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!