June 20, 2014

 Sorry for the lack of updates, it’s been a crazy past couple of weeks.  The past 2 days have been the best we have had in such a long time. As of yesterday Molly is off the nitric oxide and the nimbex (paralytic). Pain management came in and suggested a new med. So, they are currently weaning her fentanyl and versed with the help of ketamine. So, for two 3-hour intervals throughout the day, her fentanyl or versed is turned off and she gets a ketamine drip. This has made such a huge difference for Molly.  I think she just got so used to the fentanyl and versed and built up a tolerance.  They were no longer helping to control her pain or keep her calm. She has been awake and alert much more. But the most important part is that she is no longer crying and upset when she is awake. Before the ketamine, they would have to give her a bolus (one time strong dose) of fentanyl or versed to keep her calm. She would fight the vent and her sats would drop.  Now, she is awake, interacting with us, and we have seen more smiles in the past 2 days than I can count!  We are in a much different (and better!) place than  we were at just last week. We put her in her bouncy seat and have started to hold her again.  Yesterday we held her (we took turns) for almost 5 hours!  She slept nearly the whole time. She loved being cuddled. We loved it too. The attending doctor and one of the fellows and a couple of nurses came to her room just to see us holding her.  Some of them only know Molly as a baby lying in a bed not being held. I think that most of them never expected her to get better. Tim and I of course knew she would. Molly loves to prove the doctors wrong, and she is showing off now!

Now, onto more medical specifics. Molly still remains NPO (no feeds). This is actually per our request.  Every time they try to feed her, she gets sick. This is why we have been in the hospital for the past 6 weeks.  It’s the same thing over and over.  They feed her, her belly get distended which pushes up on her lungs. Then it’s harder for her to breathe and she requires more pressure from the vent. The increased vent settings will actually start to cause more lung injury. We have been told that if an adult were on a ventilator, that person would require pressure support of 15.  Molly’s pressure support is 30. This is so important because such high pressures can cause a pneumothorax. The doctor said that we are walking a fine line right now. He also said that if a pneumothorax were to occur, then that was pretty much it. So when a GI doctor comes in to talk to us (as was the case about a week ago) and says they want to try to feed her again, we said no, absolutely not. I have asked repeatedly for them to run tests to see what is wrong with her gut. But, they say there are no tests that they can do. Instead, to test her gut they want to feed her. I just do not understand. So, she is still receiving her nutrition from TPN.

Now.....omegaven.  She has been on it for 6 weeks now. Her bilirubin had actually gone down to around 12. I just knew the omegaven was the reason, I was sure of it. This was right after she was on dialysis which removed all of the toxins from your blood. Bilirubin was one of those toxins. So, about a week after dialysis her bili began to rise again. As of yesterday her bili level was 21.3. It is very disheartening to see it rise that high again. But, it is not as high as it was just a couple of weeks ago which was 30. I have read stories of other omegaven kids that once the CRP (C-reactive protein which is produced by the liver and is a marker for inflammation) is less than 1.0 that the bili level really begins to drop. Molly’s CRP is around 3.  I also read that for older babies it can take longer for the bili to begin dropping. I still have faith in omegaven!  I just have to be patient!

We are still waiting to hear if Boston will accept Molly as a patient.  It’s a lengthy process. The paperwork Boston needs was sent on Wednesday. Our ICU attending spoke with Boston’s ICU attending doctor. Our GI doctor spoke with Boston’s GI doctor. Our pulmonologist spoke with Boston’s pulmonologist. The state of Molly’s lungs may pose a problem for transport though. We just have to wait and see.  The Boston team of doctors are supposed to get together today and discuss. Then on Monday they have some sort of case conference where they, along with even more doctors, will discuss Molly’s case as well.  We should know something by next Wednesday at the latest.

Finally, we are planning a fundraiser for Molly. It’s a 5k walk/run on Saturday, July 12, at Buford Park in Sulphur Springs.  It’s called Miles for Mighty Molly. We are still finalizing the plans but I will post about it, along with a flyer, when everything is worked out.  A special thank you to Molly’s favorite auntie, Nicole. She is helping to get this thing going.  We couldn’t do it without her!  Me love you long time sister.

Pictures....a family picture; molly with her favorite nurse Heather; sporting her hello kitty dress; and with her daddy.