First of all we apologize for the delay in getting this update out to you all. Our latest adventures with Adi have finally brought some answers. We were admitted to Primary Children’s on Thursday the 11th of June, because Adi was progressively eating less, having restless sleep, grunting and screaming out in pain especially after she ate. Her love of food kept her eating but she started drinking less and struggled a little more each time she swallowed. She was just not acting like herself. She just wanted to be held all the time and had little to no energy.
To not make this email too long I have decided to summarize the findings. One of the reasons we were admitted to the hospital was because Adi couldn’t maintain her oxygen saturation in the 90s. An abdominal x-ray was taken to check if she had a bowel obstruction. There wasn’t an obstruction but they did find she was backed up so they gave her an enema (she ended up getting several in the next couple of days). Once they found out she was completely cleaned out and still not holding her oxygen saturation at an appropriate level, a pulmonologist was asked to review Adi’s x-rays. Dr. Uchida told us he was amazed she’d ever been on room air after her 2nd surgery. Her diaphragm is abnormally shaped with the right side being higher than it should be and the heart looked enlarged. He ordered an EKG, echocardiogram, and a test that shows the function of the diaphragm under fluoroscopy. The EKG showed possible enlargement of the right side of the heart and possible pulmonary hypertension. The echocardiogram findings disproved the possible problems shown in the EKG and that everything is ok with her heart so we are very grateful for that. The diaphragm study showed the right side is basically paralyzed and is blocking the lung from fully expanding. So far we’ve been told that the only thing we can do for that is surgery. They also did a stomach emptying study to make sure the contents of the stomach empty in a timely manner which is the case with Adi’s stomach.
We were released from the hospital on Friday the 19th. Adi has a feeding tube and is on oxygen 24 hours a day. Her continuous feeds are giving her about double the calories as normal children her size. The GI specialist and surgeon agreed she is malnourished and wanted to give her additional nutrition through her veins. They tried to place a PICC line but failed 6 times in each arm, so for right now we will see if the tube feedings are sufficient. We will continue to give her the thyroid medicine and growth hormone in hope to get her growing and healthy enough for surgery.
This little kid is a fighter. It was hard to watch her go through so much pain to get these answers but we are finally feeling like we have a better understanding of what needs to be done in order to get this kid healthy. We are grateful for her strength and ability to overcome all these trials that have come to her at such a young age. We continue to appreciate your prayers in her behalf. We love you all and can’t wait to see you at the summer festivities.
Love,
The Whitakers
Feeling a little better and ready to start making a mess.
No comments:
Post a Comment