Day 81 of Little Lincoln's journey! We've had alot of inquiries regarding Lincoln's status with his new feedings.... so here goes: Feedings only lasted about 33 hours before they were stopped last night. The same thing happened this time that happened a couple weeks ago... something is seriously wrong with his digestive tract that is baffling our doctors. What we know now is that our surgeon is out until Monday so his partner will be evaluating Lincoln in the morning and will give us her opinion. All options have been exhausted so we have NO idea what will be suggested now. His stomach is red, swollen, and very tender but he has loving gentle nurses taking great care of him and ensuring he is comfortable. On a happy note, they are planning to remove the ventilator tube and place him back on the cpap tomorrow! Once his vocal cords heal he will have a voice again! Can't wait to hear him cry!
Off the subject and a little bit of ranting: We, as parents, are very involved in Lincoln's care. We educate ourselves thoroughly on every single diagnosis or issue that comes up so that we are prepared and informed and can search for therapies or tools to help him improve. This apparently is annoying and frustrating to our doctor. We actually had an impromptu surprise meeting this week with our newest doctor, the surgeon, the NNP, the nurse, pastoral care, and the social worker. We thought we were only meeting with the surgeon to discuss his plan for Lincoln but what actually transpired in the meeting was totally different! The doctor used this meeting as an opportunity to downplay our concerns and frustrations and interject her own personal assessment of our situation. She stated that we need to learn to accept Lincoln's conditions and stop concerning ourselves with the life long issues he may have. I get her point! But what she doesn't realize is that while we are with Lincoln, he is our only concern. We spend our time holding and loving him. We buy him adorable outfits and take pictures every day. We search for educational toys to place in his isolette. We call constantly when we can't be there. We tell Linc all about his home, Kitty Sue, his brother, the happy future we envision! When we are NOT with him we spend hours reading about his conditions, alternative therapies, and gathering as much information from his doctors as we can. We thought this made us responsible loving parents! As parents who have been told to prepare for Cerebral Palsy, motor skill problems, learning deficits, vision issues, breathing issues, brain damage, etc.. wouldn't you be concerned??? OBVIOUSLY we adore and love him! Why would we drive 3 hours a day to hold him and kiss him and talk to him?? Needless to say, Greg had to grab onto my leg and sshhhhh me so I didn't jump out of my chair!! What I later found out from a nurse/friend is that the doctor is irritated with us because we are educated and involved and it is an inconvenience to her. Apparently they mostly deal with parents that just go with the flow blindly... that's not us. I spoke in length to our nurses about this meeting and they had actually heard all about it and were as stunned as we were! They said this doctor has only seen us 2 times and has no idea the time and love we put in at that hospital. We can endure the occasional clash with a doctor and are comforted by the fact that we are in the best Children's hospital in the world.. personality issues may arise but we know he is in very good hands. All we want is the best care for Lincoln and to be informed and involved so that we can do everything possible to give Lincoln a wonderful life.
Off the subject and a little bit of ranting: We, as parents, are very involved in Lincoln's care. We educate ourselves thoroughly on every single diagnosis or issue that comes up so that we are prepared and informed and can search for therapies or tools to help him improve. This apparently is annoying and frustrating to our doctor. We actually had an impromptu surprise meeting this week with our newest doctor, the surgeon, the NNP, the nurse, pastoral care, and the social worker. We thought we were only meeting with the surgeon to discuss his plan for Lincoln but what actually transpired in the meeting was totally different! The doctor used this meeting as an opportunity to downplay our concerns and frustrations and interject her own personal assessment of our situation. She stated that we need to learn to accept Lincoln's conditions and stop concerning ourselves with the life long issues he may have. I get her point! But what she doesn't realize is that while we are with Lincoln, he is our only concern. We spend our time holding and loving him. We buy him adorable outfits and take pictures every day. We search for educational toys to place in his isolette. We call constantly when we can't be there. We tell Linc all about his home, Kitty Sue, his brother, the happy future we envision! When we are NOT with him we spend hours reading about his conditions, alternative therapies, and gathering as much information from his doctors as we can. We thought this made us responsible loving parents! As parents who have been told to prepare for Cerebral Palsy, motor skill problems, learning deficits, vision issues, breathing issues, brain damage, etc.. wouldn't you be concerned??? OBVIOUSLY we adore and love him! Why would we drive 3 hours a day to hold him and kiss him and talk to him?? Needless to say, Greg had to grab onto my leg and sshhhhh me so I didn't jump out of my chair!! What I later found out from a nurse/friend is that the doctor is irritated with us because we are educated and involved and it is an inconvenience to her. Apparently they mostly deal with parents that just go with the flow blindly... that's not us. I spoke in length to our nurses about this meeting and they had actually heard all about it and were as stunned as we were! They said this doctor has only seen us 2 times and has no idea the time and love we put in at that hospital. We can endure the occasional clash with a doctor and are comforted by the fact that we are in the best Children's hospital in the world.. personality issues may arise but we know he is in very good hands. All we want is the best care for Lincoln and to be informed and involved so that we can do everything possible to give Lincoln a wonderful life.
I am so proud of you for your self education and involvement! As a professional who works directly with patients and their families I would much rather have a family that is involved and asking questions as opposed to the alternative! You guys stay strong! We all love you!!
ReplyDeleteKristi
Lora,
ReplyDeleteI don't know how you actually managed to stay in your chair.... If It was my child and the doctor were to say that to me.. I would NOT have been able to sit there and take it. I would have jumped out of my chair and probably started strangling the person who said it. They better be glad I wasn't there!!!! I woulda bitch slapped them for you!
Anyways, I'm glad that you are self educated and as informed as you can be. The dr is just mad because they can't get anything over on you. They can't say well it's this and there's nothing I can do.. if you know all about the issue and know about the solutions...
I'll shut up for tonight but I just wanted to tell you I'm with you 110% and I have all my friends praying for you all and lil Lincoln as well as myself & mom n dad! Mom and I look at this blog EVERYDAY!!! So, we will know how he's doing and so we can see his precious adorable pictures! I wish I could be there with you all!
Sending all my love!
Amy E.
They are Dr.s not Gods, so no possible way they can know EVERY diagnosis, treatment, etc. available. You guys are doing the right thing and I don't think there is one parent out there that would argue that. And OF COURSE you are going to be thinking of longer term effects, etc. How could one not? BUT, on the other hand you did right by 'grinning and bearing it' with the Dr. You don't want to be on their bad side either....need to be working together through this. Sounds like little Lincoln is in good hands!
ReplyDeleteI am so proud of you that you stood up to her. She always talks without thinking and without knowing the whole situation, and she couldn't have been more wrong. Lincoln is a very loved little boy, that is why we nurses love him so very much. He is a sweetheart and so nice to take care of. As for the care conference, the surgeons and that doctor are not used to being questioned intelligently. Keep questioning--it makes the care Lincoln gets better and more appropriate for HIM. Also, one suggestion from this anonymous NICU RN, ask for a 2nd surgical opinion from Dr. King, he is fantastic. It is your right to ask for one. Keep hanging in there, and know that Lincoln is our special little man in pod 0!!
ReplyDelete