It's now been 14 days since Riley arrived CHOC and 15 days since this nightmare started. I feel like we've moved in to room 621 in the PICU, it's like a mini studio apartment. We know the nurses. We chat with them in the hallways. We've learned the attending rotation and we now recognize the doctors who come to talk to us each day. We've switched from the critical/acute care mode to the long term recovery mode.
What do our days look like? For the last two weeks we've been switching off nights at the hospital. This allows the boys to spend time with mommy or daddy every other day and also allows us a much needed break from the hospital. It is hard to be away though! I feel like we're on the 28 hour resident schedule although ours is more like 30+ hours.
This morning I got up around 7, my mom was up with Mason at around 545. Logan woke up not too long after I did and I was able to see my boys for a little while before Logan headed off to school and I hit the road to the hospital. We live 20 miles from CHOC but, traffic can add 30+ minutes to the 25 minute drive so it's all about timing when we leave. We both try to get down to the hospital between 9/10 if we've been home the night before. We like to both be around for morning rounds and usually we're both in attendance.
We spend the days in Riley's room, we take breaks when we need to and usually have a relative with her when we do. If it's a quieter day and we don't have a relative available we just make sure it's a nurse we "know" who will keep an extra eye on Riley while we grab a cup of coffee from the cafeteria or walk the hallways a bit.
Now we usually have PT/OT in the morning and in the afternoon. We are active participants and it is nice to be so involved in her care. On days when one of our parents can be here around lunch we usually walk across the street and have lunch together. It is the one time we have Dave/Megan time and can actually have an open conversation without others being around. It's nice.
Whoever is going home that night usually leaves between 430 and 530. It can take 45-60 mins to get home, again depending on traffic, so we make sure to time it to be home before Mason goes to bed. Once either of us leaves we've been here for 30+ hours. The odd thing is it never seems that long.
Grandma Marie has gone home so my mom has now taken over the majority of the care at home. My dad helps her as well and got Mason to take a nap in his crib for the first time EVER today. I wish I had known he had this sleep training talent months ago! Our fabulous part time nanny Hannah comes M/W/F as well. Dave's dad Rudy and step mom Beverly will become part of our night time rotation next week and Uncle Scott and Aunt Becky will be spending the weekend with the boys at our house to give the grandparents a break. We are extremely lucky to have such a wonderful supportive family. Each person has contributed their own little something to this scheduling puzzle and we feel blessed!
It's tough to have our little family apart. We were just reaching the point where as a family, outings were more manageable and we'd even braved some meals out together in a real sit down restaurant! We look forward to the day we are all under the same roof again. I think we tend to forget how important it is to all be together as it is often lost in the hectic lives we all lead with young families. Mason and Riley got PB chairs like Logan's for Christmas and I can't wait to see my 3 babies sit in them and watch a movie together one day in the future....
Now for Miss Ri Ri. She's had a quiet restful day but, also had some PT this morning and was put in the upright chair for 30 mins and then hung out in my arms for another 30 or so minutes.
We've been rolling her from side to side in order to help clear her lungs out of the gunk that the RSV brings with it. She's been resting so comfortably today that we really haven't bugged her or over stimulated her.
Antibiotics ended today. Her infection is gone. As soon as she's over the RSV she's fully on the road to rehabilitation. The respiratory therapist said tonight they will start weaning her off the high flow oxygen tomorrow. She should be off of it in the next couple of days!
I spoke with the sweet social worker again today. We're all about front loading Riley with the best possible therapies and assistance she can get and she is very helpful with getting that all set for us once we leave the hospital environment. She'll be making special requests, like in home therapy vs. at a facility, due to the RSV and Riley having a twin. Dissapointing thing was when she told me that it could take 60 days from discharge to the start of outside therapies. Thanks State of CA! So, I have started researching private in home PT/OT in order to bridge the gap. I just don't feel comfortable being responsible for that type of rehab for 60 plus days and would much rather have a plan ready to go for when we do get to finally go home.
Hematology spoke to us today about Riley's immune system. They ran a few tests on her antibodies reactions to her immunizations and believe that she does in fact has some sort of immune system issue. Because there is no real way to tell if her results were due to how sick she was, they'll have her on a monthly hemoglobin injection? for the near future. Good news is this is something manageable long term and she could outgrow it. Even better is Dr. Nugent, who we adore, runs the outpatient immunotherapy clinic. Riley couldn't be in better hands.
We will have a referral for Mason to be tested for this rare disorder as well tomorrow. Likelihood that he shares this disorder with Riley is extremely low! They are fraternal twins and had seperate placentas so I am hoping and praying his blood work does not show the same results.
Dr. Hu, Mason and Riley's pediatrician has called our house and the hospital at least once a day. It is nice to know we have someone who cares about our children and wants to work with the doctors here to make sure he is ready for the care Riley will need once we leave CHOC.
Two weeks down and many more to go. With your love and prayers we'll get there. Riley will get there.
Dave, Megan, Logan, Mason and Courageous Riley