3 Months Old!!

Our sweet baby boy is 3 months old today! What a journey it has been, and there is so much more to come. We've had some ups and downs since my last post (as usual). Deklyn had a major lung collapse, which later made sense as to why he had been so irritable lately. They had to put Deklyn back on the jet ventilator (this is the ventilator he was one when he was born, a very gentle way of ventilating) which they hoped would open his lung back up. I was pretty upset, although I knew this step backwards was going to help him no one likes to feel like your moving backwards rather than forwards. He also hated the jet when he was on it before so I was not looking forward to seeing him so upset, but they have him on medication to help keep him calm and settled.The change seemed to help significantly but after awhile again it collapsed. We are not sure why, there could be many reasons but tomorrow he will have been on the jet for a week, they are going to do some x-rays and tests and if all looks good he should be going back onto his previous mode of ventilation.

On an exciting note, Deklyn has finally been able to be on his tummy! He absolutely loves it! He gets very upset when moved back onto his back. He's been breathing alot lately which is an awesome sign that things are moving in the right direction! We will also be making the move to PICU sometime soon. I am looking forward to it for many different reason. We will have our own room so noise won't be much of an issue anymore and it will give us so much more privacy and space! They also have much more experience with babies like Deklyn there. I'm really going to miss the nurses in NICU but I know this is going to be a good move for us. They also say Deklyn will be able to get a new tube (yes again haha) in PICU that should help with his issues of his tubes getting to small for him, and when he has that we can start changing his ventilator settings and watch him breath more on his own and eventually move to new forms of ventilating that don't involve a tube down his throat!

We had an article in the Winnipeg Sun that can be read here and it was also in the Red River Valley Echo (our home town paper) they are exactly the same article but here is a link to that one as well.

Prayer requests for us right now:

Deklyn's lung will strengthen and stop collapsing

We will be able to move to PICU soon and that it will be a great change for us

Weening down Deklyn's medications for pain will go smoothly

and Continuation of bone growth

Thank you for your thoughts and prayers!

 

New Tube!!

For those of you who have been faithfully reading my blog, you will be happy to hear on Friday Deklyn finally got a new ventilator tube! They got an IV on him Thursday morning which would be the main thing he needed for a tube change. They wanted to do a scope of Deklyns throat to see how it is structurally, so they called Ear Nose & Throat (ENT) to come and it shouldn't have surprised me, but the tube change went from happening in the next hour or so, to the next day. We prayed for his IV to stick until then and it did! 

Amazingly the tube change did happen the next day. The doctor explained the risks to me, which were pretty scary risks, but I knew this change would go well and be the best thing for him. It really didn't take very long and we were told it had gone extremely well, better than anyone could have hoped that it would! His throat looks great, has a bit of irritation spots but that is to be expected after being ventilated that way for so long! Some of you may be wonder if his new tube is in his nose, cause we were told that would be a great option for him. After lots of discussion it was decided having the tube be in his mouth again would be better for him in the long run then the damage it might do if it was in his nose.

So now that we are over that hurdle, we are now facing some new issues. We are not totally sure what is going on, but Deklyn has been working very hard to breath. We want him to try but at the same time he is working himself so hard he is getting very irritable. He has had a very bad fever today (which has come down) and he has been having the same spot in his lung collapsing. Many different things could be going on, he may have an infection, his fever could be related to the collapse, we not sure exactly how he feels growing bones so the fever and irritability could be related to that. There are just so many things to consider but it is just so hard watching your child so upset, you can tell something is hurting him and you can't do anything to help him. 

Those of you praying for us, I would really appreciate prayer that either whatever is bothering him will be gone, or the nurses and doctors can figure out what is bugging him and fix it. 

On a happy note, Deklyn is growing! They still look funny, but his arms are not so tight and close to his body. They have much more mobility and and slowly getting longer! It is just so encouraging to see!

Thank you to everyone for your support, I feel like Deklyn has so many people that love him, are praying for him and cheering him on in this journey. It is really hard some days, especially days like today when you just want this whole experience to be over and take your baby home. We can feel your prayers and love. Thank you!

A Chance to Reach Out

Deklyn, as always is doing great! He is such a trooper! A few days ago he was very unhappy, I had never seen him so up set and I could do absolutely nothing to settle him. He also had quite a high temperature. I asked the nurse if he could have an infection, she thought just because he normally is quite warm she wasn't sure but we sent away some test and it came back he had a respiratory infection. I wasn't happy to hear that, but glad we figured out why he was so upset and they seemed to think we caught it early which is always awesome! Since he started his antibiotic he has been doing so much better, and from more tests being sent away the infection seems to be getting better. 

Today, Deklyn became a tv star... haha! We did an interview for CTV news which was shown today, if you missed it, you can see it here. They didn't show a whole lot of what we had to say but they will be showing it again this weekend on the national news and I'm guessing they will show a little more of what we said. Deklyn did so well, he was actually quite fussy before the interview and as soon as the camera was in his face he was calm and happy just looking around! We are always shoving our cameras in his face so I guess he's used to it!

I didn't really want to do a interview for the news, simply for the fact that I didn't want to see myself on tv! But when we were asked to do it, I thought back to the time when I was 20 weeks pregnant and found out that my baby most likely had HPP, I googled HPP and found a little boy named Gideon (who is mentioned in the video) and saw an interview they had done, and also a video that they made. Just seeing that another family was going through something that I was about to go through and that he was alive and thriving! It gave me so much hope after being constantly told my baby was most likely going to die. If that interview we did would help just one person, like the interview with Gideons parents helped me, thats all that matters to me. 

Something to get excited about... tomorrow is Deklyns 2nd medical survey where they will do more full skeletal x-rays, blood work and stuff like that. I am mostly excited to see the x-rays and see how much better he is doing since the ones from on the 1st of February! They also would really like to get an IV on him, they tried earlier today and failed but they were possibly going to try tonight and tomorrow morning, just because they do need to get some blood for the tests they need to run and also when he has the IV in they can change his tube! Which would just be a huge relief for that to be over with! So if anyone wants to pray for them to get an IV in easily that would be great!