Operation Day...

Wednesday January 29th, Lyla was scheduled to have a spinal cast made (you may remember from previous post), along with the spinal cast she would also have a hip cast and botulinum toxin (botox) injections in her biceps. 

Now, the whole lead up to the casting was something I had to prepare myself for, it was a big deal; Lyla was going to be plaster cast 'jacket', as such, it wouldn't be able to come off, she wouldn't be able to have a bath or shower, she would have very limited movement, she would be heavier making it harder for me to carry her with my back issues, it would uncomfortable, it would be something that could possibly hurt her, she would be upset, she would be hot, and with her respiratory issues I was expecting lots of episodes.  As well as preparing myself for the procedure, I also had to prepare her therapies around the casting and botox, which was a hassle because she just received funding from NDIA for specific therapies with specific time frames, etc.  For this Lyla needed intensive occupational therapy sessions to make the most from the injections, cancelling hydro-therapy (water based physio) and transferring that section of funding towards extra 1 on 1 land based physio and adding travel so her therapists could resize home seating equipment, we would have to to order new standing equipment, remeasure and order sleep posture equipment and ordering a specialised bed for her.

Early December I emailed the orthopaedic surgeon with some questions I had regarding the procedure, as well as some questions her physio had.  I didn't hear anything from the surgeon, just a receptionist who told me he was on holidays.  Mid January the receptionist emailed me saying another doctor had read through Lyla's notes and my email and he said "casting was a no".  Obviously this was a shock, so I contacted the receptionist (after many confusing emails) and she told me, the hip casting was a no, but the spinal cast would still go ahead like planned.  A miscommunication on her behalf because 'she didn't understand'.  That was a relief.  

Tuesday, the day before the procedure, I received a call from the rehabilitation department asking if I would like to rebook Lyla's botox because the procedure had been cancelled.  I had no idea what was going on, so I was transferred to the orthopaedic department, where I was told by the receptionist that the procedure had been cancelled, and the surgeon was meant to call on Friday, but obviously hadn't.  

That was too much for me; the frustration, the mental preparation, the lack of communication; I had reached my breaking point .  After hours of calling asking for the surgeon to tell me what was going on, he finally called me back.  He said after reading my email, in which I asked what would happen incase of an emergency and she stopped breathing requiring CPR, he decided the cast would be unsafe for Lyla.  A completely understandable reason, but it made me think he has only JUST read my email, and the fact that I was only told, by another department, a day before it was scheduled was really discouraging.  If it wasn't for rehabilitation calling me, would we have just shown up to the hospital the following morning?

So the plan is another GA where a mould will be taken of Lyla's spine and a brace will be made for her.  The brace is removable, but not as effective as the cast, but if she tolerates the brace a cast can be tried, and then surgery down the track.

In the meantime I have contacted a lady who has worked with a orthopaedic surgeon in Sydney who specialises in infantile scoliosis.  I am hoping to hear from him and hopefully be able to arrange an appointment for a second opinion, I just want to know what we're doing is the best thing for Lyla, or if he thinks there is a better option.

Jess

Lyla's Surgery

I have been a bit slack on the updating, yet again... I think one of my last posts was just before Lyla's gastrostomy, which was about 7 weeks ago now, so that's what I'm going to write about :)

After all the stuffing around with Lyla's surgery date, it was finally scheduled for Wednesday, June 5th.  Lyla had to fast from 6am and was admitted at 11am that morning.  She was SO happy, usually going to the hospital is a bad experience for her, but for some reason she was in a great mood.  Her surgeon came in around 1pm to discuss the operation; she would be having a laparoscopic gastrostomy, a liver, muscle and tissue biopsy, and bloods taken for genetic testing.  I asked while they were actually doing the operations through her belly button if her hernia could be fixed - it only seemed right as she has an umbilical hernia and they were going through the site, they may as well just sew the hole back up on the way - he said that was fine!  We took her through to the pre-op room and at about 2:30pm she went in.  The anesthetist said the surgery would take anywhere from 1 - 1.5 hours, plus about 30 minutes in recovery, she would then be transferred to PICU where we would meet her... 5pm came by and I was stressing out, and no one knew anything, soon after the surgeon found us to say the operation went well, they just went really slowly and her liver biopsy took longer than expected, it took 6 attempts, he said her liver looked really unhealthy and discoloured, but he did not know why.  Lyla has always had a really weird liver, obviously no one has physically seen it before, but doctors have mentioned it is quite large and her liver tests have always come back abnormal, this was the reason for the biopsy.

About 6:30pm I was finally able to see her... She was very sad and crying / screaming like I had never heard her do before.  She was hooked up to the machines and had high and low flow oxygen on, but the NG was gone!  It took a while for the PICU staff to work out her medication that night, it was every hour on the hour she would start screaming in pain, but she would react to the stronger opioid, as they would pretty much slow her breathing down to nothing, so it was a long night.  The following day she was having blue episode after blue episode, up until that afternoon when they slowly started giving her some hydrolite, then her formula, it was like a light switch and she was back to her normal self, and surprisingly did not require any pain relief for the rest of the stay!  That night I found it extremely hard to sleep (I was in her room) as her apnoea monitor was constantly going off, early morning I went into the parents room for a few hours of sleep and one of the nurses said, I cannot wrap my head around Lyla and her breathing.... If this was any other person having these HUGE dips in oxygen levels, and the constant apnoea episodes, they would have died, but her body just adapts!  I always knew she was special!

I was expecting to leave on the Friday, but we weren't allowed until Lyla had built back up to her normal food intake, so we were transferred to a ward for another 2 nights.  As soon as Lyla was hooked up to the oximetry monitors they started going off, as her oxygen levels are naturally low, and eventually, after some reassurance (me reassuring the nurses) they felt comfortable, but decided to leave her low flow oxygen on as it kept her above the 92% oxygen level, occasionally.  Saturday came by and Lyla had 2 new nurses, who remembered her from her last hospital stay at 7 weeks old... 'The baby who went blue and constantly required the medical emergency team!'.  Anyways, Lyla continued to scare these 2 nurses with her episodes, lack of breathing, low breathing and "seizures"!  NEVER have I thought Lyla had seizures, and her previous EEG's, though along time ago, never showed seizure activity, but these 2 were so sure she was having seizures they started recording them.  Before leaving for the night, the day nurse begged me to ask the doctors to do an overnight oximetry and an EEG on her, no way was I bringing this up to anyone now, we were leaving in the morning!  Lyla had another blue episode overnight and her night nurse said she wanted to bring in the doctor to give her a look over and know her base line in case something happened to Lyla overnight.  The doctor came in shortly after and she told the nurse to pretty much relax, as I was not concerned about her, and there is nothing she (doctor) can do for Lyla, this is just how she is and she cannot be "fixed".  I was so happy the doctor understood!

Sunday came and the surgeon gave Lyla the all clear to go home!  

...

Since the operation Lyla has changed so much, she is no longer coughing and gagging from the nasogastric tube, she has been making some small noises and loud cries, she is semi-interested in tasting food and will let us put a dummy in her mouth!  She is healing really well, and in about 2-3 weeks her PEG will be changed over to a Mic-Key. 

Jess