Chloe's First Week Outside the NICU

Oct. 17th, 2009 I thought that I would try to get a short update out tonight before I head to bed. There have been so many situations taking place in this family's life the past few weeks, each one carrying its own level of stress. It has been difficult to keep my mind on writing and even more difficult to find the energy at the end of the day to compose a note when the days all run together and time has not been on my side. So, I'll give it a shot and most likely follow-up soon. First, before I say another thing, let me say that Chloe is doing quite well. She has had a few difficult breathing situations this week, but other than that she continues to grow and is developing quite well. The highlight for the week is probably her ability to determine by some sense, (not sure which one exactly), if she knows and trusts someone who walks into the room... right off the bat. If Chloe thinks for a second that she cannot trust someone, she IMMEDIATELY closes her eyes and plays possum!!! Literally, she will pretend to be asleep, slowly peeking out of an eye or two and making a determination whether she will engage or not! Isn't that just too clever? She is pretty consistently turning from side to side and engages in so much more play! My claim to fame is teaching her the high five, which she has been doing with me for a few weeks, but has now made the leap to playing with others. Jennie said yesterday she actually high fived a doctor who came into the room at some point. She is getting a lot of positive reinforcement on this one, which of course leads to her doing it more. What a smart and funny girl! So, this transitional phase for Chloe has not gone particularly smoothly, and that really is putting it mildly. There has been a tremendous amount of frustration with the hospital, the different level of care and the home health network. I won't go into a lot of details, but when Chloe was moved, the home health company in Ft. Collins gave Jen and Lance the impression that as soon as they had the go ahead, they would be ready for them. You all know how hard Chloe's parents have worked all along to learn as much as possible about her condition and treatment and that there are certain experiences that need to be checked off before they can go home with her because she is on life support. These include a complete understanding of the workings of the home ventilator and what to do in any conceivable emergency. It was felt pretty early on that they would be able to pass these tests pretty quickly and that the mid November date was really stretching out the release date. By the second day on the new floor, Jennie was hearing that it was quite possible that they would be there two weeks and be shown the door. At that point they were told by the home health agency that they were not ready and that it could take up to a month in order for them to have the personnel necessary to care for Chloe at home. Talk about disappointing. Let's take a step back and recall what the move to the transitional floor was expected to look like. 1. Chloe moves, Jen and Lance are expected to be there many, many more hours, as nursing time will be lessened in order to give them the hands on time they need that will simulate the home scenario 2. Jen and Lance are each expected to do a 24 hour shift independent of each other 3. Jen and Lance arrange for a two week time frame when friends and family will spend the majority of the time with Chloe's siblings, as they are now not allowed on the floor or in the room with Chloe because of flu season 4. Chloe's time with her parents will be spent learning the portable ventilator, testing out her car seat, taking strolls inside and outside the hospital and even having a car ride to ensure the safe transition to home So, where do we actually stand in the scheme of things? Not too far at all! Jen and Lance had some training on the portable vent, Chloe passed her car seat test and did get one stroller ride down for an MRI, which was not expected and upsetting to her parents. They used up about a week of their 'planned' daycare, spending days and nights with Chloe out of concern for her medical safety. Coming from the NICU, where the highly skilled nurses are two babies to a nurse, to the level of nursing care the first few days on the transitional floor has been concerning and literally quite scary. Imagine being a parent during a serious breathing episode being turned to and asked by a nurse," What should I do?" Imagine being CHLOE'S parents, after the past six months of unexpected illnesses, having a resident doctor walk in your room with a mask on, no gloves, not stopping to wash her hands before taking her stethoscope out and listening to your baby breathe...then being asked by the baby's mother if is she is SICK and getting the sarcastic response," Hence the MASK!" Just IMAGINE, if you are my daughter, how YOU would feel. Angry? Horrified? Astounded? Shocked? These words really coming from a Dr. after being told earlier that there were nine cases of confirmed H1N1 on the same floor? Well, my initial thought was what happens when a person gets in the middle of a mother bear and her cub. I'm sure that many of you mothers out there are feeling an iota of the feeling right now! I have it not only for my special needs granddaughter, but also my daughter, in this case!! Nothing even CLOSE to that ever happened in the NICU. They were, each and every one of the people who walked into Chloe's room so very, very cautious and careful about germs and this level of concern should be no different any other place in this hospital. Period! So, after having had many of their highly anticipated expectations shot to hell in a few days time, that was pretty much the last straw for Jennie, with Lance not far behind. Jennie demanded the 'sick' doc leave the room, angry words rang out and chaos ensued. It wasn't pretty, but in my estimation, with the severity and complicated nature of this baby's life so far...not unexpected. My daughter and her husband are human beings, with human feelings and human breaking points. They were pushed to the breaking point his week and some floodgates of frustration and fear were opened. After expressing concerns all week long and feeling that they were not being heard, or even listened to in the first place...having home health care extend their stay after being assured that they would be ready for Chloe...not having the experience look anything as it was told to them...well, it just didn't make for a very successful week of transitioning. I can report, that by the end of the day Friday, compromises and negotiations were made that benefited Chloe and her family. The nursing has been stepped up, the concerns addressed and hopefully Chloe and her family will all feel some peace at the end of each and every day that they remain there before going home. All anyone wants is for Chloe to be safe, for her parents to be in one piece when they leave there to carry on many a year of care for Chloe, that her siblings feel loved and cared for throughout the entire experience and that every day holds smiles and hugs and love, love, love. So, keep the prayers coming fervently, as you just never know where or when they might be needed. Yes, we all gave sighs of relief and celebrated Chloe leaving the NICU. Hopefully, her time spent outside of it before going home will be shorter rather than longer. Seems like a mighty wild ride about now! Don't forget to keep inviting friends! We need each and every one of you and the group is fast approaching 3,300!

Love and laughter,Nancy