Sunday, June 30, 2013

A shave and a haircut....

The doctor did increase Jude's Artane intake. So far he seems to be doing very well with the change in medication. I have seen a few bruises this weekend, but they are on his arms and he likes to hit his toys hard.

Jude's hair has been getting very long again and I have already blogged about how excruciating it is to give Jude a haircut. It's just awful! He hates the buzzing noises of the clippers and it is just miserable for him. So tonight we decided to sedate Jude and I insisted on cutting his hair myself. Mike was taking Emily to get a new PS3 game and I assured him that I could handle cutting Jude's hair! I kissed Jude softly before I gave him the dose of Valium and told him goodnight. I sighed heavily as I administered the medication and felt horrible I had to sedate him. I waited about 15 minutes and then laid Jude softly on the yellow wedged mat. I began to quickly trim the hair away and Jude looked at me curiously. I assured him the entire time that mommy was just helping him out. He was calm......which was good. The whole process took under 15 minutes and then I ran him a warm bath. I struggled (with my back) to get Jude into the bath and I once again admired Charlotte's strength with Jude each day. I washed Jude off and talked to him sweetly. I then moved him to the bed and covered him in baby lotion. Then I snuggled him into a fluffy blanket and let him fall fast asleep. I kissed him gently on the head and told him to have sweet dreams.

I sometimes struggle with the fact that other people are caring for my child. I shouldn't, but I do. I feel guilty! I am so good at running an office, my own business, and more.......but home is not as well rounded. I don't get a lot of time to clean and when I have the time it's NOT what I want to do. Jude's schedule of doctors appointments are scrawled into my work calendar, but I know I miss some days. However, our family has been blessed. Some how God knew that I needed relief in some form so he sent the most amazing nurse to take care of Jude. Many people struggle with leaving their kids. Many people struggle with finding a good nurse. I guess God just knew that due to my past I would feel the need to continue working to care for my family so he sent the most amazing most organized human being to care for Jude. Charlotte organizes all of Jude's medications and if he needs a refill of medication she now has the pharmacy delivering!! We don't even have to wait in line anymore. His therapists all are on perfect schedules, his so thoughtful teacher just comes to visit, and his doctor visits are fine tuned on the calendar. She even sweetly helps Mike's blind mother around on Fridays as his mother pats and sings to Jude. Charlotte is amazing she is one of a kind. Sometimes early in the morning I answer the door in a haze and Charlotte just knows it's been a long sleepless night......and she doesn't judge. I drag myself back to bed for a few minutes before going to work and when I get up Jude is all smiles. She is so good with him!!! She baths him, washes his linens, and just loves him. On top of that we have a great weekend nurse that looks after Jude too. Don't ever mistake that I don't know our blessings because I really do.

Tuesday, June 25, 2013

A happy Jude and a a hyper Jude

Well hmmmmmm

That's what I think a lot when it comes to Jude. He is a happy little fella lately. All smiles when I get home and he tries to talk back to me when I speak to him. He opens his mouth real wide like he really wants to get some words out. I posted this last night on Facebook.

However (yes there is a however) Jude's very toned out lately. He seems very rigid and his therapists are having a hard time working with him. His startles have also increased and they are growing more violent. Startles look like full seizures and are brought on by loud noises. We also have noticed some bruising. The nurses asked about increasing his Artane (for tone) but I want to talk to the doctor first.

So here are my thoughts.
1. The bruising I believe is from his AFO'S (leg braces)
2. This could just be a tone issue so it may very well be easily resolved with the increased Artane
3. I began to wonder if this is possibly a reaction to the seizure medication.

I began to add some things up in my head. I had mentioned in a blog some time back that at Cook's they told us Jude's red blood cell county was down. They chalked it up to slight anemia. They said it was so slight there was no issue. Then I began thinking about his recurrent infections lately, and his hyper tone, and his blood cell count. You can Google Felbatol for additional information regarding what we look for with this medication. However, if it is the drug I am not sure there is much the doctor will do. He told us there would be possible side effects with it but that is was the last resort drug for Jude. Hopefully, if it is the medication they can scale it back and increase the Depakene.

Honestly, I think it's all a guessing game with the medical field just like it is for us. Is it something as simple as increasing the tone medication or is it something more complex like the seizure meds.

I put a call into the doctor so we will see what they think.

Wednesday, June 19, 2013

The full story of the 24 hour debacle and a few things about me.

Last week we decided to make an impromptu trip to California for business mixed with half a day of pleasure. Mike knows I have full panic attacks in traffic so he offered to come with us and drive. He told me how terrible the traffic is in LA (boy he wasn't kidding) and that he didn't want me to have a heart attack. I asked my friend Gena to stay with Jude. She is familiar with G buttons and loves being around him. So when the nurses left on Saturday and Sunday she filled in. Now before I start telling you our tale I want to explain that I have a recurrent nightmare. I am always around 15 hours away from home and I cannot get to Jude or to work. I am absolutely panic stricken. We hardly ever travel for longer than a day or so because of Jude. I just don't want to be away from him for to long.

We flew with my friend Gina who is amazing and always works out "non-rev" tickets for us. Which means we fly stand by and simply pay the taxes on our tickets vs. a full ticket price. We wouldn't be able to travel without her. Gina is the master of flying like this, but I am still learning. However, I have been pretty educated in the past few years. Since we are non rev we have to wait for empty seats that aren't being used. Generally we look at the flights to see if they are showing seats available and if so we mark ourselves on that flight. Next we look at return flights and do the same. We generally always leave a few other open flights after the initial time just in case something happens and other options into other cities if necessary. Well this weekend turned into my nightmare. On our way home we went to check into our flight. Gina sat clutching her phone connected to the companies website watching as people checked into the flight. She turned to us and said "there are 14 non-revs and there are exactly 14 seats...we will make it". You always have a little sigh of relief when you know you will make it. However, I noticed the gate clerk wasn't checking the flight screen like they normally do and wasn't looking like he was assigning any seats. He just seemed...........flustered. So we got down to when the plane would depart and I noticed he printed all the tickets up and laid them on the entrance to the gate. He looked at us and said "I will be right back". He was gone about 10-14 minutes and he was coming back in we noticed the plane............was backing out.... WHAT???????? So Gina rushes to the desk "Sir there were 14 empty seats on that flight!!". He said "we aren't holding a plane for non revs" rudely. Then when asked if we would make the next flight he replied "No, there are 5 seats your aren't making it" again rudely and walked off. Oh the foul language that swirled within that airport is still lacing the skies!! So our adventure started. Those 15 (we soon found out it was 15 empty seats not 14) non revs all rolled to the next flight to DFW. That flight had new people that had more seniority and therefore they were placed in seats first. So then we all rolled to the next flight and we are over 30 non revs now. Mike called his brother who works for a different airline and he got Mike listed on that flight. We had to get one of us home and he was the first one who could get out. He kissed me goodbye and sprinted across the airport leaving blisters on his feet. There were 3 seats available and Mike was number 4th on their non rev. We all gritted our teeth texting back and forth and suddenly Mike got a seat!! I breathed a little easier.

Searching for seats for us continued late into the night until the last 1:10 am flight.......was over sold. Emily looked at me "Mom what does this mean?". "This means we are sleeping on the floor Em!". The gate attendants talked to Gina about what happened and confirmed the gentleman we originally dealt with has serious work issues. The manager was the one that explained there were actually 15 empty seats and he didn't seem very happy with what had transpired. We explained that we understand being a non rev has it's risks for any departure but that being treated less than human isn't nice! He agreed. So the sweet gate attendants went and got us all lovely blankets and pillows. We found a corner in terminal 47A and we all snuggled in. Gina looked up to our swarm of people and said in her friendly Cinderella voice, "Good night everyone!! sweet dreams!!" She always makes everything brighter.

Early that next morning we woke up to a literal sea of people flooding into the terminal. It took me a minute to realize there was an issue. Our first flight......over sold. Second flight........over sold. By the time the third flight arrived the entire terminal was a maze of people, baggage, and cell phone wires. Then we heard the issue. There was very severe weather in DFW and 40 flights had been delayed or cancelled. OH MY WORD.....this was bad. I began texting some friends that work for the airlines. They had different suggestions and my mind was swimming. The wife of a captain that has flown for more than 40 years looked at me and said "This is the worst I have ever seen any airport" even she couldn't get out. We were now at over 100 non revs. Emily and I were 68+67. The nice ticket agent looked at every single flight going out of the airport, orange country, and Ontario. She nicely said "Honey your probably not getting home until Thursday". I called Mike "find us a ticket on S". By a slim chance he found 1 trip with a stop in San Antonio left. It was on a web special and it would only be about $150 more than what our non rev cost was and that's for both! "BOOK IT" I exclaimed. Gina even booked too. We then went and changed into more comfy clothes, grabbed our bags, said goodbye to our new friends, and headed for the new terminal.

We went back through security and since we were now pros this process was very easy. We then sat and waited to be called for our new flight just waiting for the other shoe to drop. Then we heard it "This flight is over sold if anyone would like to give up their seat please let us know.". Under my breath you heard "Oh hell no you better FIND me a seat!" Once we boarded the aircraft I let out a sigh of relief. We flew through turbulent rocky weather and had a double bump landing and it really didn't phase me. I was so happy to be going home I could care less about my prior fear of flying. I am 100% over that now! I could have hopped in an air balloon and steered it home.

Mike and Jude were waiting in the parking lot with open arms. Our 24+ hour debacle was over. I looked at Emily and said "let's take this as a lesson! We had to sleep on the floor for 1 night and were miserable for 24 hours........many people do that every single day in the world". She nodded in agreement and she seemed to really get what I was trying to say.  I also told her that everything you do whether positive or negative has a trickle affect on everyone around you. In this case one persons actions affected hundreds.  We also met a very nice man on our plane who wants to contribute to Emily's Smile Boxes so we chalked it up to, everything happens for a reason!!

In another totally different thought... I just wanted to confirm a little bit about who I am. It's not directed at anyone. I just hear some comments sometimes. 1. I love facebook........a lot. I love social networking!! I advertise all three of my businesses on there and have written more insurance than I can count thanks to facebook. 2. I am super proud of my kids. 3. I love Emily's work in her pageants...I enjoy talking about them and sharing her pictures. I enjoy dress shopping with her and showing those off. 4. Sometimes I get so wrapped up in work and my kids I forget to reach out to others but know I love you all the same! 5. I try not to judge you so please don't judge me. 6. I am picture obsessed. I love sharing them with people. 7. I am over sensitive a lot. I take things to heart if you say them or react in certain manners. It's just me so try to ignore that part of my personality :). 8. I am a HUGE nerd. So I am just me.......take me or leave me.

Anyway, just wanted to share those things. Jen out and glad to be home!;)

Thursday, June 13, 2013

A big huge SIGH (not of relief).

We are suppose to fly out to CA Saturday morning so what happens last night. Jude was rigid, didn't sleep well, and acted anxious. This morning his nurse said he had diminished lung sounds in his lower left we go again. Jude is not running any fever yet which is good. Charlotte also said his lower left lung opened up after the breathing treatment but it still "sounded different than the other lobes". So I put a call into the pulmonologist, but he cannot fit Jude in until Monday and even they said "Jude doesn't normally wait". So I had to put a call into his primary care giver and leave a message. If she cannot get him in they suggested urgent care again. However if we go to urgent care we are going to ask them to do the X ray and then conference with his pulmo to get the accurate medication dosage.

So what do we do? Do we go to CA overnight or do we stay and watch Jude to see what happens. I am not sure. My gut tells me if we get him in to be checked out he will be fine overnight until we get back. My gut also tells me if we are dealing with aspiration pneumonia for the 7th time...........well that's not good. Jude throws up even with the Nissen. We keep him upright. He is turned to his side after he eats. We has his elevated bed, wedges, compression therapy, vest, etc. It just happens.

I understand the process. I told a friend today that as I researched online I found this information

"If you continue to aspirate, you could have long-term inflammation of your lungs. This can cause you to get aspiration pneumonia again and again. Your lungs may slowly fail to pump enough oxygen into your blood. You could develop a blood infection called sepsis, or a lung abscess. This means part of your lung tissue begins to die. Any of the risks of aspiration pneumonia can be life-threatening."

They tested Jude for sepsis last time....which now makes sense. They understand that continued aspiration pneumonia causes other problems. I understand why they wouldn't relay this information to non medically educated moms. Reading things online or educating myself doesn't scare me. I don't panic or go into a shock mode. I simply understand it's the way our delicate human bodies are made and work. I think it helps me deal with finding the right treatment and future issues. Well that and faith.

So we will probably be hitting a clinic of some sort today just to insure he is alright.

Tuesday, June 11, 2013

It's ok to say no and all is okay

Jude is doing well. He threw up on Sunday night and sucked the throw up back down into his throat before we could race to suction it so we are looking for signs of aspiration pneumonia. However, so far he is nothing but smiles and long as mommy is holding him. He is still very vocal if I don't hold him. So we set an ortho appointment for Jude for July. His legs seem to be giving him some issues and we are going to find out what else we can do for him to alleviate the pain.

On the other side of life things are doing very well.  Emily's Smile Boxes is still sending out several packages a week. She is also planning her 5th anniversary party and it's growing rapidly. Mike's job is still well and so is mine. So for the most part our life mimicks something normal. We are enjoying it.

After my blog post that upset a reader I decided to re-evaluate things a bit in my life and I realized I had forgotten who I was a bit. I had not truly found my tongue for a long time.  I thought I had posted something really wrong and then I realized I just posted what I felt.......and that was OKAY! I didn't want to read anymore horrible tragic stories for awhile. These stories being sent to me were not associated to Emily's Smile Boxes, my personal blog, or anything else and it was truly okay to say I didn't need anymore additional stress. It's okay to say I try to teach my daughter that now that it's okay to say "I just cannot do that right now".  Sometimes we have to protect our own frame of mind and emotional well being.

I am feeling pretty rotten today. I think it's allergies, but whatever it is it's whipped my tail. I am ready for my bed. I think I will go home and take Jude into my room and flip on the TV.

Thursday, June 6, 2013

A vacation and a plea

I believe a huge issue special needs moms deal with is guilt. You feel guilty for what happened to your child, anything that continues to happen to your child, for going back to work, and for not paying enough attention to the rest of your family. I believe there is some form of guilt issues swirling around in every moms head, but it seems they triple with a child with special needs. I dealt with guilt issues when Emily was sick as a child, but it's even worse now. I am not sure why.... it just is. Maybe it's the understand that Jude's life is so fragile...but isn't every life?

Special needs moms feel like if they speak about the secret guilty wishes they have then everything could collapse. We should just be thankful when our lives mimic something in regards to "normal". If our child is healthy, our jobs our safe, and our family is well.........that's all that matters..right? It is and it should be!

However, I found myself missing private time with my husband. I miss being able to go off on intimate vacations, staying out late, and acting crazy. I held my breathe as I typed this because I would give everything including my life to just keep Jude with us.

However, I couldn't stop thinking about my incredible honeymoon with Mike. For the first time in a really long time I missed just being.............still. I missed laying on a bed with the ocean breeze streaming through the windows and not a worry. Then I snapped myself out of it and reminded myself I have a whole lot more than many other people do and to be very very grateful! I looked around at my nice house, my beautiful family, and I realized what's really important.

After receiving a message I decided to rewrite my last paragraph of this blog. Sometimes we mean our blogs to portray exactly what we are thinking at the time we write them and when reread that sound completely opposite of our thoughts. So let's try this again. Five years ago we found out Jude had a stroke and five years ago Emily started her charity. In those past five years we have received thousands of stories and requests for Emily's Smile Boxes. These stories are tragic, sad, and sometimes hard to read. Many times these stories have ended in the death of the children we send the boxes too. It can get overwhelming, but we signed up to do this. Emily can no longer read the stories with each request as they take an emotional toll on her. However, I read them and relay to her if she needs a box made for a boy or girl. However, over the past five years I have also had well meaning friends/family send me a lot of random struggles of people on the internet or acquaintances through facebook.  I know it's with good intent. They think because we struggle that we will want to see someone else struggle too, but that's not the case. It's different if people reach out to me through my blog or through the charity requesting a box. When you send us other stories without requests for boxes and just for us to read for the sake of reading it's just more sad stories on top of sad. Make sense? I guess my point was that I read a lot of blogs of friends we have that struggle. I see a lot of struggle everyday through the requests through the charity. I hear a lot of struggle through the emails I get through my blog. So rest assured I see these stories everyday and relate to them. I help others as much as I can, but sometimes all the stories take an emotional and physical toll. So if I don't know them, or they don't need a box, or you don't know them personally sometimes it might be okay to skip sending me one or two of the sad stories you run across. It might save me a few tears that day.