Wednesday, March 7, 2012

What a day!

Hi friends,
We've had quite an eventful day! Let me recap for you:

This morning I woke up feeling pretty run down and quite certain that I had mastitis. I was suspecting that trouble was on the way and I was right. When I got to the hospital I asked our nurse, Lesley, to page the lactation consultant and she confirmed what I feared...I indeed have mastitis. Boo. So, the lactation consultant prescribed an antibiotic for me and gave me some tips. I decided to stay with my boy on through lunchtime and then head home for a little rest. I knew I could get a nap in while our sweet A took her nap this afternoon.

When I walked in, Jude was being held by the physical therapist and he was totally worn out from all his exercise! So, I snuggled with Jude and he fell asleep in my arms for an hour and a half. Holding him and watching him sleep NEVER gets old. What a blessing to have him with me and completely peaceful! Praise be to our great God!

After Jude woke up, I went to rounds with the doctors and as usual we discussed the plans for Jude for that day. They were all very happy with his progress and his recent move to nasal cannula. They also brought up that they were also open to considering transfer to Greenville Hospital System sometime NEXT WEEK. I think I nearly fainted. They told me that our insurance would approve transfer and that they would begin checking with Jude's many doctors to get their individual opinions.

I must stop here and tell you that I was absolutely THRILLED with the idea of being closer to home and having our little guy back in our local community. But I was also nervous about many things. I was nervous about putting Jude in a new environment...a move to GHS would also mean that Jude would be in a PICU instead of a NNICU. I was nervous about getting new doctors, nurses, OTs and PTs. Most of all, I was nervous about the possibility that Jude would need more surgery in the future and that he would be far, far away from the amazing surgeon (Dr. Hebra) that did Jude's CDH repair and saw all of the damage done to Jude's insides (adhesions) from the infection he suffered through months ago.

I can't remember if we explained it on the blog after Jude's CDH repair...but basically, Dr. Hebra said that Jude's insides were such a mess that he'd rather not have to do surgery on him again. But if Jude needed another surgery, he wanted to be the one to do it. Our hope is that Jude will not require any more surgeries in his abdominal/chest area...but we also know that Jude may need a g-tube (this is not a certainty, but a serious possibility). Brian and I KNOW that we'd only want Dr. Hebra to put it in because Jude's internal anatomy is so unique. So, as I mentioned above...this was my greatest concern.

So, back to rounds: the doctors agreed to check in with Dr. Hebra and they also said that they would like to have another echo completed to check on Jude's pulmonary hypertension and get an opinion from the cardiologist too.

So, I left rounds hopeful but anxious. I called Brian and we agreed that we wanted to hear more from Dr. Hebra and cardiology. I also took some time to talk with our nurse, Lesley,  because we greatly respect her opinion. She has been with Jude since his ECMO days and she knows our little guy well. She is super knowledgeable of his condition and I felt confident that she would share her thoughts with me. Lesley agreed with our concerns about Jude's possible g-tube surgery and she shared several other reasons why it might be beneficial for Jude to remain at MUSC.

After talking with Lesley, I went back to the house and took a great nap while my mom went up to the hospital to get in some Jude snuggle time. While she was there they completed Jude's I called Lesley to find out the results. Jude's echo looked better than the last one! (of course, don't take my word for it until I hear about the final report in rounds tomorrow) His PDA had closed up and his pulmonary hypertension looked even better. Praise to our good and gracious God for answering our prayers!

Lesley also shared with me that one of our doctors spoke with Dr. Hebra today. Apparently, Dr. Hebra doesn't want Jude going anywhere until we find out if he is going to need a g-tube or not. Our hope is that he will learn how to feed by mouth (and get enough nutrition to grow!) and that he will not need a g-tube. But Dr. Hebra doesn't want us taking Jude to GHS until we can be certain that he doesn't need a g-tube and in the event that he does need a g-tube Dr. Hebra wants to be the one to put it in.

So, where does that put us now?
We won't be going to GHS next week. We are a little bummed about not being home yet...but we are also relieved to have answers about Jude's future. We want the best medical treatment for Jude and we will stay here to make sure he gets it.

What can you pray for?
Jude's feeding: Please pray that the Lord will provide a way for Jude to learn how to nurse from the breast or from a bottle. Please pray that he is able to avoid the need for a g-tube. We are hoping to work extra hard on his feeding/sucking in the coming days/weeks.

Jude's health: Please pray that Jude will continue to stay healthy as he continues his stay in the hospital. It's easy to get sick when you are in the hospital for so long.

Jude's respiratory: Jude is on a nasal cannula and we remain hopeful that he might come off of this before he returns home. Will you join us in praying that he will be able to return home without any respiratory support?

Our endurance: While we are certain that staying in Charleston is the best choice...we are weary and we miss home. I've been here since November 21st, 2011...quite a long time. Please pray for us as a family as we continue to be apart periodically. Pray for us as we miss our friends and church family. We are so thankful that so many of you have continued to remember us. We've had visitors, phone calls, letters, emails and texts to cheer us up along the way.  Thank you!

It is good to give thanks to the LORD,
to sing praises to your name, O Most High;
to declare your steadfast love in the morning,
and your faithfulness by night,
(Psalm 92:1-2 ESV)

1 comment:

  1. I hope you get to come home to Greenville soon! We had a wonderful experience in the PICU at GHS (and Downtown Pres. people are always around! It's great). We found that the staff in Charleston at MUSC, while awesome and capable, really had an opinion that Greenville is quite the backwater and not-quite-up-to-snuff. I'm not sure if that opinion still exists today, and if there was really any good reason for it in the first place. I can totally understand you wanting to use the same doctor, but also, don't fear the quality and expertise of care you'll get in Greenville. You might talk to your Greenville pediatrician to get his/her opinion as well. Ruby also has unusual anatomy (DiGeorge syndrome lends itself to veins going in unusual patterns and other things that aren't 'normal') and they just took extra precautions (in one instance, using the x-ray to help put in her port in her arm that ran to her heart).

    Also, you mentioned financial changes, etc. Ruby qualifies for Medicaid because she is considered 'disabled'. It has been wonderful, because it pays for absolutley everything. There is a lot of paperwork, but with all the doctor's appointments she has (and I'm sure Jude will have), it has been great. We would have most definitely gone bankrupt with trying to pay for everything. She is in BabyNet right now, and also CRS (children's rehabilitative services)which helped us get the Medicaid (and it is not income based). You can talk to the social worker for more info, or I can send you some contacts.

    I hope this wasn't too intrusive, but knowledge is power, right? :)

    Praying for you all!