decannulation about to be scheduled

Well, since I posted last Jordan managed to get a year older. He is five. Such a big boy. He got a couple cold bugs this winter but nothing serious & was able to stay home & fight it off. Today I received a call from Jordan's ENT and he wants to schedule decannulation. WOW, big step. He said he will first do a scope then wake him with smaller trach, then take it out the next day. He would be inpatient for 3 days for observation. The fear is no longer, I am thourghly excited & hopefull. Trying to be realistic...... but soo hopeful! As soon as I can get batteries I will post more updated pictures before Jordan gets a naked neck.

IMPROVEMENT!!!!

Yes, we finally have news of improvement. Yesterday Jordan had his scope to check on his airway and Doctor said he saw improvement in his airway. It seemed less floppy in the upper airway. He wants to start the process of downsizing his trach which could eventually lead to decannulation. Don't want to jump the gun & get any hopes up because it is a long process which may have setbacks, but at least we are moving in the right direction even if for a little bit. The plan is to slowly downsize his trach and monitor him to how well he tolerates it. I love the idea of not needing all the medical equipment & supplies & all that goes with it. But also am nervous because his airway is stable & secure with the trach & he breaths clear & easy. Also his trach is what qualifies him for nurses. What ever is best for Jordan & what ever God feels Jordan needs is what I want right now because there are pluses & minuses to both sides.

Other than that awesome news, all is well. Jordan did great during his procedure & recovered fantastic. He is anxiously awaiting next Wednesday because he goes back to school then. He loves his school & friends & teachers. He is always happy & smiley when we talk about it. We are counting down the days here.

Finally an update

Sorry it has been so long since an update. Jordan has been doing very well. We have been busy getting caught up with appointments & such. Jordan also started school last week. He attends a specialized school 5 days a week and is gone a good chunk of the day. I really miss him around here, but he is doing awesome. He is alert & participating with all his activities at school. He really needed this, I think it helps him to see other kids with similar situations to his. He stays awake all day, except for a short nap at lunch time, & is a big happy smiley boy all the time. He is in his second week now. His nurses noticed he is controlling his "flinches" while at school. He has made friends too. I am very happy for him & proud of the progress he is making. He finishes up the summer session in a couple weeks then will start up again late August. Justice is happy for him too & was admiring Jordan's latest art work he brought home. We just have a handful of appointments & 2 procedures to attend then we should be pretty well caught up with Jordan's medical follow up stuff. At least for a while anyway. We pray he can just stay healthy & happy for a while & enjoy this time right now.
1st picture is the boys at the Children's museum on mothers day building something very important. 2nd pic. 1st day of new school for Jordan (very serious) third pic. How do you like your new school Jordan?

all better

Jordan has not needed 02 for a couple days now & I think he is finally over the flu bug. Even though he has been sick, he has been in a very good mood all week and just a happy boy.
We found out that his brother Justice has a class mate who lives just a few houses behind us so, Justice has had a friend to play with this weekend. Jordan enjoyed the company also.

Jordan on the mend

Last week Jordan got the flu. Actually the whole family here caught it but, it hit Jordan the hardest. He did have to be admitted for a few days but is home now. He is not well yet. He is still having some difficulty breathing but is better than he was last week. It all started when I caught strep, I stayed away from Jordan so he would not catch it while at the same time, Mike was unknowingly carrying the flu and caring for Jordan. I was not able to keep updates because before I could recover from strep, I came down with the flu myself. Every one is on the mend here just trying to get over all the sickness that went around. Needless to say Justice had a very uneventful spring break. He was sick too and he had to go back to school today on a cool, damp, rainy, gloomy day. He just wanted to go to the beach over spring break but between the winter & illness lingering around here there was no beach party here. As soon as every one is well enough, that is going to be a good place for a family outing.

Jordan's Birthday

I can't believe he is 4 already. What a big boy! He had the most wonderful birthday. I have not seen him so happy & alert for so long for a while. Of course it was all about him that day. He loved having his family here and all the attention. He knew just what was going on and would smile & giggle every day when I counted down to his "Sponge Bob birthday party" ok, here are the pics.

Go to Justice's page-update