Hospital, Homesickness, Then Home

11/05/2011:  11:00 AM

passed out in SBLHC ER

I think I last blogged on Wednesday. Time for a little catch up.  Davis slept the entire day on Wednesday, which was a blessing because he has severe homesickness during hospital stays. Throughout the day, doctors and nurses wandered in and out checking on him. I was told that Davis had tested positive for something called C Diff or C Difficile.  Despite never hearing of it, I learned that it is quite common. It is seen primarily in hospitals where people are immuno-compromised (like Davis) and in nursing homes. Babies get it quite often too. The large amounts of IV antibiotics that Davis had received over the course of the four days had killed off the good bacteria in the intestines allowing the bad bacteria to multiply. The effects are stomach cramping and loose stools (He would be mortified if he knew I just blogged about stools.). Ironically, a different antibiotic taken three times over ten days clears it up.

Wednesday night was a rough one. Davis was very homesick and refused to take his medication. Finally, he was given some take-the-edge-off meds that also sedate him. The nurse and I struggled to get his meds in him.We were trying to get them in him in under an hour in anticipation that he would fall asleep.  Not so fortunate. The little guy cried for over two hours. Out of all the people and things to miss, he missed his cat, Jerry. Oddly, I had a picture of the cat on my cell phone. He would stare at the picture and cry and hold the phone to his cheek as though he was cuddling the cat.  He was so sad and pathetic. At around midnight, I streamed a documentary onto my computer on Egyptian pyramids and pharaohs (Davis and I are both fans of Egyptology.), and we watched three episodes before he finally fell asleep.   



gobs of sleeping at SLCH



The next morning, Davis's doctor, Dr. Schapiro, concluded that the fever was caused by a viral infection. On Wednesday evening, Davis developed a rash all over his body. This was another tell-tale sign of a viral infection. He continued to receive a broad-spectrum antibiotic and fluids until he was discharged on Thursday afternoon. 

Before we were allowed to leave the hospital, we had to meet with a nutritionist. The doctor expressed a concern in Davis' weight loss, because there has not been any marked improvements in a while. She also feels that Davis' malnourishment is and will continue to lead to poorer health overall. His weight loss is affecting his ability to fight off infection like it should.  The nutritionist offered us some information that we  already knew. Davis is on a high calorie-high protein diet.  Basically, he can eat anything he wants, and really fatty foods are encouraged. The problem that we have is that Davis is a very picky eater; he has always been. All of the foods he is being encouraged to eat, he won't touch: peanut butter, avocados, yogurt, sour cream, ice cream, pediasure, milk shakes, protein drinks, etc. He is drawn to grilled chicken, salad, and water. (I wish that is what I was drawn to.) One beneficial effort that the nutritionist provided us was helping Davis to establish a goal. Davis is very goal-oriented and competitive, so giving him a goal gives him something to work towards instead of the generic demand of "you need to gain weight". For his height and frame, Davis should weigh between 65-75 pounds. This is a conservative estimate. He weighs 55 pounds now. We have set the goal to weigh 65 pounds by Christmas. The nutritionist thought that 65 would be great and 75 would be better.  So we are working towards the goal. Davis has been doing well that last couple of days. I think in order for him to continue with this long term (eating foods he doesn't necessarily like even when he is not hungry), he is going to have to see some results. I am praying for an improved weight on November 10th when we go back to clinic for chemotherapy.

Happy Thursday! Heading home!

Davis's ANC (immune system) remained very high despite the viral infection and bacterial infection.  He was cleared to resume normal activities as long as he felt up to it. He attended school on Friday. He was very drained and had to take a couple of naps, but still managed to stay the day.

Today is Annakate's birthday. It is hard to believe that my baby is eight. She is going to have a little party with her friends at a roller rink, and the doctors cleared Davis to go. He will have to wear his mask and his chest guard and wash his hands a million times, but it is a small price to pay to be able to get out and have some fun. We are looking forward to an afternoon of celebration and an evening full of rest. Poor Davis. We plan on spending tonight catching up on some homework. I know he thinks it is unfair that he has to do homework on a Saturday night, but we have to get the work done while he is well. If he is averaging one to two days at school a week, well, that is quite a bit of make-up work. 

We are praying for some uneventful days. The plan is for him to attend school Monday-Wednesday. Thursday and Friday, he will be in St. Louis for a two-day chemo run.

Thank you all for the prayers and thoughts you send our way.  We feel the support just as we did when we were diagnosed. You are relentless in your efforts to uplift our needs. We truly love and appreciate it. May God bless you and your family on this beautiful fall weekend. 

We will keep you posted.