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

Nice & quiet

Things have quieted down here finally. It took a few more days for Jordan to finally get over his latest illness but he did it & he is quite stable now. As for his seizures, they are still present but less frequent. Sometimes they are more intense than others but there is definite improvement. The Keppra seems to have helped I just don't know if it's temporary or not. Time will tell. Some days are better than others & there seems to be no rhyme or reason as to why.

He is very happy in general. I talk to him about his Sponge Bob party & he gets excited. He is still into sponge Bob but I don't know how long it will last. He could care less about the transformers I bought him for Christmas until Justice showed interest in them. He likes to watch us change them from robot to car.

Day nursing hours are pretty well covered but nights are very scarce. Hopefully a new nurse will appear soon so I can get steady sleep. Jordan slept through the night the last few nights in a row. If he can keep doing that & I can time his feeding just right I would only have to get up 1-2 times in the night. If he is sleeping he doesn't need much suctioning. If I time his feeding right, it wont alarm during the nigh or run empty & maybe, I wouldn't have to change his pants so often. It worked 2 nights so far so I will test that theory again later in the week & see how we do. It is all up to Jordan though.

Happy to be home

Jordan's home!!!

Whoo!! hoo!! He is doing much better. I think he still isn't feeling all that great but he was well enough to come home. Lungs are much more clear & no more icky colored secretions. Fever is gone too. After speaking to the doctor & talking about his release, I began getting him dressed & he started laughing & kicking & moving about, I think he was trying to jump out of bed & run away. That was the motion of his legs & body language.

Right now, he is cuddled up on the couch with his boppie pillow, watching sponge bob with his eyes closed. So happy & content to be home and feeling better. I am going to have to sneak Mr. Froggy there away to the wash soon.

Quick update

Had a bit of a rough night last night but I believe he is still on the mend. I was told it was typical of these viruses to get a bit worse in the evening. He got a fever and started feeling crummy again and needed 02 also. Mike is up there with him now and he brought toys & 3 movies for him. Not to much else to post, we are just waiting it out.

a little improvment

As the day has moved along I think I am seeing some improvement. Jordans cough has become more productive, his heart rate has lowered a bit, he has not had a fever since this morning and he is taking many naps. He is still on 02 because his 02 level is lower than normal but there are periods of improvement with that as well. Sometimes things are touch & go. He will be better for a while then back to feeling real crummy. This last improvement period has lasted all afternoon & hopes are it will continue to head that way through the night. This is an illness which takes a while to get over, and things can be touch & go. He will be here atleast through Monday & possibly Tuesday. Of course, as the days go on we will know more.

I see periods of contentment & he is also playing his "Jordy Games" here now too. He shallows his breathing when a nurse or RT comes in so they wont hear his gurgles & suction him, he closes his eyes & pretends he is sleeping so no one will mess with him when they come in, when I came to the door I saw big blue eyes focused on that door, He's watching everyone & everything here. Hope to see more Jordy games tomorrow.

update

Still here & it looks as if we may be here for at least a few more days. Jordan is still needing 02 and is having difficulty breathing at times. He has a fever as well and it is just going to take a bit more time to work through it. At times he seems content & other times miserable. I know he misses home & his brother. Mon or Tues would be the earliest for release.

RSV

Yesterday morning, Jordan started wheezing and having a hard time breathing. I brought him back to the doctor because I have never heard him wheeze so bad before & doc decided it was best to admit Jordan. In the middle of the night one of his tests came back and turns out he has RSV. He is going to be here at lest a few more days. We are at CDH. Jordan is not comfortable & working very hard to breath. He receives breathing treatments every 2 hours, they help clear him a little but not as much as I would like to see. Not much else to report on, hopefully soon I can have some progress to give.

The results

As I was calling the doctor & getting everyone ready to go, Jordan's heart rate calmed down. Turns out the 02 on his monitor was a bit off. He is sick but the 02 was giving a bad reading. He has something going on & doc gave an rx for antibiotic. As for justice, he has strep. Glad I took them both in. Right now they are resting on the couch watching sponge bob. Mike should be home early with 2 rx's. I stopped and picked up a new monitor on the way back too.

Jordan is sick

Jordan has something. Not sure what but he has a fever, raised heart rate & O2 is on the low end. I was really hoping to skip the sick bugs this season but it was bound to happen. Justice is sick too. He has a fever & this morning told me his throat hurts. It's tough having them both sick at the same time but it does give me clues as to what Jordan is going through.

Nursing has been scarce. We only have 1 night nurse & a day nurse called in yesterday & today. It wouldn't be so bad if I could get caught up w/sleep but it is what it is & I was able to sleep last night. I have help tonight & day help coming on Thurs. No, it's not enough but it's all I have right now. Mike is working long hours & gets home late. He helps keep Justice busy in the evening. last night they were listening to the Transformers sound track (mike bought for "Justice") and then watched Transformers for the 6th time.

As of now Jordan is resting but he isn't well. I will be calling the doctor at 9:00, we will be going in to see the doc and might have to be admitted. I wont know until later this afternoon, to see how he does through the day & if his 02 levels improve. They have slightly improved in the past few hours so lets hope it continues to improve.

Jordy games

I don't know if Jordan's seizure's are better or worse. It seemed for a short while they were getting a whole lot better, less frequent & less intense, but they have been gradually increasing again. This happened with the last med. we tried. Better for a couple weeks then back where we started. Only time will tell. The new med has helped but I am fearful it is only temporary.

On a positive note, he is one happy little (BIG) peanut. giggly, smiley, has some of his tone back to stiffen his body and play his little Jordy games. Example; when changing his clothes he will stiffen up & make it hard to takes clothes on or off, after wrestling for a bit I look at his face a he has a smirk, he knows what he is doing and has the control over his tone to do it, and it's funny to him. To me, I love to see him have a good time & most of all have control over something.

The pictures have been a bit scarce lately and, I even got a new camera for Christmas. I want to get lot's of new pictures with it and hopefully some portrait quality snapshots. It took me a long time to learn how to use all the new features and I still have more to practice with. I also learned the high quality higher MP shots require a steady hand. Something my coffee does not give me in the morning. I will get more up soon.