Sirolimus what, Sirolimus who?

Wow, it's been well over a month... think that's the longest it's ever been?! Update time.  

So....

Orlaith recently had an admission at Great Ormond Street, surprisingly we were in and out within two weeks, so thankful!  

Orlaith was started on Sirolimus... a immunosuppressant which is more commonly used to prevent the rejection of a kidney transplant, which lowers the body's ability to fight infections and diseases and  it works but weakening the immune system to help the body accept the new organ. From my understanding, it came into the world of endocrine as patients on Sirolimus displayed higher glucose levels, so it is very new in Hyperinsulism patients but it appears to be working well in maintaining blood glucose levels. It is taken orally, very 12 hours so it's much better than injecting - Orlaith is still on Octreotide therapy every 6 hours via sub cut injections but hopefully she will be weaned off this as the Sirolimus levels in the blood reach a certain rate and gradually the Sirolimus dose will increase and the Octreotide dose will decrease, hopefully to nothing at all. It hasn't made the "medical load" any lighter as it's another medication for her to take but she's much more stable on it and it provides so much reassurance, especially overnight.

Side effects aren't particularly pleasant - there are the more common spells of sickness, headaches, possible swelling etc but on the other end of the scale is a viral brain infection which could cause disabilities or death. Luckily, we are only experiencing minor side effects which is trouble sleeping; before going in for this admission, Orlaith's sleeping pattern was fairly normal.. bed by 7/8pm latest and up 10/12 hours later but now we're lucky if she settles before midnight and is up between 10 am and noon - talk about teenage traits already! We're doing everything we can to shift the pattern back 4/5 hours but it's definitely taking it's time; we'll get there.. if trouble sleeping is all this brings us then happy days. 

With the treatment being an immunosuppressant, there is a lot to consider - for example going out can be a nightmare; if someone has a cold/infection or whatever or a friends baby isn't well then it's best to steer clear, as Orlaith hasn't got the immune system to fight it off. We have open access to F1 (Children's ward) at our local hospital anyway, which means we can skip A&E completely and just take Orlaith straight to the ward for treatment so that also provides reassurance given the circumstances. Also, Orlaith is currently up to date on vaccinations but any upcoming ones won't be possible as she will just contract the virus or whatever the vaccination is for e.g MR etc so I'm constantly having to ask people how they are before we see them or ask them not to come over if they are ill just in case ... I'm not being rude, it's just one of those things.

We visit GOSH every two weeks now for a blood test and monitoring whilst on Sirolimus and will have an admission in the new year for other things, so fingers crossed this continues to go amazingly with my little beauty.

SCBU Mummies Pt. 2

Eleanor 

After waiting what felt like years, Orlaith and I were finally able to meet up with our SCBU family when we got home and it was amazing to see everyone. At first it was so surreal, seeing the Mummies and Babies in a normal environment was just awesome! I loved catching up with them all, hearing about everything that has gone on since we all last saw each other and of course, seeing those gorgeous babies! I can't believe the babies are pushing on to five to six months old now, where has the time gone? 

Frankie and Orlaith

Lucas, Thomas and Frankie

It felt like only yesterday we would spend our days at their cots, feeling like we would never get to escape. Just to know this group of mothers personally is encouraging – the love, the dedication, the support that these women have is just inspiring. Despite what they all had to go through during their time at SCBU and even now, they are still smiling! It’s heartening to see that this particular group of people, and their children have taken all what they have been through on the chin and it’s just made them even more amazing. I would not have got through those 7 weeks without them. As for the babies… Wow, just wow... I am overwhelmed with how much they have grown and become such happy souls with their own personalities. It goes without saying ladies; we produced a bunch of beauties!! There are 6 babies altogether; 3 boys, 3 girls… and yes babies listen up; I am expecting at least two of you to marry! What a wedding that would be! Roll on the next SCBU mummy and baby meet up!! ♡♥ ♡♥ 

Re-admission baby!

So today (sept 9th) we have Orlaith's re-admittance at Great Ormond Street Hospital. Every so often, Orlaith will be re-admitted for monitoring, fasting, profile building and investigating...to be honest, it could not of come at a better time, as she's been up and down lately with no real explanation as to why. This stay is intended to be short stay, hopefully it stays that way! 

We are on Kingfisher ward and as Orlaith is still a high alert patient, she has her own room...with an en-suite so I'm a very happy mummy, no communal showering for us! Haha! 

Today will be spent building a BM profile, so these will be done 2 hourly to see how she is coping with glucose levels and also to get an idea of where we're at in terms of her octreotide therapy and feeds. I'm feeling pretty good about it this time round; hopefully we'll get some solutions and questions answered! Orlaith also has a gallbladder scan today to see how that's getting on too. She's gonna be a busy lady! Its so strange being back though, its almost like this is home and we've been on holiday for 7 weeks at our house!! ♡