9 1/2 weeks on a feeding tube and we finally got it out! I have been slowly increasing kylers feeds and he has been on a bottle completely for the last 2 days and has been doing good so my pediatrician listened to his lungs and they sounded good so we took it out. he looks so cute
Kyler failed his swallow study again, but I went and talked to my pediatrician and decided to start feeding kyler an ounce of formula mixed with rice cereal every couple of hours. He usually did fine on his test for about an ounce and so we think it will help him to actually eat through his mouth since he hasn't had any food orally for 2 months now. He wants to see us back in two weeks and he said we will probably just take his tube out after that if he seems to tolerate the feeds well, which so far he has so we I was happy about that. He told me that most babies do aspirate a little into their lungs when they eat so since he wasn't failing it horribly he made the decision to start with the oral feedings, which is how i felt too.
I think they are finally releasing us today! His feeding tube had to be put back into his small intestine since he started refluxing more yesterday which could cause pneumonia if it were to get into his lungs and since his swallowing reflex is not working properly yet, that is a possiblity, so they decided that would be the best option. we will be back on the 28th for another swallow study and hopefully by then his body will have remembered what to do and i will be able to nurse him again. thanks again to everyone for all your help and prayers. we love you julianne
Kyler has been at Primary's now for 2 weeks, and is breathing on his own, with slight oxygen in a nose tube. Last step is getting him nursing again. His first week was very rough, they had to "hand bag" air into his lungs because the ventilators would get stuck up. Last Sunday was our fast and special prayer for him. From that day on he started improving.
Kyler is doing well weaning off his oxygen, and his lungs are sounding really well. He failed his "swallow test" yesterday though. They watch him through an xray machine and give him a few drops of milk to see if it goes in the right tube and a few drops went into his airway which means he is having a delayed response to eating. this is common in RSV babies who have had a tube down there throat for so long, your body forgets how to swallow. so he is going to have to be fed through a tube for another week to two weeks and then be tested again. We are also still waiting to hear back on his blood infection, if it has moved through his body then we may be here for another two weeks, so i am really hoping it never moved past his PICC line- but i will let you guys know when we find out julianne
well we have been here for 17 days now, i hope it won't be too much longer. Kyler is still doing good. they have sent by a physical therapist and a few other people to help kyler get some strength back. she told me he isn't as weak as what she expected considering what he has been through, but he is still to weak to eat so she showed me some exercises to get his muscles to wake up a little bit. THey also told me that he needs to be reintroduced to "nice" touches since he has been poked and prodded so much they get so they don't want to be touched, which made me feel better to know that-cuz at first when i held him he acted really uneasy, but he is doing a lot better now. they also found some bacteria growing in his PICC line so they removed that and gave him antibiotics and his fever has now cleared up,so i was happy about that. He is smiling and cooing again, so hopefully by the weekend we will be able to come home. love, julianne
Sat Feb 9th UPDATE Kyler has been making awesome progress today and last night so they extubated him (took out his tube in his throat) and it went really well, they took out his ART line and one of his IV"s so now all he has hooked to him is his PICC line and he has oxygen going into his nose. THey said i might even be able to feed and hold him later! His little face finally looks like himself again without all the puffiness and the big tape across his face holding in his tube. right now they are just watching his breathing to make sure he isn't struggling at all, but he is doing really good. Thank you all for your support and prayers, we have felt your love for our family. love, julianne
So kyler was released from the PICU yesterday afternoon and they put him up into the infant unit. we were way excited to get him moved, but the nurse that we got transferred to was kind of an idiot. I guess she just moved to this hospital and obviously doesn't realize what is expected of the nurses here. I have been so impressed by all the nurses here, she was somewhat of a let down. they need to wean kyler of the narcotics he has been on but they cut his medications in half which was too much and he started having withdrawls- irritability, diarrhea etc. and on top of that the nurse was 2 hours late in giving him his dosage,he was running a fever last night and was not urinating enough and they couldn't break up his secretions. they did some blood tests on him to see if he had an infection and didn't find anything. luckily the night nurse was a good nurse, she stuck by him all night and figured out he was dehdrated so they gave him some fluids through his IV, and upped his med's so he is not having withdrawls as bad. so he is doing better now and i talked to the doctor about the nurse yesterday not having a clue what was going on. He still will not nurse but that will take some time for him to remember what to do, but they are still feeding him through his tube. So hopefully we can get back on track now, he seems to be a lot more comfortable today. julianne
Kyler has been making awesome progress today and last night so they extubated him (took out his tube in his throat) and it went really well, they took out his ART line and one of his IV"s so now all he has hooked to him is his PICC line and he has oxygen going into his nose. THey said i might even be able to feed and hold him later! His little face finally looks like himself again without all the puffiness and the big tape across his face holding in his tube. right now they are just watching his breathing to make sure he isn't struggling at all, but he is doing really good. Thank you all for your support and prayers, we have felt your love for our family. love, julianne
Yesterday was a really good day for Kyler. I finally saw his little eyes after 10 days of a lifeless baby! so can i tell you how good that was! He is starting to wiggle a little bit too, it is so cute. He is starting to shed all the fluid he has been retaining too, so he doesn't look like a marshmellow with eyes as much. They found out he really likes his belly so they have been switching him back and forth and are able to move a lot of the mucus out when they do that. He has been getting full feeds, which is 24 cc of milk every hour since sunday. They also gave him about 3 ounces of blood yesterday cuz he was almost down to about half of what he should have, and that helped put some color back in his skin- it did make me a little quesy when i saw a bag of blood though. His blood pressure was really high last night and he was really mad at the world, but today he has calmed down. I think he had a lot of air in his belly from trying to put his feeding tube in so many times. Keep him in your prayers, and hopefully we can make it out of here in a week or so. we love you all julianne
Last night they finally got kyler switched to a conventional respirator. the transition went a lot better than last time and he has been tolerating it well so far. They actually turned him on his belly this morning to help him breath better and when they did he started taking a few breaths himself. they still have him paralized and sedated though so he really doesn't need to be breathing on his own yet. it was good to at least see that he is able to breath on his own though. I still haven't seen him move yet, I hope they will let him wake up a little cuz it is hard to go so long without seeing him move, but he is making slow progress. right now they are trying to get him to get rid of some of the water he has been retaining cuz he is really puffy right now, and just trying to keep his vitals good so they can start weaning the machine down. He is doing better though finally, but i still expect a few more weeks of recovery. thanks for all your help and prayers julianne
After the rough day we had yesterday, i am glad that today has been very calm. They got his vitals back to normal today and all of his blood gasses ( testing the amount of oxygen in the blood and the amount of carbon dioxide he is getting out) have been really good today so they are talking about trying to switch him again tomorrow and see how he handles it, but we will see. One down side is they had to stop feeding him because for some reason they say the tube is not in the right spot now, and so they stopped feeding him- it doesn't make much sense to me either- but other than that it has been a good day for him. thank you for all who fasted for us yesterday. love, julianne
Yesterday they finally got his feeding tube in so he is getting a teaspoon an hour of milk, so that is one plus. they tried to switch him over to the other ventilater today, but his carbon dioxide levels went too high, and his right lung collapsed when they switched him, so they switched him back to the oscillator. so now they are trying to get his levels back down. they said they will try again in a few days but he is not ready yet. julianne
Kyler is still in intensive care, but making progress, though slow. He is still not breathing on his own, because his lungs are still full of mucous and congestion. The congestion is very slowly starting to clear. Julianne shows you Kyler and explains some of the tubes. Good news today, they were able to get a tube into his intestine, to feed him some Mom's milk. The first time in a week!
Today they told us they were going to try and switch Kyler back to the other ventilater, but they wanted to wait one more day and see if his lungs would clear up a little more. This ventilater that he is on does 100% of his breathing for him, and the one they are trying to switch him to allows him to do some of the work, but i guess he isn't quite ready to go back on it yet. They also tried again to get his feeding tube in, but they still couldn't get it in the right spot so they are just going to continue to feed him nutrients through the IV. So today he is just resting again, not too many changes. Tomorrow they will try again and see if they can get him a little food. thanks again for all your prayers. julianne
Today (thursday) Kyler has been pretty stable for 2 days. they had to take out his feeding tube out for now which was kind of a bummer, but other than that they have been able to keep him pretty stable. They found a small spot in his lungs that could be pneumonia so they gave him an atibiotic, hopefully that will clear up soon. I counted ten machines last night that were pumping something into him (not counting his ventilater), so that was a little dis heartening, but right now i feel good about the direction he is going. He still needs lots of prayers, and we appreciate everyone's support
Well i thought i would give you all an update on Kyler. We are still up at Primary Children's in the PICU (pediatric intensive care unit), and for those of you who don't know Kyler was life flighted here sunday with RSV. I wouldn't say he is getting better yet, but as of right now he isn't getting worse and that is good. Yesterday he had kind of an active day, He was throwing a lot of fits and would hold his breath and they wouldn't be able to get any air to him, so they would have to manually pump air in, they did this probably 20 times throughout the day and he was breathing really fast to. really scary to watch his vitals dropping but we were getting used to him doing it, at first they thought he had mucus plugs blocking his airways but it might have just been him. anyways, I had to leave last night cuz they didn't have a sleep room for me. so at 4 in the morning they called and said they were changing him to a different ventilater, but not to worry. then at 8:00 they called and said they were putting an IV into the large vein that directly enters into the heart called a PICC line that is used on patients that will have an IV in for 6 days or more. So I was a little worked up by time i got to the hospital and it was really hard to see him this morning, and i was scared to death. the doctor explained more to me and it calmed me a little. His blood pressure went up last night and he wasn't doing well on the normal ventilater so they switched him to this one that essentially keeps his lungs open the whole time instead of going up and down and it pumps in 600 breaths per minute,and does 100% of his breathing for him. They tried quite a few times to get his feeding tube in and couldn't get it all the way to his large intestine where they wanted it so he still wasn't getting any nutrients. But he has done better the rest of today. Justin and his dad gave him a father's blessing today and his vitals have been good and they put the feeding tube in his stomache and are just feeding him small amounts so he can tolerate it without throwing up. So hopefully now he can regain some strength and in a few days they will put him back on the other ventilater that allows him to do a portion of the breathing on his own. So i am feeling a little better tonight than this morning, but we have a long way to go. If you do want to visit that is ok, just no kids and no sick people. I think we may be here for a while longer though. Thanks for your prayers and phone calls, we appreciate the support and we love you all.