Happy Birthday Deklyn!!

We've made it!! Not that I'm surprised but it really is quite an achievement, my handsome little boy is officially 1 year old! As I'm sure your used to hearing already, our life is very unpredictable. After my last post of saying how well Deklyn was doing our journey took another unexpected turn. I'd noticed for a few days already that Deklyn had been needing a little more oxygen than normal but it wasn't a whole lot, and out of no where Deklyn got very sick. Our sweet baby boy could hardly keep his sats up, he was needing nearly 100% O2 (thats as much as you can get!) and still not sating good at all! The staff was amazing, they really tried their best to do everything they could for Deklyn on the ward so he could stay there for his birthday but the afternoon before his birthday things were only getting worse and they had only one other option to try.

The Amazing Cake Made By Deklyn's Gigi (Grandma) & Auntie!

If you've been following my blog for awhile you may remember back in June we were told Deklyn had Pulmonary Hypertension. They think this was due to poor lung growth and they hoped (and still do) that he would grow out of it. Pulmonary Hypertension for Deklyn basically means he doesn't get enough oxygen when the condition is bothering him. We hadn't seen any issues related to PH since June when he was put on a drug to control it. There one idea was to getting him on Nitric Oxide, I am not sure why but this gas almost instantly helps Deklyn when the PH is bothering him. They can not use the Nitric Oxide on the ward we were on so we had to go back to Paediatric Intensive Care Unit. 

Deklyns Room in PICU All Decorated!


At this point I was ready to go, but it didn't make it any harder knowing for Deklyns birthday we'd be back in ICU where he can only have 2 visitors at a time. It was pretty upsetting for a lot of reasons, he had just been doing so well and it felt like it all turned to bad so quick but like I said I was ready to go to get Deklyn the help he needed. Everyone was kinda guessing as to what was wrong at this point and I was worried we might lose him just because everyday was just slowly getting worse and worse. Luckily the Nitric works unbelievably fast so we'd know very soon if it was working or not. The instant he was in PICU and hooked up to the new vent with the nitric his sats began to climb up, we were EXTREMELY relieved!

Opening Gifts! He Did Such a Good Job, He Looked At All His Gifts And  Gave A Nod Of Approval!

So now we were trying to re-think how we were going to do Deklyns birthday party. We thought about re-scheduling but we just really wanted to have a party ON his birthday, so we thought we'd just have everyone come by, we can eat and visit in the waiting room and one by one people can go see Deklyn to say happy birthday. Not ideal, but it would work. On Deklyns birthday I truly felt we reaped what we had sowed. In the morning as we walked into Deklyns room we were stopped by a nurse who gave us an unbelievable offer. There is a small doorway in between rooms, and they were willing to move the kid that was in the room beside us so we could have ALL our family in that room for Deklyns birthday party! I almost cried! I felt like that was truly a gift from God after everything we've been through.

All Messy After Smashing His Smash Cake With The Help Of  His Parents Of Course

So although his birthday did not go as we had wanted, it really worked out very well! By his birthday he was starting to act like himself again and it was much better that we were in ICU for his birthday then be back on our ward with him feeling terrible and looking like we could lose him! So to get back to our regular ward there was 2 ways it could go. What we were praying and believing would happen was that with a few days to recuperate they could wean the nitric slowly until he was totally off and we could leave PICU. The other was, If Deklyn didn't tolerate being weaned from the Nitric he would have to undergo a test where they test how severe his Pulmonary Hypertension is (which by the way he will still need to do at some point) and then get him on another med to control the PH. Praise God, he has tolerated being weaned and by the end of the evening he should be totally off Nitric!

This 1 Year Old Is a Little Sleepy...

So hopefully we should be back on our ward tomorrow and we'll get to spend christmas in his new big room! Oh! Did I forget to mention?? Before all these issues, Deklyn got moved into a bigger room! Its probably 2 times the size of his old room which is fantastic for us and him! Its way more comfortable for us and we have room for all his stuff! 

Thank you all so much for all your prayers and support! This last week was very hard on us, and we really felt all the support! We've been receiving christmas gifts from a few of you and I really wanted to let you know how much we appreciate them! Thank you never feels like enough but every time we get another gift or note of encouragment we just feel the love & support which I know not every family living in the hospital has!

Our family could really use some more prayers, with Deklyn being so sensitive  he just really can't handle getting sick, so we can't have any visitors who aren't feeling well. We have some family that is sick right now and we really want to have everyone together for Christmas, we don't want to have to all be in one room and Deklyns alone in his room, so please pray that our family members get better so we can celebrate this time together! As a mom, it really sucks for me to have to watch my son be left out of things like family gatherings even though right now he will never really remember these times anyways.

Again, thank you SO much for all your prayers and support. Whatever you have done for us we thank you from the bottom of our hearts! You have made our journey that much easier!

1 year... Its felt like its taken forever but at the same time it feels like he was just born yesterday. We've come so far, we've learnt so much! Our son has brought us so much joy and he is one the greatest blessing in our lives. Yes I wish we could be home, I wish we had the ideal 1st year experince but I am more grateful we still have our son with us. After too many close calls and seeing so many families not as lucky as us we've really come to see things in a very different light. Today actually marks a year of us not living at home, and this has been one of the hardest parts for me. Not having your own couch to cuddle up on, your own bathroom, your own place to prepare your meals... its really gets to you after awhile. But with Gods help we've been able to overcome these feelings and just focus on our son.

This christmas season enjoy your family. Look around you and see how lucky you are to have what you do. Don't take the little things forgrated. 

Grow Deklyn Grow!!!

This is going to be a bit of a shorter post but I just had to say, things have been going very well over here! Deklyn is so happy! Nurses and doctors just keep commenting on how much happier and interactive he is since his trach change! For the first time in quite awhile I enjoyed rounds on Deklyn today, for those of you not familiar with hospital life rounds is a time where the doctors and other specialists come around to talk about the patients. For the most part this times are a little on the discouraging side, talking about all things that aren't happening. Today though there was a lot of talk about how well he is doing (Finally!!! I was so sick of hearing all the bad things), we've been so focused on his breathing and today the doctor said we need to be more concerned with his growth and the lungs and breathing should come along with that, keeping in mind as he grows we may have more trach issues ( like his trach not being long enough) but thats all part of it. 

Its usually a little scary to ask anything in front of everyone but today I got up the courage to ask if Deklyn would be able to be off of his sat probe monitor while I play with him. It would be just one less thing hooked up to him,  its a little monitor wrapped around his toe that hooks up to a screen that tells his O2 sats and heart rate. Surprisingly they told me they trusted me enough that I could do that! I was so happy to hear that! Its so frustrating trying to be a parent and then you have to watch all this wires and hoses yet so I was happy to get rid of one just for while I play with him!

Deklyn has been wiggling his arms and legs so much lately! He's usually a kid that you can hardly get to smile and I can now say I can pretty much make him smile anytime I want! Heres a short video of him smiling!

I'd been so discouraged lately, the other families here are starting to get to take their kids for walks around the hospital and there is even talks of them getting to bring there kids home for christmas. I was so happy for them but sad for us. We've been here so long and I feel like we've done everything we can to get him to a place where we can take him out and eventually take him home for good and we just never get there. But today I'm feeling much more hopefully that this day is coming!

Here is our christmas card this year, I wish I could send one to each and every one of you but this is the best I can do! Have an amazing christmas surrounded by the ones you love, as your celebrating remember to be thankful for what you have even if what you have doesn't feel like very much. My heart goes out to those of you who have lost a child or loved one,  I couldn't imagine celebrating christmas without Deklyn. My heart also goes out to those of you celebrating christmas in the hospital... its not a easy place to be especially if being in the hospital also means your not close to home.
We are blessed! Merry Christmas!