraging--we develop fevers when we're fighting off bacteria. The presence of a fever indicates that Erin is fighting." "Nimfa is amazing. In her position, I'd be a puddle. But she hangs in there with calm and determination. She's a lovely young woman who's a wonderful example for all of us. She told me that Ernesto has been granted a visa and that Mike is working on an airline ticket. I haven't yet spoken to Mike, but I'm sure we'll all hear from him before day's end." July 13 - Erin's father, Ernesto will be flying to New Jersey on Monday, July 15. July 14 - Great news! Erin was extubated yesterday morning and in the afternoon they began bottle feeding him. All IVs are out except for the one on his arm. He began eating solid food today and he had mashed potato, fries and banana. He's whining all day probably because he feels so weak and a sore throat which is expected because of almost two week intubation. He can't sit and move on his own yet but he is getting stronger everyday. July 15 - Erin's host father, Mike Kurzer wrote: "I have some really great news to report. Erin is doing much better. He finally opened is eyes late Thursday or early Friday (I'm not sure exactly) and had been getting more and more alert through the weekend. When we spoke to Nimfa on Saturday she was ecstatic. They had taken out his breathing tube and she was holding him and feeding him a bottle for the first time in over two weeks!!!!! When we spoke to her yesterday, they were trying to get him to eat some solid food and he was complaining and crying a lot more (which is a good sign). He still can not sit up on his own as his muscles are so weak from being in the state he was in but nothing to be concerned about right now. Of course he will still be watched closely and I think he will be in the ICU for awhile but everyone seems to see the light at the end of the tunnel." "And more good news. Ernesto (Erin's dad) was granted a visa and could not wait to get over here. I was able to get him on a flight today and I will and bringing him down to Deborah where he will be staying with Nimfa and Erin until Erin is discharged. I'll probably be back late tonight so look for a full updated report late tonight or tomorrow morning. Thank you again to everyone for your thoughts, prayers, and support. Keep it up. We're almost there." /Mike July 16 - More good news from Mike Kurzer: "In a surprise to even the doctors and nurses it seems, Erin was moved upstairs today! As I've said all along, he's a real fighter and Cindy (the pediatric nurse) told me today he made 'amazing progress' over the weekend since they removed the breathing tube. She also told me Erin was 'one of the sickest kids they've had in a long time...and we get a lot of sick kids'." "It was almost as if Erin knew his father was coming today (and I wouldn't be surprised if he did since I believe Nimfa must have told him). I picked Ernesto up at the airport this afternoon and brought him down to the hospital. He was easy to spot as Erin looks just like him. We had a nice ride down to the hospital and when we got down there I told Ernesto I had not spoken to Nimfa today but I was sure Erin would still be in the ICU. I figured we would go to the pediatrics wing and have them call Nimfa in the ICU to let her know we were there as we made good time and were there before she had expected us. To our surprise we walked into the room and there were Nimfa and Erin!!!!! Erin had just been moved upstairs a half hour earlier. All things considered, he looks great. He still has an IV to administer some medications (but it wasn't even hooked up when I saw him) and he is still on a light flow of oxygen. He is very weak and can not sit up but he was awake and alert and as soon as he saw Ernesto he reached out his arms and started crying as if to say, 'Daddy, get me out of here!' Obviously, he's not ready to go home yet but hopefully it wont be much longer. Within seconds, all the nurses were in the room to greet Ernesto and it was like a big happy family reunion. The nurses told me over and over how great it was of us to bring Ernesto over here. As one of them said, '...these mothers have to go through so much all alone, I don't know how they do it.' You could almost see the weight lift off of Nimfa's shoulders at the site of Ernesto holding Erin." "Barring any dramatic changes, I'll give my next update at the meeting on Wednesday. If anyone is scheduled to go to the hospital this week, check with Cindy first. Of course, you are welcome to go and I suggest you do so if you have not yet just to meet Ernesto, Nimfa, and Erin and to see the great facility they have down there. But with Ernesto there now, it is really not necessary and Cindy is trying to fill up the schedule for when they might be back up here to help out with any needed local transportation". /Mike July 16 - Joann and Ken Gold wrote: "Ron Verblauw just called. He was down at Deborah this morning, but was unable to see any of the Ocampo’s. They were all sleeping when he got there and he did not want them disturbed. The best news is that they are all in Erin’s room on the third floor. He is out of ICU. That said, all the news is very good. Erin is awake and responding well. They tried taking him off of oxygen, but he still needs that so the shunt has been left in him. Erin is still in a weakened state." "Ron spoke to one of the medical technicians and he explained what they had done to Erin. They put a patch on his heart and enlarged the arteries and blood vessels going to his lungs and heart. Because he was in a sleep state for so long, his muscles have gotten very weak. He will need lots of physical therapy, which they are starting tomorrow. Nimfa and Ernesto will be able to continue it when Erin leaves the hospital, which should be in a few days. The technician also explained how they discovered that Erin had a weak, underdeveloped kidney. Evidently, he has a skin tag on one of his ears." "Since the ears and kidneys develop at the same time, usually this is an indication of a kidney problem. Since Erin’s kidney is functioning, and the other kidney is healthy, he should not have any problems in the future. Ron asked whether they would remove the skin tag, but they said that can be done anywhere, anytime. Deborah also gave Ernesto chits for the cafeteria so he and Nimfa can eat three meals a day free. They are also starting to use the apartment the hospital put at Nimfa’s disposal. Now that the pressure is off, the family is catching up on sleep. The prayers and good thoughts are working. Keep them coming." ./Joann and Ken July 19 - Update from Mike Kurzer: "It is Friday night. I have not spoken to the hospital today but Mike Rudolph and Pina stopped by there today and phoned in the following report:" "Erin is doing well. He continues to improve and is making progress. It seems he had a little bit of a setback Wednesday night when they tried to take him off oxygen and change his medications. He did not respond well and had a 'rough' night so they put him back on a light flow of oxygen and adjusted his medication. He did better last night. When Mike and Pina arrived Erin was having an echocardiagram so they met with Nimfa and Ernesto in the waiting room. After the test they saw Erin and after some time to warm up Erin let them feed him and hold him a little (he didn't even let me or Hilary do that before he went in to the hospital)." "They were also there while the neurologist saw Erin today and after taking Erin through a battery of tests he said that Erin is still not as alert as he was before the surgery but that he is pleased with Erin's progress and he sees no signs of any neurological damage. Also, it seems Erin has developed some fluid around his lungs. There are not any indications of fluid in the lungs so for now they will just watch it and try to treat it with medication. We need to remember that while Erin is doing much better, he still had open heart surgery and it is going to take some time for him to recover. It does not sound like he will be discharged this weekend and they are not saying when he will be, but I am still hopeful that it will be sometime next week. Please keep praying. Erin is doing much better but still has a way to go." /Mike July 22 - Mike Kurzer continues: "It is Monday afternoon. I just got off the phone with Nimfa and everyone is doing well. Hilary and I visited Nimfa, Ernesto, and Erin on Saturday with our two boys and they had a chance to play in the playroom at the hospital with Erin for a short while. Unfortunately, Erin still can not really sit up so he stayed in his stroller and mostly watched my boys play. But he seemed happy to have the company. I also gave him the baseball we all signed which he was able to hold on to and even toss a little. While we were there, he had a visit from the physical therapist so we watched her take Erin through his exercises. He needs help sitting up but he is able to stay in a sitting position for awhile without any support and he was almost able to stand up with a little bit of help. The therapist seemed very pleased with his progress so far." "As of today, he is still on a light flow of oxygen which they continue to wean him off of and he still has the IV to administer his medications. He has lost some more weight which is a good sign as it is an indication that the fluid buildup is dissipating. He also had another X-ray Saturday morning which looked good. They are still not saying when he will be discharged but Nimfa thinks it will still be another week and I think she is right. Erin is getting better every day but he still needs some time. It was great to see Erin awake and out of his crib on Saturday, but having seen him before the surgery, it is obvious to me how weak he still is." /Mike July 27 - Nimfa writes: "Erin is doing great. The oxygen support has been removed and also all medications are now taken orally. His physical therapy sessions are still on going and he has progressed a lot. He had 2D Echo and chest x-ray this morning and the doctors said that his lungs are clear and his heart is doing very well. Hopefully we will be discharged soon. If that happens, we will stay with Mike's family for a few days and come back for a check up."
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Erin Ocampo aged 1½
