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!

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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!