Pre Op November 2014
19 December 2014This was prior to going into theatre for a gastrostomy, nissen fundoplication and the removal of Brennagh's Hickman line.
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Fundraising for Brennagh and family
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Brennagh Playing with the Clown Drs
19 December 2014This was filmed post op November 2014 at Wellington Children's Hospital. Ward 2.
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Placing the Naso Gastric Line
10 December 2014Placement of a naso gastric line is something I was taught to do when Brennagh was under one.
After her first gastrostomy at 3 years I didn't have to do it again until Brennagh came home January this year.
It became a two/three person job as she grew bigger. Sometimes it would take four/five nurses to do it.
We're not in a hospital environment and so we work with what we have.
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Apologies for not updating sooner.
10 December 2014Hi everyone, my name is Kathleen. I am Brennagh's mum. I would first like to thank you all for your support. It's greatly appreciated by myself and my family.
I wanted to let you all know Brennagh has recently come back from Wellington Hospital.
She has a new gastrostomy tube put in and her nissen fundoplication redone.
She had a prolapse one week later and had to go back to theatre to have it repaired. We were able to come back home and we're pump feeding again whilst being vented 24/7.
While it is quite a feat nursing her at home there is no place like home and I couldn't be more grateful to the surgeons in Wellington again.
It was an emotional experience going back to Wellington Children's hospital. After spending 6 months in there we have made some close friends down there. In a strange way it was lovely to see everyone.
I also wanted to invite you all to Brennagh's facebook page that Jackie kindly made for Bren.
Fundraising for Brennagh Mckay.
We have so many wonderful pics over there we would love to share with you.
Brennagh's journey has also allowed me to speak at two of Ronald McDonald House Supper Club Events. I was able to take Brennagh along to the Palmerston North one. It was my way of being able to give something back and we had a fantastic time with many fantastic people.
Brennagh was dancing with Ronald McDonald and we ot to meet the surgeon from Palmerston North whom originally saved Brennagh's life when she lost 3/4's of her bowel.
Having Trisomy 18 was one thing but having Short Gut Syndrome on top has taught me to be very proactive and vigilant in Brennagh's medical care.
She really is an unusual case.
Again I would like to thank you all very very much.
Kind Regards
Kathleen
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Update for 23/01/2014
23 January 2014I am so happy to announce that Brennagh and her mum Kath are home discharged today..Brennagh is doing good and looks so well and happy to be home with her family... still has a journey to carry on with, with ups and downs along the way and more visits to the hospital but they are home of being in hospital 6 months to this day. I will keep updates on how Bren is doing and how life has changed after the last 6 months... one amazing strong wee girl. you can also see regular updates on brennagh's facebook page https://www.facebook.com/pages/Fundraising-for-Brennagh-Mckay/559844377386765
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Update for 20/01/2014
20 January 2014Firstly i would like to apoligise for taking so long with an update for those of you's following Brennagh. In the last few weeks Bren has had her big surgery and all went rather well considering Bren has done nothing but fight to survive against all odds she certainly has had a few ups and downs but has come through..Bren had a few leaking issues after the op so went into surgery and had her peg taken out and stitched up later this year she will have more surgery to get a new peg done. But the best news is Brennagh is looking at being transfered to palmy (15 min from home) this week, she will be in palmy while they sort her feeding out as she will be on ng (nasogastric) feeding and possibly still might need TPN (iv feeding) and hopefully Bren's stay in palmy wont be to long so she can go home to be with her family. It has been a long 6 months for Bren and her family a real rough journey and its still not over by any means but so much closer to coming home... i will enjoy going back to work and being with Bren nearly everyday... Brennagh is such a trooper and a fighter one amazing wee girl.Now i really wanna try make this holiday happen for this family as time with bren now is even more precious . For more detailed updates and more pictures of Brennagh take a look at the facebook page i set up for Bren here is the link to it https://www.facebook.com/pages/Fundraising-for-Brennagh-Mckay/559844377386765
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Update for 28/10/2013
28 October 2013an update on Ms Breenagh from brennagh mum, Thursaday night turned into another...I'm not sure what to call it here in public but Brennagh was overdosed yet again...this time 9 hours of lipids/tpn was put through her IV in just 3 hours. Then she was horribly burnt with gastric acid, and then IV paracetamol was administered. We don't use Pamol or Paracetamol because of the elevated enzymes level in the liver. Thank goodness I was able to get back on the ward and show everyone including the house registrar how to fix the burn and alleviate Bren's pain. Sometimes I really have to wonder. Also While I'm speaking about our ordeal, Bren had an unknown internal bleed from her PEG and no one bothered to explore that. The surgeon left in charge word were, ""not my kid, not my problem, the Prof will be back Tues, he can deal with it"". Suffice to say I can't wait for the Prof to return tomorrow. This time heads will roll. I'm also pleased to say through out this ordeal Brennagh has coped remarkably well, her mother, not so much but I'm good now. Was so glad dad was able to step in and I spent time with my boys.
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Update for 20/10/2013
20 October 2013Today Brennagh weighs 17.8 kg! This is a bit of a surprise as we had to cut her lipids/tpn (food) in half a week ago as her liver enzymes were high, a side effect from tpn feeding. This means at this point she is managing to take 20 per cent plus of her required calories through her PEG which is good news. Brennagh's bilirubin levels were high also, which may have been related to the blood transfusion she received, also another side effect but these are dropping too. These levels also affect the liver. Anyway, we are now waiting for Brennagh's albumin level to rise to 30 so she is strong enough to have the final surgery of putting her insides back together and reversing the ileostomy...and from there we take one step at a time. At the moment Bren's albumin level is sitting in the low 20s. Albumin helps with the rate of wound healing so it's better to have high albumin with major surgeries. Bren's surgery will be approximately 6 hours and I won't freak you out with details.
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Update for 01/10/2013
1 October 2013Hi Everyone, thought I would post an update. Our October op has been put off until November now. The Dr's say her body isn't strong enough yet. Right at this moment she is having a blood transfusion. Bren hasn't been able to get her haemoglobin above 70. Also her albumen levels are too low for surgery. Ideally we want to be at 50 but we're sitting at 23. In saying that it's alot higher than it was 2months ago and we're not in a coma or on life support
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Update for 19/09/2013
19 September 2013Brennagh went into theatre yesterday to have a Hickman line put in now to heal and get strong for the next big op..it's time this wee angel had a break she has already been through so much
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Update for 11/09/2013
11 September 2013Brennagh had surgery this arvo had a stoma revision which resulted in doc rebuilding her stoma and ended up removing bit more of her intestine that wasnt looking to good... now let this little wee girl heal and rest so she can build up strength for the big surgery to come
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Update for 04/09/2013
4 September 2013Surgery looks like its going to be brought forward ... instead of the 9th of October it will now be 11th September hopefully this well sort out out whats going on
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Update for 31/08/2013
31 August 2013Not much has progressed medically in the passed two weeks. In fact wefve taken a few steps backwards but throughout all of it Brennagh has managed to remained relatively happy and taking all in her stride.Two weeks ago Brennagh ended up with a PICC line infection, well not one, but four!! This really knocked her back as she had contracted a staphyloccocus bacteria, streptoccocus infection, a yeast infection and a variation of the staphyloccus infection. She was treated with triple antibiotics, her tpn feeds were stopped and her PEG feeding was stopped. At this point she was sustained with maintenance fluids and paedialyte. Over the weekend Brennagh also lost two other lines resulting in a trip to theatre to put a central intravenous line into her jugular. When this line is passed its use by date Brennagh will have a Hickman line put in as all other veins in her body arenft able to be used. A week later her PEG feeds were resumed at 10mls an hour. It was clear Brennagh wasnft tolerating this amount along with the maintenance fluids and she wasnft receiving any tpn until the infections were clear as this would push the infections further into her body. I think the major clue was the green gunk leaking from her PEG and burning her skin.A visit from one of our surgeons said this would appear to be caused by an obstruction somewhere within the bowel/ileum so we would spend the night suctioning Brennaghfs stomach contents through her PEG. In the morning we would see where to from there. I was left with the options that the suctioning would help fix our problem or if the suctioning wouldnft work, surgery Brennagh has scheduled for early October would be moved up within a day or so. The surgery that Brennagh was to have in October was to join her back up and reverse the ileostomy. ( An ileostomy is similar to a colostomy but is made from the ileum/small intestine rather than the colon) Man, have I had anatomy 101 speed dating style!!! Brennagh doesnft have much to work with considering she had three quarters of her bowel removed and a portion (my understanding is quite a bit) of her small intestine. The next morning this had appeared to have corrected itself. Brennagh had two clear blood cultures so her tpn intravenous feeds ( Aqueous solution and lipids) could go back up and at least she would be getting some food. All through this Brennaghfs weight wasnft badly affected. Wednesday, Brennaghfs PEG feeding with paedialyte were resumed only to be stopped again Thurday due to leakage. It was then decided a low grade drug study would be done on Friday which meant contrast was put through Brennaghfs PEG and we had three visits to flouroscopy and one visit to xray and 2 visits from mobile xray overnight. This morning we are told Brennagh has a stricture, which is I believe narrowing or constricting of the bowel or ileum, therefore she is most likely to be having surgery next week to re-build her. Then wefll see from there Until then itfs still a step by step process for the medical and Brennagh She is so happy in herself, she is back to her pre op weight. She even shocked everyone yesterday and became a star on the ward when she walked from one end of the ward to the other and back again. Everyone came out to watch her and there were lots of oooohfs and ahhhhhfs.
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Update for 29/08/2013
29 August 2013UPDATE FROM BREN MUM Miss Brennagh is having a low grade drug study tomorrow. She is being a right mystery at the moment. Her PEG fed nutrini has stopped as she couldn't tolerate the 5mls an hr, back on paedialyte. Still having tpn but is weighing in at 14.7kg, not too shabby for Bren. Have decided I'm tired of this laying around and waiting so I have had Bren out of bed and on my lap for 20 odd minutes. Have asked for a wheelchair so I can take her for walks.
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Update for 29/08/2013
29 August 2013Brennagh is back on the ECG, just precautionary. Low potassium + High sodium = heart arrhythmia. I have total admiration for our medical people I'm so thankful for everything they do. Brennagh is becoming quite an enigma. I think there is a point where everyone is hard out searching for the solution and caught up in numbers, ie platelet levels, sodium levels, glucose, input, output....maybe it's time to just let her do her own thing for awhile and see what happens, intervene if and when it's necessary I think Brennagh is rather happy, a lot happier when I got her out of bed today....twice...and I can't wait to get her in a wheelchair and take her for a walk when the weather is fine
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Update for 27/08/2013
27 August 2013Bren looking like butter wouldn't melt this morning No surgery today. We have one clear blood culture, waiting for the second one then Bren an have lipids with her tpn and maintenance fluids. Be nice to lose the puffiness too. Her output is now yellow not GREEN, so we wait to see what happens in the next 24 hours.
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Update for 26/08/2013
26 August 2013After going so well again Bren has decided to have an obstruction now....no food except tpn started, her stomach is now being slowly suctioned overnight. If this doesn't fix the problem she will be back to theatre for surgery....notice how her stomach content looks suspiciously like her ileostomy output and what was leaking from her peg has burnt her wee tummy. will post some photos
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Update for 26/08/2013
26 August 2013Brennagh has started on TPN and nutrini fingers crossed this is onwards and upwards ...got to be well for the next surgery
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Update for 25/08/2013
25 August 2013It has been 5 weeks and Brennagh is still in hospital latest news on Brennagh is Brennagh has put on weight incredibly.....15.1kg! She is still not having any tpn or nutrini, she is actually putting on weight with paedialyte alone so that's some good news now just to get a clear blood culture..Bren is happily laying here listening to her music....favourite singer Macklemore...
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Update for 23/08/2013
23 August 2013Good morning everyone, Bren was having a reasonably good day yesterday then her temp spiked late afternoon, by the middle of the night we have grown a 4th bacterial infection! A variation of the staph infection!! Go figure!! Antibiotics given again. Ideally the line needs to come out but we need it so we're trying to trick the infection into thinking the line has been removed. Don't ask me how you trick bacteria but that is the plan No tpn for a few days, paedialyte and maintenance fluids only. Poor Bren's a little puffy but that's a minor side effect in the grand scheme of things.
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Update for 22/08/2013
22 August 2013Brens iv line blew again yesterday so had to go into theartre to put one into the neck, bloods still not clear of infection so still cant get the hickman line into so can get her back on TPN (iv food) been a few days with no food only fluids
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Update for 20/08/2013
20 August 2013It has been a good 6 weeks and Brennagh is still in hospital..Brennagh has lost alot of weight and has had many set backs she is at the moment fighting off 3 infections and waiting till her blood is clear of infections so she can to go to theature to have a Hickman line put in so they can get some food into her, it amazes me how much this little girl keeps on fighting no matter what is thrown her way... total miracle she is
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Update for 17/08/2013
17 August 2013UPDATE ON BRENNAGH : PICC line has now been removed, no tpn for 48hrs, thanks for the strep bacteria in the picc line yest. The fever has come down after a night of iv fluids and 2 antibiotics. Now to figure out how to feed bren through her peg so she can maintain what weight she has...Just when Bren was showing signs of improvement this happens.. seems to be one fight after another it is nearly 6 weeks since Brennagh and her mum have been in hosp[ital and doesn't look like they will be home anytime soon :-(
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Team Ronald McDonald House South Island
15 August 2013 -
Vanuatu Mission Trip
11 August 2013A promotional video showing a youth mission trip to Vanuatu through Mission Adventures. The main activities are children's ministry and a water project.
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Building Water Tanks in Vanuatu
11 August 2013A short clip with a message from three chiefs/elders in Vanuatu who have received a water tank in their village, built by youth teams from Mission Adventures NZ.
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Update for 10/08/2013
10 August 2013OMG! Look at the symtoms This is from Pittsberg hospital.... Brennagh had the first malrotation surgery at 5months Intestinal Malrotation and Volvulus Intestinal Malrotation and Volvulus Intestinal Malrotation and Volvulus Overview Intestinal malrotation occurs when the intestine does not twist correctly. Instead, the way in which it twists blocks the intestine. Sometimes, abnormal tissue referred to as Ladd's bands attaches the cecum to the duodenum (beginning of the small intestine) and may create a blockage in the duodenum. Our intestines are formed while we are fetuses in the womb, during the tenth week of gestation. As the intestines develop, they normally move from the base of the umbilical cord back into the abdominal cavity. As the intestine returns to the abdomen, it makes two rotations and settles into its normal position. When rotation is incomplete and the intestine does not become fixed into that position, this creates intestinal malrotation. The malrotated intestine is prone to twisting in on its own blood supply, blocking the flow. This is called intestinal volvulus. When intestinal volvulus involves the entire small bowel, it is referred to as mid-gut volvulus. In the United States, about one of every 500 children is born with intestinal malrotation. Although intestinal malrotation can occur in older children (or even adults), up to 90% of patients are diagnosed by age one ? many within the first week after birth. A small minority of people who have intestinal malrotation never experience symptoms, and sometimes live their whole lives without being diagnosed. While many boys with intestinal malrotation develop symptoms earlier, malrotation occurs equally in boys and girls. Many children with intestinal malrotation also have another congenital (present at birth) problems. These may involve the abdominal wall or the digestive system, the heart, or the liver or spleen. Volvulus and Intestinal Malrotation Symptoms Intestinal malrotation is usually not evident until the intestine becomes obstructed by Ladd's bands or twisted. When the intestine is obstructed by Ladd's bands or when the blood supply is twisted, symptoms may include: Vomiting bile (greenish-yellow digestive fluid) Drawing up the legs Pain in the abdomen (belly) Abdominal distention (swelling) Rapid heart rate Rapid breathing Bloody stools Malnutrition Slowed growth Volvulus and Intestinal Malrotation Diagnosis To confirm a diagnosis of intestinal malrotation, patients have various blood tests and diagnostic imaging studies done. These tests include: Abdominal X-ray ? Reveals any intestinal obstruction. Barium swallow upper GI test ? Examines the small intestine for abnormalities and to check the position of the jejunum. A chalky fluid called barium is swallowed or placed into the stomach through a small nasogastric tube. The barium coats the inside of the stomach and intestine so that they will show up on X-rays. Barium enema ? Examines the large intestine, and uses the same radiographic contrast agent as mentioned above. Barium is given into the rectum as an enema. X-rays can show that the large intestine is not in normal position. Abdominal ultrasound ? Produces moving images of internal organs using invisible electromagnetic energy. Ultrasounds can help doctors evaluate the function of the intestine and monitor the blood flow. Volvulus and Intestinal Malrotation Treatment Once intestinal volvulus and/or intestinal malrotation is diagnosed, children begin receiving fluids and antibiotics intravenously. The fluids keep them from becoming dehydrated, and the antibiotics prevent infections. A nasogastric tube is placed from the nose into the stomach to prevent gas buildup in the stomach. As soon as possible, surgery is performed to untwist the intestine. If it is not damaged too badly, the intestine's circulation may be restored after it is untwisted. If the intestine is healthy, an operation called the Ladd's procedure is performed to repair the malrotation. If the surgeons are not sure the intestine will receive an adequate blood supply even after untwisting, they may need to perform another operation. This is usually performed within 24 to 48 hours of the first operation. If they find a section of intestine that is damaged so badly it can not be saved, that portion is removed. To allow the intestine to heal, the surgeons sometimes have to create a small bowel stoma, an opening through the abdominal wall to the skin that diverts the body's waste products into a collection bag. The stoma may be removed after several weeks to restore normal intestinal function. The long-term outcome is generally very good when intestinal malrotation is surgically corrected before intestinal damage occurs. Older children also tend to do well. However, when a large portion of intestine has to be removed because of intestinal injury, the remaining intestine has trouble absorbing nutrients and fluids. The child's regular diet may need to be supplemented or replaced with total parenteral nutrition (TPN). TPN is a high-calorie solution that is given intravenously to bypass the intestine. TPN is very effective, but if it is given over a long period of time, children are at risk for developing chronic liver disease. In a case like this, a child may be considered for an intestinal transplant to protect his or her liver. Cant believe this was not picked up earlier on this wee girl... if it had of she would not be going through as much now!!
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Update for 10/08/2013
10 August 2013Here is a interpretation of Brennaghs diagnoses Thought this would've been helpful to interpret what has happened... Background Intestinal volvulus is defined as a complete twisting of a loop of intestine around its mesenteric attachment site. It is related to but not precisely synonymous with malrotation, a more general term used when the normal process of rotation and fixation of the midgut goes awry. Malrotation may lead to 2 critical complications: mechanical obstruction of the proximal intestine and twisting of the intestines with subsequent ischemia (with or without necrosis) of part or all of the midgut. Volvulus can occur at various sites in the gastrointestinal (GI) tract, including the stomach, small intestine, cecum, transverse colon,[1] and sigmoid colon. Midgut volvulus refers to twisting of the entire midgut around the axis of the superior mesenteric artery (SMA). Patients with intestinal malrotation are at risk for developing a midgut volvulus. This article primarily focuses on midgut volvulus because it is the most common type of volvulus and it can have devastating consequences if not promptly recognized. Midgut volvulus secondary to intestinal malrotation is more common in infants and children, but it can occur in persons of all ages. Sigmoid volvulus, more common in elderly persons, is also briefly discussed. Volvulus involving the GI tract can cause severe clinical problems; the most feared complication is ischemia and necrosis of the entire midgut, which can be fatal. In 1832, Reid described a malpositioned cecum, found in the left upper quadrant, in 2 autopsies.[2] Mall first described the process of normal intestinal rotation during the embryologic period in 1898.[3] The first clear description of anomalies of intestinal rotation and fixation (the clinical manifestations of which correlated with the observations of the embryologist His) was published by Dott in 1923.[4] In 1932, Ladd, the father of pediatric surgery in North America, published his landmark paper on congenital duodenal obstruction and presented a surgical correction for the anomaly described as congenital intestinal malrotation.[5] This technique has been adopted as the standard therapy worldwide and is still the basis of surgical treatment today. Minor modifications have been reported, including the use of minimally invasive surgical techniques. The understanding of GI embryology heavily contributed to the development of a successful surgical treatment for this condition. The anatomical understanding of malrotation and volvulus is considered vital for the early recognition of the clinical presentations and implications of this abnormality. Laboratory findings are nonspecific. Imaging studies are an integral part of the diagnostic process for a patient suspected of having malrotation or other GI obstruction. Confirmation and definitive diagnosis are accomplished more easily with an upper GI contrast series, but other imaging modalities can also be used (as will be discussed here). The management of abnormalities of rotation and volvulus is well established. Treatment of midgut volvulus secondary to congenital intestinal malrotation is surgical; no other effective treatment is available. High priority must be placed on early recognition of midgut volvulus before serious complications develop. The surgical techniques used to treat this condition are discussed in this article. Pathophysiology Embryology of GI tract A good understanding of the embryologic development of the GI tract is central to the understanding of malrotation and volvulus. At 4 weeksf gestation, the GI system is a short, straight tube centrally located in the abdomen. During the fifth week, the first stage of rotation begins and lasts until the tenth week. As this tube grows and lengthens, it must leave the domains of the fetal abdominal cavity and thus herniates into the area of the umbilical cord, carrying its mesentery with its blood supply (ie, the SMA) as a central axis; it is in line with the omphalomesenteric duct, which is located at the apex of the herniation. The prearterial segment includes the developing duodenum, the jejunum, and much of the ileum, whereas the postarterial segment becomes the terminal ileum, the cecum, the ascending colon, and part of the transverse colon. While in this position (partially outside the fetal abdomen), the developing midgut begins to rotate. The DJ loop is first pushed inferiorly and to the right, possibly by the developing liver. Rotation is in a counterclockwise direction and continues in this fashion. This completes the first 90‹ of rotation. The cecocolic loop follows, moving to the left of the artery. The DJ loop then completes a second 90‹ of rotation, coming to rest inferior to the SMA. The second stage of rotation occurs at 10-12 weeksf gestation and involves the return of the intestine to the fetal abdominal cavity. Upon the return of the prearterial segment, the DJ loop completes another 90‹ of rotation for a total of 270‹, coming to rest to the left of the SMA. The cecocolic loop also completes another 90‹ of rotation, coming to rest superior and anterior to the SMA. The third and final phase of rotation occurs after 12 weeksf gestation. The cecum completes its final descent to the right lower quadrant, accomplishing another 90‹ of rotation for a total of 270‹. Once this descent is completed, the intestine becomes fixed to the posterior abdominal wall. The DJ junction is fixed to the left of the aorta, anterior to the left renal vein at the ligament of Treitz, and the cecum forms attachments to the right iliac fossa. These 2 points of attachment leave the mesentery and its blood supply broad-based and fixed. At this point, the GI tract has returned to the peritoneal cavity and the abdominal wall of the fetus has completely formed and closed at the level of the umbilicus. Arrest of development at any stage not only changes the anatomic placement of organs but, perhaps most important, narrows the mesenteric base and impairs fixation, leaving the bowel at high risk for volvulus. Rotational abnormalities The common rotational abnormalities may be broadly grouped according to the stage at which they occur, as follows: Arrest in the first phase leaves the bowel herniated into the umbilical cord region, covered by a membrane, creating the so-called omphalocele; this is often accompanied by other congenital abnormalities (eg, cardiac and urogenital defects) Arrest in the second phase may result in nonrotation, incomplete rotation, hyperrotation, or reversed rotation; gastroschisis and diaphragmatic hernias seem to potentially also occur during this period. mesocolic paraduodenal hernias also occur during the late second phase and early third phase Arrest in the third phase results in a mobile cecum, an unattached duodenum, or an unattached small bowel mesentery, which allows cecal volvulus and internal hernias It is important to note that intestinal malrotation may occur as an isolated event or in association with other types of congenital anomalies as listed above. Nonrotation is the most common abnormality and results from failure of normal counterclockwise rotation around the SMA. Rotation may be completely absent or arrested at 90‹. The small intestine remains entirely to the right of the artery, with the cecum at or near the midline and the colon in the left abdomen. This variant of malrotation is usually considered benign, given the fact that it may not cause any symptoms unless a volvulus develops. In nonrotation, the proximal jejunum and colon pass very closely to the SMA, leaving a narrow pedicle as the base of the mesentery. This is sometimes called the gbell-clapperh or the omega configuration and leaves the midgut highly susceptible to volvulus and infarction. In addition, the peritoneal attachments of the cecum pass anterior and lateral to the duodenum, which may lead to some degree of extrinsic duodenal obstruction (a common cause of intermittent bilious vomiting). Incomplete rotation is the next most common rotational abnormality, involving arrest of rotation at or near 180‹. It is the most important form of malrotation. In this condition, midgut rotation is incomplete, the DJ loop remains to the right of the SMA, and the ileocecal loop comes to lie in the right upper quadrant, anterior to the SMA and closely related to the duodenum. With incomplete rotation, the entire midgut is attached by a very narrow pedicle, consisting mostly of the SMA and the SMV. Twisting or volvulus of this pedicle may occur, leading to ischemia and mechanical obstruction of the intestine, which may lead to intestinal necrosis (see the image below). The ischemia begins with venous congestion, which progresses to arterial occlusion, and, finally, bowel necrosis. Malrotation and midgut volvulus with intestinal is Malrotation and midgut volvulus with intestinal ischemia. Note narrow pedicle at base of mesentery. No resection was required since ischemic necrosis had not yet developed. As previously described, abnormal cecal peritoneal bands that cross over the duodenum in the right upper quadrant may be found in cases of malrotation. These abnormal cecal attachments are called Ladd bands. In both nonrotation and incomplete rotation, cecal bands may cause obstruction and ischemia before birth, leading to congenital duodenal atresia or stenosis. Therefore, the patency of the duodenum should be checked routinely during corrective surgery. In addition, intermittent antenatal volvulus may cause varying degrees of ischemia, leading to atresia or duplication of parts of the jejunum and ileum. In many cases, the abnormal Ladd bands cause only partial and intermittent obstruction, which can manifest as intermittent episodes of bilious vomiting and/or feeding intolerance. Mixed rotational abnormalities are more uncommon and varied. Hyperrotation may narrow the SMA pedicle or lead to a confusing clinical picture in appendicitis. Failure of descent of the cecum may be inconsequential or may lead to cecal volvulus. Reversed rotation results in a 90‹ clockwise rotation, leaving the transverse colon behind the SMA and the duodenum anterior to the artery. In this case, the transverse colon may herniate into a mesocolic pocket or become obstructed by the SMA (also described as an internal hernia). Mesocolic paraduodenal hernias occur with failure of fixation to the posterior abdominal wall. Spaces remain between the mesentery and the wall, allowing possible sequestration and strangulation of bowel segments. This occurs more often on the left and is associated with nonrotation. Right-side hernia is associated with congenital short bowel. Volvulus Volvulus of the midgut may result in several manifestations, depending on the degree of twisting. Venous and lymphatic obstructions occur first because of lower intravascular pressures. Vascular congestion leads to bowel edema and possible oozing of blood, potentially causing GI bleeding. Lymphatic congestion causes the formation of a mesenteric cyst and/or chylous ascites. It is not uncommon to find chylous fluid in the peritoneal cavity and enlarged lymph nodes at the time of corrective surgery for malrotation and volvulus. If volvulus is intermittent, children may have chronic malabsorption from congestion and edema or intermittent bouts of symptoms, usually vomiting and possibly alternating diarrhea and constipation. Arterial compromise is seen when the twisting is significant enough to occlude venous and arterial vessels. This represents an acute and dangerous event. Sequelae include (in order of less to more severe) ischemia, mucosal necrosis, intramural air formation, bacterial translocation, gram-negative sepsis, full-thickness intestinal wall necrosis, perforation, peritonitis, and death. Other congenital abnormalities Malrotation is often associated with other congenital abnormalities, and, in some regions, as many as 62% of cases are associated with these abnormalities. This is important for several reasons. First, some abnormalities (eg, polysplenia, asplenia, and congenital abdominal wall defects) are commonly associated with malrotation, and their presence should automatically lead to an investigation for malrotation. Patients with congenital wall defects, by definition, have some degree of malrotation, which should be evaluated during correction of the defect. Rotational anomalies in conjunction with dextroisomerism or levoisomerism should point to possible polysplenia or an asplenia syndrome. These syndromes have devastating effects on outcomes, especially asplenia. Second, and perhaps most important, mortality related to malrotation and its correction is strongly correlated with the presence or absence of other congenital abnormalities. Serious anomalies may raise the risk of mortality 22 times. Physicians treating patients with malrotation must be aware of the possibility of other associated congenital abnormalities. Developmental abnormalities such as gastroschisis, omphalocele, and congenital diaphragmatic hernia are associated with displacement of the abdominal contents outside the domain of the abdominal cavity. Since such developmental abnormalities occur at the time of fetal intestinal growth and rotation, they typically result in intestinal malrotation. Malrotation has also been described in also association with duodenal atresia, Meckel diverticulum, intussusception, small bowel atresia, prune belly syndrome, gastric volvulus, persistent cloaca, Hirschsprung disease, and extrahepatic biliary anomalies. Note that trisomy 18 is included in the list..... Etiology Specific causes of malrotation are unknown, although repeated associations have been made with congenital syndromes such as Down syndrome and the VACTERL (vertebral, anal, cardiac, tracheal, esophageal, renal, limb) association of anomalies. Because malrotation is an embryologic development abnormality, it may be assumed that any interference during critical periods of fetal development can lead to malrotation. Associated anomalies include the following: Trisomy 21 Congenital heart disease Imperforate anus Ileal and jejunal atresia or duplication Omphalocele Duodenal atresia and stenosis Diaphragmatic hernia Meckel diverticulum VACTERL association Trisomy 13, trisomy 18 Esophageal atresia Situs inversus and asplenia (may be associated with biliary atresia) Kidney abnormalities Agenesis of corpus callosum Pyloric stenosis Annular pancreas Erythroblastosis Intussusception Cystic fibrosis Meconium ileus Hirschsprung disease Duodenal web Biliary atresia Prognosis The prognosis of midgut volvulus depends on prompt recognition before bowel necrosis occurs. In general, rapid diagnosis and immediate intervention for correction improve overall prognosis in all age groups. Younger children are at higher risk and require more aggressive support and treatment. Patients with other congenital defects have a poorer prognosis, depending on the severity of the abnormality. The morbidity and mortality of malrotation and volvulus have decreased significantly since the advent of surgical correction. Early mortality figures ranged from 23% to 33%, mostly resulting from the sequelae of major bowel resection with bowel dysfunction and malnutrition. With the development of total parenteral nutrition and improved nutritional support, survival has increased. Current mortality figures range from about 3% to 9% overall. In addition, improved understanding of the pathophysiology and the associated anomalies has allowed more prompt diagnosis. Clinical awareness of the association of malrotation with other anomalies and increased sensitivity to the importance of minor symptoms (eg, bilious vomiting) has led to improved diagnosis, allowing for correction of malrotation before life-threatening volvulus occurs. The significance of rapid diagnosis is evident in the high mortality (=33%) still associated with diagnostic delay, especially in very young persons. Messineo et al determined that the most important factors influencing mortality were the presence of necrotic bowel, associated abnormalities, and younger age.[6] Risk of mortality increases 25 times in the presence of bowel necrosis and is influenced heavily by the length of viable bowel. The investigators found that the survival rate was maintained above 93% with 10%, 25%, and 50% of the bowel necrosed but that it fell to 35% with the loss of 75% of the length of the small bowel. Messineo et al also found that the presence of other serious abnormalities increased the risk of mortality by a factor of 22. Given the high association of malrotation with other congenital anomalies, this risk factor heavily affects mortality figures. In addition, the authors determined that patients who died after surgery had a significantly lower median age (4 days versus 30 days). The most common cause of death in patients who develop a volvulus is sepsis. Other noted causes are pneumonia, intracranial hemorrhage, short-bowel syndrome, malnutrition, renal failure or hepatic failure, continued small bowel obstruction, and other life-threatening anomalies. Causes of long-term postoperative morbidity include adhesive bowel obstruction, short-bowel syndrome, and recurrent volvulus. Adhesive obstruction has been noted in 1-10% of these patients postoperatively and can contribute to renewed symptoms of partial to complete obstruction. Short-bowel syndrome may occur after resection of a significant length of necrotic bowel. Children with malrotation and volvulus comprise 18% of the population of patients with short-bowel syndrome, which can result in chronic learning and psychomotor disabilities as well as the obvious risk of malnutrition. Recurrent volvulus can occur in patients with intestinal malrotation that was successfully treated with a Ladd procedure (see Treatment). The operation for malrotation decreases the risk of intestinal volvulus, but several cases have been reported in which volvulus developed weeks and even months and years after Ladd procedure.[7] The significant recurrence rate (7%) for midgut volvulus after the Ladd procedure has resulted in several attempts over the past century to augment this operation with fixation of the cecum and duodenum; however, overall results of fixation procedures have not shown improvement in outcomes. The fixation itself can be a source of volvulus, internal hernias, and intestinal obstruction. Therefore, patient and family education on the signs and symptoms of obstruction and volvulus has proved to be the only effective prevention of the consequences of recurrent volvulus. In general, in the absence of other significant abnormalities or bowel necrosis secondary to midgut volvulus, morbidity and mortality of malrotation and its correction are low, and these children can be expected to do well, with an excellent chance of total resolution of related symptoms. Volvulus has been reported in 45-80% of infants with malrotation and is much more life threatening. Surgical correction is mandatory as long as the patient is stable enough to undergo the procedure and general anesthesia. In addition, malrotation places the infant at increased risk for intussusception. Waugh syndrome, the presence of intussusception and malrotation, was first described in 1911. Poor fixation of the cecum allowing easier ileal advancement is noted in almost all infants with intussusception and is central to the pathophysiology of malrotation. Patients who are asymptomatic and whose condition is undiagnosed before age 2 years may never become symptomatic; however, without operation, malrotation is estimated to result in volvulus in 1 out of 3 patients.
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Update for 10/08/2013
10 August 2013Brennagh's diagnostic papers from Starship Hospital cont: Stable from abdominal perspective; remained soft and non-tender, non-distended. Stoma healthy, fluid and flatus in bag. Gastrostomy losses replaced as required. Mild erythema noted around gastrostomy site on 07/08/13 - topical fuicort cream applied. Persistent reduced air entry R base, chest Physio Therapy implemented with good effect. Reviewed by Gastro (Dr Evans) - Noted liver biochemistry improving, advised should be able to wean off TPN eventually, but may take a few months. Suggested reduced TPN hours to protect liver. If ALT (alanine aminotransferase) does not normalise within 2 weeks for ursodeoxycholic acid 10mg/kg twice daily (available for intestinal failure-associated liver disease). Brennagh will continue to be reviewed in Gastro Outreach clinic in Wellington. To continue on TPN on transfer as per dietician (as per separate dietician transfer summary) Commenced on trophic feeds on 07/08/13 - 5ml nutrini formula. Discussed with Professor Pringle - accepted for transfer to Wellington Hospital for ongoing care.
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Update for 09/08/2013
9 August 2013Brennagh got transferred to wellington and this was written by brennagh's mum Hiya, This is what is on the papers that came with us from Starship... Diagnoses: Primary Diagnosis > Ischemic gut secondary to volvulus Secondary Diagnosis > Intra-abdominal collection > RLL atelectasis > Intestinal failure Presentation: 7yo girl tranferred from Palmerston North Hospital to Starship Hospital PICU with ischemic gut with subsequent shock and significant inotrope requirement. Presented to PNH ED 23/07/13 with abdominal distension and shock; findings of grossly dilated large and small bowel loops on AXR with compression of intrathoracic viscera. Taken to theatre for emergency laparotomy; findings of volvulus of entire midgut with adhesions - R hemicolectomy performed for ischemic large bowel. Returned for re-look laparotomy on 24/07/13; gangrenous distal half of small bowel resected, 152cm viable bowel remaining, stoma formed. Post-operatively had ongoing high inotope requirement, on dopamine and Nor Adrenaline. Other issues included generalised liver impairment, hypoglycaemia, rhabdomyolysis with CK> 20,000. Also acute kidney injury with peak creatinine 121. On IV meropernem for poor renal function.
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Update for 09/08/2013
9 August 2013PART 2: Continued to progress well in PICU; ventilation weaned to CPAP, inotropes weaned as able. Intra-abdominal pressures remained stable. Renal function continued to improve with adequate urine output. Continued on Meropenem but ongoing fevers despite. Cultures negative. Inotropes weaned and extubated on 27/07/13. Changed to triple IV 28/07/13 antibiotics once renal function normalised. Progress and Management: Transferred to Ward under Paeds Surgeons on 28/07/13. Persistent fevers despite triple IV antibiotics, nil growth on repeated blood cultures. CRX showed atelectasis and patchy density RLL consistant with consolidation, and CT abdo/pelvis showed a rectovesical collection 4.8x2.8x1.9cm,not for drainage. Reviewed by ID (Infectectious Diseases) -changed to amikacin, augmentin and metronidazole for appropriate cover for both chest and intra-abdominal sources. ( this was when her lungs were beginning to collapse)
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Update for 08/08/2013
8 August 2013Brennagh has be moved from Star ship hospital to wellington today. She had had some good improvements but has to be monitored closley. Brennagh is not out of the woods yet and has a long road ahead of her and will still be a long time before she and her mum can return home to the rest of the family
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Made by Sandra for Kath and family
7 August 2013 -
Update for 07/08/2013
7 August 2013This is a video made for Kath and family made by Sandra http://www.youtube.com/watch?v=iE49JKo4JGo&feature=youtu.be
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Update for 06/08/2013
6 August 2013I thought Brennagh was doing her gnormalh random leaking of her food from her PEG. We have never been able to explain the reason why she does this. of Brennagh. It has become part of our routine that we fit in as a random act of Brennagh, unexpected and unexplainedc Sometimes, she can leak for dayscsometimes nothing comes of it, sometimes it will lead to vomiting lasting for short periods to long periods ending in hospital admissions from massive fluid loss and rapid weight loss, requiring IV fluids and antibiotics. At these times she would appear to be on the brink of death, and Ifm sure she was. This was just part of glife with Brennagh, surviving and living with Trisomy 18? Wefve become used to it over the past seven years. Today seemed to be one of these ocassions. Brennagh started to leak from her PEG at 4pm. At 4.30pm I gave her medication to settle her anxiety that follows. By 5pm I noticed her torso had completely blown up and was hard to the touch and at this point she was struggling to breathe. I donft know why I didnft call an ambulance at this stage but I didnft, I quickly bundled Brennagh into the car and drove as fast as I could to hospital. At the same time I was calling our Homecare medical team at the hospital and have a registrar meet me in Accident and Emergency. Something that was put in place each time we had to go to hospital to hasten Brennagh being seen and lessening our risk of exposing her weakened immune system out in the waiting room. We met the registrar out in the, followed by an xray to discover why her tummy so swollen and hard. This revealed a large pocket of air which was pushing her diaphragm up which was crushing her lungs making it difficult for Brennagh to breathe. The xray didnft reveal much more than this. A surgeon came in and i was tasked with the decision whether to fly to Wellington for surgery, adding another 3 hour wait or have exploratory surgery here in Palmerston North. I opted for the latter as I felt Brennagh wouldnft make it to Wellington. I was told all signs showed Brennagh was a very sick little girl. We had an anxious 2 hour wait for surgery. 9.30 pm Brennagh was wheeled into theatre. 11pm she was in recovery and we were able to see her. One of my best friends and Brennaghfs homehelp/carer sat with me. The surgeon explained Brennagh was indeed a very sick little girl and I was lucky to have take her to hospital when I did. her bowel had twisted and 3/4's of it had to removed. Also she had lost a portion of her small intestine. Brennagh was now on life support and in an induced coma. The surgeon explained to me that they had left her open as he wanted to go in the next day to check if anymore of the bowel and small intestine had died. At this point she had enough left to sustain life. however, as Brennagh already had a pre-existing terminal condition it was highly likely she would not survive the night. I was devastated. Brennagh was scheduled for the second surgery 14 hours later. I prayed hard that she would make it through the night, then I prayed no more intestine and bowel wouldnft die through the night and be removed. I did not sleep, I sat with her hoping these were not my last hours with her. I was broken. I could not believe how fast this had turned my life upside down. I couldnft believe what I was seeing and hearing from the doctors. It seemed so surreal. Thoughts of how I was going to tell her brothers and father plagued me. Thoughts of how I was I was going to even explain any of this to them as she was awake and sitting in the car the last time they had seen her. Thoughts of how I live without her. Thoughts of having to keep it together for Brennagh, for my family, for everyone who had been involved in Brennaghs life. I was totally overwhelmed. I stopped thinking long enough to consider what was important to me in that moment. I gently help my beautiful little girls hand. Laying there with so many tubes and lines in her. Fluids and drugs going in, fluids and waste coming out of her tiny 15kg limp body. I spoke gently to her. Making promises to her if she would only stay in my life long enough for me to keep. Willing and pleading her to have the strength to continue to live. I wasnft ready to let her go. I struggled with expecting her to carry on. Was I asking too much? Was I being cruel to want her to keep fighting? I whispered gently to her, If I was asking too much, if it was too painful for her to carry on it was ok for her to let go. I loved her so much I would understand if this was too much for her to bare. I would never want her to suffer. I was so scared. As the hours ticked away I dared to be hopeful. Please, please, please make it til the morningc.please make it surgery, pleasecc. Whether it was by good fortune or whatever, a well known paediatric surgeon was coming to Palmerston North for a prior engagement. He was teed up to be in on Brennaghfs surgery for us our surgeon. Please just stay with me long enough for the best team of surgeons to do their magicc.please. 5 hoursc.6 hoursc.7c.I kept thanking Brennagh, I thanked God, I thanked the Universe. I continued to pray for the best outcome, all the while knowing the odds were against us. Everyone was so kind, so informative but most of all so honest, but I could not focus on the facts. I had to will myself to believe in the best outcome. I had to be strong and believe it would all work out for the best for Brennaghfs sake, for minec.. Right before surgery Brennaghfs liver started to show the strain, to what extent we could not be certain until she was in theatre again. If her liver was failing it would be likely she would not make it off the table. If by chance she made it through the surgery our chances of surviving beyond that were getting slimmerc.At that point I had almost given up all hope. It is school holidays. All Brennaghfs brothers had to be gathered. Brennaghfs dad brought them to the hospital. I was frightened this would be the last time they would see her. I couldnft tell them this was why I had them brought here. We sat quietly in the waiting room. I explained Brennagh looked so different to when they had seen her at home the day before. I explained to them that she had lots of lines, that she had a machine that was helping her to breathe and that if they had any questions about what they saw not to be afraid to ask the team of drs and nurses that were helping her. I wanted to prepare them to lessen the shock. Brennaghfs little body was covered so they didnft see the gaping wound in her tummy. Plans had been put in place after the first surgery when Brennagh had survived the first night after surgery. Finally we would be sent to our top hospitalc.Starship Childrens Hospital in Auckland. But first Brennagh had to survive long enough to make it there.So many of our medical friends and family and friends camec.lots of tears hopes and memories shared. I prayed for our Willy to come, for some reason it was important that our own paediatrician came. I wanted him to talk to her as he did when we visited. I wanted him to tell her in his own special way to behave herself. I believe she has a special unspoken bond with Willy. A visit with Willy always made Brennagh right. I desperately needed Willy to get here but at the same time he has many children to look after in clinic. Willy arrived by the skin of his teeth, managing to spare a little time from his other equally important charges on the wards and in clinic. I was so happy to see him. I hugged him and cried, I wanted him to make it all better for us. I asked Mr Pringle and Mr Young if Brennagh made it through the surgery but it was inevitable that she would pass, I asked if I could be alone with her at the time. At that point I felt she had come into this world with me and if she was leave it I selfishly wanted it to be the same way. I didnft dwell on this any further. I willed her to make it through the surgery. Brennagh was wheeled once again to theatre. My sister arrived in time to give me a quick hug and I jumped into the lift with Brennagh, the surgeon and a nurse. Looking through my tears at Willy, he whispered, Donft give up hope yet. Arriving at the theatre doors the surgeon said, gthis is as far as you go mumh Thank you and good luck I said, crying like my heart was breaking to pieces, thinking that was the last time I would see her breathe. Surgery was fast this time, under an hour. Finally, the news I had waited to hear. Surgery couldnft have gone any better. It was great and hope was still there. We were still going to Starship Childrens Hospital. Please Bren just hang in there. Theyfre flying in to get us. Hold on a little longerc.CRITICAL BUT STABLE! my angel is fighting to hold on.
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I thought Brennagh was doing her gnormalh random leaking of her food from her PEG. We have never been able to explain the reason why she does this. of Brennagh. It has become part of our routine that we fit in as a random act of Brennagh, unexpected and unexplainedc Sometimes, she can leak for dayscsometimes nothing comes of it, sometimes it will lead to vomiting lasting for short periods to long periods ending in hospital admissions from massive fluid loss and rapid weight loss, requiring IV fluids and antibiotics. At these times she would appear to be on the brink of death, and Ifm sure she was. This was just part of glife with Brennagh, surviving and living with Trisomy 18? Wefve become used to it over the past seven years. Today seemed to be one of these ocassions. Brennagh started to leak from her PEG at 4pm. At 4.30pm I gave her medication to settle her anxiety that follows. By 5pm I noticed her torso had completely blown up and was hard to the touch and at this point she was struggling to breathe. I donft know why I didnft call an ambulance at this stage but I didnft, I quickly bundled Brennagh into the car and drove as fast as I could to hospital. At the same time I was calling our Homecare medical team at the hospital and have a registrar meet me in Accident and Emergency. Something that was put in place each time we had to go to hospital to hasten Brennagh being seen and lessening our risk of exposing her weakened immune system out in the waiting room. We met the registrar out in the, followed by an xray to discover why her tummy so swollen and hard. This revealed a large pocket of air which was pushing her diaphragm up which was crushing her lungs making it difficult for Brennagh to breathe. The xray didnft reveal much more than this. A surgeon came in and i was tasked with the decision whether to fly to Wellington for surgery, adding another 3 hour wait or have exploratory surgery here in Palmerston North. I opted for the latter as I felt Brennagh wouldnft make it to Wellington. I was told all signs showed Brennagh was a very sick little girl. We had an anxious 2 hour wait for surgery. 9.30 pm Brennagh was wheeled into theatre. 11pm she was in recovery and we were able to see her. One of my best friends and Brennaghfs homehelp/carer sat with me. The surgeon explained Brennagh was indeed a very sick little girl and I was lucky to have take her to hospital when I did. her bowel had twisted and 3/4's of it had to removed. Also she had lost a portion of her small intestine. Brennagh was now on life support and in an induced coma. The surgeon explained to me that they had left her open as he wanted to go in the next day to check if anymore of the bowel and small intestine had died. At this point she had enough left to sustain life. however, as Brennagh already had a pre-existing terminal condition it was highly likely she would not survive the night. I was devastated. Brennagh was scheduled for the second surgery 14 hours later. I prayed hard that she would make it through the night, then I prayed no more intestine and bowel wouldnft die through the night and be removed. I did not sleep, I sat with her hoping these were not my last hours with her. I was broken. I could not believe how fast this had turned my life upside down. I couldnft believe what I was seeing and hearing from the doctors. It seemed so surreal. Thoughts of how I was going to tell her brothers and father plagued me. Thoughts of how I was I was going to even explain any of this to them as she was awake and sitting in the car the last time they had seen her. Thoughts of how I live without her. Thoughts of having to keep it together for Brennagh, for my family, for everyone who had been involved in Brennaghs life. I was totally overwhelmed. I stopped thinking long enough to consider what was important to me in that moment. I gently help my beautiful little girls hand. Laying there with so many tubes and lines in her. Fluids and drugs going in, fluids and waste coming out of her tiny 15kg limp body. I spoke gently to her. Making promises to her if she would only stay in my life long enough for me to keep. Willing and pleading her to have the strength to continue to live. I wasnft ready to let her go. I struggled with expecting her to carry on. Was I asking too much? Was I being cruel to want her to keep fighting? I whispered gently to her, If I was asking too much, if it was too painful for her to carry on it was ok for her to let go. I loved her so much I would understand if this was too much for her to bare. I would never want her to suffer. I was so scared. As the hours ticked away I dared to be hopeful. Please, please, please make it til the morningc.please make it surgery, pleasecc. Whether it was by good fortune or whatever, a well known paediatric surgeon was coming to Palmerston North for a prior engagement. He was teed up to be in on Brennaghfs surgery for us our surgeon. Please just stay with me long enough for the best team of surgeons to do their magicc.please. 5 hoursc.6 hoursc.7c.I kept thanking Brennagh, I thanked God, I thanked the Universe. I continued to pray for the best outcome, all the while knowing the odds were against us. Everyone was so kind, so informative but most of all so honest, but I could not focus on the facts. I had to will myself to believe in the best outcome. I had to be strong and believe it would all work out for the best for Brennaghfs sake, for minec.. Right before surgery Brennaghfs liver started to show the strain, to what extent we could not be certain until she was in theatre again. If her liver was failing it would be likely she would not make it off the table. If by chance she made it through the surgery our chances of surviving beyond that were getting slimmerc.At that point I had almost given up all hope. It is school holidays. All Brennaghfs brothers had to be gathered. Brennaghfs dad brought them to the hospital. I was frightened this would be the last time they would see her. I couldnft tell them this was why I had them brought here. We sat quietly in the waiting room. I explained Brennagh looked so different to when they had seen her at home the day before. I explained to them that she had lots of lines, that she had a machine that was helping her to breathe and that if they had any questions about what they saw not to be afraid to ask the team of drs and nurses that were helping her. I wanted to prepare them to lessen the shock. Brennaghfs little body was covered so they didnft see the gaping wound in her tummy. Plans had been put in place after the first surgery when Brennagh had survived the first night after surgery. Finally we would be sent to our top hospitalc.Starship Childrens Hospital in Auckland. But first Brennagh had to survive long enough to make it there.So many of our medical friends and family and friends camec.lots of tears hopes and memories shared. I prayed for our Willy to come, for some reason it was important that our own paediatrician came. I wanted him to talk to her as he did when we visited. I wanted him to tell her in his own special way to behave herself. I believe she has a special unspoken bond with Willy. A visit with Willy always made Brennagh right. I desperately needed Willy to get here but at the same time he has many children to look after in clinic. Willy arrived by the skin of his teeth, managing to spare a little time from his other equally important charges on the wards and in clinic. I was so happy to see him. I hugged him and cried, I wanted him to make it all better for us. I asked Mr Pringle and Mr Young if Brennagh made it through the surgery but it was inevitable that she would pass, I asked if I could be alone with her at the time. At that point I felt she had come into this world with me and if she was leave it I selfishly wanted it to be the same way. I didnft dwell on this any further. I willed her to make it through the surgery. Brennagh was wheeled once again to theatre. My sister arrived in time to give me a quick hug and I jumped into the lift with Brennagh, the surgeon and a nurse. Looking through my tears at Willy, he whispered, Donft give up hope yet. Arriving at the theatre doors the surgeon said, gthis is as far as you go mumh Thank you and good luck I said, crying like my heart was breaking to pieces, thinking that was the last time I would see her breathe. Surgery was fast this time, under an hour. Finally, the news I had waited to hear. Surgery couldnft have gone any better. It was great and hope was still there. We were still going to Starship Childrens Hospital. Please Bren just hang in there. Theyfre flying in to get us. Hold on a little longerc.CRITICAL BUT STABLE! my angel is fighting to hold on.
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Update for 04/08/2013
4 August 2013UPDATE FROM BRENNAGH'S MUM Day 13.. Been off oxygen for nearly 48 hrs, 5 days of cough assist machine and suctioning over with. Latest xray shows the PICC line is not aggrevating Brennagh's heart so we're being monitored for her erratic heart. Hopefully we're out of HDU and moving onto the ward. YAY! Brennagh is a lot happier within herself, not so happy with me as I've been as I've been helping with her suctioning and she hates it. The weather is beautiful in Auckland today. We have windows open and fresh air flowing through our room. Bren's temps have come down so I'm assuming they were high due to her femoral line being past it's use by date. Platelets have come up....It's all good news today
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Update for 02/08/2013
2 August 2013UPDATE on Brennagh's progress Today we are up. Lungs are on the mend. Will be on a heart monitoring harness for the weekend to record Brennagh's heart. Cardiologist came to visit, Bren has been doing tricky things with her heart.
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Update for 02/08/2013
2 August 2013The Flight Team arrived from Auckland bringing with them an expert team from PICU (Paediatric Intensive Care Unit ) at Starship Childrenfs Hospital. It took another two hours to prepare Brennagh to transport. It was incredible to see what goes into switching over from hospital equipment to moblie equipment. All the lines of living-saving drugs and machines. With the flight crew, ambulance crew, myself and Brennagh that made nine of us. I knew one of the ambulance crew so that was quite nice to have a familiar face. Although a lot of the medical team I would consider to be family. Lots of Love. Brennagh was settled in the aircraft at Palmerston North Airport and our life flight began. We flew over our house on the hill and all the boys at home were flicking the house lights on and off sending us lots of love with each flash. The flight was uneventful. Imanaged to even nod off a couple of times as I was shattered. As a person that doesnft fly unless itfs an emergency, I was woken by turbulence and freaked out but judging by the reactions or lack of from the rest of the crew I gathered this was normal, so I settled again. We arrived in Auckland and from there transported by ambulance, the fastest trip Ifve ever had! Lights, sirens and 140k plus! WOW! Enter details of your update here
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Update for 01/08/2013
1 August 2013THE LAST 7 DAYS (written by Brennagh's mum) I thought Brennagh was doing her gnormalh random leaking of her food from her PEG. We have never been able to explain the reason why she does this. of Brennagh. It has become part of our routine that we fit in as a random act of Brennagh, unexpected and unexplainedc Sometimes, she can leak for dayscsometimes nothing comes of it, sometimes it will lead to vomiting lasting for short periods to long periods ending in hospital admissions from massive fluid loss and rapid weight loss, requiring IV fluids and antibiotics. At these times she would appear to be on the brink of death, and Ifm sure she was. This was just part of glife with Brennagh, surviving and living with Trisomy 18? We've become used to it over the past seven years. Today seemed to be one of these occasions. Brennagh started to leak from her PEG at 4pm. At 4.30pm I gave her medication to settle her anxiety that follows. By 5pm I noticed her torso had completely blown up and was hard to the touch and at this point she was struggling to breathe. I donft know why I didn't call an ambulance at this stage but I didn't, I quickly bundled Brennagh into the car and drove as fast as I could to hospital. At the same time I was calling our Home care medical team at the hospital and have a registrar meet me in Accident and Emergency. Something that was put in place each time we had to go to hospital to hasten Brennagh being seen and lessening our risk of exposing her weakened immune system out in the waiting room. We met the registrar out in the, followed by an xray to discover why her tummy so swollen and hard. This revealed a large pocket of air which was pushing her diaphragm up which was crushing her lungs making it difficult for Brennagh to breathe. The xray didn't reveal much more than this. A surgeon came in and i was tasked with the decision whether to fly to Wellington for surgery, adding another 3 hour wait or have exploratory surgery here in Palmerston North. I opted for the latter as I felt Brennagh wouldnft make it to Wellington. I was told all signs showed Brennagh was a very sick little girl. We had an anxious 2 hour wait for surgery. 9.30 pm Brennagh was wheeled into theatre. 11pm she was in recovery and we were able to see her. One of my best friends and Brennaghfs homehelp/carer sat with me. The surgeon explained Brennagh was indeed a very sick little girl and I was lucky to have take her to hospital when I did. her bowel had twisted and 3/4's of it had to removed. Also she had lost a portion of her small intestine. Brennagh was now on life support and in an induced coma. The surgeon explained to me that they had left her open as he wanted to go in the next day to check if anymore of the bowel and small intestine had died. At this point she had enough left to sustain life. however, as Brennagh already had a pre-existing terminal condition it was highly likely she would not survive the night. I was devastated. Brennagh was scheduled for the second surgery 14 hours later. I prayed hard that she would make it through the night, then I prayed no more intestine and bowel wouldnft die through the night and be removed. I did not sleep, I sat with her hoping these were not my last hours with her. I was broken. I could not believe how fast this had turned my life upside down. I couldnft believe what I was seeing and hearing from the doctors. It seemed so surreal. Thoughts of how I was going to tell her brothers and father plagued me. Thoughts of how I was I was going to even explain any of this to them as she was awake and sitting in the car the last time they had seen her. Thoughts of how I live without her. Thoughts of having to keep it together for Brennagh, for my family, for everyone who had been involved in Brennaghs life. I was totally overwhelmed. I stopped thinking long enough to consider what was important to me in that moment. I gently help my beautiful little girls hand. Laying there with so many tubes and lines in her. Fluids and drugs going in, fluids and waste coming out of her tiny 15kg limp body. I spoke gently to her. Making promises to her if she would only stay in my life long enough for me to keep. Willing and pleading her to have the strength to continue to live. I wasnft ready to let her go. I struggled with expecting her to carry on. Was I asking too much? Was I being cruel to want her to keep fighting? I whispered gently to her, If I was asking too much, if it was too painful for her to carry on it was ok for her to let go. I loved her so much I would understand if this was too much for her to bare. I would never want her to suffer. I was so scared. As the hours ticked away I dared to be hopeful. Please, please, please make it til the morningc.please make it surgery, pleasecc. Whether it was by good fortune or whatever, a well known paediatric surgeon was coming to Palmerston North for a prior engagement. He was teed up to be in on Brennaghfs surgery for us our surgeon. Please just stay with me long enough for the best team of surgeons to do their magicc.please. 5 hoursc.6 hoursc.7c.I kept thanking Brennagh, I thanked God, I thanked the Universe. I continued to pray for the best outcome, all the while knowing the odds were against us. Everyone was so kind, so informative but most of all so honest, but I could not focus on the facts. I had to will myself to believe in the best outcome. I had to be strong and believe it would all work out for the best for Brennaghfs sake, for minec.. Right before surgery Brennaghfs liver started to show the strain, to what extent we could not be certain until she was in theatre again. If her liver was failing it would be likely she would not make it off the table. If by chance she made it through the surgery our chances of surviving beyond that were getting slimmerc.At that point I had almost given up all hope. It is school holidays. All Brennaghfs brothers had to be gathered. Brennaghfs dad brought them to the hospital. I was frightened this would be the last time they would see her. I couldnft tell them this was why I had them brought here. We sat quietly in the waiting room. I explained Brennagh looked so different to when they had seen her at home the day before. I explained to them that she had lots of lines, that she had a machine that was helping her to breathe and that if they had any questions about what they saw not to be afraid to ask the team of drs and nurses that were helping her. I wanted to prepare them to lessen the shock. Brennaghfs little body was covered so they didnft see the gaping wound in her tummy. Plans had been put in place after the first surgery when Brennagh had survived the first night after surgery. Finally we would be sent to our top hospitalc.Starship Childrens Hospital in Auckland. But first Brennagh had to survive long enough to make it there.So many of our medical friends and family and friends camec.lots of tears hopes and memories shared. I prayed for our Willy to come, for some reason it was important that our own paediatrician came. I wanted him to talk to her as he did when we visited. I wanted him to tell her in his own special way to behave herself. I believe she has a special unspoken bond with Willy. A visit with Willy always made Brennagh right. I desperately needed Willy to get here but at the same time he has many children to look after in clinic. Willy arrived by the skin of his teeth, managing to spare a little time from his other equally important charges on the wards and in clinic. I was so happy to see him. I hugged him and cried, I wanted him to make it all better for us. I asked Mr Pringle and Mr Young if Brennagh made it through the surgery but it was inevitable that she would pass, I asked if I could be alone with her at the time. At that point I felt she had come into this world with me and if she was leave it I selfishly wanted it to be the same way. I didnft dwell on this any further. I willed her to make it through the surgery. Brennagh was wheeled once again to theatre. My sister arrived in time to give me a quick hug and I jumped into the lift with Brennagh, the surgeon and a nurse. Looking through my tears at Willy, he whispered, Donft give up hope yet. Arriving at the theatre doors the surgeon said, gthis is as far as you go mumh Thank you and good luck I said, crying like my heart was breaking to pieces, thinking that was the last time I would see her breathe. Surgery was fast this time, under an hour. Finally, the news I had waited to hear. Surgery couldnft have gone any better. It was great and hope was still there. We were still going to Starship Childrens Hospital. Please Bren just hang in there. Theyfre flying in to get us. Hold on a little longerc.CRITICAL BUT STABLE! my angel is fighting to hold on.
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