Wow I can't believe it's been 2 years!

It's amazing how fast time gets away from you. It seems like yesterday I posted on here when actually it's been over a year! On October 29th Kayden turned 2 it's hard to believe its been two years already!  Wow a ton has happened last time I posted Kayden was starting to wean off the vent in December he was admitted for 3 days for close monitoring and a sleep study so he could get completely off the vent! Almost a whole year with no vent! We then began to cap his trach where he was breathing out of his mouth and nose to see if he could get his trach out. Well July 6th he went for surgery to take his trach out. He has now been 4 months with no trach!!! Since July he has been undergoing some genetic testing because he has malignant hyperthermia they were trying to figure out the source from it and he has been diagnosed with central core disease it's a very rare neuromuscular disease. Next week he will actually have surgery on November 16th to have a muscle biopsy to see the extent of the central core disease, to close his hole where is trach was, and to bring down his testicles. He will be admitted atleast one night and were praying only one night. It's so amazing how God works. The drs thought Kayden wouldn't be to this point of his journey until he was 4 or 5. Today he is so happy and so very very strong willed. If you did not know him no one would ever guess he had spent the first 6 months of his life in the hospital and had been completely ventilator dependent almost the entire first year of his life. Thank you all for all your prayers throughout our entire journey we have definitely felt them and keep them coming we are not done yet. At the end of the month Kayden will be going to Dallas for intense feeding therapy so he can learn to eat and in hopes to get atleast 50% off his feeding tube by the end of the 5 week program kayden is very very stubborn and has become very reliable on his feeding tube that this will be a journey in itself so keep us in your prayers!!!!

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!

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.

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!!!

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!

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!

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!

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!

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.

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!

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!

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.

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!

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!

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!

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.

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.

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!!!

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!