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.