July 2, 2009 Update

Finally, I have the opportunity to write an update on Mikylah.  You’d wonder why it would take so long when I am at home everyday.  Life has really been crazy here with trying to care for Mikylah and still having time to be a mother to my other children.  I will back up a bit to get you caught up.

We had our appointment at Sick Kids on June 3, 2009 with the surgeon that performed Mikylah’s surgery.  He said that her scar was healing well, but that it is hard to determine her progress, so he ordered another series of blood tests.  Her weight at that time was 4.75 kg which is still underweight as far as the doctor’s are concerned.  They decide to add another medication to her “repertoire.”  This one is supposed to help her stomach contract and pass the formula through quicker.  Because she vomits all the time, the idea is that if the food passes through her stomach quicker, it will leave less in her tummy to come back up. After a 9 hour day, we turned around and drove the 5 hours it takes us to get home. 

June 6, 2009—There was a benefit held for Mikylah at the Powassan Legion.   The generosity of the local businesses was outstanding.  We wanted to say thank you to all businesses and people within the communities that helped out with it.  Thank you especially to the staff and customers at the “Future Shop” for all your hard work and donations.  We truly appreciate the time you took to educate all your customers about Mikylah.  We also wanted to thank the “Nugget” for printing Mikylah’s story and to the “Brick” for your continued efforts.  The people that attended the benefit left with some pretty amazing prizes, and as far as we can tell, the night was great.

June 8, 2009. Back to Sick Kids for another check up, and of course, blood work.  This time it showed that Mikylah’s bilirubin levels were 42 (still high) and that her INR count was high.  Between those numbers and the fact that her weight was only 4.85 kg, the team of doctors decided that Mikylah needed to be seen every week!

June 15, 2009.  We took my children with us this week.  They wanted to see the hospital and just what their sister has to endure.  They were quite upset in the lab during the blood tests.  They have heard Mikylah cry because she was hungry or tired, but never because she was in pain.  It was difficult for them to be there, but they were both very glad they went.

The blood work revealed more this week.  Mikylah’s bilirubin levels are increasing and her INR is still elevated.  We had a conversation with the team about a liver transplant today.  I was under the impression that if she received a transplant, she would carry on with a normal life.  This is not the case.  We were told that essentially you trade in one set of problems for another.  There is risk of infection, rejection, and she would still be on a series of medications.  We talked about a living versus a non-living donor.  With a living donor, Mikylah would receive a piece of their liver and “attach” the new liver to her Kasai.  With a non-living donor, she would receive the bile ducts also and hope that it would function normally.  Although the chance of this happening always plays in the back of my mind, I’m not ready to face the reality of it.  I have been feeling very angry.  Without having an explanation as to why or how Mikylah got sick, there is no one and nothing to blame this on.  We say she drew the”short straw from the pack”.  I think that’s just to satisfy everyone that asks the question “how did she get it?”  Unfortunately, it doesn’t satisfy me.

June 22, 2009.  Mikylah had an appointment with our family physician this week to get another round of shots for Hepatitis B and Menjugate.  Her weight did not change and despite the new medicine, she continues to vomit.  We were back to Sick Kids today.  Mikylah had an ultrasound scheduled for 9:00 a.m., then blood work, and finally our clinic appointment.  The time you spend waiting for results is agonizing.  We have become accustomed to our routine at home, and to the care our daughter needs, and it is normal.  Then we make a trip to the hospital and get the knees knocked out from under us.  It’s the slap across the face that brings us back to the reality that we have a sick child.  Mikylah’s blood shows that her levels are still out of range and her ultrasound showed that there is scarring on her liver and fibrosis.  These reality results have become so devastating to our family.  Anybody that has had the pleasure of meeting Mikylah knows that she has the biggest, most beautiful smile you’ve ever seen, and it’s very infectious!  She is such a sweet, lovely baby and if it weren’t for her jaundiced skin and eyes, you would not think there was anything wrong with her.  We are starting to feel very down and helpless with each trip we make to Toronto now.

Well, it’s the end of the school year.  The children at school are so honest.  They always ask why Mikylah’s eyes are green (they’re actually blue but against the whites of her eyes, which are still yellow, the combination of the two colours makes her entire eye appear green).  The school set up an information display about Mikylah to educate the students and parents, and had some fun activities planned for the students on Mikylah’s behalf.  To everyone at Sunset Park Public School, we say a great big “thank you!”  My son graduated from grade 6, and my daughter is on her way into grade 5.  They have done so well and achieved academic awards, and truly deserve to enjoy themselves.

  On Friday June 26, 2009 Mikylah had a horrible day.  She vomited immediately after every bottle.  She even rejected her medicine when the nipple was put to her lips.  When you watch her, it’s as though she is making herself sick (like when a person suffering from bulimia can “train” themselves to vomit without the use of fingers down the throat).  I called Sick Kids and they said to get her to the emergency room at our local hospital.   While there, Mikylah had her oxygen levels checked, her temperature taken, an exam of her abdomen, and of course her blood tested.  Apart from the obvious findings of her levels being out, it could not be determined what the cause of her vomiting was.  Her stomach does not seem to have the capacity to hold any more than 2 ounces of fluid at a time.  So now instead of making 4 ounce bottles, we are down to 2 ounce bottles.  I cannot foresee how she will gain weight at this rate.  Our next appointment is of course next week, and then I have to return to work.  Hopefully it won’t be too long before I get a chance to update again, and that this next appointment gives us a glimmer of light….although I’m definitely not looking forward to going. 

August 14, 2009 Update

July 19, 2009 Well here we are, back at Sick Kids…only this time we’re not here for just a check up…Mikylah was re-admitted today. I probably should back up a little bit. We had one appointment on July 7, 2009 and Mikylah weighed 5.16 kg. Still not enough of a gain so the doctors decided to see how she would make out the following week. Our second appointment was on July 14, 2009 (the next day after my return to work) and Mikylah only weighed 5.22 kg. The doctors were concerned that she doesn’t have the ability to thrive and wanted to admit her the next day. We explained that we had to make arrangements for the other children and with work so it was decided that we could arrive on Sunday July 19, 2009 at 11:00 a.m. to be admitted. And here we are.

We were supposed to be on the 6th floor ward A which is where we stayed when Mikylah was first admitted in April for her biopsy. Unfortunately, that ward was full, so we ended up in ward B which isn’t that big of a deal except it’s very quiet over here. After we “checked in” and got settled Mikylah was weighed (5.27 kg) her vitals taken and of course blood work done. It was established prior to coming this time that she would be getting a feeding tube put in to help her get sufficient calories throughout the day and especially at night. I did not want to be a part of the process of shoving a tube through Mikylah’s nose to her stomach so her daddy went with her. I however, could still hear her screams from down the hall.

When Mikylah came back to the room she didn’t have the feeding tube in. She is very tiny and has very tiny nostrils and the two nurses that were there, could not get the tube fed through, so we had to wait for a third nurse to come. Approximately an hour after the first attempt, Mikylah was off again to try to get the tube in. Many screams later, it was in. Then it was our turn to be shown how to feed her with it in. Throughout the night it would be up to a machine to slowly allow the formula to drain into her tummy, but during the day, it was up to us. It’s actually quite simple. We had to attached the loose end of the NG tube to a giant syringe and keep it up higher than Mikylah’s head and let gravity do the work. Simple, yet disturbing.

The team of doctors along with the dieticians also decided to add an oil to Mikylah’s formula call MCT (medium chained triglyceride) purely to add extra calories to her formula. We are now quite used to the hospital routines and settle ourselves for the night. That was enough for one day I think.

July 21, 2009 After a restless sleep, we started our day by meeting with the transplant nurse. She gave us some information to read through and briefly went through the procedures that would be taking place while we were in the hospital this time.

Mikylah’s day was relatively un-eventful (if you can imagine). Her weight today was 5.31 kg so there was a slight increase which we were so happy about. We were instructed not to feed her via the tube during the day, so she would still be interested in taking her formula from a bottle. She had an appointment with the occupational therapy team to assess her development. Not to our surprise (we’re allowed to brag, we’re her parents!) Mikylah blew them all away. She does not display any signs of being developmentally delayed, and in fact has surpassed some of the milestones that 5 month old babies should be reaching.

The team of doctors have been very honest with us in preparing us for the day when Mikylah needs a liver transplant. It is no longer an “if” situation, it’s a “when”. In saying that the first test she had to undergo was an x-ray today to check for rickets. Rickets, as I’ve come to learn, is a lack of vitamin D in your bones. This was the first of a long series of tests to follow…..

July 22, 2009 Mikylah had a sneezing fit in the middle of the night last night and actually ended up sneezing out her NG tube. The nurse tried to feed it back through her nose to no avail. She decided that she would leave it out for the night, and try again later. Today was unreal! Mikylah had a day full of testing. I won’t explain everything because it would take far too long, but I’ll give you a timeline of just how her day went. She had to fast today beginning at 4:00 a.m. Her first appointment was at 8:45 a.m. with nuclear medicine. They injected dye into her veins to see if her kidneys were working properly. She hated this! Not only did she not like the needles of course, but then she was strapped to a board, completely immobilized except for her head and put into a machine that illuminated the dye so the technicians could follow its path through her body. Once this was finished, Mikylah had to have her first nuclear blood test at 10:40 a.m. and her second one an hour later at 11:40a.m. The nurse let us know that for the next few hours, Mikylah’s pee would be radioactive! Next she had an ultrasound at 1:00 p.m. and then an ECG at 2:30 p.m. where they attached 14 electrodes to her body. Later that night she had her immunization needles but had an allergic reaction to the Emla cream that was put on prior to the shots. Not surprisingly she was very sick today because her schedule was so mixed up. The nurses didn’t end up putting the NG tube back in today to give Mikylah a break from all the stress she went through. It was a surprise however that her weight today was 5.346 kg.

July 23, 2009 If we thought yesterday was bad, then today was a close second. Mikylah had to fast again today starting at 4:00 a.m. She had an ECHO scheduled for this morning, and had to be sedated for it. It’s very scary to see your child under sedation. She was completely lifeless. We were handed a brochure to read of side effects to watch for after she wakes up from the sedation. The nurses don’t know me very well. I’m a very paranoid mother to begin with, so when there are symptoms to monitor for, I probably go a bit overboard. When we got back to our room, Mikylah was still very sleepy. The babies formulas are kept in a common refrigerator in which ever ward you are staying in. We went to get Mikylah’s formula today and there wasn’t any there. It’s not a simple process to get some. First your nurse has to be notified and then she has to contact the dietary services. Usually about 2 hours later, you might find your formula has made it to the fridge. The doctors decided to add more MCT oil to Mikylah’s formula making it a total of 2 ml per bottle. This unfortunately makes her go to the bathroom a lot! Consequently, her weight dropped today back down to 5.31 kg. We’re not sure if its sleep deprivation or being surrounded by the same four walls for the past 4 days, but we are starting to get frustrated with everything.

July 26 2009 Nothing much happened the past few days. Mikylah’s weight on July 24, 2009 was 5.34 kg, and on July 25, 2009 was 5.37 kg. We’ve basically been left to ourselves just carrying on with our regular schedule. Periodically, a doctor or nurse will stop by but with all the testing done, the wait is to see if Mikylah has the ability to gain and maintain the amount of weight they would like her to, which is about 30 grams per day.

We were permitted to go outside today, and despite the threat of rain, we put Mikylah in the stroller and headed out for some fresh air. We didn’t actually go too far for two reasons: 1. we don’t know our way around Toronto, and 2. we’re terrified of Toronto! Needless to day we ended up getting caught in a torrential downpour so our walk didn’t last too long.

There was a bit of confusion here today. Mikylah’s spot in the fridge for her formula was empty again, so we had to go through the proper channels again to get it for her, and, the wrong dose of her medication was sent for her. It’s the parent’s responsibility to administer the medicine to the child unless of course they can’t. Thank goodness we double check everything and caught the error. We did get some good news. Mikylah’s blood type is AB+ which makes her eligible to receive any blood product. We have decided to have ourselves tested so that when the time comes, the doctors can remove a piece of our liver to transplant into Mikylah. The risks are no different than that from a non-living donor. The only factor that is eliminated is the waiting period. I’m sure we’ll get more information about that as the time draws closer.

August 14, 2009 I know that I skipped a few days, so I’ll briefly back up. On July 27, 2009 Mikylah’s weight dropped back down to 5.34 kg and there was talk of putting the feeding tube back in and sending us home. We would have to have a crash course on feeding the tube through her nose ourselves so that when we’re at home, we could properly look after it. I wasn’t looking forward to this at all, but you do what you have to for your child. On July 30, 2009 at 12:00 p.m. the team of doctors decided to discharge us and let Mikylah try on her own to thrive. So we packed our things and headed for home, minus the feeding tube!

Our next trip to Sick Kids was on August 11, 2009 where Mikylah went through the typical routine again. Her weight was 5.45 kg and her liver doctor decided to let her go a while longer to see if she can gain more weight. The idea I think is that if she can gain the weight and keep it on, her recovery from transplant would be quicker. We go again on August 17, 2009 only this visit is with the thrombosis team regarding the blood clot that is still present in Mikylah’s liver. The clinic would like us to stop by for a quick weight check so we are very grateful to kill two birds with one stone this time.

I have to once again express our thanks to all the people and business that are helping Mikylah. Through the Moose radio station, other businesses have heard about Mikylah and have organized different charity events, the most recent being a car wash held at Bumper to Bumper. The staff and families there were terrific and other local businesses donated gifts to be won through ticket sales.

We also would like to thank the individuals that have helped our family and Mikylah. Unfortunately, we have no way of knowing who you are, but would like you to know that we truly appreciate your generosity from the bottom of our hearts and hope to have a day when we can thank you personally.

Thank you also to everyone that is praying for us. We know that without you, none of us would have the strength to endure this. Thank you also to Tara Young at Best Western for all your hard work, and to the Brick. You definitely went above and beyond!

There are two upcoming events that we are participating in. The first is the Trout Creek Fall Fair, and the second is the Powassan Fall Fair.

In both we will have an information booth about Mikylah and Biliary Atresia, and will have silicone wrist bands for sale to wear for hope for Mikylah. The other children are very excited about this. I asked them before about their feelings about their sister and her disease. Their response was, “We love her no matter what. Just think if she didn’t have biliary atresia, we wouldn’t get to participate in all these things, and wouldn’t have gotten to experience the things we have or met the people we’ve met”.

Sometimes, children are so much smarter than we give them credit for. As for how Mikylah is doing (which is a question I get asked daily), we take it one day at a time. She is doing as well as she can. She is nearly sitting up unassisted, and of course starting to teethe. Unfortunately she cannot have any Tempra or Tylenol, because it passes right through the liver, so she chews a lot on ice cubes.

Well, I think that’s all I’ve got for now. Thank you to everyone who reads these updates and I apologize for taking so long to get them posted. I hope to have some pictures put on soon, so you can see Mikylah. Until then…..