Today was a fairly uneventful day in room 606D at Medical City Children's Hospital. In fact, Ashley and I both commented that the day seemed to go by slowly for some reason. Maybe it is because we have settled in to our hospital routine, our hospital home. We know several of the nurses very well now and have our favorites - Rachael, Marcella, and Ashley! I know how to go down any elevator and know where I am and how to easily make it back to the room. I think, though, that the day went slowly mostly because we are still just waiting, waiting for answers, answers that may not still be available for a few more days.
Ashley finished her first TPN feeding and noticed a different type of stomach pain with it. This does not make sense to the doctor or the dietician, though, because with TPN feedings, the nutrition bypasses your stomach and filters through your bloodstream via a central line. She is currently on a 24 hour feed, so she received her next round this evening. She was happy to see that the large bag is clear and not yellow. While walking outside today, she felt like people probably thought the bag contents were something else! Her second feed has less vitamins but more fat, so it will be interesting to see how her body tolerates it.
Dr. Russo's main concern with the TPN feedings is what they could do to her liver. Therefore, her blood is drawn before 6 am each morning with results available before the next feed order is placed before 11 am. He indicated that TPN feedings are a temporary solution for that reason. That is why it is so important to have her continue to digest clear liquids, which is still difficult without a round of morphine beforehand. She ate 1/2 of a popsicle, drank about 16 oz. of lemonade, ate some diluted chicken broth, and drank water throughout the day. Amazingly, she has only lost 3 pounds despite not having any solid food for a week now.
Other goals for Ashley according to the doctor are that she begin to sit in a chair and eventually attempt walking. She sits up when we go on wheelchair walks obviously and sat up more in bed today. She still requires the help of her wheelchair when going to the bathroom due to being light-headed from POTS and due to having increased abdominal pain when she moves around.
The highlight of our day was a face time session with the 4 Roper boys and 2 Roper dogs. Josh was in rare form and had Ashley and I laughing a lot. Chris was wishing he could enjoy dessert with the others, but he gave up sweets for Lent. Ryan was on the quiet side but had plenty to say about the breakfast menu today. Apparently, David decided to use his new juicer to make random fruit and vegetable smoothie type things for the boys today. For boys who eat a large breakfast every morning, this did not cut it. Josh said he was so hungry in 3rd period he could not concentrate to do his work! Grace and Sadie were up to their usual tricks of looking for droppings from dinner under the table and around the kitchen area.
Ashley and I have talked a great deal about how this experience makes you appreciate the small things in life, things we all often take for granted. Fresh air. Sunshine. Taking a bath. Having clean hair. Being outside. Solid sleep. Eating. Drinking. Family. Friends. And so much more. I think we both thought of how important it is to slow down even more by taking the time to stop and smell the flowers because of what was going on today on the 6th floor.
Our wing houses a lot of pediatric cancer patients. There are some patients that have been there for a very long time as evidenced by how much their larger rooms are decorated. There are some patients who come for a couple of days for chemo and then go back home. All of the cancer patients have multiple signs on their doors about checking in with the nurses' station before entering the room. The patients have ranged in age from toddlers that are be pulled around in red wagons to teenagers that wander around on their own. All of them have their IV poles with several chemo drugs attached in tow. Many of them are without hair. The youngest ones are usually sad or irritable. The parents and grandparents looking after them often look exhausted.
Today, however, there were parents and many other children, teenagers, and adults openly weeping and hugging each other in the hallway around the corner from Ashley's room. I noticed them right away when I exited the elevator in the afternoon, and I immediately knew why they were so upset. My heart instantly ached, and I felt my stomach twist into a tight knot. I immediately began to cry as I was out of their sight.
I saw how much emotion was on their faces and in their teary eyes. I noticed how they were not trying to hide their emotions. I wondered how in the world does a parent survive such a tragic event in life of watching a young, innocent child slip away to our Father's loving arms because of cancer. I wondered if the food that others had brought to be shared among those grieving would still be there tomorrow. Would this suffering child continue to suffer?
As I close this entry tonight, I ask that you pray for this family of a 9 year old boy. I ask that you pray they will feel God's peace and comfort during this time. I ask that you pray for a cure for childhood cancer and all the other terminal illnesses that have no cure. I ask that your prayers lead you to do something for someone that is hurting so deeply that he/she does not know how he/she can face the next day. And, while I ask that you still pray for Ashley to be able to eat without feeling stomach pain and that you pray the doctors will aid us in finding answers sooner rather than later, I can't help but think this family needs your prayers even more.
This poor family has lost their son and will not be able to enjoy the small things with him here on Earth any longer. For those of you reading this, remember that you are fortunate enough to still enjoy the small things in life with those you love. The family of the 9 year old boy, however, must now wait to enjoy those moments in Heaven. And, to them I have no doubt that feels like an eternity....
♥ Yes, I will !♥
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