September 30, 2012

31 Days till Halloween!!

So excited for Halloween!!!! I know its not even the first yet.. but someone facebook status was about them carving pumpkins today..... so if people are carving pumpkins I think its fine to put up some decorations. Have some free time today, Hailey is at a birthday party so I just got Hannah. Found a bunch of sweet pumpkin carving templates that I added to my Pinterest (pinterest.com/bonnie0416). Finished Hannah's Halloween costume, just need to finish Hailey's Tutu.
I forgot to do trach ties with the nurse last night so I got brave and did them alone today. Her neck is soo red. I used the rope/tie stuff for the old kind of trach ties.
I tide the rope to the trach while the old tie was still on. Then cut off her old tie after triple checking that the rope was on tight enough to keep the trach in. Then cleaned and applied creams and put the new tie on and cut off the rope. Wasn't so bad.. Had the spare trach right there knowing what I was doing was VERY risky


September 29, 2012

Ostomy & scars

The process of removing NEC, having an ostomy, reconnection the bowels and the scar it leaves behind a year later
Before NEC surgery. Arrows show the visible NEC

After remove of NEC and her new ostomy and bag

After reconnection surgery 
After staples were taken out

A year after reconnection, the scars.



Googling

Since Hannah's ventilators were changed on Tuesday it rings off apean every minute(no over exaggeration) and low minute ventilation a far amount. Since then they haven't gotten back to me on what's wrong or how to change it so I had to change the apnea alarm setting my self making me VERY frustrated  These people are letting me sit at home with a ventilator that is ringing off ALL the time. They also haven't come up with any solution or ideas about how Hannah is puking and not tolerating feeds. Thankfully our paediatric agreed to try giving her stool looseners, refeeding her gtube drainage and sending her to get a blood gas. On top of the bagging Hannah has also been sweating ALOT, has a higher then normal heart rate and needs more support when sleeping. So last night after my night nurse calmed me down about Hannahs ventilator ringing off I started googling....

First thing was Heart Failure Sypmtoms:

The most common symptoms of CHF include:
  • breathing difficulties during the night or when lying down  
  • coughing and wheezing     
  • fatigue and weakness
  • shortness of breath  
  • swollen ankles
  • abdominal pain, bloating  
  • loss of appetite or Nausea  
  • accumulation of fluid in the abdomen  
  • bluish skin around the mouth
  • constipation   ( not constipated but harder then usual)
  • sweating 
  • pale skin and cold hands or feet  
  • urination at night 
My nurse tried to calm me down from that by saying something like " yes but all those things will also be in pulmonary hypertension and short gut" 

so then I looked up short bowel syndrome
  • Diarrhea 
  • Steatorrhea. 
  • Abdominal pain.
  • Weight loss and malnutrition.
  • Dehydration.   
  • Fatigue and weakness.
  • Flatulence. 

Then Pulmonary Hypertension Pulmonary Hypertension

  • Shortness of breath that worsens with activity   
  • Other common complaints are cough,fatiguedizziness, and lethargy.
  • With the advancement of the condition and ensuing right heart failure, shortness of breath may become worse and retention of fluid in the body may increase (due to failure of the heart to pump blood forward) resulting inswelling the legs.
  • People may also complain of chest pain and angina.
  • Depending on the underlying associated disease, pulmonary artery hypertension can have other manifestations. For example, characteristic skin changes seen inscleroderma, or the signs of liver disease seen in portopulmonary hypertension.
  • Rapid breathing, hypoxia (low oxygen level in the blood), and swelling in the legs.
  • In severe pulmonary hypertension, the health care practitioner may hear louder than normal components of heart sounds when he or she listens to the heart with a stethoscope (auscultation).
  • The doctor may also feel elevation of the chest wall when the heart pumps and this may indicate enlargement of the right side of the heart suggestive of pulmonary hypertension (right ventricular heave).
So by this point im freaking out who wouldn't be most of her symptoms are still pointing at Heart failure and then I scroll to the bottom of the Google search and where it says search related to and give a big list the first one was " Life expectancy of a person living with Pulmonary Hypertension" .

"The outlook for pulmonary hypertension depends on the underlying disease and the severity of pulmonary hypertension. Pulmonary hypertension may be a life-threatening condition if diagnosed in late stages or left untreated. The life expectancy of someone with primary pulmonary hypertension may be approximately three years after diagnosis if it goes untreated or sooner if it is severe or there is evidence of right-sided heart failure."   

Maybe I'm crazy, but doctors haven't given me any answers and it's not like she hasn't ever been in heart failure before. 

September 26, 2012

Hannah's having breathing problems. Her ventilator use to beep off 'low minute ventilation' once and a while when she was in a deep sleep at night, nothing to alarming. Over the last week it has been beeping off a lot in big clusters it'll beep low minute ventilation every minute for 5-10 minutes! Then I started noticing it beep off 'low respiratory rate' just as often as low minute ventilation. Then it started to beep of a lot during day time naps.
I took her into the local hospital to drop off the SIM card and have the specialist read what she had been ringing off and how often but the memory card the hospital had sent us home with weren't working with the ventilator so I had to bag not to go another day she needs more pressure support while she sleeps.
Her ventilator was set on trigger, which is the machine being able to tell when she try's to inhale and gives her a breath. Now she has a secondary setting for sleeping that gives her 25 breaths per minute with her still being able to take more breaths.
Hannah is STILL PUKING!!!! We left the hospital with orders to increase her fee rate every day until she reached her normal rate. We haven't been able to increase it at all since we left the hospital. I'm starting to get a little worried about her refluxing into her lungs(maybe that's what's causing her to need more support) and bowel instruction.
Last time we were in the hospital the doctors said it looked like she was backed up with poo and maybe that was why she was puking(makes secne constipated people would puke). They also thought before she might have a narrow spot in her bowel from NEC.. And if that's true then if she's getting backed up it would make scene that if there was a narrowing spot it could be at risk of bursting.

September 22, 2012

Finally after 11 months we have a court date set for a first appearance!!! Very very greatful it's finally happening! And I can estimate how much all Hannah's extraordinary expenses are.

On a side note Hannah has been muh better since the last time she came back from the hospital! She keeps her hme on again and hardly ever crys
My car family <3

September 21, 2012

September 19, 2012

Haileys first stay with the sitter while me and Hannah were in Vic. Miss my little monkey!

September 18, 2012

Nurse Hailey

Nurse Hailey copying what mommy does with Hannah


Twin taking care of sisters trach <3

Back again

  Once again we are back at Victoria hospital. Since the last trip here Hannah has been; puking/gagging a few times every hours, looking dehydrated(chapped lips, sunken soft spot ect), not keeping her HME on, having thick secretions(either from not wearing her HME or from being dehydrated). We made a trip to the local hospital Wednesday night because I was concerned maybe her GJ tube was in the wrong place and also that she might have an infection in her lungs.
  The victoria doctors wanted the local hospital to sent us for an x-ray, during which the x-ray tech coughed on her!!! Then vic asked them to get a secretion sample done and the nurse that was on started to swap the out side of her trach! Like the skin around it(neck chin ect). Then when I told her that they would want to know what was inside her trach not around it she tried to use the same Qtip inside as she did out side. The xray came back showing air in her tummy and we were told to decrease the rate of her feeds to prevent her from puking. The next day I talked to the doctor from Victoria and was told the proper way to take a trach sample and had to go back to the hospital for a second time to get a proper sample done(which involes suctioning her normaly but with a trap that keeps the section's of testing).
  On Saturday night Hannah was puking more then she had been and was looking very dehydrated and sleepy, so when the night nurse came on she called Victoria's doctors and was instructed to take Hannah to the hospital for an IV and to get another look at why she is puking. THEY DID NOTHING, and I mean nothing. They wouldn't give her an IV and its not like with Hannah you can just give her another bottles plus if shes puking you really cant give her anything more then what she is already getting. They told me that Hannah is growing so maybe this is the new Hannah and to make a paediatric appointment and maybe they would have to increase her meds. At this point it was 2:45am and I wasn't leaving with out ATLEAST a blood test if they weren't going to do anything els.. so finally the doctor agrees to give her one and says she will call me tomorrow if she thinks anything is wrong. Sure enough no phone call from her(really big surprise) but I got a call from the victoria doctor who was checking Hannah's file becuase we had called her the night before and she was checking up. Thank god somebody cares!! She wasn't alright with the blood work results and she agreed that the solution wasnt to increase her meds..  So she called us an ambulance and we were on our way back to vic 2 hours later.
 Once we got here they ran a few test took a few xrays and everything came back normal. Hooked her up to an IV to get her rehydrated. The only thing that they could see is that there was still air in her tummy and that she looked really backed up with poo. Her tummy also was gets pectine(yup the stuff you make jam with) in her feeds to thicken her poos and slow down the digestion of the food. They also had just changed her from infant Neocate to Neocate junior with pro biotics which has thickened it up alot. So we have cut pectine out of her feeds unless her stole becomes to loose again then we will add a small amount and we increased her reflex med to the proper amount for her weight.

As for Hailey I have a plan in place for where she will go, if she cant come with us to the hospital. I mentioned a lady before that had helped me out alot; cleaning my place, getting me a desk, change table, diapers, food, baby monitor and even now a home phone cable and internet.. well it turns out she works for the ministry as a foster home/respite home and knows my social worker well and has set up that if grandma for what ever reason is unable to take Hailey that she will go there and can bring Hailey to visit if we have to stay long and can even come and pick us up from victoria hospital if we have no other way. She is an amazing women! I think it is so much better for Hailey to stay with her for a few nights then to be dragged to the hospital. It's unfair for her to be here board out of her mind, there she gets to go to parks play with other kids and have a good time! Even though I really miss Hailey at least she's having a good time and is safe.
And for any haters out there, It's not that I cant handle bringing I'm thinking a head and making good parenting decisions thinking about what's best for Hailey while Hannah is in need of medical attention out of town.

Day in the life videos

I filmed a night and morning after with no nurses to give people an idea how much work goes into taking care of a trach baby. Not everything was filmed because it isnt convenet to turn on your camera in an emergency so a few things were left out. The clips were speed up at x8-x16 due to boringness. 

Day in the life part 1 - Night
Put in bed, reconnect her to her ventilator, 8pm puffers, clean suction machines, make night feeds,
 draw up night and morning meds, draw up pectine for feeds, rinse feeding tube after feed, 6am meds, suctions.. ect

Day in the life part 2 - Morning after
6am meds, 8am puffers, suctions, bath, trach ties, drawing day meds, making day feeds, 
drawing pectine for day feeds, equipment needed for an outting, how equipment is placed in van.. ect 



No time for being lazy with Hannah Banana 

September 08, 2012

Well the first trip back to the hospital didn't last to long. Just over 24hours.
Since I left Hailey with grandma at home I was able to go down with Hannah to get her GJ tube reinserted. They told me that usually they don't let people stay in the room or watch from the office window but they would let me watch from the window. Before they started I asked how they would get the tube in If the hole shrunk. Would you have to cut the stoma to make it bigger or would u just shove it in? He didn't think that it wouldn't fit but sure enough I was right.
Hannah ended up being in radiology for close to two hours. How the procedure is done is; they put a long tube with I wire in first and guide it threw using a big X-ray machine. Then once it is in place they pull the tube out leaving the wire in place to guide the Mickey in the right spot. It was pretty neat to see I took some videos of the screen showing where the wire was. Now I understand why most hospitals can't do it.
They used two different drugs to sedate her, I'm not sure what the first one was but the second one was ketamine(horse tranquilizers). She was defiantly right out from that. You could tell she was trying to fight it but all she could do was move her tongue a bit.

September 07, 2012

507days in Hospital 1 and a half out

507days in Hospital : 1 and a half out, at least its a start!!

    Hannah defiantly was not adjusting to the move home very well. I was completely unable to sooth her. Her heart rate was ringing off high for most of the night at around 160.. Which is really high for Hannah, her normal is usually around 95-112. The heart med she gets slows her heart down so I was very concerned that it was ringing high. Even at her maddest times in the hospital I had never seen it ring high.. it beep low tons.
    The worst part about having to wake up when the nurses leave is going to be Hailey. Surprisingly she sleeps through the alarms fine but she demands cuddles between 12-2 EVERY night. Shes getting worse to.. before I would bring her to bed have her fall back asleep put her back in her crib and then go back to sleep. Well now she realizes when I put her back in her crib and screams bloody murder, which guaranteed would wake Hannah up if I let her cry it out. So I just keep her in my bed all night.
    The first night I was able to roll her off of me when the nurse left. The second night even before the nurses shift ended if she rolled off of me she would wake up cry and climb back on top. Then come time for the nurse to go home there was no way she was letting me leave her in my bed.. so she came with me and then though its play time!! Little sleep for me.
    This morning on top of my little sleep Hannah's GJ tube fell out! If it were just a G tube that would be no problem quick fix. Hell I could have even put the new one back in right there on her change table. But since the J part of the tube goes in the Jejunum that meant it would have to be done by a radiologist. I knew we would end up back in vic hospital, I called vic hospital right away and asked... "Does this mean were coming back?" The nurse told me "No, just go to your Hospitals Emergency they will be able to put it in". I doubted that they could do it in town so I very quickly(because you only have 2 hours to put something in the stoma before it closes over) packed me and Hannah a day or so worth of clothes, all her meds and all her equipment plus the cords. Sure enough our hospital doesn't even comprehend the situation. I repeatedly told them at the admitting desk that it was NOT a Gtube it was a J. I figured by looking at Hannah they wouldn't even make us sit in the waiting room..Trach child in gross emergency waiting room full of very sick people... not the best place for her. When this one lady came in the ambulance attended said to the other "Make sure the truck is properly wiped down". Then I over heard them saying something to her like "No mam you need to get checked out, you have something brewing in your lungs or throat". So at this point I'm really watching the clock stressed out my daughter is going to get VERY sick.
    So we finally get in the room with 15 minutes until the 2 hours max time to get something into her stomach stoma.. You know how it is.. You get in the room and they don't come for at least 15-30 minutes. So It's past the time when the doctor comes in and she starts talking to me and says "Oh I was told it was a G Tube, K let me go make a phone call". EXCUSE ME. I've been repeating my self to everyone and you don't have time for a phone call.
     Finally when they put the catheter in to keep the hole open they had to do a few sizes smaller then what she had in. So I'm not sure how that works for tomorrow, if they just shove in the big one or what. They wouldn't let me give hannah her 12 o'clock heart medication through the catheter. They called Hannah's local pediatrician and she said it was ok to miss it for a few hours and that nothing should be given through the catheter. Well on top of the fact it took us 3 and a half hours by ambulance to Victoria making it time for her 6 o'clock meds (so she completely missed one of her doses of heart med) they gave all her meds through the catheter!! I was furious. I need to work on my momma bear because that is NEVER going to happen again.
Jeneeces place is full tonight so I'm staying in a room at the hospital. Tomorrow she SHOULD be getting a new GJ tube put in and they say we are going home tomorrow. We will see about that.


Lessons learned today:
1: always give meds even if you have to do it behind a doctors back. Giving a med and risking the chance of her refluxing is much better then not giving a med.
2: if a feeding tube falls out throw it out. It fell out for a reason

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Victoia pedi's parents room


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September 06, 2012

Home!

   Can't believe Hannah is really home! It was so weird sitting in the back row of the van on the way home from Vic. Both girls were staring at me for most of the ride. They have both always been my girls but never had a time where they both sat there staring at my like I'm there mom TOGETHER. <3 
By the time we got home I only had enough time to make Hannah a quick feed and then four nurses were walking in the door for orientation. So far I love all my nurses! I had one nurse till 4am so I got to sleep a little but 4 am came quick! I'm dreading the adrenaline running off and when 4/6am becomes an every day thing to me when I have to drag my self out of bed rather then be willing to do it. Thankfully Hannah isn't as fradgial as most trach babies and I can sleep in the same room as her once the nurse leaves or if a nurse isn't scheduled that night. I'd still have to listen for alarms, get up for feed changes and give her meds but it's more rest then I'd get pulling all nighters.
Hannah is a lot more cranky today. She crys when she plays with a toy to be picked up, then crys she wants to play with the toy. She was so upset today from being over tired, we even had to give her oxygen to calm her down. For the next few weeks until she gets use to being here im going to force naps so she doesn't get over tired and put her self in a state like that again. She use to be so easy would nap anywhere never cry.. She can defiantly tell she's not in the hospital anymore. Hailey on the other hand is taking it way better then I expect atleast so far.
Tonight I have a nurse untill 6am, very much looking forward to the two extra hours of sleep. Tomorrow evening there will be 4 hours when there are five nurses at one time here......

September 03, 2012

Our place is liveable

New door sign

Hannah's Room


Phone books under one side of the crib
 instead of using a wedge
Hailey's room
My room







Its changed a bit since my last post The Girls Rooms