Where We Have Been. (this is long.....)

Last blog entry was Drew's 10th birthday. We were anxiously awaiting our trip that next Tuesday to Hershey, Pennsylvania to meet up with our friends. On Monday (the day before we were to leave) Andrew was coughing. Not much more than that. So, off we went in "Big Red" (our new very old conversion van). Drew coughed the entire way there, but we kept on going with the hopes that Drew would be alright and we could all enjoy some family time with our friends doing our favorite things. On the way to Hershey, we saw a sign for a zoo (Lake Tobias) with a safari. We were early (not having to meet our friends until evening) so, we decided we would do this safari. Well, it was hot and sunny and Drew was still coughing, but yet we toured the zoo breaking in any shady spot possible and boarded our own private handicapped roofless school bus - "Wild Thing" to drive out in a super bumpy, hot field - all of us fighting for the tiny bit of school bus seat that was in the shade (Drew was covered in the shade) so that the girls could learn about the animals and feed bison, elk, deer and cattle crackers out of their hands. As I mentioned we were the only ones on this bus, so our guide Erin gave us the talk about what we were seeing (a male emu sitting covering it's eggs for example) only to instantaneously hear Ava and Amelia see what Erin had been talking about for the last five minutes to ask "What's That????". After several hours here, we went back to "Big Red".

We cooled off on our short ride to Harrisburg, found our hotel and hopped in the indoor pool. Of course the girls made instant friends with the high energy kids in the pool. We then decided to have dinner at Fridays. - probably the highlight of our trip (yes that is lame - I know). I've never seen my kids so behaved and so hungry - even Drew. We then went back to the hotel to meet up with our friends. Our kids were ready for bed, so a brief visit with our friends and off to bed. Drew coughed and "talked" the entire night. The sisters slept great - the boys did not. In the morning we debated going home right then, but no........ - decided to take a walk to Starbucks where we found Chuck E. Cheese at 9am. Chuck E. Cheese at 9am all by ourselves was another trip highlight (yes lame again). The girls could have stayed there all day, not even wondering about the huge amusement park at Hershey. Meanwhile our friends were looking for us and headed over to the park without us. We met up with them after deciding we would do what we could of the park and then leave after that for home. So there we are, 4 month old baby, sick Drew, and two very eager girls to ride as many rides as they can with their friends. The girls enjoyed their rides with their friends and the companionship they got from Amanda & Kenny - always so sweet to make sure the girls are having fun. After only 3 hours there, we decided we better leave. So, my girls not wanting to interrupt their fun, but forever understanding of their brother left their fun and we all headed home without issue. So, we made it home by dinner time, fed the kids, showered and put the kids to bed in their cool comfy house. Drew's cough was turning from dry to wet and now his chest was working very hard with Drew just trying to sleep.

The plan was to take Drew to the pediatrician in the morning (Thursday -8/6). I did. Dave was home with the girls. Of course the pediatrician took one look at him, listened to his chest, checked his pulse ox (hovering at 90%) and said go to the ER right away. The ER took a chest x-ray and said that there was pneumonia forming in his left lung and that Andrew would need to be admitted. So, the usual, the torturous IV, the breathing treatments, the oxygen mask. By dinner we were up in our room where I was casually joking with the nurse "we would have this beat by tomorrow or the next day" - was I wrong.........

I would spend the first night with Drew in our private room. Drew seemed the same. Dave would come for Friday and spend that night - by Sunday we started our "hospital routine". Saturday while my mom and I were with Andrew, the hospital pediatrician would be in A LOT to check on Drew - looking more and more concerned as the day progressed. By evening, the doctor announced Andrew did not look better and he needed to be admitted to the PICU - for continuous breathing treatments and closer monitoring. Drew did not look good and the the urgency to get Drew started on his new treatment was more than obvious. I slept with Drew at his feet so that he knew I was close - he was very, very lethargic. You could not get to close to him (by his side). He had 2 IV's, a mask blowing oxygen, and medicine in his nose and mouth, wires monitoring his heart and breathing rates and his blood pressure cuff. I think Drew's endless coughing finally caught up with him. So, Sunday morning, Grandma came to watch the girls (as she would every morning and sometimes the entire day) while Dave and I switched our "posts". I would go home to see the kids, rest, shower and try to set things up for Dave for the night, then head back to the hospital for the night with Drew. It was Tuesday afternoon when Dave called and said Drew wasn't responding yet, and the doctor suggested he be put on a BiPap machine. This machine would force air into Andrew's lungs via a mask over his face. Andrew was agitated by this at first, so he had to be sedated. This was also the day I had planned to have the girls come see their brother when Dave and I switched posts. Well, once they were in the room with him, I realized that might not have been the best decision. Dave had Jenna in the waiting room and the girls were by Andrew's bed side singing to him "You are my sunshine". Now, I hadn't seen Andrew with this mask yet, nor did I want him sedated, so I was even more traumatized. Crying, I brought the girls to meet their dad, where Amelia looked at me and said "Mom, Andrew WILL BE ALRIGHT." By Thursday morning with several different medications, that mask, the treatments Andrew looked a little better. I was anticipating a day of weaning meds, oxygen, maybe even a shower for Drew - it had been a whole week now, but no the doctor would come in around 8:30 am to ask me where I would like Andrew transferred to, there was no PICU doctor available to offer Andrew the care he needed due to a family emergency. Well with a lot more tears and now anger, we decided Children's Hospital in DC. Andrew would need to be transferred by ambulance (staff thought Andrew wouldn't need the helicopter transport). This move would mean that I would stay with Andrew in DC until he came home with Dave visiting. I would not get the few hours with my girls that I had been given the week prior. The ambulance ride to DC was uneventful. My mom followed in her car, we were admitted to their PICU where Andrew looked better (even had quite the worried/perplexed look on his face). I think he thought we were headed home. Upon arrival for some reason Andrew's oxygen levels were better - not requiring oxygen by mask. He seemed to change right there from an intensive care status to a regular pediatric care status. There was even thought of taking him out of the PICU and moving him up right away to the respiratory floor. They did keep Andrew there for the night where he needed a small amount of oxygen, but was comfortable and still doing better. The next day (last Friday) we were asking to take Andrew home. He looked great. The doctors talked us into one more night on the respiratory floor. We spent one night in this private room and were released after a very, very long frustrating afternoon on Saturday trying to get that discharge. Andrew was happy to come home, but is still defensive, his cough is gone for the most part, he's eating and drinking like he always has. His oral medicines are complete, and his inhaled medicines will now be a part of his daily care for now. Monday morning, I woke up with the nagging cough, the aches, fever, chills. Now, 10 days later I am feeling a little of how Andrew felt that day we toured Hershey, PA. I am so, so sorry. I believe it may be time now in Andrew's life to "re-think" his care, the assumption that Andrew could handle an entire day in the middle of the summer heat outside at an amusement park was wrong from the start and we knew it even without the cough. No more pushing those "typical" family outings that we've always insisted Andrew deserved. The nurse at Shady Grove told me later that Andrew was almost placed on a ventilator and that there was a huge concern for his health.

Some things that are on my mind now and that I will have a hard time forgetting (just as the mom, not to mention my boy the patient):
-My boy was so sick and has been through so much
-How lightly I took Andrew's admission to the hospital
-How hard it is to 100% trust the doctors and nurses as to how worried they really are and what they are telling you and not telling you.
-How hard it was to know perfectly well my girls were cared for, but hearing Jenna cry over the phone and me not being able to do one thing for her, or my older girls telling me they missed me and that they missed Andrew and when would he be home?
-The four hours it took for me to realize that Andrew was in pain, not just restless because his IV had popped out and no one recognized that.
-The nurse who arrived at 2:30 am to while I was sleeping give Andrew his 3rd IV (at one time) just because it was easier for her to administer the medication this way. I put a stop to that.
-Slathering enough hand sanitizer on may hands to cover my body fifty times over - only to get sick now and hope that my girls and Dave don't catch this too.
-That suctioning knowing it was necessary and how uncomfortable Andrew was
-I don't want Andrew to relapse.
-When the doctor broke it to us that they couldn't care for Andrew anymore because the doctor's father had passed away. Our whole routine was shaken.
-The ambulance ride to Children's - I had to sit in the front.
-The anticipation of a roommate at the Children's PICU and at 3am hearing way to much information about a nine year old girl brought in by her sister having serious problems with her blood sugar.
-Crying babies and children without any family by their side
-The nurse at Children's first meeting us and her very first question after seeing Andrew, "Mom, did you have a long delivery when he was born?" "Yeah, I can tell, he's very handsome."
-The fact that I can't sing Andrew his favorite song (Sweet Baby James) which makes him smile in an instant because he's now associating that song with discomfort.

Things I will always remember....
-Both Grandma's being 100% available to care for the three girls without complaint and offer Andrew, Dave, and I comfort and support.
-Family calling and e-mailing -offering to cut our grass, visit, take the girls on vacation - whatever we needed.
-Friends e-mailing and calling daily.
-My friend Beth texting my very, very uneasy self while riding to Children's hospital in the ambulance; (and that big ol' balloon bouquet she sent to cheer Drew up)
-The beautiful "Project Linus" blanket given to Drew on admission to Shady Grove. Sick kids in hospitals need any comfort they can get.
-Darlene - who I don't speak to as often as I wish making our family dinner and bringing it here on Monday night.
-And my husband for getting me whatever I needed, taking off so far the whole month of August (even as I am sick) and taking over home life completely, and that task of Jenna's sleepless nights.