Tuesday, June 26, 2012

She's doing well!

We've been home over a month now and all I can say is she's doing well! People are always asking "how is she?" And as I respond, "She's doing well" I know they are thinking of a healthy almost 3 year old girl with big brown eyes. Unfortunately doing well for Audrey means, she's thriving on IV nutrition given through her arm. She's still not up to even half of her j-tube feeds, her g-tube is continuously draining and she still goes through 18 syringes of medications per day. But she is doing better than she has in almost a year and for that we are thankful and able to enjoy her even more.

We have been fortunate to take some time out for the zoo and a trip to Sea World. Audrey and her brother love animals and little did we know how much Audrey would love Sea World! She asks to go back every single day! We learned somethings on our short trip. First, we cannot get a smaller car. The amount of things she requires just for two nights away, is staggering. Second, the nurses who work in the first aid station at Sea World are great! They were willing to keep her TPN and refrigerated meds for us so we had less to lag around all day. Thrid, we can do this! Yes, she was exhausted and didn't even get out of her stroller once all day. But, her new stroller lays down almost completely flat so she was able to take a 2 hour nap! It was also tricky making sure to keep her pick dry with so much water around, thank you glad press'n'seal!! That, being said it was a great time for us all, and so important to remind us we can do "normal" things with a twist.

I have gone back to my weekend, night shift job which has worked out well. I'm able to be home with Audrey and her brother all week and work during the weekend. It limits our family time some but it is definitely better for the kids right now. Audrey is thriving being at home and not exposed to other kids. She hasn't been sick since the last week of May! This is the first time she has gone a whole month without being ill since November!

With all this goodness going on, we have a big hurdle leaning over us. Audrey needs her tonsils out. Surgery is rough on her and will undoubtably set her back. Right now she is the strongest she's been in awhile so hopefully she will bounce right back. Surgery is already complicated because she needs a blood transfusion before surgery. Her blood count never recovered from her last hospital stay and has started dropping down again. This gives her a high heart rate and she has need her oxygen more in the past few days. She will also need her clotting factors checked since they were low with her last admission and tonsillectomies are notoriously bloody surgeries. So for now the plan is admission the night before for transfusion and lab check and then one night after to monitor oxygen and bleeding. We may also have to tag a g/j tube change on since we've been having some trouble with flushing. Hopefully it will just be the planed 2 day stay and not turn into something longer!

Here are some pictures of the fun we've been having:





Sunday, June 3, 2012


Pheww! We've been home for 2.5 crazy weeks now! Our life has once again changed and we are slowly adapting to a new "day" for our girl. I wish I could say the changes have been easy for us and everything has been smooth but I cannot. Our day is now centered around medications and TPN. We plan trips to the grocery store or other errands around when her g-tube is unclamped or the other parent is home. We are terrified to take her out of the house and expose her to illness. She always gets sick, but now when she has a fever we have to rule out a line infection. Our kitchen counter is sterilized everyday to make TPN. Yes, this as a nurse kills me! I am mixing TPN in my kitchen!! I hate it! I hate that my girl has to walk around with a stroller to carry all of her medical equipment. I hate that she has 3 different tubes coming out of her little body. I hate that she can't go swimming or play in the sprinklers, even a bath is major, stressful undertaking. I especially hate that once a week we have to go through the trauma of dressing change that wipes her out for the rest of the day. That being said, since starting TPN my girl is growing. She has gained weight and gotten taller for the first time since December. She hasn't need oxygen once since coming home. She is still wearing it when she sleeps but she just did her sleep study and I am hopeful we will soon be done with that. She is finally feeling better. Yesterday for the first time in 2 months, she went for a walk outside. She is getting stronger everyday. She is trying to jump again and she is almost running with her little stroller. She is still not able to go up the stairs but I know it is just a matter of time. For all these reasons I love TPN.

Our lives are getting ready to change once again. This is my last week in my current job. Starting June 15th I will once again be a nighttime-weekends only-NICU nurse. I have missed the NICU in the last 18 months. I will miss my current job also. I love working as an NP and my very special patients will always have a place in my heart. I have met amazing co-workers and have learned so much. I am looking forward to going back to NICU. I have missed my fellow nurses though they have continued to provide me with so much emotional support through our journey that I will always be thankful to them. And so we will have to once again adapt to doing things during the week with mom and dad on the weekend. No more days off together, no more weekend activities. But in doing this Audrey will be at home. We don't have to stress her body to go to daycare or be exposed to illness. We don't have to rely on other people to watch her carefully for all the subtle signs she has when things start to go wrong. This is the best decision we could make for our family right now so we will once again adapt and things will work out. Below are some pictures since we've been home...
At the hospital waiting to sign our discharge papers

Yay! After 22 days, we are leaving the hospital!!

The ride home. The excitement was too much for her little body.

After 22 days in the hospital bed, she is super weak and easily exhausted.

Thank you Dylan Gregory Hatch Fund for her giant bear!! (She had wanted this from Costco and I absolutely refused to buy it for her)

She is mobile with her doll stroller!

Yes she came home with parainfluenza 1 and rhinovirus, so it was a  week of nebulizers and and awful cough.

Her good friend Cat now has a matching GJ tube and PICC line

All hooked up for her sleep study, she's so good she didn't touch anything!