Another Infection

30/5/08 Over the last few days Skyla has been having lots of temperatures. Mostly In the high 38s, the highest has been 39.7 They think she has another infection. We have done cultures, wee samples, trachy swabs but nothing seems to be showing up. On Monday her sats dropped to 50% and wouldnt come back up so she had to be bagged. A few hours later they were 47% but come straight back up without being bagged. She has heaps and heaps of secretions too. As she is nearly impossible to get a central line into her they decided to just go with a iv cannula. She had one in her foot that lasted 1 day and yesterday they put one in her hand. She has been started on vancomyson and cefotaxime (not sure of spelling). They cover a range of things as we are not sure what we are up against again. Just when things are going so well, she goes down hill again. Its one huge roller coaster ride that we just want to end. When we find out what she has i will update as soon as i can. Thank you for all your prayers. Please keep them coming as Skyla really needs them again.

Having a great week

25/5/08 Skyla has had a really good week. She has been having lots of physio, occupational therapy and music therapy. She has also had visits from the clown Drs. She is smiling all the time which makes me so happy to see. Yesterday she had her 6th month immunizations which she wasnt impressed with. She only cried a bit. She is so brave. That night she did play up a bit. Her sats dropped a few times and she was working really hard. She also had 1 temp of 38.2. They did a chest xray to make sure she there weren't any changes in her little lungs. It did show that her right lung was a little bit more wet than before. The drs put it down to the immunizations though and her wet lungs because she has been pretty positive with her urine output. Nearly every day she is at least 200 to 350mls positive. They have been giving her lasix for that. They dont seem to worried as she isn't puffy at all. I have been starting to watch and learn about the trachy. I have held the trachy during tape changes. They have to be changed everyday and the trachy gets changed once a week. Not to keen on doing that yet. It is scary. She also has a big granulation of skin at the site. It looks pretty gross. I think ill wait til it heals a bit more. Today i started giving her her medications and i also did my first suction today. I was so nervous but it wasn't as bad as i thought it would be. Her vent settings at the moment are O2 30, peep 6, rate 15 and pc above peep 6. She doesn't really need her rate as she is breathing well above it. I am hoping they turn it off this week and then she will be on cpap pressure support. The Drs still think she will be on the vent for 6mths or so. I don't think she really needs it for that long, but its just that they want her to grow and get stronger which really will be the best thing for her in the end. With her having that extra support too it will really help her to grow. I just want her well so that she can come home. I haven't had the chance to really enjoy being her mummy and doing mummy things. I dont get to sleep next to her as you are not allowed to in ICU and she has been in ICU for about 28wks of her life and probably another 6mths to go in ICU so it is really hard. I cant just pick her up when i want to either, i have to ask to pick up my own daughter and because of the vent tubing i need someone to hold that when i do pick her up. It is so hard for me and my family. She has only ever been outside once, and that day it was Christmas day and just before we walked outside she decided to go to sleep. It was only for 10minutes but thats been her only time outside. It is so hard, not being able to do normal things. We weighed her last thursday and she was 4.98kg. She is still in newborn nappies and also still wearing 000 clothes at nearly 8mths of age.

Our little princess

16/5/08 Today Skyla had a EEG done on her head. They just wanted to make sure that everything is ok and that there is nothing major going on. She kept waking up through it so it did take a little while to complete. She did eventually fall asleep after a little while. I was very nervous waiting for the results, they said they would be back at 4pm. Anyway the results came back and everything was fine thank god. One less thing to worry about for now. They Drs and nurses still cant believe how great she looks. One nurse said she must have 9 lives. My little girl isn't planning on going anywhere. She has fought this hard, defied the odds. She doesn't plan on giving up without a massive fight. She is a true battler. Keep fighting on my darling. We will get there in the end, it is going to take a few more months but the time will come when you will finally come home so we can be a family all together. We love you so much Skyla.

First bath with Trachy

15/5/08 Today Skyla had her first bath since her trachy. She loved it. Its been a pretty long time since she had a proper bath. I think she has only had about 4 since Febuary because she has been so sick and her pulling out her peg twice we were unable to give her a bath. (Just so you know, she did have lots of bed baths. Nothing beats a real one though.)

Getting better

Over the last few days Skyla has stopped dropping her heart rate. When asleep it now sits around the 90s. Im so relieved. She just keeps on improving. It is fantastic. She is smiling all the time now. Its so hard to get a photo of her smiling because everytime you go to take a photo she looks at the camera and stops smiling. Its only a fluke that we got the picture above. Im so happy to see her looking so much better and she is so happy all the time. She is still on alot of sedation so she is still pretty sleepy. So when she is awake its not for very long. Sorry i havent updated in a while just been abit nervous leaving her. Thanks for all your support, especially all of Wyatts friends and family. It really means alot to all of us.

Having a rough time again

11/5/08 Since her last arrest Skyla had been going really well until mothers day. Today she started to get very agitated throughout the early hours of sunday morning. They had to give her a dose of diazapam to calm her down. that didnt work so they gave her some clonidine. She was still very agitated so they decided to give her a bit more diazapam. She finally went to sleep but then it all hit her at once. She was dropping her heart rate right down again. Heartrate of 60-85. She is so immune to all the meds so they end up giving her more and more but then she gets too sedated. All her other sats have been good. Her gases have been great. Its just her very low heart rate and the fact that she is so agitated. She is still not out of the woods yet. The Drs and nurses cant even believe she is still here with us. They really thought they had lost her. Please continue to pray that Skyla can continue on fighting so that she can come home one day soon. I am very worried about her low heart rate. Im worried it will get too low and arrest again. We cant afford for that to happen. Her little heart still needs to recover from her other arrests. Her liver is improving too which is fantastic news. Thanks again for all your support and prayers. I will try and update again soon.
Kristy, Joe, Blake and Skyla

Our Little Fighter "SKYLA MANAWA TEMAIPI" Look at her NOW!

GO SKYLA GO!!!!!!!!

The 1st pic is when her left lung collapsed after trachy change. You cant even really see it at all. The 2nd one is about 15hrs later. As you can see her lungs are pretty crappy. Alot of scar tissue. Atleast her lungs can improve in time, well at least until she is about 8yrs old

9/5/08 Yesterday afternoon Skyla had a head ultrasound and a liver ultrasound. This showed that her liver is a bit damaged from the arrest but the Drs have started her on some medication to help it to recover. They are hoping it will only take days to a few weeks. They also found on her head ultrasound that her ventricles are dilated a bit. They will look at her old ultrasounds to see if there is much difference and they also said there is a small collection of something on top of the brain at the front. They wont really know much more until she really wakes up and we see how she is. Im sure that they will do a head ct scan once she is more stable. I just hope there is no permanent damage done. Yesterday afternoon they also did her first trachy change in ICU. It went ok but her left lung did collapse as they did it. They have since given her some physio and she is laying with her left side up. After her trachy change they stopped the muscle relaxant so that she could wake up. It took about 1 hour for her to wake up. It was so good to see her eyes again. The only problem we are having with her at the moment is her heart rate. It is sitting so low. Its ranging from 90-60. It has hit 59 once. They gave her some meds to speed it up a bit but it didnt last long. The drs dont seem really worried as her sats and her BP have been very stable so it isnt compromising anything else. Its still very scary though. I dont like it when its that low . She went back to sleep cause she is still on alot of sedation. I went off to bed last night at 10pm. I rang a few times through the night and they said she was really good. I was so happy. I came back down this morning and they told me she has been wide awake, alert and even following the nurse with her eyes. That is a great sign. And in true Skyla style, she even managed to disconnect herself from the ventilator and grab hold of her peg. My Skyla is amazing. I just hope and pray that things will keep on improving from here on out. I just want to thank everyone for all their love and support for Skyla and our family. It sure seems like it is working. We just have to keep it up and for Skyla to keep on fighting. The Drs have said that we aren't out of danger yet but things are certainly looking alot better.

Love Kristy, Joe, Blake and our little fighter SKYLA

Our little fighter just keeps fighting on

8/5/08 I left Skyla last night at 11pm. I didnt want to but i was so exhausted. I was still at the hospital just 2 floors above Skyla. I rang down at 1am, 4am, and 6am. She was being really good. Her sats dropped a bit and they had to bag her twice because of secretions in her trachy but other than that she had a really good night. I came back down to her this morning a 630am. Still improving which is great. She even opened her eyes again this morning. She just keeps on surprising everyone. The nurses didnt expect her to be here when they came in for the night shift last night. They couldnt believe how well she looked. I just got told that the Dr rounds are over so i better head back up now to see her. She may have her first trachy change today and may even be stable enough to go to theatre's. If thats the case then after that is done they will be able to take her off the muscle relaxant so she will then be able to wake up. My social worker just told me that the Drs cant believe how well she is doing. That just made my day. I know we arent out of trouble yet but she just keeps on proving to everyone how much of a fighter she really is. Im so proud of you darling. Im so proud that you are my daughter and just remember that we all love you very much and everyone out there is praying for you.

3 Arrests in 24hrs, Drs dont think she will make it

7/5/08 The Drs think Skyla is in septic shock. They really wanted to take her central line out because they think that its the line that is causing all the problems. They have tried and tried to get lines in to her little body but all her veins are had it. She also has pneumonia on the left lung and another infection in her trachy. Over the last few days they have probably tried heaps of times to get a line into her. Over the last 24 hrs she has arrested 3 times. Her last arrest was at 6am this morning. They sat down with us and pretty much told us that she isnt going to make it. I am devastated. They say that they will do everything they can to save her but the more she arrests the more damage it is doing to her little body and the harder it will be to bring her back if she arrests again. Please pray for my beautiful little Skyla. After her 6am arrest she has had a pretty good day. Her BP has stayed up and her sats have been ok. She is on alot of support on the vent. O2 70 peep 7 rate 35 and pc^peep 18. At about 4pm today a guy from radiology department came up with his ultrasound machine to see if they could find a vein for a new line. We had SUCCESS! They were able to get a line in so that they can take out the one out. I was very happy. She is on so many antibiotics at the moment trying to cover the infections. Tonight she opened her eyes for the first time in about 5days. She has been muscle relaxed because she has a new trachy. She seems like she is much better already. The Drs were happy they got a line in but have told us we are not out of the woods yet. We just have to keep praying that Skyla continues to keep on fighting. The way she has done already she aint going anywhere without a fight. You are so so strong darlin. Just keep fighting. We love you hunny.

Not doing so well

6/5/08 Yesterday Skyla started to drop her BP. Her normal map for her is between 51-90. She was sitting in the 40s then dropped to 33. As they went to give her some albumin her pressure dropped to 27. Her heart rate went right down to 43. They had to give her adrenalin again and did cpr on her for 2minutes. she come back up in all it lasted 4minutes or so. They did a chest xray which showed pnemonia on her left lung which is her bad lung. her tracy has also grown a bug but they arent sure what it is yet. She did it again at 3am. Dropped her BP. They gave her more albumin. This works for a little while then it seems to keep getting lower. Today she was meant to go to theartres for her trachy change. They have decided she is too unstable to leave ICU. They will do it in the ICU instead. They have warned me cause she is so sick at the moment that it is dangerous and if they cant get a new trachy in they will have to close it back up and intubate her orally. Please pray that everything goes to plan as i dont know how much more her little body can take. She is still 4.4kg, about 9pound something i think and she is nearly 7mths. Hang in there my beautiful little . We love you so much. You are such a brave little baby . Keep fighting hunny.

Tracheostomy

1/5/08 From 430am to 12 30pm today Skyla has been wide awake and thrashing around all over the place. They upped her morphine from 20 to 50 and her midaz from 2 to 5 but it seemed to do absolutly nothing to calm her. She is immune to everything. At 1 30pm today Skyla headed off to theatres for her trachy. I was so scared as this will be her 5th general anesthetic in 6mths. Her last one she went blue 4 times in theatre, so you can see why i was scared. They told me it would last 1 to 2hrs. The nurse came up to me at 215pm and said she was already ready to be picked up. They said she was fine and it went well. That was the best news i had all day. My baby was ok. We headed straight down to get her from theatres. We could finally see her face. No more tubes, nose prong oxygen, masks or anything. Just her pretty little face. Once back in ICU i had to wait about 20min or so until i could go in to see her. They had to fix her up a bit before we could come in. It didnt look as bad or scary as i thought the trachy would be. Im still very nervous about it as having a trachy will now mean she needs 24hr care. Thats even when we finally get to take her home. I know its not forever. Just a year or 2 as long as things go the right way, then she can go on to live a normal life without it. It could even be sooner rather than later. At least she now has a permanent airway, so if she does get sick once off the vent, all we have to do is hook her up to the vent again and there is no hassles of having to intubate her all the time as the airway is already there right away. Other people have told me that this is probably the best thing for her. She wont burn up all her calories just on breathing. She can gain more weight and get stronger which gives her lungs the best possible chance to improve which is what we want.

200 days in hospital and intubated again

30/4/08 Today is Skyla is 200 days old, thats 200 and all in hospital. This morning a 6am Skyla started another one of her episodes. It lasted quite a while. She was blue and mottled. Sats in the 50s. She was on 100% oxygen, they bagged her but they couldnt get her up past 75%. That was it, it was time to reintubate her. I was a mess as i knew that this means Skyla will now have to have a trachy. But if its the only way for my daughter to get better, its what we have to do. They Drs rang the ENT people to see when she can have her trachy. They have booked us in for tomorrow. We dont have a time yet as they are squeezing her in. Our Dr told us that he expects Skyla to be on the ventilator for atleast 6mths, probably in hospital 1 to 2yrs they reckon. I was in shock when he said that. I couldnt believe it. But if we want her home thats what we have to do.

Finally Extubated

28/4/08 Skyla was finally extubated today. It took alot longer than expected as her xrays have been pretty shocking. There is alot of scar tissue all over her lungs. The Drs have said that if she needs to be intubated again she will have to have a tracheostomy which is the breathing tube in the neck. This is because her lungs are really bad as she has chronic lung disease. The Drs think will happen really soon.
29/04/08 Today Skyla had a pretty good day, she had a nice bath and we weighed her. She now weighs 4.4kg. Not much of a gain but considering how sick she has been, she did really well in that respect. She is still on the cpap mask. She did have one episode of desating today. She dropped to 59% She come up pretty quick luckily her little episode only lasted about 10min.