Happy Birthday Blakey Boy

28/3/08 Today is Skyla's big brother Blakes birthday. He turns 8yrs old today. Happy birthday Blake. Today i let him have the day off school and i had a day away from Skyla. We headed off to the Easter Show today, just the 2 of us. We had a fun day. We first went and visited all ther baby animals and got to feed them. Blake had a photo with some wrestlers and got to sit on a police motor bike. We played all the show games. Didnt go on any rides though. Blake won a few things for his little sister and we got heaps of show bags. We also watched some of the wood chopping and watched the motor bike and v8s speeding and jumping round the track. It was a really good day. I got sun burnt of course. Blake enjoyed himself which was the main thing. Blake got so many presents for his birthday. He was really happy.

Happy Easter, Off Muscle Relaxant

30/3/08 On easter sunday Skyla was taken off the muscle relaxant and coming along ok. We have got the all clear that she is over the influenza but now she has a urinary infection from the catheter that she had in. They took it out and replaced it with a new one. She also has another infection from the ventilator tube. The infection is called Kelbsiella. They don't seem too worried about that one because she has been in hospital for so long and been on the vent 4 times. They started to give her the meds for these infections. Once they stopped the muscle relaxant she moved within 30min. They didn't think she would move until 5 hrs later. She is so use to all these drugs its not funny. Today we had visits from the easter bunny and the easter princess. We got so many easter eggs.
Blake, Skylas big bro, was very happy.

CPR, muscle relaxed, adrenalin and the flu

18/3/08 Skyla had a very restless night as she is so immune to all the drugs she is on. She started to cough today and they went to do a suction. She ended up splinting her chest. This made her have no chest movement so the vent wasn't able to ventilate her at all. They had to bag her. Her sats dropped to 55%. They had to rock her (muscle relaxant). That was the only way to stop her from splinting.

19/3/08 At 10am today Skyla did it again. She splinted her chest, but this time her sats went to 50 and her heart rate dropped right down to 50. Normal for her is 100-140. We nearly lost her, thankfully all her wonderful nurses and Drs were right there to bring her back. They muscle relaxed her right away. She had 2 hits of adrenalin another drug (not sure of name) to get her heart going. They had to bag her and do chest compressions. She was very blue. It was really close. It lasted about 1min 30sec. She goes down so quick. After all that she was fine. At 12:30 we had to go down to xray so they could put in a bigger size peg in her belly. (her feeding tube) but they are also putting in a jejunal in too. (that goes down to her intestines) That went off without a hitch. An hour or 2 later we found out that she also has para influenza type 1. (the flu) So because of this she will stay on the vent longer as she is struggling a bit as we are trying to wean her of the vent. Later on that night i went off to bed at 10:30. I stay up on level 3 in the hospital. I got a phone call at 11:20pm, she did it again. She splinted her chest. Heart rate 40, sats 60. CPR was performed on her again, adrenalin given and muscle relaxant. Another close call. Lasted 1-2min. This time they decided its best they just keep her muscle relaxed so she cant move. They put her on a rocuranium infusion. They also put in an arterial line so they can monitor her blood pressure and be able to get bloods when needed. I stayed with her all night.

20/3/08 A good day today. Lots of muck on her chest and coming out her nose all the time. Skyla is now having physio about 5 times over 24hrs. Because she is muscle relaxed, she is unable to cough so the physio is there to help get all the secretions out of her chest.

21/3/08 This morning i came down to Skyla. They said she had an ok night. They did have to bag her once as she had hardly any chest movement because of all her secretions on her chest. She had lots of suctions throughout the night and they had to get the physio in at 1am because of hardly any chest movement. Her secretions on her chest are so thick which is why it is hard to suction her. The Drs met today and they plan to leave her muscle relaxed until she is over the flu. She is finding it much harder with the flu, plus she has chronic lung disease. I seen her xray this morning of her chest. It is pretty shit. White all over, even her good lung. It may take a while to clear. By her having chronic lung her lungs will never be great. She is on so much support on the ventilator at the moment. (oxygen 50%, peep 8, Rate 35, pc above peep 28) and to get her off the vent we need (oxygen 21%, peep 5, rate 0, pc above peep 0). So by that you can see how much support she is on. Hang in there baby girl. Keep fighting. We love you so much Skyla, just keep fighting.

LBO, Heart surgery to come

17/3/08 Today Skyla had her LBO. She came back ventilated and i was told that her right nostral was narrow but everything else was fine. She is currently in ICU. She came back to ICU on Saturday 15th march as she kept desating. The Drs seem to think now that they ruled out other problems with with the LBO, that it might be her heart that is causing her to desat all the time. Skyla has a small hole in her heart which may now have to be fixed. She is having a heart echo today and they will discuss it at a meeting tomorrow at a cardiac meeting. We will learn more then. If she does need this operation, this means open heart surgery for my little . She is so strong, i just hope she can keep fighting. If they can fix the heart and she comes through great then all we have left will be her cleft palate repair. At the momment she is on the vent , but she is fighting the sedation. She is immune to the morphine and midaz and its just not sedating her. The added in some presedix to see if that will help but if it doesnt they may have to just extubate her. The reason they are keeping her on it, is because her lungs are wet and very patchy at the momment. They are trying to rest her little lungs.

Quick update

Sorry for not updating sooner. Will give more details later. Skyla made it to the ward on 5th March. That night she pulled out her gastrostomy tube in her belly again. So they are now feeding her NJ into her intestines. Her gastrostomy is on free drainage. She has been doing lots of gagging. Lots of desating (lowest 46%sats), lots of temperatures, at least one a day. Next week she will go back to ICU for a day or two as she is going to have a LBO. Thats where they put a camera down to check out her airways. That means another general and back on the ventilator. They are hoping to extubate right after the procedure is done. But like the Drs say, it is Skyla so she may come back vented for a few hours only hopefully. Will try and update again soon.