Home is a word being bantered about more often now.... but it is so hard to get all the pieces together to get out the door! It is definitely harder to get out of hospital than in!
Today I didn't go to work so I could be here bugging people to make sure all the pieces are being laid in the right order, cos if they aren't it can easily slip us into another day and another and then it's Thursday which means might as well give up on Friday so let's just stay the weekend!
On Friday afternoon we had a discussion with the respiratory Dr at 3pm about ordering home oxygen. The comment was made it took 48 hours from ordering to get the oxygen in the home. They chatted and decided it wasn't worth doing it then as it was Friday and they would wait til Monday.... so they had another discussion today and they couldn't confirm if it had been ordered today or not! So days dribble by with not much to show for it. In my thinking (& what I told them), was why not flick them the email on Friday afternoon and risk someone being in to start the ball rolling, or worst case scenario they see it first thing on Monday morning.... but no, plod plod plod.....
This morning we waited until 12 for a chest xray. The gastro consultant was asking me about who Sams cardiologist was as they wanted to talk through with respiratory the various issues. I made the comment that wouldn't respiratory want Sams new chest xray results first, so they could have an informed discussion. I explained we hadn't had the xray yet - it seemed no on had booked it... so this kind of cross team communication really slows down the process. It was decided on Friday the need for an ECG of his heart...... and today after me asking many times it was finally booked at 12:30 today.... so we now await a time - again it could have happened today if they had done it yesterday.
Today I had nebuliser training. Thankfully no rocket science involved and looks pretty straight forward, but it will add to Sams daily care regime and will be time consuming. It will take around 15 minutes every morning and evening for 3 months. Plus, we have to boil sterilise the parts and dry them. It is a standard Cystic Fibrosis piece of equipment and had he actually have CF we would also qualify for the microwave steam steriliser.... but alas no, we have to boil it in a pot..... At this point it just seems means, that due to the fact Sam doesn't fit the exact criteria we can't access the same care - physio/equipment - yet he is having identical treatment for virtually same symptoms..... maybe there are free steak knives somewhere we get which I didn't read in the small print?? I don't begrudge anyone what they have to help them cope with their childs awful condition, and I understand resources aren't infinite...... I think beginning week 6 in this place skews my judgement over what is normal and fair and right.....
On that note, I hugged farewell to a very special family that took their child home today - very very cool to see them on their way home after a long and tough stay.
On Sunday as a family we read Isaiah 61. v 3. It talks of ' Put on a garment of praise instead of a spirit of despair...'. This week I've been thinking about this as it's easy to get down contemplating Sam and his situation. A jacket or jumper is only of use to take away the cold when it is put on, but I have to put it on for it to take away my cold and make me warm..... as it is with life, I have to choose to pick up the jumper of praise and put it on me and only then does the despair go away. I don't want to be despairing and sometimes in my stubborness I'd rather sit their and shiver and moan..... but it totally is true - hope comes when we are thankful and grateful and only then does the cold dissipate. Starship is a myriad of things. It is a place of hope and healing, sadness and bad news, joy and laughter, miracles and milestones..... it is like a weird kind of family..... So we are thankful for all that Starship is to Sam and our family.......and just like any family there are bits that drive us crazzzyyy!!