That's great news about Cammy! At least if she's able to come home, your family will be able to finally establish a liveable routine for yourselves.
Fittingly, Cameron is doing great and will come home Sunday. It will be a challenge to take care of this little girl but we can do it and we'll be glad to have her home finally. She has to have Viagra 1 or 2 times a day, Tri-Clear twice a day, inhaler twice a day. Then there are the therapists and nurses that will be in and out of our home. The oxygen, numerous appointments every few weeks. We have to go care for her at the hospital on Saturday and watch videos for infant CPR, stuff like that. A bit more news, Cameron went without her oxygen for 30 hours and held her saturation well but the doctors from the pulmonary hypertension team have said that she needs to be on it "most" of the time until her pulmonary hypertension is better. They are really using it as medication. Thank You all for the thoughts and prayers, do keep us in mind in them because this is the beginning for now until her pulmonary hypertension gets better. What I mean by this is she is getting better and seems healthy but her right side of her heart is still enlarged from when she had severe pulmonary hypertension. This could take years to fully reverse we have been told. You can look at her monitor and her vitals are good but sometimes when you look at her, it looks like her chest is moving more than a healthy baby. I hope that didn't confuse anyone?
from a medical view I highly doubt she will be kept on such a harsh anti-coagulant as viagra... If she continues to have circulation issues, she will more than likely be placed on lovenox or possibly just aspirin... hope everything if going well though... you have our support. :thumb:
I wonder if you understand her issues, such as in the beginning of this thread. If so, I hope you are right. She has an enlarged heart on the right side, it happened because the arteries going into her lungs are to rigid and thick. This caused her to have severe pulmonary hypertension, it will take years to fully reverse. The doctor also scared the hell out of me today, they do echos every now and then and said it looked like her aorta arch could be narrowing. They measured her blood pressure in her arms and legs and it was the same, this means that the narrowing was unlikely. They want to see her for a checkup in 2 weeks, they will probably measure her blood pressure in her arms and legs again at that time and maybe for years to make sure this isn't happening. If this was to happen they could put a stint in it but no one knows just how long that would last. I am always interested in the opinions of the medical community! Thank You all, It appears that Cammy will be home on Sunday! :thumb:
Sourdoughman, I haven't read the board in months. First of all congratulations on the birth of your daughter. I will pray for her, you and your family. I have a daughter with Down syndrome and although she did not have the heart problems she did have some major health concerns. Sunday we will be celebrating her 21st birthday! She wants me and her sister to take her to New Orleans to Cat's Meow so she can order a Bud Light. Amy graduated from Tara High School last year, after 4 wonderful years of inclusion. She is a great LSU football fan and has not missed a home game in 10 years. Her dream is to go to LSU as a student, so I have enrolled her in the LSU Summer Leisure Classes (cake decorating) and now she proudly and truthfully tells everyone she goes to LSU. Hope all continues to go well for Cammy. Email me if you need to talk. [email protected]
Thanks, Wow, The last few days have been real busy for us to and from the hospital. We now are learning her medications such as Viagra, TraCleer twice daily. She also gets a nebulizer twice along, Iron and some fortification in her breast milk. She also gets something to help her lungs stay dry, diaretic I think its called. She seems to be doing fine, seems like she now has the better of this deal as we are trying to learn all of this along with feeding her through her stomach tube. In general this may not seem like its too bad but when you consider some of this is every 4 hours such as her feeding alone, you have to pump the milk in her stomach then flush the tube and then let her stomach vent. You also have to measure out her medicines and then you have the 4 year old, Tyler who needs something about the same time you are doing all of this! We are happy and delighted that she is home, she has an appointment on Tuesday and another on Thursday. BTW, Cammy has been chosen for the Thank You letters for the Rocky Mountain Down Syndrome Chapter, her picture will be on the cover.
Thanks for the update. All that sounds so hard and tiring. I admire you and your wife's hard work. I'm glad Cammy has such loving, caring, and special parents. My heart goes out to you guys. Keep the faith. God Bless Cameron!
