Thursday, March 31, 2011
Things for Kayden have really started looking up. We got moved to the floor on Tuesday and after a sleepless night Tuesday night and only a two hour nap on Wednesday Kayden finally slept thru the whole night last night. It has been up in the air, do we stay here at Children's and learn how to care for Kayden at home or do we go to Our Children's House at Baylor. The doctors finally decided that we will go to OCH, but for us to learn all we can possibly learn here that way we can just check off that stuff when we get there rather than relearning it. The hardest part is going to be learning about the ventilator, there are so many different settings for different things that's the main reason they want us to go to OCH because they have an excellent ventilator program more than they can teach here at Children's. We hope to be ready to go there next week, as long as Kayden keeps progressing like he is now it shouldn't be to long. Kayden has also learned a new trick, how to talk and cry around his trach, now he just talks away and is happy as can be! Keep us in your prayers that he continues to get better each day!
Saturday, March 26, 2011
Yesterday Kayden had the surgery that we had been waiting months for. It was originally scheduled for noon but noon came around then so did one and two and finally about 3:30 they took him back. The surgeon's plan was to try laparoscopicly but they did not know how well he would handle it because they would put alot of air in his tummy for them to be able to see with the scope which would push up on his lungs, if he didn't they would have to do it the old fashion way which is an incision from under the rib cage to his belly button. Laparoscopicly has less pain and is 5 very small incisions but after an hour into the surgery they called and said he was not able to handle it laparoscopicly they had to open him up because his sats started dropping but as soon as they released the air out his sats came back up. After the surgery was over the surgeon came into the conference room and said about halfway through the surgery Kayden's body go so tight way tighter than any body should be and his sats began to drop again. He said they surgery itself went well but he was having a reaction to the anesthesia which they tough might be malignant hyperthermia(MH) which is not a good thing at all. The anesthesiologist was treating him for MH and that he did not know much about it that it was an anesthesia thing but he would let us know something very soon. Of course the first thing we all do is google MH and the first thing it says is causes death and if lived through can cause brain damage and organ damage. As soon as the surgeon got back into the OR they told him they needed an incision for an art line immediately for close monitoring. He got back to ICU and they said he already looked 800 times better but he still needs to be closely monitored. They have been doing blood work very frequently and checking his urine output and so far all levels have come back close to normal. He is just in really bad pain, he is on a drip plus is getting bolus every hour to keep it under control. We still need lots and lots of prayers he is better but still not where he needs to be.
Thursday, March 24, 2011
I love the notice they give you here at Children's about having surgery. I was just told at 3:00pm that Kayden was having surgery tomorrow at noon for his g-tube and nissen. For his trach surgery it was scheduled at 11:30 and the took him way earlier than that so who knows exactly what time it's going to happen but sometime tomorrow. I have yet to see the surgeon to find out all the details about the surgery. I was told they would be sometime this afternoon, but then again who knows what time that will be. I have been frustrated beyond belief the last few days about not getting any answers, well when I get some I find out its happening tomorrow....I believe these doctors need to get on the same page and our nurse today does not know which end is up. We need prayers for a successful surgery tomorrow!
Tuesday, March 22, 2011
Things with Kayden were a little rocky for a few days but now they have finally calmed down and he is starting to move forward. Since I last updated there has been many ups and downs but now there is lots of improvement. He was having a hard time getting his co2 under control the doctors did vent change after vent change and nothing seemed to be helping. Once all his secretions slowed down from the antibiotics working against the staff he seemed to start doing better. Just when he was doing really well and his co2 was really good they thought he would be fine to switch to the LTV which is the home vent, the first time he was switched he was doing great then all the sudden started working really hard and his co2 went up again so he got moved back to the regular vent for a little longer till his co2 came down again. Sunday afternoon he was switched back to the LTV again and has been on it ever since. It was a little rocky at first but they did a few vent changes and his co2 is back down again. He should be able to go back to the floor today or tomorrow thank you Lord! Just when we are on a downhill slide doctors ask me would I like to see if the surgeons would like to do the g-tube and a nissen so he will be able to take feeds in his stomach again. I would love for him to go ahead and get it so we don't have to go home with the tube in his nose and chance it coming out and then have to come back just so they could put it back into his intestine. If they are to go ahead and do the g-tube and nissen that would mean a longer stay here before we are able to go to Our Children's House of Baylor and longer before we could get home, as well as the way Kayden deals with anesthesia there would be a few set backs before going forward. The one good thing about it would be he would get the tube out of his nose and would be able to take feeds in his stomach again which would mean he could take a bottle sooner rather than putting it off longer and making it harder for him to have to relearn how to eat. As of right now I do not know what we are going to do about that. I will update again when I have some more news but until then just keep the prayers coming!
Wednesday, March 16, 2011
As if things couldn't get worse they have. Kayden now has a type of staff from the trach. His co2 is still extremely high and now the pulmonologist think there may be something going on inside his lungs possibly from the eventration in his small airways so they are going to do a ct scan to see if it shows anything different from the last. They are also incerting a picc line since he will be on 7 days on antibiotics and they have increased blood gasses to every 6 hrs so he does not have to get poked so much on his little heel. We need lots and lots of prayers, as the doctors say and have said he is a mystery. Let's pray they figure things out soon.
Tuesday, March 15, 2011
Kayden has been having a rough time. He has been withdrawing numerous times a day and they upped his sedation and he still has episodes. His co2 also has gotten extremely high. The doctors are working to try to figure out what's going on with him. We did this surgery to make him better, not worse but so far it just seems to have made things worse than before. Kayden marches to the beat of his own drum and he never seems to go on the normal path of recovery. Praying problems get solved soon, please pray too!
Saturday, March 12, 2011
Yesterday Kayden finally started waking up after they took him off one of the sedations which was a very good thing because when he was under so much sedation he wasn't breathing on his own he was letting the vent do all the work. Today he was taken off all iv pain meds and is only getting then orally now and is finally breathing over the vent. He has been a happy smiling little guy today. He should get his first trach change Monday or Tuesday then if his co2 will get under control we can go back to the 7th floor! Please continue to pray!
Wednesday, March 9, 2011
Kayden's surgery this morning was very uneventful which is good. He went straight from the operating room to the ICU. Not long after getting to the ICU, he started to wake up slowly, it was not long before he was completely awake and thrashing around. He had woke up before they expected and they did not even have his pain medicine any sort of ready. They finally got it and made him feel much better when he got it and just drifted away to sleep! They plan to keep him pretty sedated for about 5 days so the skin can start healing around the trach. After 5 days the surgeons will come and do the first trach change to make sure everything is healing correctly. As soon as he is stable abs everything looks good we will go back to the Pulmonology floor. This was a very hard decision to make but Kaydens breathing is all ready so much better, nice and calm. Still continue to keep us in your prayers please we still have. Long road of recovery and a lot to learn how to car for Kayden at home!
Tuesday, March 8, 2011
Tomorrow is the day we will face what we have been trying to get around for months. Kayden will get a trach at 11:30, they are also trying to get the general surgeon there to for a g-tube while he is already in the OR. We are getting pictures taken today thank you to Amy Horton Phototgraphy for coming to save the day since the other photographer cancelled. We need lots of prayers as we start this journey with Kayden.
Sunday, March 6, 2011
We have been trying to avoid making this decision, we have tried every way possible around it, but the time has come where for Kaydens long term health it cannot be put off anymore. The last few days Kayden has been working harder to breath and his CO2 has been jumping up again to the mid 60s. The doctors had been throwing the trach word out many different times, even when we were in the NICU in Plano. We have been totally against it, today we were informed about it and how it will only help Kayden developmentally. I was told when we were in the ICU here at Childrens that he cannot eat or talk while having a trach, Dr. Gelfand informed me that was totally incorrect there are therapies that will help him to learn the things where when Kayden is able to get off the trach guessing around 3 years old he will not have to learn to eat and talk at that time, he should just be able to be a normal child once removed, praying that everything has gone as expected. This is not what we have wanted to do by any means but it is what will be beneficial to Kayden for now and long term. After getting the trach he will be in ICU for 7-10 days, shortly after we will get transferred to Baylor Childrens House for about 6 weeks, where we will go to classes to learn to care for him and a trach, as well as therapy for Kayden to learn to eat and such. We need many many prayers while going through this, it is surely not the path we wanted to take but it is the best option for Kayden and his health, and thats what comes first. I will update again when I have more information.
Friday, March 4, 2011
After Kayden's CO2 started creaping up the other day they moved his feeding tube back ND (intestines) and started him on 5 days worth of steroids. Yesterday his blood gas was great his CO2 went from 73 to 51. This morning the doctor said he might move him down to 2 liters today or he will get one more gas to make sure everything is still good. He is still currently on 3 liters on 35% he will stay at 35% when he gets to 2 liters but once he is able to get to one liter he will be turned up to 100% oxygen on a setting like we would be at home. The doctor would like to see him on .75 liters at 100% oxygen to go home on. We will be holding off on the g-tube surgery for now and will be going home with the ND tube on continuous feeds. As long as Kayden keeps having good blood gases and continues to grow there will be an end in sight soon. Please pray that we are able to get home in the next few weeks, I am beyond tired of living in the hospital, I just want us to be home!!!