Thursday, July 28, 2011

Home sweet Home!!

Xander made his way back home to us on Tuesday July 26th. That Tuesday marked the one week after surgery. I am still amazed at how we were able to bring him home just one week after all of that. Can you even imagine that being you? Think about it really, if that were an adult most of us would probably just Ly there and beg to not be touched, but when it comes to a baby, child, or teenager they seriously show all of us adults up in the recovery department. Just goes to show that these little ones mean business..

Xander came home on .25 of oxygen and his NJ tube (yay for not bringing any other tubing home lol). I have to admit that the first 2 nights home were pretty rough. Xander has to get used to all of the new blood flow going from head to heart and is still healing from the chest and tubes incisions, so he has been a bot of a pill, but now things have started to level out and he is becoming himself again.

We have our post op visit on August 10th which also happens to be nick and I's 10 year anni. Would want to spend the day any other way to be honest. Xander will also be having another swallow test done on that day. We really need to start working hard on this now that we have a 3-5 year gap before the next surgery so that he can at least get away from the tube. We were told that we would not be able to do a G-tube like most kids are able to do, due to some underlining reasons that have happened in the 5 months he has been here. It could cause some serious problems for him.

Early intervention will now be coming to our home each month to work with Xander and help get him caught up developmentally. I'm thinking it wont take long to be honest but you never know with Mr. X since he has his own hidden agenda lol.

So Far now we are getting ready for the upcoming school year, football practices and dance run around. It definitely going to be a great Fall in the Waters house hold.

Monday, July 25, 2011

over the past few days

Well it has been some great days up here at the PCMC..

Xander graduated from the CICU on saturday afternoon and went on up to the CSU on the 3rd floor. You have NO IDEA how it felt to see our little one move from the CICU in just 4 days after spending 3.5 weeks in the CICU the first time around..

It truly amazes me on how strong these babies/kids are.

Xander is off of all of his meds (besides his normal everyday ones), all chest tubes are gone, his incision looks great and o my word he has more color to him and not just pale and blue..

Its been nice getting know more heart buddies and parents, to see how each child has a story that is similar to Xander's to not feel alone but to also help others cope along the way with their new journey. We definitely have found a new family to be apart of.

Thursday, July 21, 2011


You know it never gets easier being a heart mom or dad for that matter, but it does get more inspiring.

Xander went in for his 2nd OHS on Tuesday July 19th. The procedure that he had done this time around is called the Glenn. In basic terms they took one of the blood supplies from his head down to his PA which will allow him to get more blood supply though out his body but will give him some major pressure headaches for a few days.

He definitely looks pinker to us but he has been pretty pale for a while so its a great change to see for us..

However that afternoon after surgery Xander decided he was going to be the booger that he is and not do as the doctors and nurses wanted. They tried ti extubate him and with 30 minutes or so he was re-intubated.. This is not Xanders first rodeo of doing this i promise and the docs know this as well so they backed off and decided to just let xander as he always wishes and will let him rest for 48 hours. Yep he has mommies stubbornness and dads go with the flow.

Well our 48 hours were up today and of course Xander should much improvement so they decided he was telling them he was ready and sure enough out it came and he help his oxygen, he does need some high flow still but only because his right lung had collapsed during the first extubation but he is quickly coming off of that too and should be on regular oxygen by morning.

I must say that this surgery has so far been the easiest on me as mom. I did not have the worries as i did with the first, he is not has sedated as he was with the first. he was moving around with in 48 hours and smiling and cranky ( yep loved to hear him cry). This surgery has seriously helped me see and believe that life with the Glenn is going to be totally different and a lot better.

We have got to meet so many heart buddies this time around. We got to meet Nicole & Kyler (fontan), Abby and Michelle ( heart transplant), Amy and Abby ( fontan), Asher ( fontan), Have not been able to meet with Carman and Xander yet but will soon. It is so nice to have others around that are going through what we are and be able to talk to them and know that they know all of the feelings and not have to feel like we are the only ones.

Tuesday, July 12, 2011

Our heart Cath

Well Xander had his heart Cath and sedated Echo done Monday morning. Have to admit that the nerves took over my body the whole weekend and the week before but it all came out alright..

Our day started at 5am and they took him back at 7am. We were given a pager and were told that they would page us once everything was done.

As you can see we were a little sleep deprived that day and obviously the starbucks was just not workin for one of us lol.

At 11am Xander was done and we were able to see him once more but not before sitting done and talking with the doctor. Xander had a rocky start when they got him sedated. His states dropped into the 40's and heart rate went extremely low as well so they helped him along with that. Once they got him into the 60's they decided they would get started since that was as high as he would go at that moment. They are not able to enter through the left leg due to getting a blood clot from his first cath he had but then found out as they were entering the right that they are no longer able to go through the right anymore which left them having to go through the neck.

The pressure in his chest is a little high but nothing to concerning. They would like to see him in the 10-12 range for pressure but he is at 15 so really nothing to serious. So since we had a rocky start that decided to keep him over night just to observe him. It took him a few hours to get his stats back up to the 75-85% area, but he got it there.

We did have a a little trouble with him coming out of all the anesthetics ( cranky as all heck ), but he calmed down eventually.

This morning during rounds his surgeon, doctor Kaza came to visit and i have to admit it is such a relief not having to remind his surgeon of his name or even ours. he knows what city we live in and he actually has a normal no medical conversation with us about how we are doing our kids etc.

once rounds were over they got us out of there and off to our home we went. Its been a pretty quiet day today and lots of loving on him we have done.. Now on to the next week with his Glenn on Tuesday so in the meantime we are going to be doing lots of kissing, playing, holding, & tickling with him before it is taken away for a few weeks. Chapter 2 of his life is going to be even greater and even more rewarding.

Friday, July 1, 2011

The time has come and the date is set!

Well the time is here. I got the phone call last week from the cardi team at PCMC to set up the Xanders surgery date. I am not sure if this happens to all but when i looked down at my phone and saw the 801-662 # my heart started pounding and my hands started to shake, I knew that this phone call was for and did not want to answer it, but knew that it was time. I wanted to cry the whole time I was on the phone with the lady but i held it together until after i hung up. A lot of emotions go through you, Happy, nervous, scared, sick to the tummy, and just plain out MAD.

That night i watched Xander sleep, i watched him breathe, watched him flutter his eyes as he was dreaming and watched the cute little smiles he would get while having these dreams and I kept thinking to myself " Does he really have to go through this again?" and the stupid "What If's." I swear if i could take his place i would in an instant. Handing your baby over to a surgeon is never the easiest but when you know it is a must its even harder. Nothing is a promise but each day is a gift and i will take those gifts everyday!!

Xander will be having his heart cath & Eco sedation on July 11th. This will be a 3-4 hour procedure but will allow them to see and know what they need to know or do to help for his surgery!

On July 19th Nick & I will be handing over Xander to his surgeon Doctor Kaza to mend Xander's heart for the 2nd time. The procedure that he will be doing this time is called the "Glenn". It will allow Xanders heart to have less pressure this time around and "should" be able to keep up with him until he is between 3-5 years of age and then at that point the next surgery will happen.

We are blessed to have Doctor Kaza as our surgeon and it helps knowing that he loves these babies to no end.

So with all of this coming up we have been told to have some family outings, so we will be spending the 4th with family and watching Xander's facial expressions as the fireworks go off and enjoying the time we have with him home until the big day, but there will be more to come after as well!!