31 Days of May The CF Way - Day 4 Admissions

31 Days of May The CF Way - Day 4 Admissions

El has had 3 admissions.

Admission 1 - I wrote about on day 2 the first year

Admission 2

Was also in her first year. she was ten months old and it was the week after christmas. She had been ill all through christmas we were doing at least 3 physio sessions a day, she was put on antibiotics but she wasn't improving.On the 27th of December she almost completely stopped eating and drinking not even breast milk. I took her into emergency and she was admitted. They didn't really do much. They put in an ng tube which she promptly pulled out. They also weighed all her nappies to see how much fluid there was. They took bloods and continued on with her antibiotics. Over the next day she bagan to improve and they found out that she had adeno virus. So after watching her for a further 24 hours and seeing that she was continuing to improve they let us go home. We were in for 3 days. A nice short stay.We were home for new years too which was lovely!

Admission 3 was only 2 months ago, and was her first more serious admission (in my opinion) El had an awful cough for a number of weeks before her annual review and had been on a couple of different antibiotics. At her annual review they decided to try two antibiotics together and bring her in for outpatients physio appointments keep an eye on her. I took all three kids and attended the physio appointment on the Friday and were planning to go to the museum with friends after. The physio rang to speak to the nurse who asked us to come and see the doctor who said that El needed to be admitted that day for about two weeks. (we were supposed to go to the beach for a week the following Monday so I was really unhappy - thankfully we were able to rebook for a few weeks later). I was shocked that she needed to be admitted that day!

So I left the two older kids with my friend for their museum trip and took El home and packed and headed back to prison (I mean hospital). I remember speaking to my friend and saying that I could handle anything as long as we could have our own room. Well of course we had to share a 3-bed room. Have i mentioned that I am a bit of a loner and hate having people around all the time. To put it mildly I was really unhappy - an admission, no holiday and sharing with 2 other patients and their famillies.

A and J and Em visited on the Saturday before the kids went to stay with Mum. I hate not having A and the children with me and find this the most difficult part of each admission.

I found out that El couldn't have a PICC line inserted until the Tuesday, so I knew we would have cannulas which have never gone well with El. She went through one every day before she got her PICC line on the Tuesday. On top of the 4 cannulas the levels of one of the drugs she was on had to be checked as too much can have dangerous side effects such as liver damage and hearing loss. This was done by finger prick and then squeezing blood out of her finger or toe. She had her levels tested twice as the first time it was too low.

El also had two physio sessions per day. At home she tolerates her physio fairly well. but in hospital it was terrible. Almost every session she had a different person and she was not happy, screaming and crawling off the bed to get away!! I started leaving because it didn't seem to be quite so bad if I was not there.

It came to the point that when anyone walked through our curtain El would hide behind me. Except for the people with food!! I have never seen her eat as much as she did those days in hospital! She gained 700g in the two weeks she was on antibiotics!

On the Tuesday El had a general and her PICC line was inserted. Other then being really tired she recovered quite well. It did bring back a lot of the memories of Em's surgeries, but at least I could recognise EL after the operation!! (after Em's lip repair I kept walking past her in the hospital because she looked so different!

The PICC line made life much easier!! She was hooked up to a bottle, which meant she could move much more freely. That afternoon the Hospital in the Home (HITH) nurse came and spoke to us about finishing her treatment at home! It depended on them getting her drug levels correct. So the levels were checked that night and were found to be good. so we could go home!!!!!

We left on the Wednesday night and for the remainder of the two weeks had physio at home twice a day and the nurse once a day to change her medicine! It was fantastic. The only trouble we had was her arm became a little red and sore so we spent the Sunday in the hospital to make sure it was ok, which it was. Also one of the bottles of medicine burst but we were on our way to clinic anyway!

On the Friday two weeks later the PICC line was removed, which she hated, and was disgusting. (thankfully I had watched on you tube (yes A I had to see) so knew kind of what to expect). It was such a relief that the two weeks were finished. I am so thankful that we could do HITH, as sharing a room was driving me crazy!!!

I know I keep saying that having our family split up is actually the worst part but it really is awful. They say that when a child has a life threatening illness, its not just the child who has the illness but the whole family, and I can not find the words to say how true that is!