WE ARE HOME !!

We finally got out of the hospital on Wednesday afternoon ..woohoo ! I think Sebastian was unsure of what was going on , he had a strange look his face and we headed out to the car. Once we got there and was in the process of unloading I made the mistake of trying to put him in his car seat, lol. He wanted to ride around some in the hospital's red wagon more so we did a quick lap in the parking garage and then had a car seat battle.

Once we were in the car and headed to the store to pick up some meds he needed Sebastian kept looking around like he was amazed at everything, just soaking it all in. We let him run around a bit at the store, grabbed our goodies and headed home. He was so happy to be back , it looked like hurricane Sebastian hit his room !

That evening when I laid him in bed he patted the huge multicolored stuffed alligator he sleeps as a pillow, smiled and said "bed","lay down" "me bed" and about 15 minutes later he was draped over the alligator fast asleep.

Since then it has been kinda of strainded getting back into the groove of daily living. Sebastian is having trouble at bedtime and has woke up saying "no stick" and "go away" throughout the night. While the 'roid rage has subsided there are still some ugly behavior to shake out , epecailly these little tantrums that have intensivifed , that are pretty minor in nature ( loud whining,getting stiff and arching back,trashing and trying to sit down)but with him weighing in at nearly 40 pounds it is getting harder to force him into the cart or the car seat without a weight lifter's belt ! He has quit banging his head but I have had to pull his fingers away from his eyes on couple ocassions , nothing too bad.

Sebastian has come on on Zyvox, which is a absolute battle to get him to 3 times a day , but it is slightly scarey because in conjunction with the albuterol he takes can cause dangerous levels of high blood pressure. He took at the hosptial with no trouble and yesterday at a ped follow up his blood pressure was fine so , so far so good !

During his stay Sebastian's speech has progressed and now he is saying more things than ever , even his own little jokes from time to time, silly monkey ! He is finally getting to were he can tell us what is going on in that little head of his - we are in trouble now !!

Super quick update

We have been in four days now. Sebastian is off the IV fluids and officially diagnosed with MRSA, which he been colonised with since forever, now it is rearing it's ugly head. He is on 2 steroids, breathing treatments every 4 hours (bumped down from every three hours this morning), benadryl and an IV antibiotic that runs over a two hour course every since hours (increased from every seven hours yesterday)

He has 4 different IVs now and hopefully/most likely placing a PICC line tomorrow. The most recent one to go was on his left bicep which infiltrated. We have no ideal how long the vancomycin leaked under his skin but is it pretty swollen and bruised , you can tell it hurts a lot more then he is telling us. I'm keeping my fingers crossed on no tissue damage, which everyone says there should none of but after reading a bit on the topic I am nervous.

Yesterday was a bad, ugly day. Between all the medications, treatments, vitals, repeated sticking and just plain coughing his head off the kid couldn't get any quality sleep and was fatigued. He finally passed out and his sats stayed in the high 80's - low 90's and this was on 40% oxygen which was really scary. We bumped it up to 50% and he rose to around 94 or so then eventually climbed upwards in time.
He was just so tired he couldn't even cough effectively enough to clear his airway.

Since he has MRSA was Sebastian isn't allowed outside his room and it is so tiny that when I fold out the recliner at night it completely blocks off the bathroom door one way and if it slides downwards a few inches it blocks the entrance. I would say it is easily about half the size of a normal hospital room. Needless to say we are all going stir crazy - especially the kid.

I am feeling bad for Sebastian, not only is he sick , he is getting traumatised as well. As soon as someone walks in the door with that yellow gown on he starts to meltdown , since we are in isolation that means everyone but us wear a yellow gown and gloves. Today he is starting to back up into the corner behind the door crying 'no,no,no,no" when ever some comes in. Even breathing treatments and trach care have become serious fights. He spends most of his time (unstandable) upset and this morning I saw his moving around in his bed while sleeping saying "no,no" while grabbing at his IV site. If a staff member is in the room and one of us pick him up he goes ballistic because he thinks something is about to happen , which , unfortunately is more often true then not.

Sebastian in Hospital

At the pulmonology follow-up today (that would still be Thursday for me since I have yet to be to bed) the DR expressed concerns that the bacteria has done a number on the kid and now the word pneumonia is now being thrown around. They do not believe he has it per say , just at a super duper high risk for it.

Sebastian has now be admitted to hospital for IV steroids and antibiotics, they expect us to be here for at least the weekend.

He is not a happy little guy, this whole thing is very confusing and scary for him , the last time he was in the hospital was last November for a capping trial and that is a completely different ballgame. Despite it all he is trying his best to be a good boy - he is even keeping his hand off his IV site for the most part, with gentle reminders of " Only nurses touch the IV" , lol.

I will try my best to keep everyone updated, the internet connectivity is kinda hit and miss here.

Good night all !

9-25-06 to 8-21-08

Tonight one of Sebastian's trach buddies lost his battle with his congenital heart defects. His mother and I have became close over time and it feels as if we have lost a member of our own family. Please pray for his family during this time.

A trip to the ER

Sorry I have been neglecting the blog but as most of you know anyways Sebastian has been ill.

This afternoon , within minutes of beginning physical therapy we had to call it quits. We noticed he was breathing loudly and retracting , after putting the pulse ox on him we discovered his heart rate was hitting 177 and his O2 level was at 93%, in a nutshell not so great. After a bit of debating we put a call in to the pulmonolist who gave us an appointment for later in the week. We tried everything in our arsenal and we that just didn't work we headed to the ER.
At the ER we were quickly passed through reception , flew through triage and put in an ER room where we spent the next five hours or so with a very angry , hungry, thirsty little boy in the dire need of a nice long nap. We spoke to countless people, had a chest x-ray (all clear) and they attempted to do a sputum culture on him but couldn't get enough to really test.

After all the miserable waiting we were sent home with yet another antibiotic and told to follow up with the pulm this week.

It is so frustrating to see your kid sick and obviously to you getting more ill, not have a clue what it is or how to fix it.

For now we are having to sit on our hands and watch and wait.....