Owen's PICC placement went well but he had a lot of bleeding. The ordering cardiologist wanted a cuffed PICC, where they stitch a little cuff under the skin so the PICC cannot move out of place. They allowed me to scrub in again so we could use less sedation and I'm so grateful for that. Owen has some stenosis above his SVC and hopefully this vein will hold out until transplant. The following day we had to change his dressing and it was extremely painful! Lots of dried blood around an open wound to be removed and then we had to use Chlorahexidine to clean it.. it was awful and we are glad it's over for a week.
The weekend was super rainy. We grabbed movies at Redbox, listed to music and built legos. We both binge watched our shows on our devices and it was a perfect weekend.
We made it back to school on Friday and again today. Owen is kicking butt! We mostly do academic lessons in our room and go to school for projects.
The entire hospital is overflowing with sick kids. Every room in the unit has an isolation sign on the door. Today we were told we may need to pair up with another transplant patient so they can have our isolation room. I'll just not go there, but it's not happening. Owen is borderline Neutropenic again (low ANCs) and post transplant waiting for a heart.
Here is my PSA of the day. If your kids are sick...keep them home!!! Teach your kids good hand washing. It breaks my heart to see so many kids sick enough that they need to be hospitalized. Don't spread germs!!
Back Home....
Logi is missing mama. He plays hard and loves on everyone around him. Kam is driving to school and I make her text me when she gets there. Parents of teenage drivers... Does it get less terrifying letting them behind the wheel?
Logi put Elmo to sleep..."shhhh"
I pray for a heart offer every night. We pray for Aly's family. We pray for the future donor family. This is the hardest journey. This will be Owens 5th open heart surgery and that is terrifying. I snuggle each night with this sweet boy and it's all worth it. The anxiety, the fear and the million grey hairs. It's all worth it.
14 comments:
How awful to judge someone who is waiting for a heart so that her son can live! Everyone you meet is fighting a battle you know nothing about. Be kind. Always!
We're praying for Owen and your entire family from AZ. ����
I support you in the need to stay in a private room. Sending my love and compassion as so many of us have for Owen and your family in our hearts. Your love and strength are commendable. Praying Owen stays strong and ready for when the call comes.
Adding my love and understanding as well. It is so easy to hide like a coward behind a keyboard and make anonymous posts and judgments about things that only YOUR family can understand. Hugs, love and prayers to your family Andrea! Thank you for sharing this tough journey!! <3
Andrea, you are a hero, and please don't take the first comment to heart. You are an incredibly strong, caring mother and sweet person. I know that you are getting your strength from God. I am praying daily that Owen's heart comes soon, and each day I check the blog to see if there is any good news.
Andrea, you are a hero, and please don't take the first comment to heart. You are an incredibly strong, caring mother and sweet person. I know that you are getting your strength from God. I am praying daily that Owen's heart comes soon, and each day I check the blog to see if there is any good news.
Sending love and prayers that Owen stays healthy and the perfect heart comes soon. You have always been Owen's number one advocate and he's so blessed to have a mother who will always fight for his needs. We can always find joy and count our blessings, but no one should be minimizing what your family is going through. You are a very loving, compassionate person and I'm always amazed by the positive, hopeful attitude you keep.
You, Owen, and your family continue to be in my prayers, along with any potential donor's. Our community lost a young lady about a month ago and she donated her organs. Her mother put on her FB page how good she felt about her daughters choice to donate her organs and how others are living on through her. I think, I know you are the best most amazing mother ever, the way you care for Owen, yet always make time for your other children also. If we don't watch out and do what is best for our children, I promise no one else will. My boss came in yesterday with a virus and while I did stay at work, within close proximity to him, I would have loved to ask if I could go home since he was sick and chose to come to work and share it with everyone else. Enough ranting, you are awesome, you take care of Owen like no one else and you will continue to be in my prayers. A friend in East Texas, Pam
I have been in Andrea's almost exact situation. Patients don't get much sicker than Owen. In fact, he should probably be in the ICU. The fact that Andrea is there as a full time mom and nurse to help watch and communicate every detail of his care has already opened up a room in the ICU for another sick child. Sharing a room at this time of year is a bad idea, for both children. If Owen were to get sick, he would be removed from the transplant list until he got better. The last thing doctors would do is transplant a sick kiddo and then completely wipe out their immune system. Andrea is not being selfish, she is being an advocate for Owen. The hospital has better options for both children. Furthermore, transplant moms live with a lot of survivors guilt. i know Andrea would never pray for another child to die. We meet our donor's parents and their families. We know how these precious children died. The parents have listened to their child's heart beating in our child's body. Knowing that that precious heart is now sick and will eventually stop beating, we worry about causing additional pain and loss to that donor family who we have come to know and love. So, we pray for that donor family. Each day we sit in that hospital room watching our sons health deteriorate. Hospital days are long and hard. Andrea does a good job of being positive in her posts, but that is not the reality of hospital life. We catch our kids throw up, because their ischemic guts cannot digest food, we get them ice water and try to get them to drink it, we dim the lights because they get migraines from the medicine and we put cold rags on their foreheads, we catch their pee and record their ins and outs, we talk to doctors, nurses, social workers, and every other hospital rounder/visitor that is involved in our child's care. We try to keep them up to speed with school work even though most days they don't even have the energy to open their eyes. We try to entertain them and keep hospital life fun. They get blood draws, dressing changes, medication, shots for neutropenia- all of these things create anxiety and fear in our children. I couldn't even go to the restroom in my son's hospital room bathroom without my son having a panic attack. The smell of food made him sick so I couldn't eat in his room so I hardly ever ate unless somebody came to sit with him while I could run to the cafeteria. Through all of this, we try to manage things at home with our other children. We do our best to be a support to them, because this is hard on the siblings as well. And so, we pray as mothers that we will have the opportunity to continue on in our situation and we realize we are blessed with each day we have to hold our child. We pray that our child's weak, frail bodies can hold out and when our child falls asleep at night we quietly weep because you both made it through another day. We also pray that a family who is experiencing the greatest tragedy of their lives will have the courage to say yes to organ donation. We realize that another mother is experiencing great pain and loss. This loss has not taken place because of our prayers, and we certainly never pray for another mother to experience loss! We pray that IF the loss is going to happen that hearts can be softened to the idea of organ donation. And then when our child receives the organ and we meet this incredibly selfless family we have to try to not feel guilty. I cannot think of many other human beings who experience such a drastic conflict of emotion. Unless you've experienced this, you cannot possibly understand what the experience is like. Andrea needs love, support and encouragement right now. Not judgement and hate. You are doing an amazing job Andrea! And you are an incredible mother! Hang in there! We keep your family in our prayers always!!
Donor mama here: We donated our son's heart, liver and kidneys after he was killed by a drink driver. We would hate to think that another mother was praying for our son to die so that she could have his organs for her child's benefit. While we can only imagine how difficult it is for parents of chronically ill children to deal with the day to day routine of hospital life, at least your child is still alive and has a fighting chance. I would give anything to spend my days playing Legos or watching movies with my child, even in a hospital room. I miss him so much it physically hurts to breathe. I do feel extremely appreciative that the three recipients of our son's organs have all reached out to us with an outpouring of love, support, and gratefulness for our donation. We pray every day for those families.
DonorFamily, she isn't praying for a child to die, she is praying for her child to get a new heart. If that heart could come in some other way -- something mechanical or if it could grow in a petri dish -- I am sure that is how she would like it to be delivered. Unfortunately, at this time, the only way for him to get a new heart is for another child to lose his or her life. She is not hoping for the latter to happen, she is only praying that the former happens.
By the way, to call Owen chronically ill grossly understates the urgency of his need for a new heart.
So beautifully said Chrissy! ❤
This was a hurtful comment. As someone who was kind enough to give the gift of life, you should know death happens. Nobody was sitting around praying for your child to die. Would you not pray for your child if he were in the same position? And the fear this woman lives with everyday wondering what is next for her son and if she's going to have to say goodbye? I'm so sorry for the loss of your child, but I hope the next time you post something it is to be uplifting, and not to cause more pain to someone who fights on a daily basis. To compare her situation to yours is wrong. I hope someday you are able to find peace with your decision, and to understand that death happens, with or without organ donation.
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