Extubation

The major accomplishment of this week is getting Daphne off of the ventilator!  This happened on Boxing Day (the 26^th).  It also happened to be Daphne’s 9 month birthday.  What a birthday present!  It has been great that Daphne has taken this step forward. 

There have been some complications though.  Daphne has been breathing on her own, but she has been working very hard to do so at times.  Chest x-rays have shown a lot of fluid around the lungs.  They decided to put a chest tube in to drain out the fluid.  A test of the fluid showed something called chylothorax.  It means that at some point a lymph node has been nicked causing lymphatic fluids to leak.  To stop this, Daphne’s diet has been changed to a special formula with medium chain triglycerides instead of long chain triglycerides.   This should reduce the leaking and give her a chance to heal. 

This week Daphne’s WBC also went up again.  She had a fever and has had diarrhea.  They have put her back on more antibiotics again and she had another CT scan.  The CT scan didn’t show any problems.  She is also dealing with withdrawal symptoms, which could also explain a lot of her problems this week.  It has been great to hold Daphne more easily and not see that huge tube in her nose, but seeing her work to breathe, and hearing her sad little cry is hard too.   But overall, we are making steps forward which is great!  She has come a long way. 

Getting ready for Christmas

Daphne’s broviac surgery last Saturday went well.  Her broviac has two ports in it which is very helpful.  Right now her broviac is her only line.  It is great to see her with less lines.  At one point I think she had six lines for IV access.  Her broviac surgery was done by Dr. Dicken, who has shown amazing care and attention to Daphne.  This was her third time in the OR with him and we were able to send her along with full confidence that she was being well taken care of.  We later found out that Julie, a good friend of ours from church, was one of the nurses in the OR too.  Another great comfort to us. 

Sunday we did get some bad news.  Daphne has a JP drain in her abdomen for any fluid that might accumulate in there.  The fluid draining out of her had been tested and it tested very high for lipase.  Lipase is from the pancreas.  This means that her pancreas may have been nicked during one of the surgeries.  Her lipase levels in her blood are still good which means her pancreas is still functioning well, just that lipase is leaking out into her abdomen.    The transplant surgeon didn’t seem worried; he said the JP drain will have to stay for atleast a month to six weeks to make sure the lipase doesn’t stay in.  The lipase is an enzyme for digesting food so it isn’t good to have in the abdomen.  I sure hope this issue resolves quickly, not cause I am impatient (this process has taught me to wait) but because I worry about the damage a digestive enzyme can do in her abdomen. 

Sunday wasn’t all bad though.  We got to hold Daphne!  It usually takes 4 people to get her from the bed into our arms safely since she is on the ventilator and the lines to her IV pole aren’t very long, but it is worth it.  She was also very smiley and playful on many occasions this week.

Monday Daphne had a metabolic cart study.  It is a study to see how many calories Daphne needs.  Up till now her calorie needs were very low, but on Monday they were much higher.  This is a wonderful thing!  Her body is gearing up basically, although I’m sure a dietician could explain it much better than I can. 

During the beginning of the week there were some bumps.  She had fevers at times, some of her liver numbers were up, her WBC went up again, she tested positive for EBV virus, she did not respond well to weaning off her morphine and sedation well one day, she also did not respond well to continual weaning from the ventilator, but somehow none of those things seemed that bad and the week has still ended well.  Some of her antibiotics were changed and now her temperature seems to be under control and her WBC has gone down.  As for EBV she is being treated for it.  The EBV was not that surprising since we already knew both of her donors had tested positive for it, which means at some point her donors had gotten “Mono”.  As for the morphine and sedation, they had been weaning her off of them for a bit and at one point she just seemed to need a break.  It was kept steady for a few days and now they have started to wean her off them slowly once more.  The same goes for the ventilator.  Today she was ready to start weaning off of it again but more slowly this time. 

Because some of her liver numbers were up she did get a biopsy this week.  It does not show signs of rejection or any signs of infection so far.  Since then her liver numbers have started to go down again.  She has also been tolerating her feeds really well.  I have run out of expressed breastmilk so now she is on Pregestimil.  Also her TPN is off.  TPN is total parenteral nutrition, which means nutrition through an IV.  I recently learned that TPN is hard on the liver, so maybe this explains some of what has been going on.  Daphne also had another CT scan this week to check for collections of fluid.  The images did not show any collections. 

As for today (Friday) she looks so beautiful.  She amazes us everyday.  The only thing today is that there was some bilirubin in her JP drain. 

Also I just had to include some pictures of Rowan at her Sunday School Christmas Concert.  I have to confess, she did not attend regularly leading up to it and I didn’t even know which songs they were doing, so she was very ill-prepared to say the least, but she was adorable in her leopard print dress and bright pink puma high tops she calls her “pumped up kicks.”  She also did not like staying put with the other kids and obviously has not had lessons on sitting like a lady when wearing a dress in front of everyone at church. 

Oh well, she wasn't the only one not singing, but she had a blast catching up with her cousin Carys afterwards.

She does miss her sister though.  Before bed she talks about her the most.  Tonight she was sobbing about it.  Brad and I take turns during the day being with Daphne and with Rowan and a Grandma or Aunt takes over for the evening so we can both put Rowan to bed.  The other day Brad told her that they (him and Rowan) were going to pick me up earlier from the hospital so we could have dinner together and then drive down candy cane lane.  She did not like this idea because then Daphne would be all alone.  It was so sweet that she thought of her.  Once we explained that Grandma would be at the hospital with Daphne she was ok with it. 

Bowel perforation

Daphne’s last liver biopsy did show some signs of rejection.  Her doctors increased her anti-rejection drugs.  Although rejection is very serious, the solution seemed pretty straight forward, as she had been on the lowest level of anti-rejection drugs at the time. 

Sunday she was given another CT scan because her abdomen was getting bigger.  She was given contrast and it didn’t show a leak, but they could tell there was more air in her tummy since the last CT.  This air had to come from somewhere, but without the contrast leaking through the bowels in the scan it wasn’t clear what was going on.  There was a very strong difference of opinion on the issue.  The intensivists were certain there was a perforation in the bowels regardless of what the CT said.  The transplant surgeons didn’t agree. 

Monday the transplant surgeons did decide to take Daphne to the OR for a wash-out and to look at her bowels.  They did find a small perforation!  They closed up the perforation, did the wash-out and removed her dying spleen.  After all of that there was so much room inside of Daphne’s abdomen they decided to close her up completely, skin and fascia (muscle).  This might sound like an obvious thing to do next, but sometimes it can take a very long time before they close up the muscles as well, some transplant kids are sent home without that done.  As for the explanation as to why this perforation never showed on any of the CT scans was that the hole was in the length of bowel off of her liver not her stomach.  If you have studied anatomy and that sounds strange to you it should be; Daphne’s anatomy is very unique at this point.  The rest of us have a hepatic duct coming off of our livers not a length of bowel.  This perforation was what was keeping her WBC high, but because of the location of the perforation she wasn’t getting seriously ill like most people do when there is a hole in their bowels.

We feel like this is a major turning point.  Her WBC is down now.   She has been doing well off of dialysis.  They even took out the dialysis line in her neck.  We are now waiting for her lungs to get stronger.  Being on the ventilator so long has made them weak.  Weaning her off the ventilator will be a slow process. We will just need to be patient.  Today Daphne had a minor surgery to get a broviac.  It’s a more long term way of getting IV meds and blood work.  Her PICC line needed to be removed.  Getting a broviac seems like a very positive step forward, like we are preparing for life at home post-transplant.  The broviac will be used for all the frequent blood work she will need even after we are sent home. 

One more thing, this week Daphne has also been moved to a new PICU unit.  We have a window and it is spacious and quiet. 

Tests, tests and more tests!

Last week it seemed that the white blood count was going down.  Unfortunately, Monday it started to rise again.  A good thing that happened Monday was we started feeding Daphne again.  She started with 3 mL/hour of breast milk through her NJ tube and now has worked her way up to 9 mL/hour.  She has tolerated her feeds well so far. 

Tuesday another setback was putting Daphne back on dialysis.  Her kidneys weren’t too bad, but since the lasix dose she needed to help her pee was hard on her kidneys, dialysis seemed like a better choice.  Also, a throat swab came back positive for the CMV virus.  We are not sure where it came from.  Pre-transplant she was negative for it and both her donors were negative for it too.  The two possible ways this might have happened was either from some of the blood she received or that she already had CMV despite what her pre-transplant test had indicated.  CMV is very common.  I was told almost 90% of the population will have it by the time they reach 18.  For most people it isn’t a big deal, but since Daphne’s immunity is suppressed she will be on meds for it for the rest of her life. 

Wednesday Daphne had a CT scan scheduled.  They were worried that the fluid accumulating in her tummy might be infected.  The scan didn’t indicate that the fluid was infected.  Unfortunately, it showed other things.  It found a clot in her splenic vein.  The clot has been there long enough that her spleen is dying.  Since you can live without a spleen they do not plan to do anything about this.  It was terrible to hear the word clot again, but they think the clot was there for a while and not a recently formed one.  Since the spleen helps the body fight infections she will also need meds for this for many years.  She will also need extra vaccinations.  They also found some spots of dead tissue on her pancreas.  Her pancreas numbers have always been good though, so they expect it will fully recover. 

Thursday they decided to check the fluid in her tummy by removing some with a needle and testing it.  The fluid looked much darker than it should have, so there was some talk of the possibility of a bile leak.  Testing on the fluid so far has not indicated that there is a bile leak.  We are so happy about that!  It also doesn’t indicate that there is any bacteria in it. 

Friday Daphne underwent more testing!  She had a biopsy in the morning.  We are still waiting for those results.  The reason she was given the biopsy was because some of her liver numbers are up.  Rejection was mentioned, Dr. Yap said they would increase her anti-rejection drugs if this was the case.  She also had another procedure – I don’t remember its actual name – but basically she got a contrast dye enema followed by an x-ray to check for any leaks in her bowel.  One of the surgeons was worried that her bowel may be perforated where the two ends had been connected.  Her transplant surgeon didn’t think this was the case, but thought we should do the test just to be sure.  The x-ray did not show a leak!  There was some concern that the bowel looked a bit twisted, but the transplant surgeon said it was fine. 

So basically our week has been full of testing, interspersed with bad news, but overall things are still ok.  And a wonderful thing happened on Friday!  When Brad and I were talking to Daphne during one of her awake periods she was reaching up for our faces with her little hand.  She did that with me for quite a few minutes.  It was the sweetest thing!  I really needed that.  I was really starting to miss my baby. 

I should also mention the Donate for Daphne blood drive we had on Monday.  We had a great turn out.  It was wonderful to see everyone come out in support for Daphne.  In total we had 22 people donate blood just that day!  And there are many others who have booked different days. 

I’ll end this post with a picture of our happy little Rowan at her dance class.

Infection

This week we have been watching Daphne’s white blood count closely.  Cultures were taken from all her lines and she was given more antibiotics, but the WBC continued to rise.  On Tuesday the WBC was as high as 74.  They decided to take her into surgery for a “wash-out”.  They also planned on doing a liver biopsy and removing a blood clot she had on the outside of her liver. 

All week I felt like I had been pestering the doctors about when they were planning on closing Daphne’s incision.  The response I kept getting was that they were not even thinking about it.  Everyone was very concerned over Daphne’s tendency to clot.  Putting to much pressure on the liver would make clotting more likely.  I think they called it “compartment syndrome”.  They did not think her swelling had gone down enough to close her up safely. 

We had a pleasant surprise when she came back from surgery.  They had closed her incision!  After removing the blood clot, everything just fit into place better and they decided she was ready to be closed.  This will greatly reduce the risk of infections. 

Her WBC has continued to go down since the surgery.  It’s still higher than we’d like, but its heading in the right direction.  Another big step this week was taking Daphne off of dialysis.  Her kidneys are working! 

Our next step we are anticipating is starting feeds!  It’s hard to imagine that she hasn’t eaten in almost 3 weeks.  They will be NG tube feeds, probably 1 or 2 mL/hour of expressed breast milk.  Hopefully her system will be ready for this. 

We have also been hoping to wean her off the ventilator by Monday, but now I’m not so sure that will happen.  On an x-ray part of her right lung looks collapsed.  She also has a bit of a fever, so they have mentioned pneumonia.  Today they had to increase her breathing support.  That is a bit of a bummer, but overall she has been making progress.  Getting off the ventilator is just a bit delayed, but it will happen soon too I’m sure. 

As for Rowan she is feeling much better.  Here she is getting ready for playschool.

She has even come to visit Daphne again.

We took Rowan to the Leg grounds to see the Christmas lights one evening.

She also had a great time decorating the tree this week.