This webpage is here to keep everyone up to date as to how Jason is doing. Jason was born on Friday July 28, 2000 at 2:38 am. We knew that Jason had a heart defect, but not how serious. Jason was immediately transfered to Strong Memorial Hospital(about 45 minutes from home). He went directly to the NICU. He had an Echo and was diagnosed with HLHS on Friday. Wow, how many tears can you cry!! We agonized terribly about were to have the surgery. We finally deciced to have the surery in Rochester.
Jason has been diagnosed with a serious heart defect known as Hypoplastic Left Heart Syndrome.This condition has left Jason with the need for 3 open heart surguries of which the first will be taking place early Thursday August 3, 2000 at Strong Memorial Hospital in Rochester. Jason will be undergoing the Norwood Procedure. This procedure will not totally correct his heart problem but will provide releif and improvement and allow him to live a pretty normal life.
I will provide a couple of links to websites that give details on the exact procedures which are to be performed.
7-31
Jason is doing well. He has been mostly sleeping and enjoying the company of Mom, Dad, Mia, Papa and his brother Zach who was visiting today. Zach said "Hello" to all the "murses" as he calls them and he gave Jasona little kitty beany baby. Mom also tried to give Jason milk for the first time and that bottle is a bit more difficult than all those other babies make it out to be.
8-1
Jason had his first real test today...a hearing test...and he passed with flying colors. If you get to see him he is always listening to the alarms in the ICU and lets you know that they bother him anyway so this comes as no surprise. And he loves the music that they play for him in his crib and again will let you know if it needs to be changed.
He has been breast feeding when he feels like waking up long enough to bother with eating. He is more and more like Uncle Geof... doesn't feel like eating and a big lump on the head!! He looked like a relaxed vactioning baby today since he had on a pair of shades and was under the bilirubin lights sprawled out and trying to get a tan.
Everyone is looking a bit more rested and in good spirits. Grandma and Grandpa Piazza will be up tomorrow.
Jason will go in for surgery on Thursday morning at about 8:00 and will be out hopefully by around 12:00. There will be a nurse coming out and giving us updates throughout the morning and there is a computer in the waiting room so hopefully I will be able to give updates as they come.
8-2
Jason is still under the lights but is pretty content. He is looking and feeling good and is now just waiting until tomorrow morning for surgery.
Grandma and Grandpa Piazza made it up with Pete and Jill about 3:00 and got to spend some time with Jason. Rob and Felice and both sides of their families are going to be arriving early in the morning to see Jason off to surgery and wait anxiously and patiently for his arrival into the Pediatric Intensive Care Unit (PICU).
I will let everyone know what Jason's status is as soon as we hear in the morning.
We appreciate the thoughts, prayers and cards that everyone has given. Thank you again. There is also another child with the same condition in the NICU with Jason and will be having surgery right after Jason's...please wish the best for him as well.
8-3
All is going well. We all saw Jason before he went down to surgery this morning. Rob and Felice went down with Jason at 7:30 and at 8:30 Jason went in for surgery. The Nurse practitioner came up about 10:30 and said that all is going as planned and will come up again to update us.
So far so good!!!!!
2:30
The surgery is done and they are just finishing closing up. His vitals are good and everything went as planned. His heart is beating on its own and he should be up in his room by 3:00.
The next 48 hours are critical and I will keep you all posted.
7:00
Just left Jason and he looks great. The nurses in the PICU are taking great care of him. He has great color and I even got to hold his hand for a bit. Rob and Felice are staying at the Ronald McDonald House near the hospital to be near Jason tonight.
8-4
Jason is doing great. I was able to hold his hand and he was squeezing back. I gave him a kiss for everyone. He is alert and awake. He is listening to music all day and has a nurse keeping a close eye on him all day. The surgeon stopped by and said that everything looked great and there have been no complications.
Rob and Felice are looking more rested as well as all the grandparents who have been great support throughout. Zach is showing his relentless energy, talking nonstop and making sure that everyone is doing exactly what HE THINKS that they should be doing. Such a Commander Demander!!!!!
8-5
Jason is past his 48 critical hours. He is doing quite a bit of breathing by himself, but is still on a ventilator. Mom and Dad a looking a bit weary and are going to sleep at home tonight. Zach was up to visit Jason and is staying with Grandma and Grandpa Piazza at Rob and Felice's tonight.
8-6
Jason is doing well. They took out the drain tubes and he will hopefully be off the ventilator soon and breathing on his own. Mom and Dad are feeling a bit more rested after sleeping at home last night.
I went and saw Jason a little bit ago and they say that he is looking "textbook". He will probably be off the ventilator hopefully (fingers crossed) by Noon tomorrow.
SO FAR SO GOOD!!!!!!!
8-7
Jason is off the ventilator and breathing on his own. Last word was that Mom is holding him, he is being eased off the sedatives and is alert and looking around. This is AWESOME!!!!!
Jason is is a bit fussy apparently. If he doesn't like what is happening to him, he just holds his breath and turns purple...that'll teach 'em he figures. It really puts a scare into everyone, let me tell you. He is doing really well and has been held ALL day long. Rob and Felice are going home and getting what is sure to be thier last good night's sleep for a while.
8-8
Jason has taken a swing for the worse overnight. He has collapsed lung and is back on the ventilator and they are keeping an eye out for pneumonia. He is beng sedated again and everyone is keeping a close eye on him in the PICU.
4:00
Jason is stable and his vital signs are back to normal again. His lung is mostly inflated and they are going to be working on getting back to normal throughout the night. He will likely be on the ventilator for a couple of days.
8-9
Jason is still doing well. He does have a Staph infection and is being treated for that. His lungs are fully inflated and he is sedated and relaxed. Things are looking positive again.
8-10
Jason is doing well. The infection is subsiding and they are going to try and take him off of the ventilator later today. I will let everyone know when I hear that he is off the ventilator. Zach was visiting yesterday and really likes the childrens playground at the hospital.
8:00
I went and saw the little guy tonight and he looks great, he even has his own clothes on and not the hospital garb. He is being weaned off the sedative again and they are going to try and take him off the ventilator in the morning,. He has been breathing over the ventilator all day and looks strong. We are all hoping that it goes well in the morning. The little boy, Nicholas, next door got off the ventilator today and looks very well. The people in the PICU are just GREAT!!
8-11
Jason is off the ventilator and is doing well. Everyone is keeping a close eye on him.
8-1399933he doctors want him to be good and strong so he now resting and strengthening up. He doing well and now is just going to be getting stronger over the next few days.
8-14
Jason is doing well, but fussy when ever he gets touched. He got his first bath while he slept and pretty much just slept the rest of the day. Lots of rest and lots of food are the doctors orders.
Dad went to work today...I'll bet that was productive!
8-15
Jason is doing exactly what the doctors want him to do, rest and get stronger. They have upped his breast milk intake and he is beginning to get a little plumper. Felice is holding him as much as possible.
8-16
Jason had a good night. He was a little fussy but he made it through fine. Today the doctors are going to work on getting rid of the central IV and putting in a peripheral on either a hand or foot. They are doing this to prevent an infection. They are also weaning his medications and going to oral meds were possible. Felice is spending as much time as possible holding him and reading "A Fly Went By."
8-17
Jason is doing just fine, however is continuing to be a tough patient for the nurses and doctors to keep up with. They were successful in getting a peripheral IV in to Jason yesterday, but it clotted up last night. I think that he was mad about the IV! They tried to reinstall the IV but were unsuccessful. This morning they are calling in person that was able to get the IV in yesterday to try. He still needs an IV to get some of his medications. The surgeon is very happy with his progress, however, he is planning on leaving him on the respirator until Tuesday or Wednesday of next week. They want him to continue to grow, strengthen and stabilize before they take him off the resperator. On a lighter note, he did spit up this morning and was awake with his eyes open for an hour this morning while I was there. Starting to act more and more like a real baby.
Rob
The doctors and nurses have been trying all day to get another IV in Jason but were not sucessfull. They are concerned because he has low calcium and needs to be getting it through an IV because he is not digesting it through his stomach. They also need the IV in the case of an emergency and they need to administer other medications. they have tried all the major spots and even the surgeon came in to try and find a vein for the IV but nobody seems to be able to find a suitable one, and which will not jeopardize veins needed for his next surgery.
Rob and Filice are staying the night with him.
8-18
Jason had a good night and is going to be resting all day. His Stats are still good although he does still have low calcium but it has not fluctuated. They did not get another IV into him and that still is a problem.
More later...
Jason went down to radiology and got help from one of the technicians there who through the use of technology was able to get an IV into Jason's jugular. This IV will last about 10 days and allow them time to get his calcium problem under control. So all is calm again and everyone is much relieved.
8-19
Jason had a good day. He managed to pull out his ventilator tube so they put that back but other than that he has just been sleeping and hanging out. He and his buddy Nicholas are trying to outdo each other...or is it the parents!!! Both families are supporting each other. The door has been open between the two rooms and it is like a little intensive care party, Dads watching golf and the kids are all sleeping...even newborns find golf boring.. Hopefully things are evening out.
8-21
Sunday and Sunday night were good days for Jason. The doctors think that they have a handle on some of his metabolic problems. It appears that in correcting his potassium and calcium problems they created a chlorine build up in his blood. This caused them to completely reformulate his medicines. Once this was done, he settled out to a normal state. This morning the doctors are working on a plan for the rest of the week. They are trying to decide whethter to take him off the ventihilator or not. They are concerned that Jason may not have been getting enough rest and growing time due to his many adventures. More later........Rob
8-22
Jason had a difficult time last night. He had a problem with his blood pressure and his temperature. The doctors think that he has a new infection. He was uncomfortable and fussy this morning. This does not appear to be an emergency situation, but it is very concerning. On the good side, his electrolytes were stable for the second straightday. This roller coaster is tough to ride.
8-23
The doctors have confirmed that Jason does have an infection. At this point they are treating the infection, however, it will probably take a week to 10 day for him to get back up to the strength required to come off the ventihilator. In addition, yesterday he lost his arterial lin, which they use to monitor his blood pressure and check his electrolytes. Mercifully, the doctor was able to find a new one in his wrist on the first poke. At lunch we taked to a freind of Felices, whose daughter had similar complications after newborn surgery and went through many of the same things that we are going through. It was very comforting to hear that we are not the only ones to ever go through all this.
8-24
Jason had a comfortable and uneventful night last night. They are working on reducing his diarrhea and very slowly weaning his calcium drip. Rest and relaxation is the order of the day
8-25
Jason had another comfortable night. He is still having trouble with his potassium, but his calcium seems to have stabilized. They have begun reducing his calcium drip to see if his body is capable of maintaining it on his own. The doctors are going to see if they can reduce his diarrhea by concentrating his breast milk and fortifying with some fat. Otherwise, we are hoping for a couple of stable quiet days and then maybe we can get him off the respirator.
8-26
Yesterday was a very big day for Jason. At about 4:45pm Jason decided that he had enough of the tube in his mouth and proceeded to pull it out. The doctor and nurse were about to put the tube back in when they realized he does not really need it. So last night and today he is tubeless and loving it. His Calcium and Potassium also seem to be stabilzing. Felice went up early today to spend the day with Jason. I spent the day weeding Felice's Garden with the help of Zach, Poppa(Bob), Myia(Heidi), Ken(Ken), and Betsy. The onoins seem to be total loss but the tomatoes and potatoes are salvagable. I was not going to go to the hospital today but I cannot resist, so I will go up and suprise Felice.
8-28
Jason is doing well. He is now getting all his medicines through his feeding tube and not through IV's. His Calcium was dropping all day on Sunday but finally stabilized at a normal level. This is the first time he has regulated his calcium himself. We will now start working on feeding him with a bottle of breast milk and then maybe breast itself. It is very exciting, we can now pick him up out of bed without the help of his nurse. He is very awake and alert. He has been fussy but no more than other 1 month olds. He also likes being in the vibrating bouncy seat. If we get 3 or 4 good days in a row, they might start to talk about the "H" word.
8-29
Jason had good night and is having a good day. His mother is spending as much time as possible holding him. She got a chance to breast feed him this morning, but he was not very interested because he is still being fed through the tube. Just another day on the long road to recovery.
8-30
Jason and his mother are in the process of becoming much closer. They began trying to breast feed yesterday but did not have much success until 9:30 last night. Apparently he caught on to the idea and sucked like a champ. Anyone who knows Felice can imagine how excited she was. During the night last night Jason's Calcium was high. This means that he may not need the supplements. Therefore, today they have turned off the supplements and want Felice to breast feed him all day. When I saw him this morning, he was awake watching and listening to the TV. Which is nice since he has been so fussy for the last 2 days. Uncle Geof is planning on putting up some new pictures tonight, so look forward to seeing the new and improved Jason tomorrow.
8-31
Jason slept well last night. He was resting up so that he can attack the boob again today. He is trying to get his muscles in shape so that he can suck all his food down himself. If we do not have any major setbacks, the doctors are talking about sending us home late next week.
9-1
Jason is continuing to be a challenging patient. This morning he tried twice before succeeding to pull out his feeding tube. He then received all his medicines orally without incident. This is big step because it is a required before we can go home. When Felice arrived this morning Jason's mouth was moving a mile a minute waiting for a breast feeding. The lactation consultant came up and helped Felice help Jason with his feeding. I think that Felice will start staying through the night at the hospital to feed Jason either tonight or tomorrow.
9-5
Sorry for not updating the Web Site over the weekend, but my computer at home is too old and Uncle Geof was away this weekend. Jason has moved out of intensive care and into a regular pediatric room. It is a private room and Felice has been staying overnight at the hospital since last Friday. The breastfeeding is not going very well. Jason is not strong enough to suck form either the breast or the bottle. On Saturday he had lost almost a pound and was getting dehydrated, so they decided to put the NG(feeding tube) back in so that they could maintain his nutrition and increase his strength. Although he looks great, he still has very little stamina. The doctors and the lactation consultant think that it may take up to a month for him to gain enough strength to eat on his own. I think that we are still looking at coming home sometime this week.
9-6
Yesterday afternoon was an uneventful. Which was nice for a change! Jason is getting 3 oz of breast milk every 3 hours through his NG tube and for him to supplement this with breast feedings. The plan is for this to continue for weeks or months. His medicines have been simplified and his Mom and I learning to give them ourselves. If we get a good set of lab test tomorrow we may go home Thursday or Friday.
9-7
Jason had his blood test this morning and his electrolytes were perfect. However, he has begun to throw up after some of his feedings. The feeding issue is something that they will work on today and tomorrow, but the expectation is that we will go home tomorrow. Felice is very anxious and nervous about taking him home as am I, but we must push through these feelings and move on to the new reality. HOME. More later. Rob
9-8
Hurray Jason is HOME!!!!
The whole family is settling in at home and trying to get comfortable in the foreign place that is their homestead. It is great to hear that they are all doing well. Zach is going to stop by and see his brother and then sleep at Papa and Mia's house so that Rob Felice and Jason can ease into being at home.
9-11
Jason is doing well. The little family is trying to get used to the routine of giving feedings and medicines. The Jason is also not cooperating when it comes to sleep. He seems to be a bit of a fusspot. His mother did not get much sleep either of the last two nights, in spite of both Deanna's and my help. Jason has his first appointment with the pediatrician this morning and has a scheduled appointment with the surgeon's Nurse Practioner tomorrow. Hopefully, all this feeding is helping him gain weight. Zachary is adjusting very well to having everyone home for him to order around. How cool it must be to be 2!!!! Rob
9-12
Jason's doctor's appointment went well. He has gained almost 1 pound since he left the hospital last Friday. He now weighs 9 lbs 10 oz. We have been having trouble finding something that Jason would sleep in. He did not like the bouncy seat, crib or bassinette, but he seems to like the car seat. It seems that he likes the confinement that the head and body support in the seat gives him. This allowed him to sleep relatively well overnight and I think that Felice actually got some sleep also. Jason has an appointment with the Surgeon's nurse practioner today. Rob
9-14
Jason is doing well. He is eating somewhat better from the breast. He is not sleeping much better, which is taxing us all. We are getting used to the routine. I will be updating the Website every couple of days now as things become less exciting. Rob
9-15
Jason is wearing his mother down. She is still having trouble with his breast feeding . He is sleeping a little better. I will be updating the web site next on Tuesday. This weekend we are putting a new roof on the house.
9-19
Jason slept from midnight to 6:30 am last night. He slept in the bassinette next to our bed. He did fuss a little bit here and there but not enough to get us out of bed. He even slept through his 3 am feeding. Otherwise, he had a good weekend. The roofing project did not seem to bother him at all. Zachary and his dad had a real good day yesterday doing the male bonding thing while fixing tractors, lawn mowers and cars. I also went and bought Zach a pair of farmer boots so that he can help me on the dewy and rainy fall days.
9-21
Jason is doing well. He is continuing to grow and do more normal baby stuff. His cry is also getting louder. He may have skipped directly to teenager, because he has already learned the easiest way to fustrate his mother. That is to say that he is not getting the hang of breastfeeding. Felice is using a tried and true method for solving the problem: she got some books. All kidding aside, Felice is working very hard to teach Jason to breastfeed. The fact of the matter is that because of the tube feedings, he is not very hungry.
Zach is starting to get a little more jealous. He always wants to sit next to momma on the couch while she feeds Jason. Thanks for everyone's support. The Smiths
9-26
Jason's Florida Grandma has returned to her husband and now Felice, Zachary and I are working on getting into a routine just for us. Grandma's value was proven the first night when both Zach and Jason were up most of the night. Jason continues to be very fussy and grumpy but we are doing our best not to let it grate on us. Jason weighed over 10 pounds yesterday, so he continues grow. Zachary and I have been working on finishing up the bushhogging. Tonight, Felice i sgoing to leave me with the boys and she is going to do the grocery shopping. We shall see how it go
If anyone wishes to give money...please give to the Ronald McDonald House, American Heart Association or to Strong Childrens Center to help other children like Jason.
Uncle Geof
See above for new October news.
WE WOULD LIKE TO THANK EVERYONE FOR ALL THEIR THOUGHTS AND PRAYERS AND ALSO FOR ALL THE GOOD DEEDS DONE IN JASON'S HONOR. SPECIAL THANKS TO THE LADIES AND 2 GENTS AT INTEGRATED THERAPY SERVICES FOR ALLTHEIR CARE PACKAGES WHICH CONTINUE TO POP UP AT OUR HOME.