Tuesday, September 14, 2010
Some good news, good times.
I had an opportunity to meet with some of the doctors today at Children’s Hospital and now have a better understanding of Madeline’s condition and what to pray for. It was really nice to get here in the daytime when more of the doctors were around and get to hang out with Sara, one of our daytime primary Nurses. Sara is awesome, she sings to Madeline and really cares for her (more than medically) and we are really blessed to have her.
Earlier today, Madeline began setting off alarms as her saturation levels dropped down into the 40’s and her heart rate dropped down to 70 from 140. Sara was down the hallway getting a drink so Lisa went out in the hallway and called for help. One nurse came in and then called for others. Another nurse and respiratory tech came running in and they started making all kinds of adjustments trying to bring her back. Sara came waltzing back in as they were all in here and went right up to Madeline’s bed and said: “Miss Madeline, are you pooping?!?” Sure enough, one diaper change and everything was fine. Later Sara said “Yep, Madeline is definitely a princess and doesn’t like her bottom to be dirty.” Praise God for Sara!!
Seems Madeline has made leaps and bounds of progress in the last 3 days (Praise God!!). Her glucose levels have been stellar (answered prayer) and her lung infection is slowly going away. There is still some ambiguity about the Growth Hormone I just picked up from the pharmacy today. Dr. Theresa Grover, the neonatologist I spoke with, said that because of her great glucose levels and other good numbers she is going to push the endocrinologists to delay giving her the growth hormone for a week or so and see how Madeline does on her own.
An opthamologist came by to look at her eyes. He drew a picture for Lisa of what normal optic nerves look like and what Madeline’s look like (see attached photo). It’s really a funny drawing and Lisa can’t look at it without laughing. He’s not really sure what it means but something they will look into further and probably do some eyesight testing in the coming months.
With regards to her latest DNA finding (specifically: The Chromosone 9q Subtelomere Deletion Syndrome or 9qSTDS), apparently it hasn’t been confirmed yet. If you remember, we originally got another diagnosis of 8p23.1 and this latest test revealed that the 8p23.1 addition wasn’t substantial enough to cause any major symptoms. This new confirmation test would reveal whether or not Madeline really has this new 9qSTDS genetic defect and what percentage of cells are affected, which would determine the likelihood of symptoms occurring. The nurses don’t think she has it.
The paper we were given to read about 9qSTDS said that universally the children had hypotonia which is weak muscle development which affects movement (arms, head turning), breathing and swallowing. One of the major concerns is their inability to close off their airway when eating or drinking so they get lots of lung infections. Well Madeline has already pulled an IV out of her arm, turns her head and looks at her nurses while they do her cares, and then main problem yesterday when they were trying to intubate her was that she closed her airway and wouldn’t let them get the tube in. As Dr. Grover (who was the one who finally got the tube past her vocal cords) remarked, she closed her airway like a steel trap.
The plan for the next week or so is to continue to wean her off the ventilator and wean her off the extra glucose and hormones she is currently getting. Depending on how she does they may start talking about taking her off the ventilator sometime in the next 2 weeks. Her feedings have gone very well and they have already tripled the amount she is getting in the last couple of days. They are still only at about 25% of what they should be giving her and plan to keep increasing the amount as she tolerates it for the next week and a half.
Here are my requests. Please pray that her glucose and other levels remain stellar for the docs. Pray that her feeding continues to go well as they increase the amounts so she can get the calories she needs to grow. Pray that the confirmation genetic test comes back negative so this is something we can put out of our mind. Continue to pray for Madeline’s heart, she still has 3 holes in it that will need to either go away (PRAY, PRAY, PRAY) or she will need an open heart surgery to correct them. Pray for Madeline’s eyesight, that it is fine. Pray for business for Soundings so we can get back on track. Pray for Lisa and I and the girls for God’s supernatural peace during this season in our lives. Thanks again to all who listen, all who pray, and all who have served us – you mean so much to us right now.
Shanker & Lisa.