Sherman Family: September 2010

As many of you know, Olivia was discharged on August 11th from Children's Hospital. We weren't certain that that would be the day until we got to the hospital that morning. Previously we were told it would be the 9th so our hopes were up then and disappointed to find it wouldn't be til later in the week. Luckily by Wednesday they felt comfortable enough to send us on our way home with Olivia. That week was very hectic as I was trained on how to give her meds through her ng (feeding) tube, how to put the tube down, and how to set up the feed pump. Most everything else I had done throughout my stay with Olivia.

Olivia was certainly exhausted by the time we were finally able to get out of the hospital. She had to endure shots given and her central line port taken out. Needless to say, a lot of screaming in pain, but I knew it was just one more step to getting home. Let's just do this and get out of here I kept telling myself! I just knew once she was home things would be better.

A discharge that started at 9 in the morning ended up finally complete by 7 that night. By that time we had to hook her up to the feed pump for the ride home and realized that we would have to find a pharmacy still open in Omaha to get meds for the morning. This was a little frustrating but again I kept telling myself we'll just do it and get home. We finally made it home around 9 that evening and of course had trouble with the feed pump and the meds on the discharge sheet were all written in Milligrams, not Milliliter to give to her. Oh the frustration! A quick call to the hospital cleared everything up. Luckily I had my mom to help because I was having a serious breakdown! I really thought, what am I doing. I can't do this! Once things settled and we had given her all her meds, fixed the feed pump and she was sound asleep I was able to get my head straight.

Things went well the first week home. I had done my first weekend alone with Olivia and Addison and mom had come back the following week to watch Olivia while I went to work. Sadly on August 22nd Scottie and I took Olivia to Children's ER because she was having bloody stools, unlike we had seen before. After 5 hours in the ER we were finally admitted and after convincing the doctors to bring in a gastrointestinal doctor to find out the cause of the bleeding she was diagnosed with severe MSPI (milk, soy, protein intolerance) which meant another formula switch.

So we added another diagnosis, not only does she have cystic fibrosis and short bowel syndrome due to the amount of intestine removed, she now has MSPI! We were discharged again on the 25th after I convinced them I could watch her from home and was not staying another 24 hours. At the time I had Home Health visit 2 times per week and was seeing the local physician once each week so I was confident watching her from home. Thank goodness the formula did the trick and we were rid of the bloody stools the following week.

She continues to thrive at home and is doing very well. She's not quite making the weight gain they would like to see but is not loosing any weight. She currently weighs 9 lbs. 2 oz.

We just recently went to Children's for another check up and to discuss the possibility of taking her off the ng feeds which we had running at night but were having so much trouble with the equipment I was certain Olivia could take the bottles on her own in the night. They were willing to try that but up the calories in her formula to help her gain weight so she is now tube free! It is so wonderful not having to worry about that any more. She got pretty good at pulling it out so I'm glad we no longer have it. As long as she tolerates the higher calorie formula we should be able to continue on this path. If she starts having a lot of stools or blood in her stools we may have to go back to the ng feeds but so far so good and we hope that remains the case.

Home Health no longer does visits as they felt I was doing very well with her and there were no concerns. I continue to bring her into our local doctor every couple of weeks and she goes to the CF Clinic at Children's every couple of weeks or at least once a month depending. It gets a little crazy and I feel I'm in doctor's offices or the pharmacy way more than I would like but this will be our norm so I just have to get used to it.

Addison is doing so well with Miss Olivia. She is very helpful and all the things I was worried about her doing like covering her face with a blanket or putting stuff in her crib she has never done. I think because she had spent time in the hospital with Olivia she knew to be careful about things. She always asks, "Are there any cords, mamma, can I sit by her." Thank goodness we have no cords now. Addison was excited to have Miss Olivia go to daycare with her on the 7th of September and asks every day, "Is baby Livia going to daycare with me today," and every day I say yes. It feels so good to finally feel like a normal family again!!