Gutted to even write that title but on Thursday this week Harriet will have her first bronchoscopy. I feel like we have narrowly avoided this procedure and hospital admissions so many times, in a way I should be glad she’s got to nineteen months without any huge interventions. The reason behind the bronchoscopy is pretty much due to back to back viruses. Harriet seems to catch one every few weeks. She has had a lingering cough that has peaked and troughed for months now and has never fully gone away, until two weeks ago. She had ONE week of being well and completely cough free and we really felt that this was it and she had turned a corner. Typically her older sister developed her first cough and cold in months and you can guess the rest. I could have cried when I went to get Harriet out of her cot one morning to find her absolutely loaded with cold.
A week on from this it is showing no signs of abating either. The brochoscopy was going to be cancelled if she stayed well which now is not going to happen. Due to the scheduled procedure she cannot be on any extra antibiotics so she is just riding this cough and cold out until Thursday. The harsh reality of having a baby with cystic fibrosis is kicking in right now. Reading through the paperwork for the procedure brought back all those awful memories of when she was a newborn and having to hand her over in the theatre waiting room (Harriet was born with meconium ileus.) Not having a clue what was going on, why my precious new baby was having to have a major operation. This time, as she is a little older, one of us will be able to stay with her until she is asleep. Who that will be, me or my husband, I don’t know. I did feel a little ashamed of myself when she had operations as a baby for sitting out of the room as I couldn’t handle watching what they were doing to her. I had a moment where I gave myself a firm talking to and vowed would never be such a wimp again and would be by her side, holding her hand through all the horrible things she has to go through.
Our day will start early as Harriet isn’t allowed anything to eat past seven am so I’m going to load her up as much as possible! Thankfully she is a pretty chilled character and I’m not expecting this side of things to cause any problems. She is only allowed water after that up until eleven am then nothing. We have to take her to hospital for midday to prepare for the procedure at around one thirty. The list runs in age order, youngest to oldest so she should be first, fingers crossed. The bronchoscopy itself only takes ten minutes. A tube will be inserted through her nose to allow the doctors from our CF team to look at the back of her throat and her lungs. Depending on what they find they will decide then and there whether she needs to be admitted to hospital for seven, ten or fourteen days for a course of intravenous antibiotics. We are to prepare for at least an overnight stay and pack our bags.
Naturally we are hoping for the best possible outcome in that they find nothing sinister and are able to give her a wash out and send her home. Despite that being the preferred outcome it wouldn’t give us any answers as to why she has picked up every single virus going and has coughed for so much of this year already. So we find ourselves caught between a rock and a hard place. Ultimately Harriet’s health is top priority so this has to be done to keep her lungs in the best shape possible no matter how difficult it may be. Not only will the procedure be distressing for her but the impact it has on our family life won’t be nice either. Harriet adores her older sister and cries for her whenever they are apart, even if they’re just in different rooms at home! To separate them for potentially two weeks is just devastating. Of course they will be allowed to visit but it’s just not the same is it?
I am trying to find positives, I really am. It is for the best but the negatives are overtaking at the minute. Watching your baby be starved, undergo a general anaesthetic then potentially have a line fitted in her arm for IV access for up to two weeks is never going to be easy to deal with. To be away from home, from family and be confined to a small room in hospital, again, not easy. The fact that everything is up in the air at the minute is hard to bear too. I like to be organised and make plans. CF seems to be good at messing with them. We have, however, planned all of our days leading up to Thursday with fun stuff to keep us busy! We will certainly make the most of these last few days as a family altogether.
To read more about cystic fibrosis and ways in which you could help click here.