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.

Ventilated Again

16/4/08 Skyla had a hard day today trying to keep her sats up. At 8am she dropped them to 60% and had to be bagged. The Drs got her back up but her sats dropped down to the high 70s low 80s. She was on 100% oxygen. This went on for a little while then they decided they would ventilate her. As soon as they came over to intubate her she bought her sats back up to 90. She must have known what was about to happen. At about 2pm, she started to cough heaps and as the nurse went in for a suction, she just dropped. Down to the 50s. They bagged her but couldnt get them above 70%. It was time to intubate her. The went to intubate her orally first but as they did it she wasnt quite paralysed enough which then cause her heart rate to drop into the 50s. They had to give her adrenalin and perform CPR on her again. They did chest compressions for about 20 seconds then she was fine again. Once they intubated her through the mouth they swapped over to the nose. After it was all done i was allowed back in to see my beautiful little Skyla again. Back on the ventilator, her 5th time in 6mths. She was back on the midaz and a high infusion of morphine. Later on that night they put another central line in her neck again.
17/4/08 At about 2am Skyla became very unsettled. They bolused her heaps of morphine and midaz, they gave her diazapam, vallergan and chloral hydrate and she was still fighting. Her sats dropped to the low 80s and went blue and mottled. They ended up having to muscle relax her. This seemed to work. Today she had a really good day. Alot more settled, which was great. They did a ultrasound today just to make sure she hadnt reherniated again. She hadnt but they did notice a tiny defect on the right side of her diaphram. They arent concerned as the liver is right up against it so nothing can sneak through the hole as the liver is blocking it. I was concerned that the liver would go through but they said there was no chance of that as the liver is a huge solid organ and the hole is tiny. Hopefully she has a great night tonight and is over the worst of the RSV. The photo of Skyla with the guys are some of the guys from Sydney Roosters Rugby League team.

RSV

14/4/08 Today Skyla had a MPA done to see if anything showed up. It did, she is RSV positive. So now we have this chest infection to fight off. Today she had an episode of desating again. She was blue and working very hard. They had to take her off bubble cpap and bag her for about 15 to 20min. It took a while to get her sats up again but once they did, they put her on the vpap machine. It seemed to settle her and calm her for a while. All her s came back fine, which was good. The Drs said RSV normally lasts about 10 to 14 days. The kids tend to get worse before they get better. I just hope she doesn't get that bad that she needs to be ventilated again. They lost her results from a renal scan she had last week. We are hoping to get results tomorrow so we should find out what the little mass they found in her abdo was. They are still thinking gallstones. I just hope she doesn't need anymore operations. Will update soon.

Back In ICU again

12/4/08 Skyla had 3 episodes of desats this morning again. Lasting 20 to 40min each. ICU came in to review her but by the time they came in she was perfect again. (as usual) At 905pm she started to desat again. The Dr was called and she was given some chloral hydrate 30min into it to try to calm her down. Ihr later and still desating, the Dr went to ICU to let them know what was going on. By the time they came in it was 1 1/2hrs later and still going. She was working so hard, mottled and her lowest sats that i seen was 48%. She was wheezing too. They called for a mobile xray of her abdo and chest. They gave her a nebulizer through the mask. After the xray was taken and they went to remove the xray board from under her. As they lifted her up her sats dropped to 53% and had very little chest movement. She had had enough and was too exhausted. They thought she was ready to arrest at any moment. They started to bag her and get her straight to ICU. On the way to ICU her sats stayed in the 70s. They couldn't get them up. Once taken to ICU she was put straight on bubble cpap. It did take a while but they eventually got her sats back up in the 90s. She calmed down a bit and was beginning to settle down finally, but then her prongs in her nose from the cpap came out so she stared again. I think the lowest her sats went this time were 59%. They thought it best just to bag her to get her back up before putting her back on cpap. It took prob another 10 to 15min to get her back up and back on the bubble cpap. Her chest xray showed more patches on her right lung. (that is meant to be her good lung too) She then spiked a temp of 39. They think its another infection. they think its probably RSV .
13/4/08 Today Skyla is six months old. HAPPY 6MTHS BABY . She had a good night, they said when i came down this morning at 6am. Temperatures all night though, but otherwise she was pretty settled. Today she was ok. She started to gag a bit again and every now and then her sats would drop a bit. I think 80% was the lowest today. We would just have to give her a bit more oxygen, and then her sats would come up again. She is still working pretty hard, recession and a tug.. She has been sitting in the low 90s all day. Normal for her is the high 90s. She had cultures today but still waiting for the results and they will do a MPA in the morning to see if she has caught RSV or anything else.

The Ward, and no right clavical bone (collarbone), More desats

8/4/08 Today we went to the ward as she is doing really well. No desats or anything, it was great. I also found out today that she has no right side clavicle bone. Its the right side of her collarbone. After all her xrays (over 115 mind due and 6mths later) they finally realized she didnt have that bone. They dont seem to know what this means. Whether she will be able to crawl or not as it gives her arms the strength. So i guess we will just have to wait and see. She does use her arm but i did notice that she does use her left arm more.
11/4/08 She had been doing really well until today. She started doing her gagging again. She had 3 episodes of desats today. Went mottled and dusky. At one stage we couldnt even pick up her sats on the monitor as she had shut down abit. The first 2 went for 30-35min and the last one went for 25min. They called ICU in on her again but by the time they came in she was ok again. If she does it again im pretty sure we will head back to ICU. Skyla had a abdominal and chest xray today too. They said her lungs are still the same, (crappy) but the also noticed a small mass. They are not sure what it is. They think its either a clot or maybe a gallstone. They are not sure but will be looking into it. I just hope its not a tumor or something like that. They will prob do a ultrasound on her belly tomorrow hopefully. Like I've said before, its one thing after another. I just hope no other mysterious things pop up on her. The Drs are even scared of her as they dont know whats gonna pop up next. Please baby girl, NO More please. The photo above shows no right clavicle. Skyla and her big brother Blake and 2 pics of our little fighter Skyla.

The Toughest Little Girl Around

SKYLA MANAWA TEMAIPI

A FIGHTER FROM BIRTH

Born at 34wks weighing 1.7kg (3.7 pounds)

Coarctation of the aorta repair (operation 1)

Congenital Diaphragmatic Hernia repair (operation 2) (stomach, spleen, small and large intestines, and part of her liver up squashing left lung)

2X episodes of Necrotising Entercolitis

Chronic Lung Disease

Pulmonary Hypertension

5 infections

Severe reflux

Turns blue everyday

Gastrostomy, Fundoplication, tongue tie release, lip tip release (operation 3)

LBO procedure (camera down to check airways)

2 Cardiac Arrests

4 general anesthetics

8 blood transfusions

7 or 8 central lines

Heaps of needles

Cleft palate (to be repaired soon)

Small VSD (hole in heart) (repair in future)

over 115 xrays

Influenza

Urinary infection

Thats everything my brave little girl has had to go through.

You are so brave Skyla. We love you so much. I must have the bravest little girl on earth. Keep fighting along baby girl. You'll be home with us very soon.

Skyla Manawa Temaipi 5mths & 2wks

As you can see by these pictures, she is still very little. Nearly 6mths old, weighing in at 3.8kg. Still the size of a newborn, but she is the toughest little girl around.

Extubated and on cpap

1/4/08 Today Skyla was extubated at 12pm. She did really well. They put her back on the cpap mask that she absolutely hates, but so far seems to be tolerating it well. I think its because she is still on midaz and morphine. She doesn't need those drugs but they cant just turn them off or she'll get withdrawals from them. So we just have to wean her a bit each day. The morphine i bet will take weeks to get her off. I got my first cuddle today in 15 days. I was so excited. I missed it alot. We weighed her today and she has lost so much weight. She did weigh 4.1kg, now she weighs 3.8kg. That was my sons birth weight and Skyla is 6mths in a week. I just hope she can move forward now that she is over the flu. It really took a lot out of my little darlin.