New Developments

I called Colby yesterday to wish him a happy birthday. I got permission to post the updates from the carepage on here. If you want to access the carepage go go www.carepages.com, register, and do a search for alexTHEAlexletsgowild. That should take you there. If you have problems let me know. E-mail me at tonia_n_mike@yahoo.com. I will post the updates from the first one, and then just post as I can. Thank you all for your prayers I know they are helping. Please continue, he still has a long road ahead.

Alexander's Story

Alexander was born on December 22, 2008 as a seemingly healthy child. We had the opportunity of enjoying him at home for 10 days. On New Years eve, Alexander started looking very pale. He wouldn't eat and he seemed to be breathing very rapidly. He was sweating, but his temperature was at 94.5 degrees. We called a nurse, who thought we should talk to a doctor. The doctor told us to call the Ambulence, who, on arrival, called life flight out of Challis to Boise. Because of Weather, Life flight was not able to fly, so we were ambulenced to a small hospital in Salmon Idaho. As they are not specialized in infant care, they were not able to do much for Alexander, and for about 6 hours, he hung between life and death. At that point, life flight was able to land and they quickly had Alexander on a ventilator, pain meds, and a paralitic to paralize him. They flew him to Boise, where they immediately found some problems with his bowels. About an hour after being in Boise, they did major surgery on his bowels to untwist them in hopes that they had not already died from lack of oxygen. Miraculously, his bowels were all still viable and the surgery was a success. Soon however, he was showing signs of other problems and they found that he has serious heart defects. He has 2 different holes in his heart, and as a bigger problem, his Aorta is only half there, as well as a possibility that one of his heart valves is too small. We were again life flighted out to Primary Childrens. Upon arrival, they found he had a collapsed lung. He has also not been urinating, so he has been dangerously off on his levels. On Friday night his heart started to go crazy and they had to shock him to get it to slow down. The next day, his heart went into V-tack and he basically flat lined. They again shocked his heart to get it to beat normally. Again Sunday, Jan 4th, He started into V-tack, when they tried to take him off the paralitic and just have him under sedation. immediately they put him back under the paralitic and his heart started to beat normally again. They doctors are saying that at this point he is very very bad off and they are hoping to see some things start to change direction soon. If that happens, then when he is well enough, he will undergo open heart surgery to fix his heart.

Posted Jan 6, 2009 8:19am

Today Alexander had an ultrasound on his kidneys to check for blood flow and damage.There is some obstruction in the blood flow. The doctors were not sure what they were going to do about it when I visited with our nurse.
Alexander is at minimum levels of his pain medication and starting to wake up a little bit. He is still not really awake, but he wiggles some and is trying to breathe on his own.
Because he cannot urrinate he has a drain inserted into his side to help get the "bad stuff" out of his body. The extra fluid causes him to look swollen and decreases blood flow to his body. The drain has helped immensely and he is now recognizable, where before he looked puffy.
We are just playing a waiting game at this point, hoping that he will turn a corner and be ready for surgery.
Thank you for your love, support and prayers.

Posted Jan 8, 2009 6:32pm

Well, first of all, sorry about the long name we chose to put this site under. we had to keep changing it because the computor kept messing things up. (By the way, its from the movie Madagascar and the McDonalds toy of Alex the Lion). We also had the security settings up high so most people could not get on here, but I hope things are resolved now. Today is a "good" day. We are simply waiting for Alexanders kidneys to function properly. We have a a pretty extreme week of mostly downs, but miracles within those downs. We are extremely greatful that our baby is alive and know it is through prayer and priesthood power that he is alive. After some close calls where his heart had to be shocked to function properly again, we have had some pretty calm days.He is urinating so all the excess fluids have come off his body, and his lungs, bladder and bowels seem to be now doing okay. If we can only wake up those kidneys to pull the right stuff out of the blood, then he would hopefully be ready for heart surgery in a couple of weeks. Right now he would not survive the surgery. The doctors at this point cannot predict how long till surgery, what surgery will take place, or what his recovery will look like. It may be a step process on his heart, where he will be in for multiple surgeries, because of his delicate condition...as well as the complexity of his defects. So as of now, we are just waiting! Colby will take the other kids back to CHallis so they can go to school and he can go to work... I ( Marsha) will stay here at Primary Childrens and visit with my baby.

Posted Jan 11, 2009 2:08pm

COlby left with the kids yesterday, and it has been a happy sad thing. I really miss my family, but at the same time...I got to sleep in this morning which hasn't happened in a long time! I just hope COlby is surviving all 4 kids. I went to church at the hospital today,and found myself missing my children..even if they are more like noisy popcorn during church than reverent angels!
Alexander is doing about the same. He was moved to the NICU 2 days ago because the PICU was getting full. He is making some progress in that the BUN tests ( its a blood test for Urea and Nitrogen), those numbers are going down a teeny tiny bit...but they are going down! The Creatinine ( I have no idea how to spell that word) But that is the other blood test for kidney function and those numbers are still going up...but just a little. The lower organs just took a really hard blow when the heart was not getting blood flow to the lower organs. THe incision from his bowel surgery is healing very well, so that is an indicator of how well other things are healing. TOday he had to be upped on his sedation because he gets pretty fired up with the nurses constantly picking on him. Its good because right now his heart is in such a delicate condition that they don't want to put any stress on it. The PICU was hoping to take out the ventilator so that he can be held, but the NICU is not sure. The ventilator is good because it will help his lungs not to work so hard and thus it preserves energy and his heart does not have to work so hard.
We want to thank everyone for all the messages and help they have given and continue to give to our family. We have such great family support, as well as a whole town of support. Thank you, thank you!!!! We hope not to be in such limbo for too long but we know that the Lord is watching over us and we are learning to be patient ( which I definately need lessons on!! )

Posted Jan 12, 2009 2:32pm

Today Alexander seems to be doing pretty good. They are still keeping very close tabs on his agitation level. They sedate him so that he keeps calm, but he opens his eyes and tries to look around some. He cannot be held at all because, number one he has the ventilator, and he has femural artery line...a line that goes directly into a major artery that monitors very accuratly his blood pressure. They cannot risk either of these being messed with. The second thing is that he cannot tolerate being moved or touched too much because of his heart. At least he seems comfortable enough for now. The nurse said that the Creatinine level in his blood ( that has to come down drastically from what it currently is to show that his kidneys are functioning), was the same level today as yesterday. Until today it has been going up so hopefully we have seen its peak and it will start coming down.
We have been able to do some fun things while we have been here. Before the kids left we went to the zoo for a few hours, and we did go to a hockey game for about an hour. Everyone has been really good to us. Once again, thank you for everything! Considering the challenges we are facing, things really are good, and great people are taking care of us, both at the hospital, and home, as well as through messages and phone calls.

Posted Jan 14, 2009 12:17pm

Alexander is doing well. He is as stable as he can be. The nurses just keep a very close eye on him and his meds. Besides being given sedative/pain medication, he is being given an anti-anxiety drug to help him stay relaxed. At this point, the doctors can only wait and hope that he gets full function of his kidneys. It is a possibility that his kidneys have been damaged from birth, or that they have been too damaged to recover completely. If this is the case they cannot perform heart surgery...he would not make it through the surgery. He has to have surgery on his heart to survive, so the implications, if his kidneys do not recover are quite ominous. We are very hopeful that Alexanders kidneys will return to normal function and that they will be able to proceed with his heart surgery. That is why we are waiting and will be as long as possible, meaning that while his body is doing okay on the ventilator and the medications that he is on, they will keep waiting for his body to repair the kidneys. I think they are hoping that he will be able to do okay on everything for a couple more weeks which will give his kidneys as long as possible to get better. Friday we are scheduled to have a conference with all the different medical teams (cardiology, renal, etc.. where we will be able to ask questions and hopefully get everyone on the same page.) On a lighter note, all of the nurses think he is just a beautiful baby. They really seem to like taking care of him. He is such a sweet baby and easy to get attatched to.

Thank you so much everyone for your words of comfort. Everyone has been so good to take care of Colby and I and our kids. We have so many people from Family, the hospital, Challis, Cedar City and places we don't even know...pray for us, send us messages, call us, take care of the kids and feed us. Angels come in all shapes and sizes here on the earth!! We are just so greatful for everything.
Alexander is still hanging in there. His creatinine levels were down from 3.0 yesterday, to 2.9 today. Those levels have to get down to 0.6 before they will consider him well enough to operate on. Slow progress is normal for the kidneys so we are celebrating that his levels are still going down. Everything else looks pretty good. They do x-rays on his lungs quite regularly to make sure there is no fluids buiding up from the ventilator... and thus far his lungs look great. The nurses that have signed on the be his primary care nurses are great! We are told that the drugs that Alexander is on, make him feel uncomfortable and a little jittery....more like he has the flu. There is so much noise in his room...with 3 other babies and all that goes with them in there. In part, this is why he gets upset often and has to be given the sedatives and anti anxiety drugs to keep him calm. We know the Lord comforts and blesses him and we are greatful for the miracles we have already seen!

Posted 1 day ago

Oh, yes... They tested Alexander for DiGeorge syndrome which is a genetic disease where kids often have congenital heart defects. DiGeorge syndrome children may also have some other problems, including mental disorders. Alexanders tests came back negative meaning he does not have DiGeorge syndrome...yeah!