Change of Plans

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!

This Week

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!

G-Tube

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!

update!

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.

We have hit 10lbs!!

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!!

No Fix...

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!

3 Liters of Oxygen!

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!