Chloe's First Week Home

November 22nd, 2009 Chloe has been home for seven days today! It still feels a bit unusual to spell out those words, but it truly is a reality! The week hasn't been perfect, and not without a few bumps, but on the whole it has actually been pretty remarkable! Chloe's first day home seemed to be a bit overwhelming for her as you can well imagine. After seven months of a sterile, white room and pretty much the same routine...just imagine what a shock it would be to the system to experience all the comforts of home. Just the ride home in the van, which is over an hour had to have its interesting moments for her, although she slept about 20 minutes of it and was relaxed enough to have not even one alarm sound on the entire drive. I wrote a bit last time about the day, the night held a bit more stress. Chloe had a bit of a fever, I think because her system was just a bit overwhelmed and there were so many changes in her day. Remember how Chloe is supposed to have round the clock nursing because of the ventilator and that the company providing the nurses was really the hold up on getting Chloe home the past few weeks? Well, Jennie is quite intuitive and had a bit of a feeling about the nurse the first night. She and Lance did go to bed, but left the nurse instructions to wake them if ANYTHING happened, although Jen knew they would be quite sensitive to hearing the alarms anyway! Miss Chloe does seem to enjoy testing new nurses, and with her day a bit of an uproar she didn't vary from her normal course of behavior! If she is not suctioned VERY regularly, her airway gets gunky and her oxygen level drops, which is exactly what happened this first night. Jen and Lance were awakened by the alarm and very quickly took over the suctioning, but Chloe's O2 level had dropped significantly and she needed to get air by being bagged for a bit. Jen says she responded well, as she usually does- this is not a new thing and they have handled it before. I have to say though that the first time I witnessed it was in the hospital with a nurse and it scared the heck out of me! Many things have become the 'new normal' though and we are all feeling competent to deal with this if necessary. Unfortunately for the nurse, I guess she must have felt pretty overwhelmed by the whole thing, as she called her supervisor quite upset when she left the next morning! She did not feel that her training was quite thorough enough and that she was not prepared to deal with Chloe! Home Health people assured her, Jennie and Lance that the training would continue! It IS quite intense if you are new to the situation and I am sure it will be dealt with! So, getting the first day and night behind them was a positive thing. The rest of the week with the different nurses went much more smoothly. Some are LPN's, some RN's, but Chloe's parents feel like they are all quite good and feel so great about all they have learned that there just isn't much anxiety. Chloe LOVES being home! Every single time I speak to Jen on the phone she tells me how happy they ALL are, how much Chloe smiles, how they are finding ways to include her in their daily life all day and each night-I can hear my daughter smiling as she speaks! The two days that I visited Chloe was very happy to see me walk in the house and our time together was extremely thrilling for both of us, she showing off her new digs, me marveling at the sight of my granddaughter in the family living room! The ventilator is portable, so is moved from room to room as needed. She is always included in the kitchen for meal times, and one night when I called, she was in her swing watching her mommy do the dishes! How normal does that sound! The image made me grin from ear to ear! Jennie just keeps saying how wonderful it is to really have her baby home... makes you realize how much just taking a baby home from the hospital is taken for granted! Lance is able to run home at lunch to see her and is just minutes away if needed. These things bring great peace of mind! Friday night brought its first challenge, the possibility of an occasional nursing shift not being covered is expected, maybe just not so soon! Yep, no nurse, so all of the responsibility fell squarely on Lance and Jennie. I went to get Sierra and Kadin to take away that possibility for distraction, but I was once again unbelievably proud of those parents as they barely batted an eye at the duties ahead for the night. Jennie did call me once about 9 p.m asking if I knew how to take a blood pressure, which I didn't. This is something they did not cover at the hospital, as she always had the cuff and if they had had the nurse, she would definately have had it covered. Chloe went without that for the night, but I don't think lacked for any other care! Jen and Lance took turns sleeping and keeping watch and Miss Chloe was a VERY good girl and pretty much just slept through the night!!! I'm sure the morning nurse was much appreciated though, as naps were needed by both of them for sure! Yesterday was another successful day, Jen's highlight for the day was reporting that when she was doing some accupressure on Chloe's toes how ticklish Chloe was was and how delightful an experience it was! Smiles, smiles all around! Tonight...they are without a nurse again! The nurse was on her way and received a phone call that her house had been broken into! Jen and Lance have taken it into stride much more readily than I would have, having the backup would be key to my state of mind, but I guess the folks at Children's Hospital did their job in preparing this set of parents! Chloe certainly was given the right parents to keep her safe and sound, plus many an angel for backup besides! So, I have a very successful week to report! My family is home, the baby is happy, the parents are even happier, my other grandbabies are very happy to be living at their own home once again! That leaves me very elated, very grateful , and feeling ESPECIALLY blessed by the goodness of God. Thank you GOD! Tomorrow Chloe will have her first OT at home and a new week begins! Week two, post hospital Chloe. Stay Tuned and keep those prayers coming! Love and blessings to all of you! Nancy