July 1, 2003
I apologize for not having updated the site since early June. As you can imagine, time is at a premium in the Salter household…
If you haven’t heard, Meghan returned home in early June! For pictures of Meghan’s homecoming, click on “Photo Gallery First Homecoming.” A great big thank you to my sister Carol and our neighbors for the balloons, signs and goodies that greeted us when we arrived home with Meghan.
Overall, Meghan has done very well with her home environment. Lauren, Michael and Shannon (as well as Mom and Dad) are so excited to have her home. She has quickly adjusted to her new surroundings after three months living at Mott Children’s Hospital. We have her crib and all of her medical hardware set up in the living room, which gives the nurses and visitors plenty of room to move. Plus, she has room to do physical therapy with Aunt Liz, get baths, and sit in her swing—all within a few feet of her vent.
We, too, had to make major adjustments. To assist us with Meghan’s rigorous healthcare schedule and monitoring, home health care nurses now come into our home for 16 hours per day (11:00 p.m. – 3:00 p.m.). For the most part, the nurses have been wonderful. Each nurse that comes into our home goes through an orientation. They learn about Meghan’s medical history, her needs, where supplies are, etc. Ellen and I then learn about the nurses’ background, experience level on vents, etc. This tedious process is a necessity in the beginning of home health care. Hopefully, we can maintain somewhat of a consistent roster of nurses so that “orientation” periods will soon subside.
We still are in need of additional nursing coverage as not every shift is filled. For the most part, the shifts that are not covered are on weekends—both weekend days and nights. When nurses are not here, Ellen and I have to take shifts watching Meghan 24 hours a day. This is very stressful as we have 3 other children to care for. We are still trying to recruit pediatric nurses that are interested in picking up a few shifts per month with Meghan to fill the open shifts. So, if you know any pediatric nurses, please ask if they would like to go onto the Meghan rotation!
Bringing Meghan home, we were somewhat nervous about what to expect. After all, Meghan had been in the hospital for nearly three months and her last two hospital discharges were followed closely by “911” calls and life flights back to the hospital. We prayed that this discharge would be different. The hospital personnel assured us that she would thrive in the home setting. As they promised, Meghan has done very well in many ways since arriving home. She has reached some new milestones and we would like to share those with you.
First, Meghan enjoyed her very first outdoor walk around the neighborhood! What a glorious time of year for Meghan to start her new beginning! She enjoyed the sun on her face and wind in her hair for the first time. She saw trees, flowers, grass, and the sky for the first time. The stroll lasted approximately 2 hours, as the neighbors all wanted to sneak a peak at Meghan. Since that first stroll, Ellen takes her out for daily walks if the weather is nice.
Second, she began to talk around the trach. Before her tracheotomy, Meghan cooed continuously. Unfortunately, she lost the ability to coo after the tracheotomy. Since she returned home, we have heard occasional audible noises—some laughs, some cries, some coos—that passed through her vocal cords! It was so nice to hear her talk around the trach and hear her little voice again, which is one of her traits miss most.
Third, Meghan has started receiving bolus feedings. Since she lost her ability to take a bottle back in March, she has been on continuous feedings of about one once of formula per hour. Because she continues to throw up quite a bit each day, Ellen and I wanted to try something different. We decided to try to give her somewhat of a normal feeding, so we gave her 3.5 ounces of formula in a half hour time frame. She tolerated it well and looked quite content. We have done that for two continuous weeks now. She continues to vomit several times per day, but no more than she did before. Since the bolus feedings started, she looks more content, she is not always tied to the feeding tube, and she is more alert. The best part is that she has gained 1.25 pounds since leaving the hospital 4 weeks ago—which is the most weight gain in months. Please pray that she continues to gain weight. As I stated in previous updates, weight gain is crucial in her return to health.
The most impressive bit of news I saved for last. Two weeks ago, we went on our evening walk. Meghan was comfortable, fed and things were quite quiet for a change. As we were switching her from the portable vent (that is on her stroller) to the stationary vent (in the living room), we noticed that Meghan was breathing on her own with relative ease—without use of the vent. She did this for several minutes without difficulty. We were quite thrilled because she had really not breathed on her own since before her tracheotomy was performed—at which time she was placed on the ventilator. In the hospital, Meghan’s lungs would start collapsing after just a few minutes off of the ventilator. This time Meghan was able to keep her lungs open with some deep breaths, while keeping her blood oxygen levels up around 100%! We did not want to push our luck or put Meghan at risk, so we put her back on the vent after several minutes—at which time she gave Ellen a bad look, as if to say, “Give me a few more minutes of freedom, Mom!” We were absolutely thrilled with this obvious improvement. God continues to give us encouraging signs of hope when we start wondering where Meghan’s path is heading.
Meghan’s legs and arms remain very weak. She will need months—maybe years—of physical therapy. My sister, Liz and “Early On” will assist with weekly PT visits. In addition, we are looking into additional PT and OT assistance. We are quickly learning that Meghan’s best PT will come from her 3 siblings—Lauren, Michael and Shannon. They play, talk, care for, pray with, sing to and help with Meghan daily. Meghan responds so well to them and they all make us very proud.
Ellen and I thank each one of you for your prayers of healing for Meghan. Although she is on the right path, she has miles to go before reaching her destination of full health. So, please take a moment to say a prayer of thanksgiving for her continued healing and that she is soon restored to full health. God bless you all.
Mike and Ellen