Everyone is always commenting on how they wish they could see Kate's personality when she is not sick and in the hospital, so I made this poster and included some of my favorite pictures of her.
One of our favorite nurses, Angie, loves to pamper Kate. This is the first time Kate has ever had her nails painted. I must say, she has some great nails (unlike her mom).
Someone has some "grumpy pants!"Yes, I have been a "bad blogger" lately so I thought it's about time to post another blog. I feel like our world has stood still for the past couple of days (or should I say weeks). We can't seem to figure out what is going on with Kate. Last Wednesday when she went down to the Cath Lab to get a more accurate view of the pressures in her lungs and heart, the results showed that Kate really doesn't have Pulmonary Hypertension (which they originally thought she did). So, medication really won't help the problem. They also found that Kate's heart hasn't significantly changed since her last Echo cardiogram back in October (which is great news that the function has not digressed). But, we still can't seem to figure out what is causing all of these issues. A team of doctors and specialists are having a conference tomorrow morning to discuss Kate's situation and see if they can come up with a plan for her. We have kinda been at a stand still this past week waiting for them to collaborate. We have a meeting set up for Thursday to discuss their feelings and make a decision for what will best benefit Kate. As I have mentioned before, she is still too small to go in and have her pulmonary valve replaced, so a surgery at this point is pretty much out of the question. Plus, they don't think that fixing the valve would make much of a change for her heart at this point.
It has been extremely frustrating for us because Kate is a unique little baby with a unique condition that no one can seem to figure out. However, she seems to keep fighting her way through all of these obstacles. One option they have presented to us is a Tracheostomy. We crossed this bridge back in August and felt like a Trach wasn't necessary for her to in improve her breathing issues and Kate proved that to be true. This option has come up again and we are still not 100% convinced that this is what she needs. We feel that the best medicine for her would be to get her out of the hospital and back home so she can re-gain her energy level and continue to grow. The bottom line is that no one knows indefinitely what is the best option. So, we are holding out until Thursday when we have all our options out on the table and then will hopefully be able to make an educated decision to help Kate's future care.
10 comments:
Poor little Kate! I hope that the meeting tomorrow goes well and they can figure out how to best help her! We will keep you in our prayers.
I love her cute pink finger nails! I am dying to try it out on Paislee - just not sure I can keep her still enough to let them dry...could be a huge mess.:)
Please let us know if there is anything you need!
(oh,this is kacee - just noticed I was logged in as mike, oops!)
That sweet little Kate! That was the cutest grumpy picture we have ever seen. We are hoping for some progress in the next couple of days for you guys. You are all troopers!
Love, Marie & Chris
Thank you for posting an update. Even though I just talked to you, it is nice to see her newly painted fingernails and her cute pigtails. She looks so cute even though she may be grumpy. Who wouldn't be really after all she has been through there. I'm sure she is as sick of the place as you are. Anyway hang in there. I hope tomorrow brings new hope and new answers that will work for what you feel is right. Love ya!
Gina
You are always in our thoughts - thanks for the updates on your blog. We hope for the best with Kate and that she can come home soon!! Take care and hope this week is great for you guys!!
Hello Marcae, sounds like busy times for you again but what would are lives be without that huh. I am still praying every day for your little family and hoping that the Lord with work this out. I am sorry about the cath lab I thought that was the answer too. It seemed to fit so well with her symptoms. Well i love you guys and am here for you. stay strong!!!!
I hope you don't mind my comments. . . I just read your latest blog and I can say I truly understand not knowing what the "issue" is. We were in the exact same situation with our little Gavin. We still don't know what was wrong with him. As far as a trach goes - Gavin had one. We learned how to care for and use the trach. Please let me know if I can be of ANY help in your eduation about trachs. I would be more than happy to talk to you about the trach stuff. We pray for you all of the time.
Lindsay Bailey
Linzy9282@aol.com
We are thinking of you guys, always. We will wait for an update after the meeting on Thursday. Our prayers and fasting have been that the physicians will be able to make a definite decision on what is going to help Kate get better so she can come home and be a big sister. We have faith that our Heavenly Father will guide their thoughts to the solution. We love you guys. Give cute little Kate a kiss for us. I love her nails - nothing says girlie like pink nail polish!
I am just thinking of you and your little family. Hope things go well Thursday.
We just want you to know that we feel for you and will continue to keep your family in our prayers. I'm sure it must be frustrating sitting and waiting and not having any answers. I keep thinking this morning that maybe part of the outcome from these trials will be that you will be able to bless another family with strength who has similar circumstances.
Hang in there. We'll keep checking on Kate.
P.S. Love her nails!!
Hope things went well yesterday and you have come to a decision about Kate. We love the pink nail polish. That is so cute that the nurses would do that. Sometimes I'm sure that's all they can do to let her know they care. Poor thing and poor you guys on your little heart strings and emotions. All I can say it's a good thing you have the gospel and know that He has a plan for you all and little Kate, it's just frustrating not knowing exactly what that plan is. We will keep you guys in our thought and prayers continually. We love you guys and pray for the best!
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