Her flu is now much better, other than the slight cough that is still hanging on and her blood pressure has been now down to a more stable level. This is probably a mixture of fighting off the flu, getting into a better routine of Hemodialysis and where there are now no diseased kidneys making it erratic. Her BP had been around 110-130 and sometimes even higher and this week, has been well below 100. It has been around the 70’s at times which is very good. BP will still fluctuate more than normal, where she will retain fluid, but this week, there hasn’t been much change. This may mean, there isn’t as much excess fluid taking her BP up too high and that the dialysis nurses are getting on top of any retained fluid from before.
Aimi is also accepting her bottle much better and even grizzling for a bottle feed now. She will still be fed through her tube during the night to keep her weight gain up, but has started taking bottle feeds in the day easier. She sometimes also likes to take her dummy. This is good because it keeps her reflex action going and being able to orally take milk means her throat and mouth gets some liquid. Any milk she doesn’t drink from the bottle, gets put down her feeding tube. She will at sometime, get her feeding tube surgery direct into the tummy, instead of in her nose.
ARPKD babies can normally get Liver involvement too and a week or two ago, Aimi’s Liver numbers were not good and her liver apparently felt hard. She had another blood test last week and the Liver numbers had halved so this must have been down to an ‘inflammation period’ after her last Kidney removal. Also, fluid can surround the organs making them appear firmer. The radiographer said that after having two hefty kidneys in there, it can press and squash against near organs, so hopefully it can now all bend back into shape in there. Everything looked okay on the scan that he done.
The physio also visited Aimi to have a look at her little clenched fists. In time, these should open out when she goes to grasp something and babies that have been hospitalised since birth, normally take longer to hit the normal baby milestones. The physio also diagnosed her as having some Hyper-mobility. This means she is double jointed in her thumbs/fingers and feet. Her feet currently flip back onto her leg. Dad had this at birth on one and visited GOSH for it, where they said tissue will build up over time and not be a problem – we hope its the same in Aimi’s case too.
It looks like Aimi is slowly starting to smirk. As mentioned, babies who are hospitalised for a long period and have major surgery, normally take a bit longer to reach milestones. She had an ultrasound on her head some weeks ago and as routine, that gets followed up with an MRI, which she will have soon. The ultrasound was fine so we hope the MRI is the same. Babies who have trouble breathing right after birth can sometimes have some troubles, due to the oxygen being starved to the brain, so it is a routine to make sure everything is fine.
The doctors have also started talking about Aimi’s discharge from GOSH. They are already putting together an order for all the medications she will need at home. This may be a little way away yet but how great that it can now be something that is spoken about. She will need to visit GOSH for Hemodialysis, at a minimum of 3 times a week but at least, at the same time, she can be kept an eye on there too.
We would like to continue our eternal thanks to the doctors and nurses of Great Ormond Street and a thanks to two student nurses that cared for Aimi, and are now off back to university. These nurses put in a lot of their time to give Aimi cuddles when she needed it and help out in all her care.
Also a big thank you to the PTA at Hockley Primary School that organised a raffle at their fete for Aimi. Thank you very much.
Don’t forget to share this on your Facebook, Twitter and anything else to raise awareness and thanks to everyone, as always, for their support. Also, remember to follow Aimi’s Twitter page if you haven’t followed yet.
Here is a video with some clips from over the week.