First Admission for IV’s

When I think of a two week course of intravenous antibiotics I imagine being hooked up to machines for hours on end and a person looking very sick indeed. How wrong was I?! While Harriet was still under general anaesthetic the doctor placed a long line in her arm into which her medication would go. I was shocked to find out that it was one syringe, just like her oral meds done at home, but connected up to her line and pushed in. Took all of a minute maybe! So we were in there to have that done three times a day and around those times we could come and go as we pleased.

After a few rough nights following the bronchoscopy, things settled down and we got into the routine on being on the ward. I have nothing but praise for the staff, they really do everything they can for you. Harriet’s morning and evening medicines were all brought in to us, the physio would come to do her percussion and she had access to every toy imaginable. I had made the mistake of going and buying books, new crayons and activities for her beforehand and was blown away by the amount of resources on the ward. All the toys were so lovely and clean too which made the neurotic in me happy!

When the weather was nice we went out into town, even getting a free pizza one evening. Chris said he is going to bandage Harriet up in public more often! We did alternate nights at the hospital where inevitably Harriet was an angel, sleeping through everything for Dad and then not for me. So unfair! In all of this our older daughter, who is four, was such a superstar. She just goes with the flow, went about her daily routines going to nursery then not complaining once when she had to go backwards and forwards on the metro to the hospital. She is such an amazing big sister to Harriet.

All in all it certainly wasn’t as bad as I had expected. The beds for parents aren’t great but at least we had our own room with our own bathroom and a nice view of one of the old university buildings. Harriet got to try some different foods while in there and managed to gain some of the weight she had lost previously. She did really miss her sister though and one evening after she had left for home with dad, Harriet bumshuffled the length of the corridor to the exit and stood for ages calling her name. Even when we went into the city centre and passed the metro station she would point at it and cry saying ‘toot toot’ as if she wanted to go home!

Finally, when her cough stopped we were able to come home. On top of all of her usual medication we now have a nebuliser to use once per day to help thin her mucus. We also have a months worth of extra antibiotics to run alongside her prophylactic dose so fingers crossed it does the trick. The bug she keeps growling, haemophilus, had gone on her most recent two cough swabs so hopefully it has been eradicated. We have to take heart in the fact that despite such an awful run of luck there was nothing sinister to report from her bronchoscopy and that gives the clearest picture of what’s going on in her lungs. We are all so happy to have her home and long may it continue.

If you would like to learn more about cystic fibrosis and ways in which you could help click here.

First Bronchoscopy

Preparing yourself and more importantly, preparing your child for a hospitalisation is never going to be easy. At nineteen months old, Harriet had to have her first bronchoscopy. Sadly, we are no strangers to theatre as she was born with meconium ileus and had to have surgery at only five days old, awful. Handing her over again at six months old for a stoma reversal was awful and this time was truly awful too. Never gets any easier. If you have read my previous post, preparing for a bronchoscopy, you know the reasons why we have got to this point; persistant coughing plus growing haemophilus, twice!

Alarms were set early as Harriet wasn’t allowed anything to eat past seven am. We decided to fill her up as much as possible before then and she was only allowed water after that. Thankfully she’s not too fussy and we find when she does have a bug or cough her appetite dwindles anyway. Big sister was happily packed off to Grandma’s for a day of fun and we headed up to hospital. The wait was long, we had hoped she was going to be first at 1.30pm but it was around 3.30pm when she was called. We had managed to keep her going and entertained all day so by this point she was desperate for a nap and fell asleep in my arms five minutes before walking over to theatre. I just prayed she didn’t wake up until it was all over! Only one parent was allowed into the room where she would be put to sleep so I carried her in, still snoozing! The anaesthetist held the gas mask near her face and she stayed asleep, it could not have gone any better. I still cried when they told me to kiss her goodbye and had to hand her over and walk away. Any parent who has had to do this will know just how horrible it is.

Luckily our room on the ward was ready so we could go and unpack for our potential two week stay. Theatre staff would ring when Harriet was coming round and we would be escorted back down to see her. I overheard a phonecall which seemed to be about her but the nurse looking after us wasn’t there so we would have to wait. The poor staff in theatre couldn’t wait though, after a few minutes I heard a commotion outside the room and there she was being wheeled up! She had kicked up such a fuss on waking that they brought her straight to us! She’s so funny!

For a while she seemed fine, a little pale maybe but happy to watch Frozen for the billionth time. Our consultant came round to tell us that they hadn’t found anything suspect in her lungs which is just the best news. She had a little area of extra secretions which they sucked out but other than that all good. We were told she could spike a temperature and possibly vomit that night but she was doing great. The plan was to do ten days of IV antibiotics and start DNase, a nebulised solution which thins mucus, twice per day.

After a while Harriet became increasingly clingy and just lay on me cuddling in. She gave me quite the shock when she vomitted all over me! I’m not used to it as she’s never been a sickly child. Thankfully it was just the once and she settled again. In terms of coughing she still seemed quite bad. A bronchoscopy can stir things up and this was certainly the case on day two. At around 6pm the following day she started coughing NONE STOP. She did not stop until 6am! We sat up all night watching the iPad, watching Frozen, watching birds on the university roof opposite, we saw it all. After this my husband and I did alternate nights! Everything settled after that night though so I think it was all down to the procedure.

Watching your child go through this is never going to be easy but it is the best way to find out exactly what is going on. I do hope that we don’t have to have another one for a long time, if ever. The only way to try and stop this from happening again is to keep raising awareness and funds.

If you would like to read more about cystic fibrosis and ways in which you could help click here.