The day after......

A 24 hour flu bug infested our house. We are SO glad it came and has now exited( hopefully) Yep, people get sick. Yep, its most likely the flu for "those" people but for us we are on the edge of our seats. When do we freak out totally and run him to the ER for CT scans, fluids and possible surgery, OR do we sit and wait and wait and wait and then wake up all fine. Or wake up all NOT fine and the above surgery comes into play.

I realize to some that the stomach bug wouldn't cause this much anxiety. It is just some vomit. But I can honestly say after the 2 shunt revision we last experienced, those little vomits in a shunt baby is what the docs call " impressive and better then projectile vomit" it is so impressive It literally will span my entire bed. Mostly because the force they are puking from is from so much head pressure a person could NEVER understand ( even myself) They are literally trying to relieve the pressure they feel in their brains.

After a vomiting episode Ty will lethargically lay there for a while. Literally, lay there. This is where my next *key* point comes into play for checking shunt function. While he is laying how bad are his eyes moving? How fast? Can he focus on ONE object? Can his eyes hold still long enough to not be worrisome. Tyler has a condition called nystagmus. His eyes always move. Constantly moving. Jerking even. The link has a eye that is like Tylers. His moves a lot fast but the idea is the same. Tyler does have periods where his eyes are VERY still. But a shunt malfunction is not one of them. AND a really bad sickness makes his eyes very bad. But I have seen his eyes both ways and I can tell a difference between head pressure and flu pressure. His eyes were not bad yesterday.

We got him to sleep pretty early for him and he did really well till about midnight when he was restless. I thought more puking would instill but it didn't. At around 3 am he woke up and said he was all done ( signing this at 3 am) and he wanted food and a drink. I got him his drink, and offered crackers. And a laptop did wonders for movies. HOORAY!

He was up from 3-5 snacking on crackers, drinking and watching movies to which I finally switched OFF the computer and put him back to sleep. Which we did sleep. Till around 9:45. It was the longest I have seen him sleep in a WHILE. It was not totally rest full to me because he has to sleep touching me and I really needed to roll over :)

Today we pretty much had our kid back. He was jumping on trampolines, throwing numbers and letters, watching Barney and being bored. And no throwing up.

So YES we are thinking bug.

Yes we can over react but I think it is understandable. We have learned to go through our "chain" of commands.

Ty is sick what do WE do:

Call Dr. Marisa, see what they suggest. After asking and answering a few questions from them they will tell me what they "think." Yesterdays was Nancy, if you think that he is broken you will know in a few hours ( its to early to tell either way) take him to PCMC. Call me. We will get things goings if needed. Thanks for not freaking out!( though I think we freak her out sometimes)

Lay there with him. Hug him and love on him. If it is a sickness dang that stinks. If it is a shunt he needs to know that we LOVE him soo much and that we will fix it and as he gets sicker and more pressing to get to the ER, we need to be close to monitor for seizures and those pesky heart rate drops.

And last but not least:

Get a blessing. At the end of the day that was what put him to sleep. A simple and powerful blessing from his dad. Ty had his eyes closed the whole time and opened them simply to say amen.

We love him and hope to make it to Feb. where we reach our one year with a shunt. We can do it. But above all we move on and keep going. Monday we go back to our routine.. a little skinnier and a little more weak but full force forward.

The ultimate blog party 2009

I was trying to decide if I should participate or not in the UBP 2009 and after reading a few I really thought it might be really fun to get to know more people.

So, here goes my intro post. I hope that you browse the archives and come back often.

I am a 28 year old mommy of one. I am married to the love of my life for almost 4 years. He is a senior web developer for Paypal. Two years ago when we were offered the job we were moved to Arizona where we currently live.

I blog about our live as we live it. Our son is the main focus of our blog. Tyler was born at 25 weeks and 3 days gestation. ( He was 15 weeks early) He was 1 lb 11 ounces. He spent the first 3 months of his life in the NICU.

His premature delivery has had a huge impact on all of us. Shortly after birth he suffered from a brain hemorrhage. He has had a heart condition repaired. He developed hydrocephalus due to his brain hemorrhage that has left him with a shunt. He also has ROP an eye condition that causes the retina to detach from his eyes. He developed nystagmus, or fast movement of his eyes. He has also had 2 skull surgeries to correct his craniosynostosis.

Now that he is 3 we deal with a myriad of issues. He was diagnosed with Cerebral palsy, he has low vision and he has a shunt in his brain. He attends school and loves music. He is happy and smart.

He still gets all kinds of therapy and has very limited speech. In the last year he has undergone 2 emergency shunt revisions. He is a trooper and such a strong little boy. He is very determined and makes us smile every single day. He is the best thing that has happened to us. Being a mom is the most rewarding thing that I have ever done. Being his mom is the most amazing thing I have ever done. Having a support system like his dad around is one of the best part of this journey.

We have seen a million miracles. We plan to see a million more.

All Because Miracles Happen






* Please go on over to UBP 2009 and take a look at all the amazing mommy bloggers out there. Try and look over all the prizes ( like that gift certificate for target.) There are to many to name but go and see for your self.*

Yes, he is ok!

Whenever there is a surgery and his little brain is involved I always wonder about what personality changes or "damage" is or has been done. If this is the time that we will see a change in personality.

Well, to put every one's worries at ease... Ty is doing great.

Here are some photos of the last few days. It is easier viewed than to find words.

This is Ty the morning after we got home. He had a good night in his own bed and woke up a little sore but happy. I love his face!

We have found him on the couch a lot. He is a monkey and climbs up on it. But he does sit down and just hang. It is so cute to come in on him just sitting and singing.

After we got home from Therapy today Ty was in singing songs with his dad. Seriously, how could you not fall in love with this face.

He has not let that balloon out of his site He loves it.

What kid doesn't love Thomas. Though he doesn't love him as much as Barney, Thomas is a new fixture in our house.

Even Thomas needs kisses.

A few exciting things that we have noticed. First is his eating. He has increased his appetite ten fold. it has slowed down a lot but when he is hungry he is HUNGRY right now. Just like he was a baby. Like zero to STARVING.

Second, is his babbling and signing. Ty signed sleep and pointed to a blanket in Dallas car today when he was upset. He pointed to the store we were at and signed food. He ate when we got in there as well. He babbles all day and he sings so much. Meaning he actually tries and mimics the sounds that they make and if he can't get them just right he makes sounds that sound like the sound. ( that is a lot of the word sound.. but it I hope it makes sense.)

We are very proud of him and very proud of how brave he is.

Honestly, Miracles Happen....

Home Again!

I am amazed at how quickly Ty bounces back after one of these things. I do have to say this one is a little more involved in his tummy so he is not walking to hot. He walks like an old man really.

OK so here is the run down at the hospital.

Ty got sick, puked a bunch of times. We got to the hospital and got right back because of the fact we "thought" it might be his shunt. We immediately got back to get some CT scans ( immediately means 2 hours) and the doc in the ER thought is was probably just his lungs.

The scans came back with an enlarged ventricle. They sent us for an xray of his tummy which showed his tubing. The tubing had broken at some point and the bottom of the tubing, at some point, had stopped allowing it to drain.

As soon as the radiologist saw the broken tube our neurosurgeon was called and he came in. I headed home to grab the things I would need to sleep over and Dallas did the waiting. I got there after they had taken him in to surgery.

We talked with Dr. Elton after the surgery and waited to go back to recovery where we were met with a very very mad little dude. I didn't hold him in recovery just because of the extensive stuff done on his tummy.

So the medical part. The tubing had fallen to his tummy and they were not able to get it out without risk so they left it in. They shouldn't pose to much of a risk ( but this is Tyler) and we will get an ex ray of them in 2 weeks to check out where it all is. Because they were poking in his tummy it is VERY VERY sore.

He slept pretty good and was doing really well last night. After being up and down for a few hours this morning I finally asked them for some morphine. They gave it to him and he slept soundly for a few hours. Mom was awoke by all types of people needing to verify who they were touching ( even if I had been there all night and it was their 3rd time in )

He is up and moving ( slowly) tonight and we are so proud of him. He is eating, holding it down, dancing, jabbering and almost back to Tyler. He wants to walk but he is pretty sore so we hope it heals fast.

So the new and fixed (again) Tyler .

This is his head scar. He has it in the same place as his Craniosynostosis scar.

Showing his happy face and his leads. He has a hard time letting them take any tape off at the hospital. He screams. Instead we just bring him home and shower him and take them off Pain free.

Sporting the new dew. He just had it cut all cute and short. Now it is gone. There is not a bit of it left.

His new tummy scar. It isn't as bad as some of his others. It is not in the same place as his old one because there was already some scar tissue and it would have wrecked havoc on his bowels. (Thank goodness for small miracles when it comes to his neurosurgeon)

Him happy in his chair at home with mom and dad.I can't wait to get my house back in order and cleaned.

Ty sporting his Thomas balloon that we went and got at the gift shop. He deserved so much more than a balloon but he loves it.

In the end I am so grateful we went in. That we listened to that voice and anxiety that was there. I wish a million times over I was just over reacting. He is a miracle and we love him and we will keep hoping for more miracles.

Thank you to those who offered support by calling and texting. You are amazing.

Starting the new normal

For any family who has a chronically ill child or a child with special needs it takes a lot out of you to enter the hospital and then leave and pick up where you left off. ( I am sure it is the same for the "typical" parent it just doesn't happen as often. As your child gets sick you slip into COPE mood and wait for the cope mode to subside and you find your grove in to what is "normal."

Hind sight for this malfunction was definitely 20/20. Shunt malfunctions have the same "symptoms" as typical toddler behavior, but we have definitely been able to see where that typical behavior was not so "typical" and ended us were it did.

Shunt failure symptoms include:

1. Change in appetite.
   
2. irritability
3. fussiness
4. sleep problems
5. vomiting
6. More clumsy
   
7. headache

All of the symptoms are things that a typical kid could go through at any given time. We thought his appetite change was that he had stopped going through a growth spurt. He was not to irritable but was definitely not as "happy " all the time. He has always had sleep problems and the clumsy part. Well he definitely isn't' NOT clumsy.

Looking back there is so much that I noticed but by itself there is no indication for issues. Together ... Alarm.

So now that we have Tyler back and he is new AND improved and keeps going longer and longer we start the new normal. Me and Dallas are slipping out of cope mode and into extremely tired and stressed parents. Tyler, in the mean time, just wants to play and play and play.

The next week is nothing but appointments after appointments to find this cute kid's new baseline.

I feel so lucky that we get to have him back. I hate thinking of how close I was to losing my sweet little man. He is very much a miracle.