God is Good; one of the few impossibilities we have is that we cant exaggerate how good He is, but he takes pleasure in us actively trying...
Hi Everyone,
Sorry the updates have been so few a far between.... I have finally uploaded some pictures, we have had a long couple of days and have now taken a night off to chill out and relax...
As for what's happening with Elijah, its been a roller-coaster of a week. Firstly, the stents are out! its been 5 weeks with those things in and they are finally out! When they pulled them out they tried to put him on a thing called CPAP (pronounced 'see-pap'), which has 2 little prongs that stick up his nose and help him breathe but he wasn't happy with it at all so they put him on another type of breathing support called 'high flow'. This is just the classic plastic tubes in the nose that you see on people on TV when they're in hospital etc... So he was put on that on tuesday the 26th of Aug when his stents came out, he was pretty happy on that so they moved us from nursery 2 to nursery 3 which is what they do when babies are improving and don't need as much breathing support, so we were stoked about that. Then on the 27th he started finding a bit hard to breathe and during the day he had a bit of an upset moment which he found it really hard to recover from then he had another unhappy time at night, both were brought on by having his nose suctioned which is really annoying for him but has to be done, so if you can imagine a thin plastic tube being stuck down your nose to the back of your throat and then sucking as it is pulled out... So that set him off on wednesday and then he doesn't like having dirty nappies either so that would kinda add to his already frustrated outburst, so when we left on wednesday night at midnight he was looking really white, sweating heaps and just looked really uncomfortable. He also couldn't get into a good sleep cause he has a strider, which is a noise that he makes when breathing in, it happens because the air has to be sucked through a smaller than usual hole to get to his lungs which in turn cause a gasping kind-of-a noise, so he progressively got worse over the night until the nurses where going to put him back on a ventilator but instead put him back on CPAP which is a lot better because a ventilator is the last thing you wanna be on... So they put him back on that and then put him back in nursery 2... And now they have changed the CPAP to a tube that is running down one of his nostrils to the back of his throat and he likes this a lot more than the double prong option...
So after a long day and night he has calmed right down and is breathing comfortably with the help of the CPAP and he is a nice color again and is sleeping soundly because when he is calm the strider doesn't happen, that only happens when he is worked up which is also the time when he needs more oxygen.
So with that being the problem the docs talked to us today about a tracheostomy. this is an operation in which they place a small tube into his airway and it comes out a hole in the front of his throat. At first this option freaked us out and we both thought no way! but after they talked to us today and explained everything we now know that it is no where near as bad as what we thought. It will mean that we will get home quicker and he will be way more comfortable also. It will also mean that there will be a few extra cares involved when we are home.
Its unknown how long it will have to be in for but at a guess it would be safe to say anything from a year to 18 months. We just have to wait for him to grow so that everything opens up a bit, its not so much his airway that needs to get bigger but its everything at the top of his airway.
So we have until monday to make a decision on that and if we decide to do it he will go to theater on Tuesday. At this stage unless his situation drastically changes we will be forced to go with it because it would be the best thing for him.
We are still praying for and believing for Jesus to totally heal our boy. So please join with us in praying for our boy to be healed by monday and home quick smart. And please also pray that if it comes to getting the operation that everything would go smoothly and that we would be outa there soon after the op.
Also continue to pray his heart is totally healed so that he wouldn't need on operation to fix that and pray that he grows and puts on weight fast...
So heres the list;
- Healing on his ability to breathe, that he would be able to breathe 100% on his on perfectly
- Healing in his heart, that it would be made totally normal and that he wouldn't need an operation
- If he gets the operation for the tracheostomy that all goes well and that he would be comfortable
- That he gains weight and grows fast, that his throat, voice box and airway all grow fast
- And finally that we would be home quick!
Thanks so much to all of you for your prayers, love and financial support. Throughout this whole ordeal we haven't had to concern ourselves with anything but our son, it has been amazing how many people have actively supported us and taken some of the burden with us. Thank you all again, we wish there was someway that we could actively return the love shown to us.
We'll continue to keep you updated and please feel free to pop up to the hospital and visit us.
God bless,
Josh, Amberley and Elijah