It's been a while

There is a big gap in postings here. Many things have happened. There were changes in the family and a move to another town. Jordan was also not well for quite a time. His seizures became out of control, and he was just getting sick a lot and had several lengthy hospital stays. His seizure meds have changed which helped with his awareness level. He isn't so sedated anymore. He had a few surgeries with his tummy so he no longer has the GJ tube but just a g-tube now. He is tolerating food in his tummy!! Jordan is on a ventilator at night when he sleeps. His 02 was dropping for no reason even during the day so doc put him on the vent and it seemed to help. Jordan was breathing shallow the vent helped give bigger breaths and fill up the lungs in hopes to improve lung function. However the first couple nights with the vent, the apnea alarm was non stop. It explained a lot but we also learned Jordan has severe sleep apnea.

The few hospital stays Jordan had the last few years were scary ones. One time was for seizures. another was for sepsis. As I stated the seizures are now under control but would you believe just needing to poop would cause such a severe issue. Apparently, if Jordan doesn't have a bowl movement on a regular basis (like every day) it throws his ammonia levels off as well as some other counts, which in turn cause seizures. Pretty scary, needless to say we make sure he stays regular. As for the sepsis, they ran numerous tests and cultures and never did find what caused it. That is scary because I need to know so it doesn't happen again.

It's been a rough time here, nursing issues were difficult to say the least and we had to have several staffing changes. For the most part I hope they are mostly resolved, but it seems to be an ever changing situation, which is stressful for everyone including and especially Jordan who has to deal with them one on one daily, depend on them and trust them. The equipment and supplies have been another year long battle to get what Jordan needs but for some reason, in the middle of the states budget crisis, God showed us all he is taking care of Jordan in-spite of the state of Illinois. Jordan got a new wheel chair, a ceiling lift, and some more nursing hours just recently. If I could fill those hours with good people he can go to school and I can go to work and sleep.  With the shortage in help... RELIABLE help, I realized how much the stress and lack of sleep affected me. I need the help. Some days I wish I didn't but it's what keeps Jordan home with us.

Once I relearn how to use this blog, with the new technology I have (still unsure how most of it works) I will post pictures.

For now, Jordan is well and stable. Not as interactive as he used to be but hopefully getting him out and about more with school and the little trips we make here and there he will be. I hope he will bring out that personality again and be my happy little peanut.

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.