OK, I really need to get to bed! It's after midnight but we have just got back from the hospital and I wanted to update while everything was still in my head....
Tonight when we went back up to PMH Max was much the same, if not little worse. I noticed straight away that his colour was different - he was not his usual little pink self, but looked rather pasty and washed out. He was also still extremely lethargic and floppy! I had rung the nursery earlier in the afternoon and had been told that he had had a few more desats and that his heart rate had also dipped a few times so they had started a course of antibiotics as a precautionary measure. The blood results had come back at that point at a normal level (so not really indicating an infection) but they decided to start antibiotics anyway. Tonight he was still clearly struggling with his breathing and had several bouts of apnea (where he stopped breathing for a short amount of time) while we watched. at the same time as this was happening his blood oxygen levels were dropping and his heart rate was also dropping (bradycardia). This was clearly concerning the nurses and they had to stimulate him a few times to make him respond and take another breath (not to mention how much it was concerning his mummy, who was now sitting by the cot side staring at his little chest with tears streaming down my face!!)
The nurses called the doctor to review him at this point and a lovely young female doctor came in to have a look. She watched him for a bit and then spoke with the nurses who were caring for him before she decided what would be done. A new set of bloods was ordered as she was certain that there was in infection somewhere and she explained to us that it can often take a few hours for it to show in the blood. She also said that when those results come back with a higher level it will confirm that Max has a bug of some sort and they will then complete a "sepsis screen" which includes further testing of a urine sample and also to perform a lumbar puncture on him to find out the exact type of infection and where it is in his little body. She said that it is important to identify the infection so that they can be sure that the antibiotics will be the right ones and that he will be given them for the right length of time to really take care of it.
So we waited the required time (about and hour and a half) before the blood results came back - earlier in the day the level was normal at 7 - tonight it was 37! Clearly an infection somewhere!! The next step was to organise a Lumbar puncture (which they were setting up for before we left! We decided not to hang around for that as we were told it can be quite upsetting and we really could not take much more tonight) the nurse said that it is likely he will get worse before he gets better and that there is a good chance that he will be transferred out of the nursery and back into the main NICU before the morning. She also said that if his breathing gets any worse that they will look at putting the CPAP back on him or even at the very worst case needing to ventilate him again.
So that is it, and that is where we are at. My poor baby boy looks so miserable and sick lying there struggling to breathe. I almost wish that they would put the CPAP back on so I didn't have to see him try so hard - he just looks exhausted :( I know on a logical level that this is just a temporary setback but it is still so hard to take. The boys were both doing so well and now poor little Max has to put up with this - it's just not fair on him. No little bub should have to go through what he is at the moment! It was not meant to be this way!! I should still be pregnant (I would be 33 weeks now) and those sweet little boys should be snuggled up together protected by me - not fighting off bugs that their systems are too immature to handle and lying metres away from each other in plastic boxes
OK, enough feeling sorry for myself.... I am off to bed for a restless night of attempted sleep! Thankyou so much to those people who have passed on supportive messages and offers of help - you know who you are and I love you all :)
Marnie
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