First week at home!

We have had a great week at home.  Daphne got to go home on pass for the long weekend and it was great.  Rowan impressed us so much.  She was so loving and happy that Daphne was home.  She kept saying “Baby is sooo cute!”  I agree. 

We had planned to go back to the hospital Tuesday morning at 8am for her morning bloodwork.  Unfortunately at 4am while I was changing her diaper she pulled off her broviac dressing.  I haven’t had the teaching on that yet and didn’t have the supplies anyway so we patched it up just enough to go to the ward to get the dressing changed properly.  Everything went fine while we were there and Daphne was discharged!

Since we have been home we have been pretty busy trying to get into a routine.  It is very important to give her meds on time.  At 8am there are 11 meds, one being an injection.  We give her 2 more meds at noon, another at 4pm.  At 8pm there are another 5 meds, again one being an injection.  It’s the 8am and 8pm ones that are very time dependent.  We are also getting homecare to come in twice a week, Monday and Thursday, to do Daphne’s bloodwork.  They have to come at 8am to take the blood before she gets her anti-rejection drugs.  They also maintain Daphne’s broviac line. 

We have also had to drop by the hospital twice since discharge.  On Thursday we went in because Daphne has had a bit of a runny nose so we got swabs taken.  Today we went in because her potassium numbers were too high and so we got some more bloodwork done.  Turns out her potassium is just fine and the high result was just an outlier. 

It has been a really great week though.  Having the family all together has been absolutely wonderful. 

Almost Home

She is almost home!  This week she has done really well.  She is off of CPAP at night now!  This week her tube feeding was switched from NJ (past the stomach) to NG (into the stomach).  Brad and I have also had some teaching sessions on meds and life post-transplant.  Sometimes the thought of life post-transplant sounds daunting, but really things aren’t that different for her.  We just have to be very cautious of things that cause infection.  Hygiene and food safety things that are really common sense are much more important now when it comes to Daphne’s immunity.  As for her meds, there are still a lot of them (15!), but they should decrease over time. 

The biggest news of this week is that Daphne gets to go home on pass tomorrow, probably early in the afternoon!  We are really happy to have our family all together again, although there will be a lot of adjusting for all of us.  I am just so happy that Daphne gets to come home before Brad goes back to work.  We are hoping she gets discharged when we return from pass! 

Out of the PICU

I am so happy to let everyone know that we are out of the PICU!  Sunday morning Daphne’s chest x-ray looked great.  It showed no plural effusion (fluid in the chest).  We knew our time in the PICU was coming to an end, but we were surprised and pleased to hear Monday that they had a room for us upstairs! 

Monday afternoon Daphne was transferred to an isolation ICE room.  ICE stands for intensive care environment.  They decided to put Daphne on reverse isolation when she got to the ward to protect her from any bugs other patients might have.  The isolation ICE room is just off of a nurses’ station so it is quite noisy and not really private. 

After spending two nights there Daphne got her very own room!   What a change from the PICU environment only last week!  We have our own bathroom and lots of space for a play-mat, exer-saucer and toys.  And to really make the place liveable, we brought the Nespresso machine in to feed our caffeine habit. 

As for Daphne’s progress this week, she is now off of high flow during the day!  It is great to have her connected to less stuff!  At night her C-PAP rate is slowly being weaned down too.  Now that we are on the ward I am starting to give her meds as well.  We are also trying to get Daphne to eat.  We have tried rice cereal, applesauce, banana puree and fat free yogurt.  I can’t say she has actually consumed anything, but she seems to be getting used to the routine of meal times. 

 Our day to day routine is also different.  Now we are spending the nights at the hospital.  I think I will spend most nights with Daphne.  Although Wednesday night Grandma came and had a sleep over with Daphne so Brad and I could have a night with Rowan.  Tomorrow night Brad plans to spend the night with Daphne to give me another night with Rowan at home. 

Rowan has also been sick this week, so the girls have not been able to visit this week.  Rowan couldn’t even go to dance class or playschool this week either. 

This week we have been so happy to have Daphne in her own room.  Getting out of the PICU is such a milestone.  Daphne spent 12 weeks in there!  During that time we have met some amazing people.  The nurses, doctors and respiratory therapists started to feel like an extension of our family.  The care they showed for Daphne was genuine and has meant the world to us.  We will never forget our time spent there and never forget how thankful we are to the staff there. 

Chest tube out...again

This week was another week of ups and downs.  It started off really good.  Daphne’s chest x-rays continued to improve.  On Monday an ultrasound showed a small pocket of fluid around the chest tube.  Since the tube was no longer draining, they decided to TPA the line.  I really wish I would have said something.  I remember thinking; if it’s only a small pocket couldn’t we just leave it alone.  But I didn’t question, so they TPAd the line.

Her x-ray after this showed a very wet chest.  It seems that the TPA broke up more pockets of fluid than they expected releasing a lot more fluid into her chest.  The chest tube drained a bit initially but soon stopped draining again.  Daphne still seemed ok despite all of this, but she did spike a fever for a bit.  Cultures were taken, but so far everything has come back negative.  It seems the fever may have just been her body having an inflammatory response to all the fluid in her chest. 

Wednesday evening Daphne’s chest tube just came out all by itself!  They are just watching her breathing closely now.  Despite her chest x-rays not looking great she continues to do well weaning off the C-PAP.  In fact, tomorrow they plan on having her on high-flow room air during the day and only doing C-PAP at night. 

Other good things are that they can now wean her off her pain medication more quickly now that the chest tube is out.  Also, right now she is not on any IV medications!  She has a broviac, but it is only being used to draw her blood work from.  We are still trying to feed her rice cereal.  She is not a fan yet, but she doesn’t seem as annoyed by it anymore.  We also took her out for a short walk.  And something new, we tried tummy time with her a couple of times.  She has barely been on her tummy pre-transplant because her tummy was so big.  She was very annoyed at tummy time, but we will continue to work on it. 

I’ll end with some pictures from this week.