trach teaching.....complete

We finished our last trach changes today. Now we just have forty eight hours of parent care and then we are coming home!!!! I cannot hardly wait! It looks like Wednesday shall be the day. Lane has so much equipment to go home with now. I will be running a small hospital out of my house....just kidding. He does however have a semi full of machines: suction machine, humidification, oxygen monitor, portable oxygen, apnea, two huge boxes of supplies, and more coming on monday. We are gonna have to build another wing onto our house. Thank you everyone who prayed for Lane during this stay. We prayed hard to not have the trach, but God knew what was best and I am so glad I decided to listen. Lane is so much happier now. Bless all of you. Danielle

first trach change...

Lane got his original trach out today and a new one in! This is what we have been waiting for to start training to work on going home. Roger and I now have to learn to change the trach. This is one step closer to bringing him home!!! I can't wait to change it tomorrow.....it should be interesting and terrifying. This is short but I am headed back to Lanes room.....

Tuesday!

Nothing new today. Lane is still sleeping and he did well throughout the night. Roger and I are still learning the trach care and have a few more days of teaching before we get to change the trach. I am excited and nervous about the first time changing the trach. I'm just scared to death I wont get it back in but I am sure that I will. Lane is such a little ham. Last night he was just smiling and "cooing" although he is not making noise now you can see his little mouth working away. I am going to start looking for a sign language instructor as soon as I get home and settled. Lane will be able to talk eventually, but it is still a good idea  to learn and teach him. At nine months old babies can start learning sign language. Hopefully all is well today....if it is I won't be updating again until tomorrow. Until next time.....

!!!!

well roger and i just got out of our first trach class. it went well and this is all going to be much easier than we thought. we actually got to hold lane yesterday and it was AMAZING to be able to cuddle him in my arms again. I am so ready to come home with my little man. It appears it will be longer than a week before we come home. Hopefully by next tuesday but it may be a few days more. this is short but im going back to my baby. God bless.

sunday....

Goodmorning, we are hoping to get Lane off the vent today. Just a few minutes ago when Lane was throughing a fit I actually heard the tiniest little squeak. There is hope for us hearing him cry! He is adjusting well to the trach and vent. The nurse told me today that she will let me hold him even though I'm really not suppose to!!! I'm really excited. I have only held him twice in one week. Prayers are working and although I was very much against a trach...Lane is feeling so much better. Thank the good Lord for the hand he has had on my precious little boy. Thank you all for your prayers.

trach is in

Lane is out of surgery and stable. He has a trach and a g-tube. More update added to this post later

9 pm- Lane is doing well and is awake from surgery. His trach is in and he is on a ventilator. I did not realize that he would not be able to cry, but it is so. Don't know how we will manage that. His g-tube is significantly small and should make things easier. For the first time ever lane has nothing taped to his face or coming out of his nose or mouth! The trach is going to be a lot of care but I really feel that Roger and I did the best thing for Lane. We will manage! Hoping Lane is off  the vent in the morning and we can start our training for trach care. Goodnight!                              

trach!!!!

Lane is four months old today and Roger, the doctors, and I have decided a trach is the best option Lane has. It is not by far the ideal situation and is going to dramatically change my lifes, but we will get through it. School starts for me in one week so we are hoping to get the trach and be home by next weekend. I am looking into a home health nurse to sit with lane while i am in class. I want to take a minute to vent just a bit. Facebook drives me crazy. People always complain about their lives and how bad they are. From supper being burnt to some little highschooler talkin crap it is pitiful. People need to step back and look at their lives. There is so much worse and I am seeing it everyday and these people who will not be taking their kids home still have a smile to offer. Come on....get over it. Ok I am done. Now lane is doing good and it is killing me to be on the computer and in his room so this will be short. Prayers are needed so please continue. Thanks for the continuation of prayers.

vent is out....

Lanes vent came out around 3 this afternoon. It was the most amazing thing to see him moving and breathing on his own and he actually was LOOKING at me and HOLDING my finger. O i love him so much. He is stable and on a nasal canula for oxygen. I cannot hear any stridor but the doctors have not been in so I will not assume anything or get my hopes up too soon. Lane, the poor baby, is so swollen, he looks like he has been beat on with two puffy, black eyes and his swollen hands and feet. I just got done holding him for the first time since monday. I must admit i teared up. We are still hoping he clears up and does not need the trach so please continue praying. Roger and I finally got a room for tonight in the Ronald McDonald house in the hospital so we are gonna finally get a good nights sleep out of a waiting room chair. It's only for tonight but it is so much better. Well we are going to eat then I'm headed back to our miracle baby.

Danielle

...................

Lanes mri results came in this morning. His chiari malformation is not the likely cause of the vocal cord paralysis. Thats a good thing but the problem now is what is causing it. The drs are still looking at nerve problems because he has the feeding dysfunction also. We were told that they are going to try to take the vent off of him tomorrow and see how he does. If there is no improvement we are going to have to submit to a tracheostomy. This is scary for me and I am completely unsure how we are going to work our lives around this. I am supposed to start school on the 23rd which is little over a week away. We have a lot of decisions to make and some are going to be hard. The most important thing is Lane and we have to do what is best for him. I have been overwhelmed so much, but we can handle this just as we have handled everything else. A few classes and I will be a trach expert. All i can ask for is prayers that lane is better in the morning when he comes off the vent. I want my baby back so bad. I have not been able to hold him since monday and it is absolutely killing me. Well thats really all I can say for now so I will be back on with more info tomorrow.

still hospitalized.....

Well we are still here at riley. Lane is still on the vent this morning. We are really hoping that he can come off today and get off sedation. They did an mri last night to look at his brain structure but we have not heard the results. Lane's neurosurgeon does not think it has anything to do with his chiari malformation. I'm not sure I posted about that technically so he is a little bit of info on it...
    Arnold Chiari II malformation is a malformation of the brain commonly seen in persons diagnosed with spina bifida. The brain is severly compressed from the spina bifida and is pulled back and down into the vertebrae. This creates a cork of sorts for the brain which leads to hydrocephalus, water on the brain, requiring a shunt. Pressure on the brain stem can cause many neurological problems includng feeding dysfunction, breathing problems, developmental delays, etc.
If the problem is a nuerological problem we are being told lane will most likely have to have a trach...an artificial airway. They do have a surgery for the chiari malformation but it is very high risk. They basically remove part of the top vertebrae of the spine and sometime basically move the brain. I'm so praying for a non neurological answer because neither of these options are roads i want to cross. We should be finding out more info today so i will update as soon as possible. Thanks to you all for the prayers we have been recieving.

prayers, prayers, prayers.....

It looks like lane will be turning four months old at riley hospital. We headed back to the hospital because of the stridor we have been fighting for over a month. He stayed a day in a pediatrics pulmonary unit, but last night he was moved to intensive care. About ten last night they decided it would be best to sedate him and put him on a ventilator, so now my baby that ripped out his vent at 6hrs old and 4lbs is now on the one thing we fought to keep him off of. As much as I hate to see him look like this, so lifeless and helpless, I feel I must admit he is more comfortable. Lane's heartrate is finally down to normal and his stridor is gone, making it very easy for him to breath.....although the machine is breathing for him right now. I hate this whole thing, we have been to 3 different hospitals and they are just now seeing its not croup. He has an IV in his skull right now, but they are going to put a pic line in today. He also goes for an mri at two to see how his brain is laying to rule out the possibility of pressure on his vocal nerve. I really don't know anything more at the moment. All I can ask is for prayers.....tons and tons of prayers. Please help with this small gesture. I love you all.....Danielle

we are home.....

So we made it home from our last hospitalization and lane is doing well. All his tests came back normal so they let us go home! He is still having some respiratiory problems but significantly better than before. Lane is still taking a bottle three times a day. We are going back the 19th and 20th for some more appointments including a swallow study. Lane is now weighing 12lb 13oz. He is falling behind developmentally so i have been trying to get in contact with his therapists. I will try to get some pictures on here soon. O and many many thanks to everyone who participated in Lanes benefit. We really appreciate everyone. Thats all  for now...............:)