So its now Monday morning, I don’t really know much more than I did last night. Well I say last night but we only arrived on the ward about 4 hours ago. To read what happened last night see my post the worst night of my life.
Charlie is stable. His heart rate is down to about 150-170 depending on how he’s feeling and he’s off the oxygen. He is in a lot of pain and cannot stand any light, we have the blinds drawn and the lights off. The nurses have had terrible trouble doing his obs, its clearly hurts to be touched and he is terrified! They are being great though, reassuring me and my little baby boy.
Its surprising how quickly you get used to the hospital environment. the beeping, the monitors, the nurses, the doctors. I think to be honest I totally immersed myself in it. By time my husband got there, I knew exactly what each machine did/meant, what each wire was, what medicines he was on, how often, how much. In my head I was his nurse. I was of course also his mother, I kissed, sang , read and comforted him. But emotionally I needed to be his nurse. I could not let myself be his terrified, grief stricken mother, I would have fallen apart.
The doctors came to see us on the first of many ward rounds. The talked a lot, prodded and poked Charlie, took readings, read his charts. They very gravely told me that Charlie was very ill. That his blood had been sent away for analysis but they were convinced it was Meningococcal septicemia. I didn’t really find out what this meant until he was much better, but I knew it was bad.
The rash all over my beautiful baby was his blood, seeping from his collapsing blood vessels as the septicemia poisoned his body. The doctors told me all they could do was wait and watch, hoping that his body would fight, he would be kept on hourly obs, watching for signs of brain damage. The check his rash, checked if any of his limbs were compromised. Then the doctor asked if some of the rash was new, it was but I hadn’t realised this shouldn’t be happening! The doctors were worried, they told us he could be going up to ITU later, that although on the antibiotics it was still attacking him. They kept telling us he was fighting really hard and doing really well considering, but every time we responded with a smile they would say that he had a long way to go and was very poorly! I have recently found out that most children bought in already exhibiting the rash end up in the ITU and a high number leave the hospital with lasting damage.
Monday was a long day. Watching that horrific rash cover my baby more and more, every time I looked at him i saw more. He couldn’t eat or drink so was on fluids too, he was so weak, so tired. He was helpless, in pain, frightened and there was nothing I could do.
The next day or so were filled with worry. Not only was the rash still appearing but Charlie was unable to wee and was therefore swelling. By Tuesday he was so puffy he could barely open his eyes, poor little boy. The doctors were worried his Kidneys were not working properly and he was given diuretics to help him release the fluid. The doctors also said that his blood was no longer clotting, hence the ever increasing rash. I was pleased when they said he didn’t need a full transfusion but he did have to have a platelet transfusion. My poor little baby, its seemed as if his poor little body was just shutting down.
However even though on paper he seemed to be having more and more problems, my little Charlie seemed to be returning to me. Up until Wed all Charlie had said was mama, not like he normally would but like a baby babbling, he hadn’t been talking at all. But by tues evening/wed he was starting to say the odd thing, he also seemed to be awake for longer periods of time. He was giving me hope. He wanted to play and watch tv. He didn’t really play but the nurses made him some playdough and I made things with it for him to look at. Each day he seemed more bright, more awake, more Charlie.
Wednesday evening I decided for the first time to sleep in my bed in the corner of the room instead of holding him through the night. He seemed to go to bed Wed night like a normal little boy, He got tired, watched some tv then fell asleep. The nurses had also told me he was now down to 3 hour obs and they no longer needed to check his eyes (looking at pupil dilation for signs of brain damage).
Thursday morning. I will never forget this morning. He woke up, bright as a button. “I’m thirsty mummy” he said. I quickly got him a drink. He smiled at me…he smiled!!! This was the first time he had smiled all week. I have never felt so much joy in all my life. He was still swollen, but not as he had been. The rash was still there but had started to fade a little and was no longer appearing. I text my husband to ask what time he’d get there, I didn’t tell him how well Charlie was doing.
He arrived a little later, as he walked in Charlie said “daddy” and a massive beaming smile appeared on his face. I have never seen my husband look happier. We sat chatting to Charlie, chatting to our boy who only days previously had been fighting for his life, his body bleeding into its self, his organs unable to cope.
The doctors came and told us he had turned a corner. Off came the heart monitor, off came the sats monitor, they unplugged his drip! I couldn’t believe it. It all happened so quickly. As quick as the disease had gripped his little body, he seemed to have bounced back. Later that day he was allowed out of his room and into the playroom. He couldn’t really walk properly but couldn’t wait to play. A little later he was moved to a ward. Suddenly I had others parents to talk to, other things to look at. Charlie seemed to much prefer the ward and he was finally starting to talk to and interact with all the nurses. My little star.
After some concerns over His ability to walk and a scare with his rash reappearing (he was still having clotting problems), we are now home and dare I say it fully recovered. I cannot believe how lucky we are. Charlie is still anemic and gets tired very easily. He had still got to undergo tests but at this point no lasting effects are expected. His skin is still mottled with the scars of his rash and he has lots of large bruise like patches and scabs. But all in all, he is better, he is Charlie, he is home.
I am so thankful for whoever was looking after Charlie, the nurses, the doctors, the well wishes, the prayers, god! Whoever played a part in saving my boy, thank you. I feel like I have been given a second chance. After giving birth to Charlie I suffered PND and did not form a bond with him, in fact I have barely any memories from his first year. This is in fact another post I have in draft that I have been trying to finish for a long time. Although I have over time developed an amazing bond with Charlie, I feel our time in hospital allowed me to have with him what I and he missed out on when he was a newborn. I have to take something positive from it. I got to care and nurse for my baby.
To anyone reading this I want to get through to you that ours in an exceptional case. We have been told by doctors that Charlie is very lucky and some said they have never seen a recovery like his. This is a happy ending but unfortunately it is an uncommon one. In cases of bacterial meningitis 1 in 10 will die and a 3rd of survivors are left with permanent damage including loss of limbs, brain damage, blindness, deafness and learning difficulties. Please make sure you know the signs. The rash is the last symptom to appear. Its is often called the grave rash, as the grave follows the appearance of the rash!
Here are the symptoms you need to look for;
- A very high temperature with cold hands and feet
- refusing food/vomiting
- fretful, dislike of being touched
- floppy, hard to wake.
- rapid breathing/grunting
- unusual cry
- dislike of bright lights.
- stiffness in the neck (check by trying to get child to put their chin to their chest)
- Lastly the rash. Blotchy skin and/or the appearance of a red/purple rash that doesn’t disappear under pressure (do the glass test)
These are the symptoms in babies and toddlers, for more information please see www.meningitis-trust.org