Monday, February 28, 2011

PICC line in place

Xander's PICC line was placed this morning and all went well with it. he is such a trooper for sure. holding him tonight i just sat there and talked to him as he stared up at me and he would smile at me from time to time. Just being able to have him in my arms calms me but to be able to actually hold him and talk to him and see that cute smile of his makes my heart just pound with happiness that he is here with us and that he is doing so well. He is healing so wonderfully and showing all how strong he is. We are starting to be taught all of the things we need to know before having him come home so that we know what to look for and how to truly care for this delicate package. It'll be great to have him home but at the same time i dont want to rush it ether. Nick brought his swing up tonight so that the nurses could put him in it so that he is just not laying in his little bed all the time. So we will see how he does with this contraption lol.

Sunday, February 27, 2011

Ready to be done

Xander is starting to get even fiester as the days go by. Today he decided he was going to through a tantrum just because he could, dang little man is already acting like his daddy LOL more like his mommy really but SSSSHHHHH! He will be going in at 8am tomorrow morning to have his PICC put in, then from there we will start the swallow test this week and carseat test as well, so hopefully next week he will be home instead of this wednesday. Ready for him to be home and I am ready to have my full family home and together!

Saturday, February 26, 2011

Almost time!

Xander was moved out of the ICU today and up to the childrens surgical unit YAY!!  He is starting to suck on his pacifiers more and more each day which is great. It has been a long 2 days for nick and I since we have had sick kids at home and would not go up there to bring him more germs to possible make him sick, but it was a great day to go up to see him out of the ICU and to also see that all of his bandages had been taken off of his chest. His chest looks amazing. Nick and I really were expecting to see him with this really massive wound from his open heart surgery but WOW it so was not that way it looks amazing. On Monday they will be placing a PICC up through the back of his leg to help give him his antibiotics and to be able to draw blood with out having to poke at him all the time and let me tell you i am definitely ok with that since i myself got to witness the drawing of the blood tonight and how hard it is for them to do it on him since his little veins have already been through so much it just put me into tears to see him cry the way he did. His nurse told us tonight as well that with them putting the PICC line in we more than likely will go home with him this week and have a home health care nurse come in to make sure all is well. Fingers crossed on that!!!

Little tiny set back

Xander is making great progress, we had a little set back from being moved out of the ICU this week due to a 102.2 fever. The tested Xander for RSV, UTI, & a blood stream infection. AS of Thursday night we were told that the rapid RSV test result was negative. On Friday morning we were told that his blood test came back positive for the blood stream infection, which they are saying was cause by the ARTline that was in his right arm that they had taken out that day. They had already started him on antibiotics the day prior as precaution which has helped get rid of the fever and his heart rate to come back down to where it needs to be. Nick and i have not seen Xander since Wednesday night and it has been really hard, but Trever and Anthani became sick and we did not want to bring any germs up there with us to spread to him. Xander is being spoiled by the nurses that take care of  him during the day and night. They just love to hold him, which makes it a little easier not being able to be up there with him knowing that he is still being held and loved on.

Wednesday, February 23, 2011

Over the last few days

Well i know i have missed a few days on posting updates about Xander so i do apologize for that. Well since the last post we have had some exciting things happen. On Monday Xander was taken off all of his meds but one which is for the blood clot in his leg we get to hold him everyday now and with the ventilator out he is able to make little squeaky sounds when he tries to cry that have now turned into stronger crying sounds as the days have gone by. On Tuesday Xander was taken off of his blood clot med, but will go back on it but will have shots instead of it going through his art line, only because come tomorrow morning they are taking that ARTline out. We were told tonight that don't be surprised if they move him out of the ICU tomorrow sometime and upstairs YAY!! I was able to hold Xander tonight up against my chest, O how I have missed being able to do that over these past few weeks. With today being his 3 week birthday i look at him and just smile with joy that we were chosen for this most wonderful delicate gift of all. He is also starting to learn how to suck on his pacifier that they have given him just to test how he will do on the swallow test come this next week. I feel that we are going to do just fine on this but i am sure we will have an NJ tube ( feeding tube) when we come home for a bit only so that his vocal cords can get stronger.O yes the most exciting news for this week is that Xander had his stitches removed on Monday as well, few more weeks and we will be home with him.

Sunday, February 20, 2011

Big Milestone!!

Today was a very exciting day for not only us but for Xander too. Nick and I arrived at the hospital earlier today and found that they had taken the ventilator out of Xanders throat and he only had the little nose hose now, they also took out his tubes that went into his chest up to his heart to help with the drainage. As you can only imagine we were very excited about this and very proud of our little monkey on how strong he is and how determined he is to get better. Today marked the 2 week anniversary of  the last time we got to hold our little man and it was a great 2 week anniversary to say the least because we got to hold him again!! Our next goals for this next week are to get him off of his blood pressure medicine altogether which they are hoping to have him off of that by tomorrow morning and then to get him off of 2 other medicines as well. They will also start doing a swallow test as well to see if Xander will be able to eat on his own or if he will need to have a feeding tube for a while. Once we can get these done we will move on up out of the ICU  and to the 3rd floor which at that point we KNOW that we will be able to go home with him shortly after that move.. All we can do is take each day one by one and pray that we stay on this strong road of recovery and allow Xander to show us how strong he is and when he is ready to go home.

Saturday, February 19, 2011

Great day!

Xander is getting better and better each day, Today we had some great things happen. Xander was taken off of is Lasiks medicine. The day before they took his cathador out and they also took out one of his tubes that was going into the side of his stomach area. As of today we were told that more than likely his tubes that are going into his heart will be coming out tomorrow which means, MOMMY and DADDY get to HOLD him AGAIN YAY!! It will be 2 weeks tomorrow since we have been able to hold our little monkey so we are hoping that they will be able to take those out so that we can have him back in our arms once more. At 4:30 this after noon they decided to do a CPAP ( turning off his breathing assistance) to see how he would do and if he would be able to keep his breathing stats in the 80's. Xander was off of this for 45 minutes and i am proud to announce that he kept his stats in the high 80's and his heart was also able to handle it as well. They have taken his ver-sed away and are only giving him pain meds when it seems that he is in discomfort but he did not need anything until last this evening which at that time they gave him some Tylenol and he feel right back asleep. Our little monkey is showing us how strong he really is and what will he has with in him. Soon our family will be home all together!

Friday, February 18, 2011

Gettiing Closer

Just a run down for everyone of what has happened from 2/3/2011 up until now. Xander was Life flighted 16 hours after birth to PMC ( primary children's hospital) We were told that his left side of his heart did not grow. He was diagnosed with Hypoplastic Left Ventricle. On the 7th of Feb Xander had his first heart surgery. He did great. As the days went by he started to go up and as we were told from the beginning we needed to expect some set backs as well. We had our first set back on Monday the 14th they had to go in and do an emergency BRONC to clean out his lungs., At that time we were told that his lower left lobe of his lung and his upper right lobe of his lung had collapsed. They also decided to do a CATH on the morning of the 15th to see what was going on with his heart to make the lungs collapse the way they did. 

We found out that the shunt that they had to place in his heart and kinked causing the oxy blood not to be able to get to the lungs properly. So with the CATH procedure they were able to place a stint into his shunt to keep it open. 

It is now the 18th of Feb and Xander is doing GREAT. they have been able to get him off of his nitric and are taking away his pain meds slowly each day. He is awake more and i get to see his beautiful eyes stare at me. It will be 2 weeks this Sunday that i have been able to hold him but that will soon change as they have been able to take 2 of his tubes away and are working on getting his breathing tube out. He does have a small blood clot in his left leg due to the CATH procedure but they have upped one of his meds to help get that to go away and are watching it very closely. We are getting closer each day to being able to bring him home. Xander is are delicate but strong heart warrior and we are truly blessed to have him in our lives.