Tuesday, August 16, 2011

Life at Home!

I havent updated since we have gotten home so I thought I should just give a quick update! After Kaydens long rough few six months in the hospital he is now doing absolutely great. The doctors are very impressed with how well he has gotten since we have got home. He is now being able to get off the vent for 3 to 4 hours a day and is improving each and everyday. He is growing very well weighing 16.15lbs and 25.5 inches long he has come along way considering he only weighed about 10lbs when he came home from the hospital at 6 months old! Now at 9 moths old he is a very wild boy he is sitting,rolling, sitting from crawling position and very very close to crawling. His physical therapist says she can see remarkable improvements in his activity that he is improving at a very fast rate! Overall Kayden is improving each and everyday we just thank God for that sweet little boy and for getting us through the rough start at life that he has and pray he continues to grow and improve everyday!

Friday, April 22, 2011

Rough Start to home

We finally arrived home yesterday around 11am after almost of 6 months in the hospital. Kayden had a great day yesterday at home, we started getting things in order to feel like home again. Last night Kayden was having a good night sleeping well, his nurse went to change his diaper and his sats started dropping and he was breathing really hard. The nurse ran into the room and got us when we got to Kayden's room he was completely unresponsive, his whole body was limp and he was dusky. We were taught what to do in situations like these and we started suctioning, and were getting nothing, we were bagging and bagging trying to get him to come back, about the time the ambulance got there he started to come back. Of course through all this his pulse ox was not reading correctly so we had no idea what his sats were, we were just having to go by his color which was not good. When the ambulance got there they got their pulse ox to get a reading and his sats were finally coming up they called air evac for him to be med flighted to Children's. Once he got to Children's he started feeling so much better, he began acting like his normal happy self just smiling away. He was admitted because his white blood count was high and we do not know if that's due to stress or if he has an infection, also his left lower lobe has lots of secretions in it and possibly pneumonia not sure yet they are running cultures. He is feeling great just as happy as can be, if his white blood count is in the normal range in the morning and his x-ray doesn't show any signs of pneumonia then we should be going home. If they don't look good we will have to stay a few days for antibiotics. The doctor does not want to treat him for pneumonia unless he sees two days in a row the same things because other things can affect the way the xray looks and stress could impact his white blood cell levels. Please say a prayer that we are able to go home again tomorrow.

Thursday, April 14, 2011

We have been waiting for almost 6 months for this to finally come true!

Our dream for the last almost six months is coming true. We had our care conference Tuesday and were told we would be able to go home next Thursday the 21st. The words we have been waiting for since Kayden was born we have finally heard. We will be very busy until the day we go home getting finished up with our training and setting up our nursing and our equipment for home as well, also fitting the March of Dimes walk in Saturday! Tomorrow night we will have our ventilator class, to learn how to work it, after that we will only have our rooming in left which Philip has to do once and I have to do twice. The other thing we are trying to figure out is a pediatrician that will accept Kayden with his problems, it's not like they will be doing anything except giving him his shots but there is only one Doctor we have found who is considering him, and will let us know after she reviews his medical records. Phone call after phone call I have gotten for nursing or equipment just shows me exactly how close we actually are. They asked me what time I would like for the ambulance to get us to take us home on Thursday and I said as early as possible we want to get home!!! Keep us in your prayers that Kayden keeps making good progress so we are able to go home next week and that this next week will fly by we wanna go home!!!

Sunday, April 10, 2011

Update on Progress

We are making great progress in our learning to care for Kayden, I have completed my three trach changes and Philip has done one he should be finished by Wednesday with his. We have both been doing pretty much all of his treatments, giving his medicines, and caring for his g-tube site. We will find out Tuesday when the think we will be able to go home. We both still have to go through vent class as well as transport, and I have to room in for 24 hours twice and Philip once. We will know more Tuesday if we can combine transport and rooming in. We are really going to push to be out of here around the 21st. Will update again when we know more on Tuesday!

Tuesday, April 5, 2011

We have arrived to OCH!!

We have made it to Our Children's House safe and sound! It has been a busy day for Kayden so far, many different doctors and therapists coming to evaluate him. The first couple days will be everyone evaluating him and then after that we will really begin all of the training to learn everything. The therapist are really going to hit him hard and try to get him hitting some of the developmental milestones that he is so far behind on. All of the staff here has been extremely nice and very helpful. We are so glad to finally have made it, as of right now we have no idea how long we will be here, hoping its only 2 or 3 weeks, but we have a care conference next Tuesday that should give us a tentative date that we should going home! Please continue the prayers that everything goes smoothly and we will be home in no time!

Monday, April 4, 2011

Our Children's House Tomorrow!

Tomorrow is finally the day we will get transfered to Our Children's House. It was been a long time coming many ups and down, but there is finally an end in sight. We are hoping to only be there two or three weeks because we are already doing most his care here at Children's we mostly will just have to get comfortable changing the trach, learning the vent and what to do in emergency situations. We do not have a set time that we will leave in the morning we just know sometime usually between 9 and 11 so we can be settled in by noon. This is a big step and we need many many prayers that we are not there very long and will be home very soon!

Thursday, March 31, 2011

Maybe there is an end in sight!

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

After Surgery

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

Surgery again tomorrow

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

Lots of Improvement!

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

When it rains, it pours...

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

Rough time

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

3 days post-op!

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

Surgery went great!

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.

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

Big Decision...

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

Getting there...

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!!!

Monday, February 28, 2011

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!

Sunday, February 27, 2011

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!

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

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!!

Thursday, February 17, 2011

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!

Wednesday, February 16, 2011

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!

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

Our first Outing!

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

Moved to the floor!

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

Off Ventilator!!

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

Weaning Vent Settings!

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

RSV Negative!!!

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

growing boy!

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!

Monday, January 31, 2011


Today they started weaning his sedation now he wakes up and is alert when you mess with him without being totally knocked out all the time. They will run tests on Wednesday to see if the RSV is gone which it should be then they will schedule the broncoscpy next Monday to check everything out but they want to give him a few days to be clear of the RSV before they do it. It will most likely be a pretty slow week with nothing much happening till he is clear of the RSV. Keep us in your prayers!

Saturday, January 29, 2011

3 months old

Kayden is 3 months old today! Nothing new just more waiting till the RSV gets done taking its course. Hope next week the will be able to do the broncoscopy to find out if anything is going on with his airway or not. They should try to take him off the vent next week as well. They changed up the sedation they were giving him and not giving so much that it completely knocks him out, now it just takes the edge off where he still wakes up and looks around. Just keep us in your prayers!

Friday, January 28, 2011

Breathing tube...

Yesterday they replaced this ET tube (breathing tube) since he pulled it out. They had planned to replace it later that day but it happened before they planned. Talk about stressful like 5 doctors and 4 nurses came running in they had to sedate him so he would not move while doing it, they tried putting it through his nose they said it would be more comfortable for him, but it was to tight of a squeeze they did not want to chance it. They had to get it back in fast they couldn't play with it any longer because his sats kept dropping so they put it back in his mouth. They put a different kind of tube in this time because he had such a bad leak the ventilator would not stop making noise because he was breathing out around the tube rather than through the tube. This new one has a cuff on it which is like a balloon. He is not liking it at all they had to start giving him sedation because he just kept thrashing around the bed last night. He was fine all day today then tonight he was real upset again. He never acts like this when he is on the ventilator he has been on it half his life. If they have to continue sedating him I am going to ask them to put the kind of tube they had back in because I don't want him to have to be sedated all the time he is to happy of a baby to have to be like that. Doctors said this morning after he has the broncoscopy (spelling) next week and they make sure nothing is going on in his airway, then they will consult a surgeon to see if they think there is a fix for his diaphragm or not before we just wait around 6 weeks and not know anything. I just want to hold him sooo bad, tomorrow will be a week since I last got to hold him. Tomorrow sweet Kayden will be 3 months old and has yet got to come home. Keep us in your prayers please.

Thursday, January 27, 2011

March for Kayden

If anyone would like to donate for the March of Dimes the link is posted below. We are Marching for Kayden if you would like to donate!

<a href="http://www.marchforbabies.org/personal_page.asp?pp=3576226&ct=4&w=4526268&u=KaydenJames&bt=2"><img src="http://www.marchforbabies.org/getsig/pp=3576226&ct=4&4526268K.jpg" border=0 /></a>

6 weeks

During rounds this morning the doctors say that he will not be able to have any sort of surgery for 6 weeks because he will have to be completely well from RSV and all viruses before he can go to the operating room. As of right now they still do not even know if there is even a fix for his problem it may be something he will just have to outgrow. If there is no fix for it he will have to have a trach and we will go home and just hope and pray he will outgrow it, but I do not want to sit here for 6 weeks then find out there is no surgery that can fix it. After he is over the RSV next week I hope I am going to ask them to consult a surgeon and see what he thinks. I do not want to put Kayden through another surgery if it won't work or make him stay in the hospital any longer than he has to. He needs to be home. There main concern still is his growth they bumped him up to 30 calorie formula and maybe we will be able to see some progress soon. Keep praying please!

Wednesday, January 26, 2011

Waiting game....

The doctors came in today and said nothing will be done until he completely clear from RSV which we knew, so I am hoping about this time next week we will be making some progress. They want to leave him on the ventilator because they want him to have the best possible chance for him to succeed when off of it and because they are going to do a broncoscopy (spelling) and they have to put him under for it, to look at his airway and lungs. Then they will consult surgeons and if they think there is a fix they will try to fix it, if not he will have to have a trach and we will go home and hope as he gets bigger he can outgrow it. He has got to start growing soon or they might not let him get off the ventilator because he is so behind on his weight gain, he only weighs 8lbs 8oz he is between a pound and a pound and a half behind on his weight gain. This next week is going to be pretty slow just trying to get well and grow while not having to work as hard, keep us in your prayers they can find a fix for sweet little Kayden.

Tuesday, January 25, 2011

Lung Specialist

Today the pulmonologist came in to see Kayden, the Drs had mentioned that he may need a trach because it will be less harmful to his vocal cords and his mouth. We really do not want to go there unless it is extremely necessary. She said they still do not know what is going on with the diaphragm and the lung but they are working on trying to figure it out. She said she does not want to go there with a trach yet she wants to see how things go when trying to take him off the vent after he gets over this RSV, that made me feel a little bit better knowing she does not want to do the trach unless it is completely necessary. They are going to review all his tests from Plano and see what other test they might need to do to get all answers possible. The main thing is that he just has to GROW, he is way behind on his weight gain because he has to work so hard to breath and bruns to many calories. If he cannot grow when he is off the vent, they said they would have to "consider other options" meaning the trach so he does not have to work as hard. Keep us in your daily prayers please!

Update from birth to now!

Quick update of the past almost 3 months.
Kayden was born October 29, 2010 at the Medical Center of McKinney, he appeared to be fine brought him to me and soon found out he had respitory problems. On November 2, 2010 we were transfered to Medical Center of Plano. He was scheduled to have surgery the following day on his diaphrapm, they took him back and his sats dropped so they decided not to do the surgery. A week later November 9, 2010, he had what we thought was a successful surgery after a long journy of a few problems and many different attempts to get of the ventilator he was finally able to get off around December 10th. He was doing great off the ventilator slowly but surely weaning down on his oxygen. On December 30, 2010 he started working really hard, he had caught a cold and put him back on the vent, for about a week. The surgeon wanted a MRI done while he was on the vent, they did the MRI and the surgeon thought his chest cavity was to small, he took the results to a surgeon at Scottish Rite Hospital. After the the surgeon at Scottish Rite reviewed the MRI he decided he did not think that was the issue. January 21, 2011, Kayden again started working very hard, we talked to the Drs at Plano and them nor the surgeon knew what else to do. We asked if they would just transfer us to Childrens in Dallas. We got to Plano Saturday January 22, 2011 to get him ready for the transfer and he had been put back on the ventilator in the middle of the night. We get to Childrens get him all settled in and we go check into the Ronald McDonald House where we are staying, we get back to the hospital and Kayden starts running a fever, they do tests and Sunday they tell us he has brought RSV with him from Plano. They had planned to already have him off the vent but because of the RSV he is still on. The lung specialist came in today and looked at him and she wants to review more of his tests from Plano and get more tests done before making a game plan to fix him! I think this is a good move they are already trying to get to the bottom of it all and figure out how to fix him!