Monday was a very big day for Maxwell with many appointments...
First, the cardiologist evaluated him and while they are happy with his weight gain, the heart failure is taking its toll on other areas of the body. So they added yet another medicine and keeping a close eye on his blood pressure, heart rate, etc. But they are definitely very pleased that he has been able to gain weight. The dietician and doctors have really been working on this and have him on a VERY high calorie diet and so far Max is tolerating it well (with a few "toots" here and there!).
Second, the nose continues to be a struggle and I am meeting again with the ENT team tomorrow to decide what to do next. I have talked with another parent of a CHARGE child (a beautiful three year old girl - hi Renae and Cassidy if you are reading this!) who also has choanal atresia...and I am learning it can be an intense battle to keep the nose open and quite challenging to manage at home. Quite frustrating and scary as you can imagine. Perhaps one day Cassidy and Maxwell will be hanging out as teenagers and stick straws up their noses to be funny and remember the good ol' days of nose stents, suctioning, surgeries...
Last but not least, the hearing test did not go as well as planned. I can't even admit to myself yet about the possibility of him not being able to hear...perhaps I'm somewhat still in denial or perhaps it is mother's intuition. There will be followup tests that will give us a better understanding of exactly what is going on. I told the resident tonight that Max and I won't leave the ICU (a "sit in" if you will!) until we have a thorough plan on studying the ear situation.
Another day on this crazy roller coaster ride...very emotional and fairly disappointing. And yet today it is officially decided he can leave the ICU. Up, down, up, down, up, down...roller coaster ride indeed.
Wednesday, August 17, 2005
MOVING DAY!
Max is moving tomorrow (Wednesday) to the craniofacial floor...we are finally leaving the Intensive Care Unit! We are making progress! While there are of course some serious health concerns right now, the cardiologist and ENT doctor (the two biggest areas of concern) both feel comfortable with this move....and for the most part, so do I. If things should deteriorate even slightly, he will be moved back to the ICU. They have reserved a very special spot by the nurses' station for Max...they want to keep an eye on this wonderful little guy! I am already being trained in his care, and this will allow even more intensive training so we can prepare for going home...someday. What is great about going to "the floor" is that I can actually stay with him in the room 24/7...sleep, eat, everything! To celebrate his move, I bought him a swing tonight and he really likes it! It will make our new room feel more like home.
Many of you have asked about his weight gain...he is doing really well putting on the pounds (or ounces in his case). Max is now weighing in at 5 pounds, 8 ounces! Finally getting some meat on the bones! They want him to gain an ounce a day...and he is doing just that!
Thank you everyone for your thoughts and prayers...greatly appreciated! Sorry if I don't respond to every phone call or email, but I do love hearing from you...sometimes it might just take me a while to get back to you! :)
Many of you have asked about his weight gain...he is doing really well putting on the pounds (or ounces in his case). Max is now weighing in at 5 pounds, 8 ounces! Finally getting some meat on the bones! They want him to gain an ounce a day...and he is doing just that!
Thank you everyone for your thoughts and prayers...greatly appreciated! Sorry if I don't respond to every phone call or email, but I do love hearing from you...sometimes it might just take me a while to get back to you! :)
Sunday, August 14, 2005
HEART UPDATE / HEARING TEST
Max's VSD (hole in the heart) appears to be causing his liver some problems, so the cardiologist is reviewing the situation again tomorrow and possibly changing our course of action. However, they are encouraged that he has been able to gain weight despite his heart condition.
Tomorrow Max also has a hearing test. Last time his ear canals were too small so they were not able to complete the exam, but the initial news regarding his inner ear was promising. As you can imagine, I am quite anxious about this test and the results. Hearing loss (of different degrees) is prominent in nearly 90% of the children with CHARGE.
The ENT (ear, nose and throat) team is also checking in with Max tomorrow. They are trying to decide how long his nose stents should stay in place and how the nose situation will be handled once he goes home. There is always the danger of the nasal passages closing again and I want a clear course of action if that does happen and how I would know with enough advance warning. They are already training me on the suctioning and care of the nose....scary at first, but I am getting the hang of it!
So exciting to think of my beautiful baby coming home!!! The doctors are again discussing (of course this all depends on what the cardiologist and ENT doc think tomorrow of Max's progress) about him being transferred sometime next week to the "floor."
Please keep Max in your prayers tomorrow...he has a very busy and important day with a lot on the line. I am hopeful we receive great news about his hearing and that the doctors come up with an effective plan to temporarily deal with his heart failure.
Tomorrow Max also has a hearing test. Last time his ear canals were too small so they were not able to complete the exam, but the initial news regarding his inner ear was promising. As you can imagine, I am quite anxious about this test and the results. Hearing loss (of different degrees) is prominent in nearly 90% of the children with CHARGE.
The ENT (ear, nose and throat) team is also checking in with Max tomorrow. They are trying to decide how long his nose stents should stay in place and how the nose situation will be handled once he goes home. There is always the danger of the nasal passages closing again and I want a clear course of action if that does happen and how I would know with enough advance warning. They are already training me on the suctioning and care of the nose....scary at first, but I am getting the hang of it!
So exciting to think of my beautiful baby coming home!!! The doctors are again discussing (of course this all depends on what the cardiologist and ENT doc think tomorrow of Max's progress) about him being transferred sometime next week to the "floor."
Please keep Max in your prayers tomorrow...he has a very busy and important day with a lot on the line. I am hopeful we receive great news about his hearing and that the doctors come up with an effective plan to temporarily deal with his heart failure.
LOOK MOM, NO WIRES!!!
Yep that's right, today Maxwell...for the first time ever...was off of his monitors! Ok it was only for our about 3 or 4 minutes, but it was major for us! It was incredible! We actually went outside on the balcony of the ICU and Max had an opportunity to breathe fresh air...again for the FIRST time ever! Then we did a quick tour of the ICU and all the nurses oohed and aahed over sweet lil' Max! Everyone is noticing how much bigger and stronger he is looking! He is now 5 pounds, 4 ounces! Of course he still needed oxygen so Anne (our favorite respiratory therapist) followed along with us and I held the mask up to Max's face...and he did great. He actually was asleep in my arms the entire time, but I'm sure he was loving the adventure!
MAX LOSES A FRIEND
Today was a very sad in the ICU at Children's Hospital. Trevor, a three week old beautiful baby, passed away after complications from a hernia in his diaphragm. He had two surgeries last week and things were looking better. His parents were finally going to be able to hold their little boy for the first time.
My mom and I talked daily with Trevor's parents, a wonderful and kind couple from Canada, and we enjoyed the mutual support we could give one another. Trevor was their first baby and their pride and joy.
Trevor is back with his creator...healthy and peaceful at last, but he will be sadly missed here.
I can't even imagine what Trevor's parents are feeling tonight...there are several times when I have stepped away from Max's room that my phone has rang or pager beeped and I fear the worst. It is the most terrifying feeling. I am so incredibly in love with Maxwell and feel confident about his future, however I also understand life is very fragile. What keeps me going is knowing that Max is getting the finest health care and his life is truly in God's hands. All I can do is give him as much love as possible and be the best 24/7 advocate for his health care, education, and future.
Good night everyone...and please remember to enjoy and cherish your blessings, family and friends. Love, Amy and Maxwell
My mom and I talked daily with Trevor's parents, a wonderful and kind couple from Canada, and we enjoyed the mutual support we could give one another. Trevor was their first baby and their pride and joy.
Trevor is back with his creator...healthy and peaceful at last, but he will be sadly missed here.
I can't even imagine what Trevor's parents are feeling tonight...there are several times when I have stepped away from Max's room that my phone has rang or pager beeped and I fear the worst. It is the most terrifying feeling. I am so incredibly in love with Maxwell and feel confident about his future, however I also understand life is very fragile. What keeps me going is knowing that Max is getting the finest health care and his life is truly in God's hands. All I can do is give him as much love as possible and be the best 24/7 advocate for his health care, education, and future.
Good night everyone...and please remember to enjoy and cherish your blessings, family and friends. Love, Amy and Maxwell
