Wednesday, April 18, 2012
Today we went down to Primary's for our Post operation appointment and a Swallow study. The appointment went well Shane was very well behaved and had a good ekg and sats blood pressure all that fun stuff. We will meet again in 3 months with Dr. Everett for a Echo and check more of his heart function. They are obviously not concerned about his heart if they are doing a appointment in 3 months. So his heart is looking real good! Thats the good part! His swallow study was not so good. They tested him eating 3 different things like the earlier one , Formula with jelly stuff, half gel / Half formula and just pure formula. Well he did not aspirate on the first 2 which was a big improvement from last time but aspirated on normal formula. They want to ease his swallow into progression so we are still stuck with Shane having a feeding tube and giving him only 10 ml of thick formula. They also tried giving him baby cereal and that worked so once we decide to introduce him into cereal we can have at it. They will do another swallow study in 4 weeks. We untill that time will be working with in home speech thearapists and physical thereapists to have Shane progress in feeds as well as correcting his neck. We are greatful that his heart is doing well. We were hoping for his feeding tube out but you can't get everything you want and we are glad he has improved from last time. That is the update for now.
Saturday, April 14, 2012
Things were rough at first adjusting to the feeding tube procedure and learning how to do it before he gets so mad because he wants to suck on a bottle. The feeding tube goes into his nose and down to his stomach that way. I sometimes wish I had three hands but I'm getting the hang of it. I have also been pretty much a single mom since Nathan has been studying hard for a test to get his trading license which he passed today go Nathan! Shane wants to eat through bottle bad and it's sad he can only eat 10 ml of thick formula. The good part of the feeding tube however is I can give Shane his meds and when your giving 11 doses of medicine a day it is nice! We have a regular post surgery check up Wednesday and another swallow study to see if we can get this tube out! I think I will cry if we go home with it that day. I don't feel like it's over and we can go on with our lives till it's out. We pray every night that Shane's swallow will come back. I have attached some pictures of his wound and a cute smiling picture that was taking tonight. He also came in at 15 lbs 5 ounces at his rsv shot appt last Thursday so he is a big boy! Thank you all again for your calls, visits, prayers we know we are truly loved and thought of.
Saturday, April 7, 2012
For some reason this surgery even though it was a more complex and dangerous surgery was easier for me probably because I knew it was coming and I wasn't in a frantic shock life changing moment as it was the first time. This surgery was definitely longer than the first one but we were both confident it would go well. Sure enough it went very well and when the surgeon talked with us after the surgery he told us that the tissue around his left ventricle was a healthy color and was healing itself. At that moment I knew angels had been blessing his heart and once again this was our 2nd miracle. This surgery brought a lot of difficulties that he didn't have the first time. His cry was very weak from being on the ventilator and to this day his cry has gotten better but is still very soft. He had a harder time getting off his oxygen and had several episodes of heart arrhythmia. For this reason he stayed in the ICU much longer. He also aspirated while he ate so he was placed on a feeding tube and still has one. Then Shane had his physical things also he has torticollis and has a flat head that we are doing continuing physical therapy. So his heart is now fixed but this surgery has a longer recovery time with all of these things. I feel like its not over even though his heart is fixed there are so many other things we have had to adapt too. I'm grateful that he is a fighter and is continuing to get stronger and stronger.
These are my daily update emails that i sent my family after Shane's open heart surgery:
March 21st 2012
Well we went to primary's today to get an echo/MRI done for Shane. He had to be sedated and i was worried because he wasnt able to eat after midnight and wasn't able to have anything 3 hrs prior to app at 9. He did pretty well. He was cranky coming out of it but is good. The MRI looked at his heart and the same narrowing in his aorta they fixed the first surgery is slightly narrow again. They will fix it again in his surgery. Surgery is still in the books for Wednesday the 28 th. Not sure yet on time. Please continue to pray for Shane.
Ps family members we would like to have Shane get a blessing before surgery whether it's a night before surgery or a couple days it doesn't matter let us know what works best.
March 28th 2012
They just did an echo to check the heart after the surgeon fixed the repairs and they said it looks good they are going to close his chest up now and we should hear from the surgeon within the hour.
Surgery is over yay! Everything went well just got done talking to surgeon. The lower hole in his heart is closed now the PA band is off and the narrowing of the aorta is fixed again. The surgeon was very impressed with his growth and also he said at the beginning the left ventricle non compaction tissue was white and he says now it's a darker color and is saying it's healing itself. The surgeon had nothing but good things to say! Everything was a successful! We still have 12-24 hr critical time. Thanks for all your prayers we will keep you updated.
March 29th 2012
Well Shane s heart rate is high today they say it's because his heart is finding a different area of heart to pump untill the area they closed is healed more. They also have him on a little bit of pace maker to keep things in rhythm. So they will not take him off the vent till lower heart rate. So pray for lower heart rate! His blood pressure is needing to be a little higher too.
March 30th 2012
Well Shane has made quite a turn around he is off the pace maker that was keeping his heart beat in rhythm and is now maintaining good heart Rhythm and good blood pressure. They took out one of his chest tubes and is being taking off ventilator As we speak.! So what a day did! They also took him off the medicine that was keeping him pretty sedated but are giving him morphine and tylenol for pain! Our little man is so strong and hopefully will be tons happier now! We are so happy!
March 31st 2012
Well last night Shane's heart went out of rhythm again his heart rate is high and blood pressure is high. So the plan of getting out of the icu today like they said yesterday isn't going to happen. He will be monitored for another day and if it continues they will give him medicine. ugh we want to get out of here!
Well on top of everything Shane is going to need physical therapy to help his neck movement and possible a helmet to better shape his head ugh I know those are minor but let's add it to Shane's list!
April 1st 2012
Well we have had a busy morning! They took his other chest tube out they took his main art line out and they gave him a sedated echo. His echo came back ok. His heart function has decreased a little since before surgery a 58 to a 55. they say it just takes time. He still is on oxygen to help his heart get stronger and on a feeding tube. They will do a swallow test tomorrow to see if it's safe to feed him and hopefully he can get off his oxygen before he goes home. He hasn't had any heart arrhythmia since yesterday morning it comes and goes but they will just keep an eye on it! I hope we dont go upstairs then have to come back to icu! The only medicines he is on is lasics to keep fluid pressure off heart and enalipril to help blood pressure/ flow and heart function. He was on all those before surgery. well that's the update for now were moving on up and hopefully will be out of here soon! Nathan is at work today so it was fun to do all those things by myself! Lol
April 2nd 2012
Well after waiting most of the day they finally did Shane's swallow study they said his swallow down to his stomach looked good but his sucking swallow coordination needed some work. So they moved his feeding tube to his stomach that was originally in his intestine and they will evaluate him eating sometime tomorrow. So another day not going home. He still is on oxygen also. That is pretty much it for today.
>April 3rd 2012
Well They are trying to wean Shane off oxygen today and does well when he is awake but needs a little help when asleep .03 liters to be exact. Lol hardly anything. They will evaluate him feeding at 2 so we will see how that goes! Go Shane!
well Shane did really well with his eating study and is pretty much off his oxygen. they are all still concerned about his noisy airway so they will only allow him to eat every 6 hrs or so and will evaluate him over days they said. He doesn't need a helmet at this point and said they will take a look in a month or so.
April 4th 2012
Shane had an excellent night he is completely off his oxygen. He got his feeding tube out and is now getting oral feeds every 3 hours or on demand. Shane is still not urinating as much as they would like although his x rays show not much fluid. So if he urinates more today than they will let us go home tomorrow! Yay! It has been rough spending 12 plus hours at the hospital just waiting for him to get better but I know that I want all the i s dotted and the t s crossed before he goes home. He is our little fighter! way to go Shane! Thank you all for your continued prayers.
Well Shane has an intestinal infection called clostridium difficile luckily we caught it early and they will start anti biotics to get rid of it. They say it's common thing to get spending time in hospital he was having diarrhea all day poor guy. Im not sure if we will be going home tomorrow now.
April 5th 2012
Looks like we will be in the hospital another night. They want to monitor his stools and make sure he is not getting dehydrated. My poor little buddy! we are going to have to take a trip home to do laundry! lol well hopefully we all will be home tomorrow!
April 6th 2012
Well it has been rough emotional 12 - 24 hrs. Or 11 days! Lol We have been told too many different things about his eating from speech therapists even though he has passed his swallow study Tuesday they are still concerned.so they Wanted to do another one and he had feeding tube put in last night because of one persons opinion. After many tears and prayers we are leaving the hospital finally today yay! Unfortunately Shane has not gotten his swallow back and aspirates when he eats too much fluid but he dosent aspirate when he has this gel added to his formula but it takes a ton of effort to eat. So Shane can eat 10 ml through bottle of thick stuff and the rest through feeding tube! I'm glad he is home but it disheartens me that he can't get the satisfaction through sucking. He is healthy and his diarrhea has lessened and I have to be grateful for that. I'm glad we are home now and on to figuring out new processes of things.