Christmas Struggles 2013

Faith & Graeme with Santa

Faith & Graeme with Santa

FYI-I started writing this post before Faith went into the hospital and just never got a chance to finish it. I picked up where I left off so it has ended up much longer than I had anticipated.

Just wanted to write a quick post with a few updates but mostly to wish everyone a very Merry Christmas and Happy and Healthy 2014!

Faith got pneumonia right before Thanksgiving. Fortunately, she handled it very well and barely had any signs of respiratory distress. A fever of almost 105 degrees prompted us to get her to the ER immediately. We spent some time in the ER that evening but she was able to go home. Besides being very lethargic and having the high fever, she really did not have any other issues associated with the pneumonia. Since her recent hospitalization and the severity of her issues at the end of September, we weren’t going to take any chances so we immediately got her to the hospital. Better safe than sorry! We still don’t have any good explanation for the pneumonia. We had all been sick at home so it is hard to say. We are assuming maybe a virus got into her lungs. It did not appear to be aspiration related based on the chest x-ray. We had been in the clear for so long with pneumonia that it is a bit puzzling. I was very impressed with how well Faith was able to manage it! Another good sign of her strength and resilience!

My exciting news to share is how well Faith continues to tolerate blended food. She is getting approximately 65% of her daily calories from blended food that is pushed through her g-tube. She is getting 9 boluses of blended food throughout the day. She is getting breakfast, lunch, and dinner! We are down to giving her just 1 can of Pediasure 1.5 overnight. I love, love, love this change! It does require quite a bit of measuring and calculating calories and other nutrients right now.  All the details are very important in the early stages of doing a blended diet but as time goes on I am sure that it will become much simpler. Blending is a regular part of my day now and I am learning more tricks as I go! I am so excited about all the benefits to Faith which include less reflux and constipation issues to name just a couple. Best of all, she is gaining weight which gives even more evidence that this is the best diet for Faith.

**I am picking up here where I left off and planned to end of the post.

Faith had an appointment scheduled with the pediatrician the Friday before Christmas to get her right ear checked. We had two audiology appointments in the past few weeks which she had some testing done. The tympanogram results were not good for her right ear. When I took her back for the follow-up appointment last week, it was flat on the right ear which means there was fluid in it. We weren’t sure if it was infected or not so Faith was referred to her pediatrician to take a look at it. Luckily, we already had an appointment scheduled with the pediatrician that Friday because Faith had a restless night Thursday and I knew she was sick. She had also started running a fever. I took her into the doctor’s office and her oxygen saturation levels were not good. The doctor sent us to the ER with the assumption that she would probably still had pneumonia and would need to be hospitalized to get IV antibiotics and oxygen. That pretty much sums up what happened after our lengthy ER visit! Faith was admitted to the hospital. She had another chest x-ray which revealed her recent pneumonia had not cleared up. Over the course of the next day, it was also determined that she had bronchiolitis and rhinovirus. Oh, and yes the right ear was infected! Lots of stuff going on for Miss Faith and it was taking a toll on her! Any type of bacterial infection or virus in itself is way more challenging for Faith to handle than a typical developing child. Some close monitoring and respiratory support at the hospital was much needed.

As the weekend progressed, Faith seemed to be doing better and was taken off oxygen that Sunday morning. Time proved that she wasn’t ready to be off oxygen and she started struggling more. She was put back on oxygen but was still retracting much more. On Monday morning, her blood pressure was very low and concerning. I was concerned that her body was not handling the stress of being sick due to her cortisol deficiency. She was put on IV hydrocortisone crisis level steroids which seemed to help. Overall, Faith was just looking worse and the doctors were not comfortable with the direction things were going. Faith was moved to the PICU Monday afternoon and stayed there until Wednesday(Christmas night). While Faith was in the PICU, she had a more specific swab test that confirmed she also has RSV. Faith had 3 chest x-rays and the final one looked so good that the doctors said there was no way she could have a true pneumonia. Most likely, the RSV caused holes due to lung collapse that can often look like pneumonia. After her stay in the PICU, Faith was moved back to her old room on a general medicine floor where is still now.

The coughing has been a big challenge for Faith due to her low tone and has required her to work extra hard to be productive while coughing. She continues to need oxygen support. We have tried to wean her off oxygen several times but her oxygen levels desaturate and she requires oxygen again. Faith has been in the hospital for 9 days now. We are very anxious to all get home and be back together as a family. It seems that Faith’s body just needs some more time.

Thank you so much for all the love, prayers, and support!

Keeping the faith,