Jude is doing MUCH better! He started back to school on Tuesday and the day went fairly well. He was very tired by the end of the day and pretty cranky. I think it was just an adjustment after resting due to being so ill. We have come so far as a family within the last four years since Jude was born. We are now our own little rolling hospital and we can care for him very well when he is so sick. I know that if a regular healthy child walked into the ER with the issues Jude had they would have hospitalized them. We are now going on two years without an extended hospital stay (knock on wood).
See I feel much better!
Jude is now smiling again! He finds his own ways to communicate with us, but it's primarily smiling or laughing. When he isn't smiling or laughing.........something is wrong.
Emily is doing well too, but pretty overwhelmed with school. She is keeping her grades up, but I worry about her being over extended sometimes. She has a lot more homework this year then she did last year. She is getting ready for her annual birthday/Emily's Smile Boxes party. This will put her over 5000 boxes passed out to local hospitals to help pediatric patients and their siblings. I am very proud of her charity and how much good it has spread throughout the nation. We just shipped supplies to a church in New York to put together 100 boxes for a local hospital. The hospital had emailed us for help, but we were unable to ship that many boxes. We are very grateful the church is helping make this donation possible.
Well have a good day and keep a positive attitude!
1. Spending quality time with a child is way more important than anything else you can do 2. Everyone is entitled to an opinion, but if you talk about someone without them being there be prepared to admit to it and give them your reasoning. 3. Death is just a part of life and it can be just as beautiful 4. Don't sweat the small stuff 5. Thunder is just Angels bowling so there is nothing to be scared of. 6. A house is just a house but a family makes it home 7. Friends may come and go, but your family will always be there so treat them nice 8. Frito lays, oreo's, and dr pepper are really bad for you but can always cheer up a really bad day 9. Sometimes God takes little ones because he could not perfect them anymore than they already were. 10. If someone is always upset about something than nothing will ever change them 11. Catching tadpoles can be lots of fun 12. Sometimes there are just no explanations 13. It's okay to be quiet 14. A walk a day keeps the doctor away 15. There is nothing better than a big ripe red apple 16. Save your pennies for a rainy day 17. Stand up for what you believe in, but always be willing to listen to the other side. 18. A child's mud pie is made with love 19. your kids are only little for awhile so let them jump on the bed for a bit 20. Take time to meet your neighbors....they will be calling 911 when you are old. 21. People either work hard or they don't and you cannot normally change that. So don't get a case of the lazy's! 22.Thank you notes should be hand written and sent out promptly 23. Words hurt for more than hitting someone ever will so be careful what you say 24. Never scold a child for breaking a dish. A dish can always be replaced. 25. Always dance with your daughter.
Jude is still not well. Now we are back into one of those decision modes........do we take him back to the doctor or wait it out? He is very congested which could signify this is indeed just a viral infection. However, he is coughing so much he cannot sleep well. He sounds like he is breathing through a honeycomb with pop rocks mixed in. You can tell it hurts him to cough now, but his vitals are good. His toenails are a little blue, but the rest of him looks pretty good. So it's a toss up! Is it viral or has it become something else? Charlotte said his temp did start elevating again last night. Now my understanding is if it is viral and the temp goes back to normal then a day later starts to elevate again it could be in indication it's now turned into more. WHO KNOWS! It's always a toss up and a wondering game.
We put him to bed early last night so he could get rest. So we administered his sedative, but his breathing so so rhaspy that Mike always gave him the Abuterol and Palmacort (sp). So therefore they countered the sedative. Jude coughed and coughed and then clear as day started yelling "moooooooooooom". Jude rarely makes audible words. So I just had to pull him out of his bed and take him to bed with me and this is what I heard (all you can see is his IV pole it was dark)
Poor guy is just miserable.
I am not sure we will go on our trip in a few weeks or at least not fly. I don't feel comfortable going so far with Jude not doing well lately.
When my husband and I decided to move to the popular city of Roanoke, TX we were not aware we were moving into an area of land that had been annexed for TX Motor Speedway in 1995. The only thing we were concerned about was finding a great school district for my child and the new baby we were going to have. We also wanted to find a nice house they could call home. When we purchased our home we had no idea our baby would suffer a massive stroke and need full time medical care. We have had to call 911 due to Jude's condition a handful of times. The Fort Worth Fire Department and Med Star EMT'S have been AMAZING. However........did you catch what I wrote? That's right...we live in Roanoke and Fort Worth emergency responds. Due to the annex we basically feel we are a floating city that no one wants to claim. We know to stay calm in situations with Jude and if possible we transport him ourselves. We do this because we have learned that calling 911 in our area equals a very slow response time.
Sunday morning I heard Jude coughing over the baby monitor. This is not unusual and it generally takes a pat on the back or rolling him to a different side to remedy the situation. However, on Sunday he was having a very difficult time. I first administered CPT which is where you use a small cup to pat on the front and back. My assumption was that Jude had phlegm stuck in his throat and needed help dislodging it. However he continued to wheeze and started to turn very pale. I then administered an abuterol treatment and connected his stats monitor. His Blood oxygen read 70. This is real low, but I know the machines are not always reliable. So I secured the toe monitor tighter and rechecked his vitals. I counted his breaths 1, 2,3,4,5......to fast I thought. I took his abuterol mask off and turned Jude on his side. I checked his fingernails........blue.........his toenails.........blue.........around his mouth....blue. Heart rate - 220. Respiratory rate 67. Time to call 911.
I walked into our bedroom calmly where Mike was sleeping, "Mike I need you to wake up and call 911 please". He looked like a cat coming out of a net "WHAT????". He then followed me "what is going on". I had Jude still on his side started giving CPT on his back again. I explained the situation quickly, but Mike was still half asleep. He responded "I think we should transport him". I said " The baby has blue fingers and toes I will not be one of those mothers that thinks she can transport when I know he needs oxygen". So I called 911...............and thus the reason for my rant today.
I cannot remember verbatim the conversation but it went something like this.... 911 how may I help you? Me: This is Jennifer Ortiz and I have an emergency with my son I am in Chadwick farms and I need Roanoke to respond. 911: You are requesting Roanoke? Me: Yes. They are 3 miles vs FT Worth who takes 18 minutes. 911: Roanoke? This is FT Worth 911 with caller requesting transport from Roanoke
After that basically Roanoke said they wouldn't help us and sent me back to FT Worth. Luckily FT Worth knew and had already dispatched Med Star. It took 14 minutes for the fire department to arrive and 18 minutes for the ambulance to arrive. Once they got there they were amazing, but it was an unnerving scene. They immediately hooked up oxygen and an IV and carried Jude to the ambulance vs using the normal stretcher. Mike said we spent over 20 minutes in front of our house stabilizing Jude prior to transport. His seizures were coming in waves one after another with full convulsions on some. He was one sick little guy with a fever of 103.8 auxiliary which is actually 104.8. They believe he had a viral infection that caused febrile seizures on top of his regular seizures which caused his blood oxygen to drop and heart rate to sky rocket. Once at the hospital he was tended to, regulated, and we felt comfortable taking him back home.
We have had continuous issues with the response time after calling 911. I even had an issue once being transferred FOUR times to different cities because 911 wasn't sure which city should respond. That was the incident where Jude had aspirated and the doctor's were amazed he made it. On one trip (I won't mention which one because this EMT was amazing) an EMT looked at me and said "Ma'am I am sorry it took us so long to respond" Me: "I didn't want to say anything because I know it's not your fault" EMT: "No it's not, but something needs to be done about your area and everyone in this vehicle knows it" Me: "What happened to the Med Star that was stationed off West Port Pkwy?" EMT: "They cancelled it for budget reasons" Me: "Sigh, wonder how they would feel if it was their child that was sick" EMT: "Good question" Me: "Look we are well educated and know how to care for our son, but what if someone in this neighborhood had a massive heart attack? Every second counts!" He agreed with me.
In my mind the medical industry should render aid first and ask questions later. I don't know the politics going on between the cities due to the annex. I do know Roanoke wouldn't allow me to rent their clubhouse at a resident rate because I was technically in FT Worth with a Roanoke address. However, not renting me your clubhouse is very different then not helping a child. Again in an emergency situation every second counts and 18 minutes feels like a lifetime. Something needs to be done! I want to make sure that anyone that suffers a heart attack, a stroke, falls, or any life threatening emergency can be handled in our area. In fact, I read on the blog of the mother of the little boy that drowned it took about the same time to respond to him. I wonder if that situation could have been different?
I feel this is about money. This is two cities fighting over the annex and no one wants to officially claim us. 14-18 minutes in my mind is an unacceptable response time. I work for an insurance company and we will not insure any home with more than a 7 minutes response time....why? Because by the time you reach 14-18 minutes what do you think a fire is going to do? Let's put this in perspective........if you had a child that was seriously injured and every single second count.........how would you feel being on the line for that long?
Something needs to be done. I am asking the local TV station or someone to pull my 911 call and listen to it. I educated, I am medically aware, and this is unacceptable! That is my rant for the day. I am however very thankful Jude is doing better.
Things are still going well. Jude is adjusting and loving his new wheelchair and we are working on getting a van to house it. He got new AFO'S yesterday which is wonderful. They support his feet and keep them straight vs curling under due lack of use. Jude is still have asence seizures. It makes me wonder how long he was having these before we caught them. I thought his seizures had been decreasing, but it looks like they just took on a different hard to detect form. However, he is still very happy. He is also having great "reactions" to certain people and items. He gets excited when he hears people he knows and he literally squeals every time I read him "Good Night Gorilla".
Emily is as busy as ever, but doing well. I am hoping to let her participate in a little pageant near our house in September to see how she does with her own hair/make up and her modeling prior to Miss Texas Teen USA. We also have her annual Smile Box party set for October. We will be putting together 350 boxes to benefit the DFW Pediatric hospitals.
Jude got his new wheelchair! We are just so excited for him. His other chair was so uncomfortable for him and I think it really hurt his back. The mobility sales person and the therapist met at my house last night to fit Jude into the chair. He loved it so much that he fell fast asleep.
Then this morning he actually got to see out of the school bus.
The head rest is really working for him so far in regards to positioning. He has about 30 seconds of neck control before his head falls. So we really like that this rest if keeping his head up for him. We are very blessed. The wheelchair is even in Dallas Cowboys colors and has his name on it.
We are trucking along lately. Mike and I were reflecting today on how far our lives have come in the last few years. We are in a really good place in life right now. We are accepting of what has happened, feel blessed with our children, and we are happy in our marriage. With that being said my life is still pretty chaotic (who's isn't?). So if I don't call, or write, or forget something vitally important to you just know it's not intentional at all.
It's really nice to finally feel happy and accepting. I truly love our life!
Me: Mike look! We could move here and our house payment would be SO cheap. We could literally pay it off in no time! I wouldn't have to work so hard. http://www.realtor.com/realestateandhomes-detail/8535-Brahma-Dr_Justin_TX_76247_M81684-90018 Mike: Um it's a mobile home Me: It's a nice mobile home sitting on an acre of land. We could plant trees and save up to build our custom home. Mike: That's it you have lost it Me: I have not! Mike: I meant that as much as you hate storms/tornado's you are going to live there? Me: Well.............we will get a storm shelter!
Guess he didn't go for it? I love love my house, but the idea of not having a house payment.......well it makes you consider other options. Just imagine the possibilities.
Jude is well. He had a great birthday party and had so many loving people attend. He did have a seizure when a balloon popped and everyone got very quiet. A few people were also very concerned, but I explained it was a mild seizure and something we are used to. I forget that people are not used to be around him all the time. My friends/family came and all gathered around celebrating his life and I even felt my moms presence with us.
So I do have to share something adorable. Jude doesn't give full expression of communication to us very often. Well I generally read "Goodnight Gorilla" to him, but we have taken a break from that story lately and had moved on to "Brown Bear Brown Bear". Last night I pulled out "Goodnight Gorilla". I just said the title of the book and Jude squealed and smiled. He then made audible sounds throughout the entire reading. He really loves that book. Here is a picture after Jude's party
