Donate for Daphne

8 months old today

This week started out stressful again, but has still been a good week overall.  Sunday night Daphne was having trouble breathing and needed to be bagged and suctioned.  Monday morning a chest x-ray revealed that a part of her lung may have collapsed or that fluid may have collected in her lung.  We were told that they would just continue to monitor the situation and that it was not uncommon for something like that to happen. 

Tuesday was much scarier.  An ultrasound showed no flow in the portal vein.  Daphne would have to go into surgery again to remove the clot.  We were devastated.  It was just one week ago that she had surgery to remove a clot after the first transplant, and that surgery had not gone well.  This surgery was very different though.  Last week Daphne’s clot was in the portal vein and the hepatic artery.  This week it was just in the portal vein which wasn’t as bad.  Last week, right before the ultrasound found the clot her blood work numbers started to show problems.  This week the clot was found before her liver numbers changed at all.  And also, this week Daphne was much healthier going into the surgery. 

After Daphne was done Dr. Shapiro explained that her main portal vein was only a few millimetres wide so he added a jump graft from donor vessel that is much wider.  This should help us avoid clots.  While she was in surgery Dr. Shapiro also connected her bowels, a surgery she was supposed to have the next day.  The only drawback was that now it would take even longer to close Daphne’s incision.  Things are too swollen to close her up. 

The rest of the week was less eventful fortunately.  Daphne’s progress was monitored closely.  Further x-rays showed that her lungs were clear.  Friday did bring some bad news though.  Daphne’s dressing had some fresh blood on it, also her ultrasound showed a clot on the outside of her liver.  Her heparin was stopped until her bleeding subsided, which it did and now the heparin is back on again.  Finding the right balance with her blood is very tricky.  It is extremely important that Daphne not form clots and that is why she is on heparin to thin her blood.  On the other hand, bleeding isn’t good for her either. 

At home we have been taken good care of by many friends and family.  Poor Rowan was sick this week, now her fever is gone but she is still a bit stuffed up and has a scratchy throat. 

Transplant

There has been so much going on this week I will start with a day by day description.  Hopefully I can get all the details straight.  The days are starting to blend together so I do hope I can write a coherent blog.

Sunday

Daphne’s ascites was getting so difficult to manage that the doctor tried a six hour albumin infusion.  We spent all day at the hospital.  In the evening we were allowed to go home on pass.  As we were leaving I walked by a group of people hugging and crying and talking in low voices.  I felt so sad for that family even though I had no idea what had happened.  My heart was so heavy that night knowing that a family would have to go through that to give Daphne her life saving transplant.  I was so sad and tired in fact that I went to bed with only my cell phone not the cordless phone as well like I usually do. 

Monday

At 3 am Brad came into our room (Daphne and I sleep in a separate room so I can manage tube feeding problems without waking up Brad.) He was talking on the phone.  I remember wondering why in the world he was taking an early morning work phone call in my room (I was too tired to think clearly!)  He had to tell me a couple times that this was THE call we were waiting for.  We turned off her tube feed; she would now be NPO (nothing by mouth) in preparation for transplant.  Daphne was so happy to be awakened and held at 3 am. 

When we got to the hospital we had to walk around with Daphne a great deal because she was not happy to be NPO.  There were also blood tests, swabs and urine samples needed pre transplant. 

Finally at about 2:30pm they were ready to take her into the OR. 

At 10 pm we heard she was now in the PICU.  We were so relieved and happy to see her again.  She still looked like herself and we had braced ourselves for the tubes and all the support she would need in the PICU.  They had closed up the skin over her incision, but not the muscle underneath.  This is standard transplant procedure because so often more surgeries are required for “fine-tuning.”  Also, this could add to much pressure to all of her internal organs which have swollen due to the stress of surgery. 

She was stable and everything was looking good so Brad and I went home to get a good nights rest.

Tuesday

 In the morning when I got back everything still looked wonderful. 

I went home for lunch and Brad was with Daphne.  I was getting Rowan ready to visit at the hospital at 3pm, when Brad called with some bad news.  I left Rowan at home with my Mom and rushed back to the hospital by myself.  An ultrasound had shown that there was no blood flow to the liver!  They were planning on taking her back to the OR soon to remove some blood clots out of her hepatic artery.  When we signed the consent the surgeon said it would be “One, to two, to three hours.”  This was at 4pm.  They didn’t bring her out until 10pm. 

When they did we were told that as they were working to remove clots from both her hepatic artery and her portal vein she started losing a lot of blood.  We almost lost her during that surgery.  During surgery she became Status 4f, that means she had less than 48 hours to live without a transplant.  The call was made nationally for a liver and before she was out of surgery they had a liver for her from “the east coast”.  The liver was expected to arrive the next day at 6pm.  We needed to keep her alive till then.  That night was the longest night of our lives.  We were up all night with Daphne, begging and pleading with her to keep fighting.  Begging and pleading with God not to let our little one slip away.  In the PICU she was still losing a great deal of blood.  The nurses were constantly charting her blood loss and giving her more blood product.  We were told that just in the PICU that night she used 3.6 L red blood cells, 1.5 L plasma, and 3 units of platelets.  That is more than her weight in blood. 

Wednesday

I think it was around 3am that her blood loss started to get even worst.  She was losing about a cup of blood every 15 minutes.  In the morning Dr. Bigham decided her only chance at surviving until the next liver came was to take her into the OR and remove this liver and manage her blood loss in the OR.  Our family knew how serious Daphne’s condition was but we didn’t tell them that Dr. Bigham had said Daphne was so fragile she might not even survive being transported from the PICU down the hall to the OR. 

We were told very clearly that this could be the last time we might see our precious baby alive.  We were obviously very distraught.  I think I wept buckets of tears for her.  My prayers were desperate cries of help for my baby.  Before she left for the OR I again pleaded with her to hang on.  I told her how I didn’t think I could go on without her.  I told her how much her sister loved her, how much her Daddy loved her, how much everyone loved her.  I promised to take her to the beach.   I reminded her of Rowan’s plan for the whole family to dress up like the Scooby Doo gang next Halloween.   I also did tell her if she just had to go it would be ok.  That was the hardest thing ever.  I told her I would meet up with her again even if she had to go.  But I did beg and plead with her to be strong.  I told her I loved her and believed in her so very much.  I told her we were not giving up on her. 

They wheeled her down the hall.  Brad and I went to lie down and weep. 

My memory is a little fuzzy on when all of this happened.  I was told that she was waiting open and without a liver in the OR for 5 or 6 hours. 

We were waiting in the PICU waiting area when at 6:05pm we saw three EMTs walk down the hall carrying a cooler.  No one actually told us this was the liver, but we were very excited.  We were also nervous because no one ever told us when the actual transplant was starting.  But it didn’t take very long because they brought Daphne back to the PICU at 10pm.  This time they were unable to close up her incision at all due to swelling.  She was brought back to the PICU with her incision completely open, with just a dressing over top. 

This picture can give everyone an idea of all the life saving technology that kept Daphne alive.  The one thing you can’t really see is the dialysis machine.  It is behind the pillar. 

That night the doctors and the nurses were struggling with low blood pressure all night. 

Thursday

A major turning point was at 6:30am, the nurse changed all of her blood pressure meds in anticipation for shift change.  Changing from the OR meds to the meds mixed in the PICU caused her blood pressure to go from 71 to 155!  From there they immediately started weaning her off of her blood pressure medications and she became stable.  They don’t exactly know why this happened!  In theory the OR and PICU meds should have been the same.  It’s easy to say there was some sort of human error that got sorted out through all of this, but we feel like this was a moment when God’s hand was turning things around for good. 

This turned out to be an amazing day.  Daphne opened her eyes a few times.  Brad and I were ecstatic and in awe of the miracle we just witnessed!  We are so happy the doctors never gave up on our little angel.  Talking to Daphne when she had her eyes open was such a good feeling. 

That night we had some minor bumps, but all was well. 

Friday

Two major things happened on Friday.  She had another surgery at 6 pm.  The surgery was to attach her bile ducts, remove some gauze that had been left to control bleeding, and to access the damage that was done to her large intestine during all of this.  This surgery took about 2.5 hours.  A part of her large intestine had to be removed.  Currently there are two ends of her intestines not connected.  Doctor Shapiro is confident that they can be connected in 4 to 5 days after things have settled down.  The other major development of the day was to take her off the oscillating ventilator and onto a regular one. 

Saturday

That brings us to today.  Daphne is doing well.  Some people talk about how we need to take life day by day, but Brad and I have really learned to take things moment by moment.  We know how fast things can change.  We are also very aware of how far Daphne has come and how far she still has to go.  She is a fighter and has come this far, everyday we remind her of that.  We are also so very thankful for everyone who has brought us to this place.  Doctors, surgeons, nurses, respiratory therapists, our superstar anaesthetist, the entire transplant team are just some of the professionals who we are thankful for.  We are also so thankful for the tremendous support we have had from our family.  They have been with us through it all; taking care of Rowan, feeding us, keeping us company in hospital, taking care of our house.  The outpouring of support from friends, family, and church family on facebook has also been an incredible encouragement.  Also, words cannot express our gratitude toward donors.  The amount of blood that poured in and out of our baby was enormous.  Please donate blood!  I would like to keep track of people who donate blood in Daphne’s name to see if we can’t restock the blood bank.  Like I said on facebook, please send me a picture of you donating in Daphne’s name so I can keep them for her to see.  And of course, there are her two angels who donated a piece of their lives to help Daphne.  I am so thankful that two separate families chose to donate their loved ones organs in the midst of their grief.  I encourage everyone to discuss organ donation with their families now.  And most of all we are so thankful to a God who loves his children more than we can imagine, a God who is mighty and capable of miracles.  We don’t have the answers as to why this has happened to us, but we know suffering and anguish are not unique to just us.  There is a world full of hurt, but God is good and his love knows no bounds. 

Waiting

Monday Daphne had another ultrasound.  There were no clots visible.  One thing they could see however, was that the flow in her portal vein has reversed. This is why her ascites is getting difficult to manage.  Daphne had albumin and lasix 4 times last week and just today did we see any change in her tummy.  The doctor also mentioned that now instead of becoming more and more enlarged her liver is starting to shrink.  All of these things are expected outcomes with severe liver disease. 

A nice thing about this week is that we have been able to go home at night to sleep.  It is so nice to sleep in our own bed and wake up and shower in our own house.  I also get to spend more time with Rowan this way. 

This weekend we are also spending more time at home.  Here are some pictures of the girls this week. 

PICC line

This was another busy week.   We had spent a wonderful weekend together.  Rowan has taken to playing doctor. 

It felt so good to all sit around the table together.  Rowan and Daphne were so happy to be together.

Sunday we did go back to the hospital to get her IV flushed, but it wasn’t working anymore so it was removed.  That made bath time simple that night, but it did mean she would need something more long term.

Monday morning we packed our bags and went back to the hospital.  We dressed Rowan and Daphne up for Halloween since there was trick or treating at the Stollery that morning.  Rowan was a fairy and Daphne was a monkey!

Since Daphne needed more albumin soon and she lost her last IV site we had to plan for a PICC line.  This is like an IV, only it is advanced much farther (toward the heart).  A PICC line lasts much longer than a regular IV site.  They could not get Daphne in that day but planned on it for Tuesday.  Daphne would need to go under general anaesthesia for this so Tuesday she would have to be NPO for a while again.  Since the NPO might go long and she really needed more albumin in the meantime we did need to give her another regular IV.  This was a nightmare!  A doctor (who is apparently very good at IVs with babies) took 2 tries.  We gave Daphne a break and later on a PICU nurse tried twice unsuccessfully as well and then we decided to use a scalp vein.  There is something so disturbing about seeing a baby with an IV in their head, but I do wish we would have done it sooner and saved Daphne from having 5 pokes! 

Tuesday Daphne had her albumin and lasix and her NPO lasted 10 hours.  She handled it pretty well.  We did a lot of walking around with her in the stroller to help make her content.  I am very happy with the PICC line.  It will save her from so many pokes and the site doesn’t leak at all like her last broviac did. 

Here is a picture of Daphne getting her vitals checked.  You can see a bit of the PICC line on her right arm.  In this picture you can see Daphne being fascinated by her glowing red toe.  It was at about this age that Rowan really seemed to discover her toes. 

We were hoping the rest of the week would be boring now that the PICC line was out of the way.  Unfortunately, Wednesday Daphne would barely nurse and was not happy at all.  Her blood work showed that her ammonia was high and her hemoglobin was low.  She received some blood to help her hemoglobin. 

The next day Daphne was put on almost continual NG tube feed, 20 hours a day.  This really improved her mood and her energy level.  She started nursing again!  She should be getting lots of calories now!  And as you can see she still manages to look gorgeous even while in hospital!

We are also not letting the continual feed feel like a prison sentence, we are still getting out of the room as much as possible.   We spend a lot of time walking around the hospital.  Daphne and I also love the Healing Gardens.  Every hospital needs a beautiful space like this. 

Friday we were given the ok to go home on pass again.  The only thing we need to do is go back every 12 hours to get her PICC line flushed.  That is a bit of a bummer, but it’s worth it.  Daphne is so content and happy at home and Rowan is absolutely thrilled that we are all together again!