A blog about having a child with PHPV or PFVS

A blog about having a child with PHPV or PFVS

Persistent Hyperplastic Primary Vitreous

also known as

Persistent Fetal Vasculature Syndrome

and micropthalmia (small eye)

Our experiences with 3 surgeries, 2 EUA's, patching, contact lenses, scleral shells, prosthetic eyes, emotions, places to get support, links to other sites and general info on vision impairment. I really hope my blog helps and educates and I would love to hear from you with any questions you have, or even if you just need to talk to someone who has "been there, done that".


Perth, Western Australia

Monday, July 5, 2010

The day after surgery

We (Joel and I) got to the hospital yesterday just after 11 and checked him in at admissions. We headed upstairs to the surgical day procedure unit and waited until just after 12 to be taken in. In that time I fed him as much as I could but he was so distracted by all the people walking around he wouldn't take much so I was just hoping it would be enough to see him through til at least 3. The anethetist came to get us and we went through all his paperwork. I told her about his cough and cold so she listened to his chest for a while, gave him a once over and said she was very confident there'd be no issue, she's been doing anesthetics for over 20 years and only ever had one unexpected reaction to a GA and that was an allergic one. She spent a really long time with me and Joel, just talking about what could happen, the risks, how likely it is for his cough to affect anything. I was very reassured by the end. She also checked with Dr Lam and he was very hesitant to put of the surgery because Joel's eye has already turned out quite a bit to the left and leaving it would just make that worse. So I signed the papers and it was all set to go.

The nurse came to get us and we weighed him (7.9kgs) and tried to get a length of him but he was so squirmy we got a very rough guess of 72cm. I needed to go to the toilet so I asked the receptionist if there was anyone who could look after him for a second and about 5 nurses suddenly appeared saying "I'll take him, he's sooooo cute!" So he was fine for a while! He kept laughing at them and smiling, I was getting really sad, I was just thinking the whole "why him" again, he's such a happy little boy, why can't he just be well.

At about 1:30, Rich rang to ask if I wanted him to come up to the hospital. I said yes because Joel was really tired and wouldn't sleep with me, he just kept trying to feed so Rich came and as soon as he took him, he fell asleep. He was so cute and chubby. He was wearing a little yellow surgical gown and I was reminded again how yellow is just so not his colour. He just curled up on Rich and stayed that way for about 10 minutes until the nurse came to put the dilation drops in his eyes. He wouldn't go to sleep after that so we just walked him around and showed him the pictures on the walls and told him he's such a big, strong, brave boy and he's going to be fine.

At about 2:15 he fell asleep again. At 2:20 they came to put the second lot of drops in his eyes. The poor little thing, He wasn't happy at all at being woken up a second time and just screamed. His right pupil was getting pretty big but I noticed the left one (PHPV eye) wasn't.

At 2:45 they came to check and said that they'd have to put more drops in the left one, it just wasn't dilating so they did that and he fell asleep again.

Surgery was booked for 3, so at 3:30 I was starting to wonder what was happening, Joel was starving by this stage (last feed was at 11:45) and Rich kept asking me "what's happening? what's happening?" As if I knew. I knew as much as he did. He said he was going to get coffee and as soon as he left, the nurse called out "Joel". I carried him through to the surgery room and the Anethetist came in and told me what to do, how to hold him while they put the little mask on his face. Last time I couldn't go in there, I think partly because he was so small and partly because I was an absolute mess at his first surgery. I sat him on my lap, facing away from me and held his arms while one nurse sat in front of him and another nurse sat by his side holding him. He struggled a bit when they put the mask on. The Anethetist was singing Twinkle Twinkle Little Star and I was saying "it's ok baby boy, mummy's here, it's ok, mummy loves you. You're my big strong man, you're mummy's good little boy". I was almost crying, almost. He went so floppy, I didn't know he would go that floppy and he felt so heavy it was so good the 2 other nurses were there because his arms and legs just flopped out to the sides and it was hard to lift him up onto the bed. Once he was on there they quickly shoo'd me out of the room and I sat down and waited. Rich left at 4 to go and get Annalise.

Just before 5 they called out "Joel's mum" and I could go in to see him. I could hear him before I saw him, this deep, sobbing cry then as we got closer it went into an hysterical cry and he was bright pink all over. He had blood stained tears running down his face, soaking up the gauze pad they'd put over his eye. There was SO MUCH BLOOD. Last time there was none, this time there it was just everywhere. It had run down his face and was on his arms and in his ear. The nurses were struggling to get the drip out of his arm, he was thrashing about then losing strength then trashing again. Finally one of them said "just leave it". I don't think they knew I was there. My poor little boy. I was saying "hi baby, hi baby boy, mummy's here little man" and he was trying to look at me with his one eye but he couldn't focus and he was just screaming out. I sat down with him and offered him the breast and he calmed down. He had a little feed then started to cry again so I was singing to him and just telling him "It's all done now baby, it's all over". He went back on the breast and stayed there the whole time they were doing his obs. His blood pressure was a bit high and they said they had to give him a bit of oxygen but otherwise he was fine.

The surgeon ran me through the op. The tried to remove as much as the plaque or scarring as they could but there was a lot that was just too solid to remove. The have created a hole in the scarring that covers his pupil so he "should" be able to see through that hole. When they were trying to remove some of the more solid scarring, they pulled some of his iris away so he has 2 stitches in his eye now. They put something called TPA in his eye to try to stop the scar tissue from coming back, so again, we just wait and see what happens.

We went back to recovery and just sat there quietly feeding for ages. We were the last ones there. The blood was starting to dry up and I was cleaning it off his face and arms. I was touching his whole little body and saw that they'd tried to put a drip in both his feet and both his arms and had finally settled on the underside of his right wrist, so he had all these little bruises on him.

At 7:10pm they said we could go home. I put him in his pram and as we were going through the underpass he looked up at me and smiled and oh, the love I felt for him just then! My brave little boy with his big patch on his eye and drip and bandage on his arm and his little bruises, and he could STILL smile! He is my best boy.

We got home and I sat on the couch and fed him for a while until he fell asleep. I put him in bed and finally ate something. Once I had the chance to actually breathe out I realised I was starving. I felt like I had been holding my breath all day.

The night wasn't so good, he would only sleep laying on my shoulder if I was sitting up. If I laid down with him he would just cry and cry. He had 2 lots of Panadol. I don't know how much sleep he got, maybe 5 hours. We have 2 lots of drops again, one to go in every hour and the other every 4 hours. He probably won't be able to wear his lens for another 2 weeks.

So that was his second surgery. At the end of the day, it's done now we just wait anad see again where this part of his PHPV journey takes him.

He is such a brave, amazing, strong, cuddly and gorgeous little boy. I know he is going to be amazing no matter what. I love him more than anything in the whole world, he is my little angel.

1 comment:

  1. You are such a brave, amazing, thoughful mum, one of the best and strongest that I know. Joel, you, Rich and A will get through this. He is such a beautiful sole, such a strong little man. My thoughts are always always with you xxxxxxx