Its been a busy few months with Doctor appointments and changes for Gids. We have begun to see a pediatric specialist at the hospital where he was born. She specializes in babies with special or critical medical needs. We saw her in November and again in December. We also saw a neurologist a few weeks ago after having an EEG. In addition Gideon had an MRI last week that will hopefully get us connected to the neurosurgeon to evaluate if surgical interventions would be appropriate for Gideon.
The EEG showed no seizure activity but slowed waves. The neurologist suggested that we keep him on the antiseizure medication because of the risk of seizures associated with his brain malformations. He offered to be available for consultation but did not see a need to be directly involved with Gideon at this point as the seizures seem to be managed well. He noted that as long as he is seizure free we can continue to mange the medication by weight and not take blood levels.
Gideon continues to struggle to gain weight. He has not gained weight since August. He is healthy and still in a healthy weight percentile but we are getting concerns. He WILL NOT take a bottle. He will only nurse. this presents a huge challenge because I work full time!
About two weeks ago we put the feeding tube (NG tube) back in out of desperation. It worked well for about a week until he began to vomit blood. we took him immediately to the doctor who explained this was a result of the feeding tube.
I only had to see him vomit blood once to take the tube out. I am all calm now but don't think I wasn't moments away from seriously needing a xanex last week!
He is on reflux medication which seems to also be helping him sleep and will prevent a rehash of the puking nightmare if we have to put the tube back in. My mom came down last week (a HUGE blessing) and has gotten him eating a good amount of rice cereal, fruit and veggies mixed with breast milk and some of my amazing friends have been donating breast milk.
oh yeah and we discovered that I am one of those rare lucky women with too much of an enzyme called lipase. what that means is that when drank fresh my milk is fine, but left to sit, even stored by guidelines, develops a metallic sour taste. the only way to prevent this is to scald the milk immediately after it is pumped which is hard to do when I pump at work.
it has been hard not to get discouraged for sure. sometimes it seems like if its not one thing its another!
On top of all that, my insurance has decided that we don’t need hospice anymore. This decision is based on the fact that Gideon is not “declining”. What that means is that we have to figure out how and where we can get our supplies for his dressing change.
Everyday a new chance to walk in trust I suppose.
That is it for updates for now, I am going to work on setting aside time every Friday for a quick note. Thanks for your patience!
Wow. You must have been so scared when you saw him vomit blood. Myra's been on a feeding tube for almost 4 months now and she has never done that, but I'd be terrified if she did. I thin she is going to end up on a g-tube before all is said and done. I really hope Gid starts to take a bottle for you soon.
ReplyDeleteWish I would have know about the milk thing sooner. I've already committed to donating my extra milk from before I went cow protein free to the Bronson Milk Bank, but if I end up with any extra later on its totally yours.
I wish we lived closer to each other. I want to give you a great big hug right now. Warning you right now... when the weather gets better Myra and I are coming for a visit. Love you.
About the dressing material - ask your doctor or hospice worker if there is a company that can send them to your home. When I had my cancer surgery, I had a seroma and had to change my dressing several times a day for 8 weeks - they were able to set me up with a company that sent all the supplies right to the apartment. I know it's a different situation for little Gideon, but perhaps there is a company that would help you out.
ReplyDeletePraying for you all. Love ya!
Diana