Monday, February 28, 2011
We were told Kayden would get a g-tube this week, until the surgeon started looking at the chart and saw that his growth curve has went backwards since his tube had went from the intestines to the stomach because he cannot keep anything down. The surgeon suggested the tube be put back into his intestines and work on his respiratory issues right now because he can go home with the tube that's in his nose until he grows and he is nutritionally stable for his body to be able to heel an incision which he does not think he is right now. Today has been a rough day for Kayden his co2 jumped up and he has been very fussy for now they have not made any chances other than the feeding tube. We hope after a few days of feedings going into the intestines again then we can start working on oxygen. Please continue to pray!
Sunday, February 27, 2011
Should be a big week for Kayden, he is having the surgery for the g-tube sometime this week just not sure of exactly when right now. The surgeons decided not to do the nissen right now they want the doctors to try to up his prevacid and see if that helps with the reflux if it does not then could be as early as a week from the g-tube surgery they will go back in and do the nissen. We hope the larger dose of prevacid will help him and we will not have to have the nissen because its a permanent surgery and will never allow him to throw up and may cause him to just gag a lot but nothing comes out. As far as the ventilator goes during surgery they are going to try to pull the tube directly after surgery but the doctors do not know if it will be able to happen or not. If they cannot pull the tube we will most likely have to spend a few days in ICU until he is able to get off. We need lots of prayers this week for a successful surgery and that he does not have to stay on the vent. Will update when I know more information!
Thursday, February 24, 2011
Kayden is feeling much better, his feeds were started back at 4pm yesterday and the threw up just a little bit twice last night and twice this morning but nothing like he was. They think he just has really bad reflux, because of his reflux we have decided to consult the surgeons about a g-tube. With the g-tube I forget what its called but they kind of tie his stomach and keeps him from being able to reflux which takes his chance of aspiration away that we are very worried about considering he already has lung problems that's the last thing we need. He did not have any interest at all in a bottle today and with a g-tube it is temporary and still gives him the chance to take a bottle to build up his strength to be able to take more with more therapy. All the attending pulmonologist are getting together tomorrow to decide how he will be if he gets on the vent again for the surgery or if they need to try to push for a spinal in case he has problems getting off the vent from the surgery. They have not tried to wean his oxygen anymore because they wanted to get his feedings under control, but she has no doubt that he will be able to go down to 2 liters because he had the best blood gas he has ever had after being on 3 liters for quite a few days. If that is the case feedings will be the only thing holding us up from going home that's why we think the g-tube will be our best option without having to force him to much and wear him out where he has to work harder to breath. Continue the prayers will update again when I know more!
Tuesday, February 22, 2011
Kayden went to bolus feeds on Sunday and was able to try a bottle yesterday. It took him a few minutes for him to get the hang of a bottle again since it has been about a month since he has had one. About the time he got the hang of taking a bottle again, it went down the wrong pipe. We were supposed to try again today but he started throwing up and having very loose stools all night and all morning. The doctors think he might have been having withdrawals because they weaned his sedation from .3cc to .23cc supposedly babies takes weaning very rough and it sometimes takes a longer time to wean them. He is on pedialyte for the day and they are going to start him on similac sensitive tomorrow to see if the lactose formula may help him keep it down. If all goes well tonight he will resume his bottle feeding tomorrow with added thickener so maybe it will go down the right pipe. Prayers for a good night please.
Saturday, February 19, 2011
Kayden is 10lbs 2oz as of tonights weight!! This is very good considering he has never really gained weight when he is not on the vent because he has to work to hard to breath. Yesterday afternoon his tube was moved to his stomach from his intestines, so far he has handeled it well. Tomorrow they are going to try bolus feeds and see how he tolerates it, if everything is fine then he will get a bottle on Monday!!! If they think he will be able to take all his bottles within a few weeks to a month from going home then he will go home with an ng tube and will not have to have a g-tube!! They are hoping to get us out of here in the next two weeks all depends on how his bottle feeds go. We are not getting our hopes up because we have been in this position more than once and still have yet to get home. Keep us in your prayers this is going to be a big week for Kayden!!
Thursday, February 17, 2011
After the surgeons reviewed the floroscopy they determined that the diaphragm does not move the only surgery that there is for the diaphragm is if it is floppy and that is to hold it down.It could be that there is nerve damage from the surgery he already had that is what causes the diaphragm to be paralyzed. They think it is just going to be a growth issue, he just needs to grow and we just pray he is able to outgrow it but only time will tell. They think the lung may be underdeveloped because it was like that in the womb, but again only time and growth can help that. When he gets older we pray it does not hinder him because people live with one lung all the time and he has basically one and a half. The next step is to move his feeding tube from the intestine to the stomach, keep him on continuous feeds and see if he tolerates feedings in the stomach. As well as trying to move him down to two liters of oxygen, the doctor said she feels more comfortable sending him home on two liters rather than three liters. If he does tolerate the feeds in the stomach they will try to move him back to bolus feeds if he is tolerating that we will try and see how he will take a bottle. If it is to much work for him and will take to many calories to take a bottle that he could use for growing then we will do a g-tube so he can use all the calories he is getting for growing. The g-tube is only temporary most likely just until he is able to eat baby food because sucking takes lots of energy, way more than just eating food. We should know next week how he is doing taking a bottle and if we need to do the g-tube or not. Please keep us in your prayers. At least there is hope that we may get to go home soon!
Wednesday, February 16, 2011
Kayden had his floroscopy yesterday afternoon and it said exactly what the last two did. On his left side the diaphragm moves great but on his right side it is very high and barely moves if it moves at all. We are still waiting on the surgeons to review it and decide what they want to do. In the mean time his blood gas was good this morning and he was able to wean down from 4 liters of oxygen to 3 liters, which is great!! I think they have got his gas semi undercontrol now, his formula has been changed from Enfamil to GoodStart and they are giving him mylicon (spelling) as often as he can have it and it seems to be helping some. Keep us in your prayers that he is able to come home soon!
Tuesday, February 15, 2011
We are still playing the waiting game. The surgeons have asked that we get another floroscopy (spelling) so they can see it themselves instead of looking at the pictures of his other two. They are also trying to get ahold of Dr. Roden the surgeon who did Kayden's surgery so they can talk to him and ask him what the diaphragm was actually like when he saw it. Kayden has been having really bad gas that makes him miserable and he just crys and crys, if any of you know Kayden he really does not cry very often at all so I know its hurting him bad. We are hoping that this new formula will help him get some relief. Continue to keep us in your prayers, and pray we get a plan soon!
Sunday, February 13, 2011
Kayden has been doing great! Today we went on our first outing out of the hospital room to look at the trains and walk around, Kayden loved it he was so bright eyed and just looking around he really didn't know what to think about it all. Then his pawpaw and granny came to see him and he loved every minute of it. As for now we are just waiting on the surgeons here to get ahold of the surgeon who did his first surgery to decide if they can fix his diaphragm problem or not. He is breathing great on his own his co2 levels have been in the low to mid 50s which is very good for him. They are not going to wean his oxygen to fast the drs said most likely every 2 or 3 days they will try to wean his flow as long as he continues doing well. Continue to keep us in your prayers.
Saturday, February 12, 2011
Yesterday we got moved to the pulmonary floor and out of ICU. Its a lot different here its more like we would be when we are home just someone comes to check up on him ever 3 or 4 hours. So far its been good we can do what we want for the most part and every now again we can take Kayden for a stroll around the hospital, I can't wait to do that! Last night was our first kind of real night together, and he slept very very well he only woke up one time and that was for his labs this morning then went right back to sleep, and he is still asleep and its 8:45!! They are going to consult a surgeon and maybe they will be able to do the surgery before they had originally said they could because of the RSV since he isn't going to get any better till it is fixed. So now we just sit and wait some more!! Keep us in your Prayers!
Thursday, February 10, 2011
Yesterday was a very busy day for Mr. Kayden. He had his broncoscopy of his airway and everything looked good except for a little bit of irritation from the breathing tube. When he came back up to his room he was off the vent and only on a cannula. They started him on the vaportherm oxygen thing at 12 liters at first and within a couple hours he was at 8 liters and remained there all night. He had a fairly good night had only one little dsat episode but he just need to be suctioned. This morning his blood gas was good so they moved him to 6 liters. The Doctors have not rounded yet but yesterday they said if he does good off the vent he will be able to go to the floor in the next couple days and get out of the ICU. I am interested to see what the Doctors say in rounds because they did not think he would be able to stay off the vent this long but I told them he could do it, and he has done it this long. Continue to keep us in your prayers!
Tuesday, February 8, 2011
Yesterday I started to get very angry because no one was on the same page and we still have yet to get a game plan. We talked to the doctor and told him that we had a problem with no knowing anything and not making any progress. He understood that we were upset and said he would work on getting a meeting together with all the Icu doctors, pulmonologist, and surgeon so that we could all get on the same page. Last night about 11:30 the phone rings and it's the doctor, Kayden had pulled out his breathing tube, and did not really even give him a chance to stay without it they put it right back in. We got up here and the night shift doctors listened very well about his history and our recommendations about Kayden since we have been through a lot we kind of know when he is ready for some things and when hes not. This morning Kaydens blood gas was good so finally they listen to me and change him to only pressure support which is basically like cpap but it's through the vent tube rather than that awful headgear thing they normally use for cpap. He is doing very well today on that and maintining his sats very well. They have to leave the tube in for the broncoscopy no sence in taking it out then having to put it back in. The ent specialist is supposed to come by and reevaluate him this afternoon in hopes to complete the broncoscopy tomorrow. So hopefully they will be able to take the tube out by the end of the week. Keep us in your prayers.
Sunday, February 6, 2011
Nothing has really changed in a few days they started him on a round of steroids and are slowly weaning down on his vent settings. Tomorrow morning they be scheduling with the ENT, and hope to do it very soon. Right now they are talking about taking him off the vent towards the end of the week. I am really hoping and praying they will take the tube out at the end of this week if not before, I want to hold sweet Kayden oh so bad! He has been sleeping a lot in the last few days he wakes up when I talk to him but other than that he mostly just sleeps. His weight has been about the same the last few days, he really needs to gain more weight or they won't be as willing to take him off the vent as they would if he was bigger. I am so glad to finally be RSV negative it nice to be able to touch him now without gloves on and he can see our faces without masks on. Pray for good news on the test this week!
Friday, February 4, 2011
Finally after almost 2 weeks we are officially RSV negative!! He was a happy camper today just layed in the bed and we played and he smiled. He has found the TV so he is now glued to it and constantly watches it! They started him on another round of steroids for 5 days in hopes it will reduce the inflamtion down in his lungs and airway to be able to get him off the vent in the next 5 days or so. I sure hope he is able to come off because I want to hold him ohhh soo bad! Keep praying for us and that they do not find anything when they do the broncoscopy at some point next week and they will be able to consult a surgeon and can find a fix for this baby!
Wednesday, February 2, 2011
Today we got our first RSV negative test result back now just gotta get one more negative back tomorrow and he will be RSV clean! He is growing which is a VERY good thing, tonight he weighed 9lbs 6oz! Today he was very awake and alert and just so happy now that he is not on much sedation at all. I hope Friday they will schedule the broncoscopy and get that done and hope to get him off the vent shortly after that! Please keep us in your prayers!