I thought it was about time that i did an update for Harry.2007 hasnt proved to be a good year for Harry. He spent most of it in pain and having seizures, and when we sorted out his pain, he got a horrendous chest infection. That was in December. We really thought we were going to lose him for a while.
Harry is now on fentynal patches and morphine for his pain, and clobazam and topiramate for his seizures. The only other meds he has is clhoral hydrate to help him settle at night and medazalam for rescues.
We knew harry was coming down with something before xmas. Christmas day wasnt good for him and by boxing day his sats were dropping and his breathing was becoming laboured. On the 27th, his respiaratory rate was high, his sats were low and he was working really hard. We took him to hospital and he was admitted. At about 2am, the Drs did a blood gas test which showed that his carbon dioxide levels were raised and continuing to rise. The Drs told us to prepare for the worst and to get his Daddy to come to the hospital. It was a horrible time. As we have a no resus plan we didnt want harry ventilated, but he did have iv anti biotics. He was exhausted and the drs stopped his feeds and gave him iv fluids so he didnt have to use any energy digesting food. We were of the mind that if Harry chose to fight then he wasnt ready to leave us, and fight he did. He was in for two weeks. He actually had psudomonas pneumonia.
We have Harry home now but the pneumonia has left its legacy in that He now needs oxygen a lot of the time at home. He is going to claire house tomorrow for a weeks stay.
We had a meeting with his palliative care dr, palliative care nurse, community nurse, and claire house staff. We have decided that if Harry gets another chest infection we will take him to hospital and give him ivs. If he doesnt recover, isnt comfortable or is struggling to much then we will take him to claire house and allow him to slip away. The drs think that he is deteriorating quickly at the moment and his quality of life is not brilliant. We will review our decisions depending on what is best for Harry at the time.
Hiya Emma, Anton and Boys,
If your reading this in Ibiza i hope the holiday is going well. Im sure your drinking too much and the boys are driving you mad. We wish we were there with you. I said i would update the blog so you knew how harry is so here goes......
Harry had a brill nite last night. He kept his SATS up at 97ish with the help of oxygen. When the Dr came in this morning he took the mask of harry and he kept his sats at 93-94 himself. He stayed like this until about 5pm when he started getting tired and his sats dropped again. He now has the mask on his chest with it blowing in his face and this has been enough to pick him up. We will have to see how tonight goes.
I know the nurses on E1 are having a look at the site, so Hello to you all and thanks for all the care and support you are giving us!! XXX
Its Saturday night and Harry has been on oxygen all day. As soon as the mask is taken off his SATS fall into the 80s. If your reading this and dont know what SATS are, it is about the level of oxygen in your blood. Harrys is normally between 96-100. When he has a chest infection they fall to 90-94. At the moment Harry cant maintain his with out the oxygen. He is very congested in his upper chest and he sounds like he needs a good cough to clear things. Hopefully when he has had 24hours of IV antibiotics we should see a difference in him.
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