Only thinking of the positive

Jaxson is super junky and coughing like crazy. It doesn't seem like he's sick, unfortunately, with a trach, I can't identify the cough. It all sounds the same through a trach, I can't say its croupy, or junky. Its the coughing, nonstop coughing, which he does from time to time, because his trachea collapses even around his trach, causing him to cough uncontrollably. We tried custom making him longer trachs, then we tried moving his trach up a size, to try and push his airway open. The last try was to give him lidocaine in a neb, numbing his airway, and stopping the coughing. I never got that prescription because the coughing never got that bad for more than a day. Now it has been 3 days, and I can't get anyone to give me this prescription. Our trach/vent RT is the one that mentioned it, she is out until June 6. ENT won't write the prescription without talking to her first. Grrrrrr!!

So as I sat down to post today, nothing came to mind. Nothing good, that is. I didn't have anything to post about our weekend. Daddy wasn't here, and it was freezing and pouring all weekend. We sat at home and watched the rain. Still fighting with the IRS for our money. Real estate agent informed me that house's were selling even lower than I thought! I'm tired of posting negative, whiny posts, which seem to be our days right now. I think everyone agree's, seeing my lack of friends lately! I wouldn't want to be around me either!

But then, this afternoon, both little's were asleep at the same time. Unheard of! I was going through some stuff, trying to box up and de-clutter, and I came across a huge binder that had some of Jaxsons medical records from a long PICU stay. I sat down and starting reading. This was our longest PICU stay, 4 months, and definitely the scariest! As I'm reading PICU attending notes, cardiology notes, and nurses notes, I started to realize something.

I don't have any reason to be negative about life....I have my little boy. He is here, he is home, and he is a miracle!
During that one stay, he had 4 major surgeries (heart cath, 2 closed heart surgeries, one open heart surgery), over 150 chest x-rays, over 200 procedures, and almost 50 CT's and MRI's. Its eye opening when you can physically read what the intensivists are writing about your baby. A small piece, "This is a 6 month old, extremely critically ill baby boy with Trisomy 21. He continues have congestive heart failure and respiratory failure. I feel he will need yet another transfusion of packed red blood cells, and will need to remain mechanically ventilated for an unknown amount of time."
Wow!
Jax is my hero, he is amazing, and he is mine!

So from now on, no matter how long our downward trend in luck continues, I'm going to say one positive thing every day, and I'm changing my negative attitude now!!
Today, I just think of my miracle baby, and how lucky I am that I can still hold him, and smell him (oh he has the best smell!) and kiss all over him!!!

Sleep apnea and Down syndrome

I decided to do a post on this since it seems to me like its being overlooked by a lot of doctors. We had a discussion on our yahoo group of local DS families, and me and Heather were telling all of these newer moms how important sleep studies are in our children.
Bottom line..EVERY DOWN SYNDROME CHILD NEEDS A BASELINE SLEEP STUDY!

One of the first things we did with Arina when we got her home, along with all her blood tests and echo's, was a sleep study. Arina has no symptoms of apnea. She doesn't snore, and she sleeps like an angel from 8pm to 7am. Without so much as a sound from her!
Still, her sleep study showed obstructive sleep apnea. And multiple times a night her sats drop into the low 80's.
She had her tonsils and adenoids out, and is supposed to be on oxygen at night. Getting her to leave it in her nose is impossible, so we make an oxygen tent out of her crib, and that works just fine!

Its just a part of our sweet children's anatomy. Along with those gorgeous almond eyes, they have large tongues, and tiny airways. This adds up to sleep apnea. I am seeing a lot of friends that have their peds, and even ENT's say that, because their child doesn't snore, they don't need a sleep study.
Wrong! If your doctor says your child doesn't need a sleep study, you need to insist that they do. The best thing to do is go see a sleep specialist, usually also a pulmonologist. I guarantee that they will agree with you. There is no age that you should do a sleep study. Arina was 13 months, but we probably would have had one sooner if she was home. If you wait until they are 3 or 4, they could already be developing signs of pulmonary hypertension.
And you should also have follow up sleep studies every few years, because they can change.

Our sweet friend Max, his sleep apnea is worse than Arina's! But his doctor said he didn't need a sleep study because he didn't snore. I'm just glad that we discussed this and he had one done! I haven't met a DS friend yet, that doesn't have some form of sleep apnea!

There are even DS kids that have OSA so bad that they have to have a trach. Now Jax trach wasn't strickly because of OSA, he had a lot of other factors, but I took care of a lot of DS kids that had trachs because of apnea. My first patient after returning to work after having Jax was a 6 year old DS boy with a trach.

Please please please! If your DS child hasn't had a sleep study, get one scheduled today!

The small things

In our house, we celebrate the smallest of things.
All it takes is a smile to thrill a big brother like they just won the lottery!

Kisses from a princess

You'll see I added a donation button to the side of our blog. I had someone ask me in the Q & A at the top of the blog, about a donation button for Jaxson's medical costs. It was clear back in January, when we found out that Jaxson would not be put on the waiver. As you know Jaxson's medical costs are outrageous! Every piece of equipment he uses is rented monthly. A couple items we now own, which I'm not sure if that's a good thing, since if it breaks, it is our responsibility to fix it! His formula alone is 1200 a month. Prescriptions I'm not sure of right now, since we recently found out non-generic meds went up considerably! And no inhaler or neb is generic.
I also recently found out that he was denied a medical bed. Of course I'm extremely frustrated at this. I especially love how the reason is "not medically necessary". How can it possibly not be medically necessary? The kid has every medical diagnosis there is! It makes me frustrated because I see kids that are basically healthy, with maybe a g-tube, that get this bed. It just always seems like my poor man falls through the cracks every time. Of course this bed is extremely expensive. I'm not even sure of the total cost yet, maybe because I'm too afraid to look!

I stole daddy's camera. I'm tired of not having a camera to capture my beauties! Arina is finally getting better, although she still has a nasty cough, and bears the scars of a constantly wiped nose, and tender grips on the face! The only one in the house that hasn't been affected yet is the most vulnerable, mister Jaxson. Although he woke up with goopy eyes, which is how Arina's started!

The princess is really into giving kisses lately. That is, if she's not busy watching Playhouse Disney.....

clapping wildly at Handy Manny! (yes, we finally got the girl to clap, another new skill!)

And of course, her Jaxson is her favorite one to kiss.

The poor kid is constantly covered in big, slobbery, kisses

Although I don't think he minds much, he loves having his sister to entertain him!

I mean, who wouldn't want slobbery, french kisses from this blue-eyed beauty!!

Goodbye to our beloved Dr. Hawkins

It seems in this world of medically fragile/special needs, and constant hospitals, there is a lot of heartbreak. And it seems like our hearts are heavy much of the time.
We lost our beloved cardiac surgeon yesterday. Even though I knew it was coming, it doesn't make it any easier. He was diagnosed with pancreatic cancer two years ago, and given only 3 months. I'm so glad he lived for two years, because I know his family made a lot of memories, and took a lot of trips in that two years.Knowing this man had his hand on my sons, walnut sized heart, makes me forever grateful for his skills. Everyone feels indebted to their surgeon, ours goes much farther than that.
I used to work with this man before I ever had Jax. He was the head of the department, the surgeon that did all the complicated cases. He would sit by a childs bedside for hours if they weren't doing well. He wrote a letter to the nurses on our unit, after a couple nurses spotted a potentially life threatening problem, that sent a kid back to the OR in the middle of the night. He wrote how the nurses are the key to recovery, and how they are his eyes. What surgeon would take the time to write that?
And then, as Jax lay in the PICU, intubated, for 3 months, as we fought with the cardiologists about getting his heart repaired. We got the run-around...the schedule was full, and then he would get an infection and surgery had to be postponed, again. Then after they severely damaged my sons brain, I demanded a care conference, and I demanded that Dr. Hawkins be there. I knew he was the best, and I knew he was compassionate. Dr. Hawkins didn't even know that Jax was in the PICU, and that he so desperately needed his heart fixed. He promised me he would fix it, and that he was taking over Jaxson's care. In the next 3 weeks, Dr. Hawkins had done two surgeries on Jax, and he was finally extubated with success!
Everytime I look at Jax chest x-ray, I will think of Dr. Hawkins. In one surgery, he was trying to stop leaking chylus fluid in his chest, but we didn't know where it was coming from, so he just stapled every lymph. Seriously, it looks like someone went crazy with the staple gun in his chest! I smile everytime I see it!

I saw Dr. Hawkins last February, as Jax was being discharged from the PICU. He was in the hall, and he looked good. He didn't look sick, and he was with his daughter. Even though he retired as soon as he got the diagnosis, he was frequently at the hospital, teaching and giving lectures. He looked at me and Jax like he recognized us, even though it had been two years since we'd seen him. I kick myself now for not saying something, telling him thank you, and telling him how fantastic he was!
Its not fair, not fair for a man so great, to be cut so short, I can only guess that he is having joyous reunions with the children he lost, that he fought so hard to save!
We love you Dr. Hawkins, the hundreds of children, and children that are now adults, that are here because of you!


A little happier note, here are some pictures I just got in the mail from Disney. One thing when you go to Disney with Make a wish, you get a card for pictures. You know the people with the cameras, that take your picture and give you a card to buy them? This card we hand to the photographers, they take the picture, and we get a free CD with all the pictures. We took full advantage of that, and had pictures taken everywhere!

Animal Kingdom

Epcot center

Magic Kingdom






More Epcot

Hollywood Studios

snot, seizures, and stress.. oh my!

This is why I always put a onesie on Jax. I even have tank top onesies I put on in the summer time. But it was so dreadfully hot in Florida, that I left the onesies off. That lasted two days! He can get to his tube, and causes major problems. Stinker!

The cold is slowly making its way through the house. The only one not affected yet is Jax. How can that be? I have no idea! Arina is doing ok, still having fevers and still oozing snot. She did need oxygen last night when she was asleep, but she's fine during the day.

I took Jax to neurosurgery yesterday to discuss surgery for the VNS. Right now surgery is set for July 12. As soon as my insurance approves it, I'm going to try and move the date up. The surgeon asked me if I'd heard anything about it. I told him I'd watched a DVD, and if I knew it was this easy, I would have asked for it a long time ago! He laughed and said that its not quite that simple, especially for Jax. He does think its the best option for him right now. He is concerned about the incision on the neck. DS kids have generally short necks, that combined with trach ties, and puffiness, makes it extremely difficult to find a place to make the incision. He said we'll leave the dressing on that site until it is totally healed, to protect it from the trach ties. He's also more worried about infection at that incision site, and also the fact that he's on blood thinners. Jax will stay at least overnight, for that reason, and also because he usually requires the vent for a while after surgeries. Which is not a big deal with a trach, but has earned him at least one night in the PICU after surgery. I'm hoping its only one night, but Jax doesn't have a good track record with surgeries! I want the surgery done quick, Jax is having more and more seizures, and they are lasting longer. Last night he was up to 4 minutes on a seizure. I was dusting off my diastat when he finally fell asleep. I've never seen him fall asleep before the seizure even ends.

Still no news on our adoption tax credit. I joke with Ray that we adopted at the wrong time! And also joke about..is there such thing as post adoption fund raising?! When we adopted, we raised maybe 4,000 out of the 24,000 we spent. Right now people are making 15,000 on one fundraiser! Its crazy! What has put us behind is Ray didn't get the short term disability we were promised for his time off. So he got payed for one week out of the six he took off. We also knew that we would be getting 13,000 for the adoption tax credit. Little did we know that the government was going to be so crazy about getting people their money.
Was international adoption the wrong thing to do? I look at Arina and know what her life would be if we hadn't rescued her. And we love her so much! You know that Andrea with Reece's Rainbow always says..."there's not a shortage of families, just a shortage of money." How true is that??
I think we are just questioning so much right now because we are so strapped. Ray still thinks he should come home and forget about the move right now. Having him here won't help the financial issue, although we wouldn't have to pay for him to come home. I really hate to do that, this move is what we've wanted for 13 years. But we haven't seen daddy in over a week, and as it looks right now, not this weekend either.
I really wish the answers would just fall out of the sky and hit me on the head. Although I know that's wishful thinking, and it just isn't that easy!

The rest of Make a Wish

We have a yucky respiratory bug making its way through the house. I like to believe it was going from 80 to 40, a major shock to the system! Arina has it the worst so far, oozing green boogies from every orifice! Her sats have been beautiful, oh how weird it is to have healthy lungs! I'm terrified for Jax, because Arina was loving all over him, so he's bound to end up with this crap soon!
This is a post with a billion pictures. I put the rest of our trip up, because I don't want to do 10 posts of the trip. I left the pics small, to get more in. If you don't want to look at all the pics, thats fine. Its more for me, as this blog is my scrapbook!

Day two, Seaworld!



Flamingo's walking down the street!


Cooling off, it was about 90 that day!


I was so bummed that Jax slept right through feeding the dolphins.


Later that night, at GKTW. There is so much to do there, you don't even need the parks!



Mayor Clinton, and his wife are the mascots of GKTW. This night they were having a Christmas party. They do it once a week!
Arina LOVED the slide!

Day 3, Magic Kingdom and Epcot.
There it is, far across the lake!




Day 4, morning at GKTW, Universal in the afternoon.

Look, thats my baby boy riding a horse! Nowhere but GKTW would he be able to do that!


Doing Jax star, that will stay in GKTW forever!





Universal




Day 5, Animal Kingdom and Magic Kingdom.
Didn't really get any pics at Animal Kingdom. Oh well!


Our last day, we sneaked out to Kennedy Space Center before we had to catch our plane. I was so bummed because Mondo really wanted to go, and we didn't even have time to take the tour out to see the shuttle on the launchpad. Grrrr! Thats a once in a lifetime thing, since the shuttle had been delayed due to technical problems.
We'll definitely have to get back there for him.




Momma taking her Valium for the plane ride home!

Little miss slept the whole way home!

We can go back and visit GKTW anytime we want to. We plan on taking an RV trip down there in the next year or so. We are going to volunteer at GKTW. Almost everything that happens there is from the work of volunteers, even kids can volunteer! So if you want a project, and you live in Florida or can go down there, that would be a great one!
We met some really great families while there. I really miss it. It was a once in a lifetime opportunity for our family!