The last 40 hours have been like a bad dream where I just can’t wake up.
Checking in to the hospital was OK, even though we had to get there by 5:00am.
He wasn’t even bothered in the pre-procedure room, he was in a good mood.
The surgery was really fast and the doctor was very positive about how “slick” it all went. He thought there was a good chance that removing the big cartilage would solve the issue.
He went to recovery and we got to our room quickly, with the trach in.
It was all too smooth. When Brendan really started to wake up from anesthesia, he was beyond hypersensitive. If you so much as grazed his arm, he would yell “OW! OW!” and cry. He hates all the stickers and wires and the big IV in his hand with an arm board all taped up.
It was an epic battle just to get him some Tylenol. The orders were entered wrong or cancelled or something. And it took hours to fix while Brendan suffered. That continued all day. I had to ask 20 times for each dose to try to help him out.
A few hours later, the ENT came in and decided to try to remove the trach. I thought he sounded terrible and I was just struck with that huge feeling of dread that it was just not right. But the doctor and nurses assured me that it was OK and he needed some time.
By the afternoon, Brendan was still acting like he was in terrible pain and his effort to breathe with the accompanying noise was just too high.
(loud and sad video)
Bill and I decided that it was past time to put the trach back in.
The nurse said that only the ENT could do it and he wasn’t on the hospital campus. After a great length of time, they finally contacted him and he was going to head in (15-20mins). By then, Brendan had deteriorated further in to a scary state. The ENT called the room and gave Bill and I his permission to put the trach back in. Because the stoma was cauterized during the procedure for the second time, the regular sized trach simply would not go in.
Someone in the vicinity of the room signaled for the crises team and we suddenly had 20 people crowding in the room around the bed like it was some kind of circus.
Nobody could locate the trach one sized smaller (which should have been at bedside already) so we had to use two sizes smaller and I was able to get in this tiny baby sized trach. It was not a long term solution, but it made a big difference.
After going through an interrogation from the doctors on the floor about why I was the one putting the trach back in, we finally were able to get some rest. He slept all night with the baby trach and did not have as bad of a night as I was expecting.
This morning, the ENT came in and I helped him upgrade to the correct size (that we had to get out of our car, because nobody could find the right one)
It was immediately better.
Brendan’s mood changed and his numbers improved and we were told that we could go home. He was doing pretty well for post op, even though it was with a trach.
Brendan is looking for the giant storms that were supposed to hit but never did. (good for us with all the driving we did)
As the minutes crept by like years, we waited and waited and waited. Four hours later with not a bit of news, I was feeling like a panic attack and just wanted to get out. I will probably be notated in the system as “that hysterical mom” now, but having a big meltdown managed to get us out the door in 15 minutes. I am embarrassed after the fact, but we are home.
The next steps for Brendan will be to heal and then see how long it takes to get him back to where he was in July. More diagnostics will have to be done, but the ENT was telling me that what is next is a major tracheal reconstruction where they use cartilage from the ribs and graft it to the trachea to stabilize and support it. He doesn’t know how Brendan would do with such a surgery and has to consult his heart surgeon too.
It was just all so sad and frustrating, but seeing Brendan cry so much just breaks me down. Everything was unpredictable and I just can’t stand not knowing what the problem really is.
On a positive note, Brendan was seriously concerned the entire stay – even through the worst times – about his diaper being dry. He had to get up and use the potty and just loved the little urinal bottle they brought him. He didn’t have a single wet diaper even though I told him it was OK if he did.
At home tonight, Brendan is doing pretty well. He sounds hoarse and wheezy but probably will for a few days.
Trevor has had a rough time too, he is a little more emotional than normal. He cried about going to school too.
He still can be silly. (He loves his broccoli!)
A classmate of Trevor’s had a high fever today and was feeling really sick, but they could not reach his family. They had him resting/sleeping on the rug in the classroom. I am going to hope with all of my being that Trevor didn’t catch whatever it is and bring it home. Not now.
This was probably all too much information, but I have always tried to include enough detail for Brendan to understand later what he went through. It also helps me reference it down the road too as I forget the details.
In the end, he is home and we will provide all the care and comfort possible.
We will love him just as much, trach or no trach.
Wow! Talk about stress! We just pray that things will go smoothly for you today, this week, and on until he has to face yet another surgery!
Love you guys.
Bob and Janet
I wish there was something I could do or say to make all of this easier for Brendan, and you, Bill and Trevor. It breaks my heart to hear just how awful it has been.
The first video was so cute and he was in such a good mood. And what good news that he’s doing so well with wanting to stay dry.
Then there’s the second heartbreaking video of his breathing and being so sad and upset. What is wrong with the staff in the hospital that they don’t know what to do, or the hospital to not have the supplies to take care of his needs? It’s wrong that you had to put in a trach, it’s wrong that they didn’t have the right one to use, it’s wrong that you had to be so upset before they considered it a crisis! I am so sorry that Brendan had to go through more trauma, and then not even end up with good results. It’s scary when they can’t tell you what’s really wrong, and there’s nothing that can be done right now to make it better. Don’t you feel the least bit embarrassed for “losing it”. Brendan is fortunate to have you able to do what you do, know what you know, and be there for him in a way that most parents could not be. I know how hard that is for you, and how stressful it is emotionally and physically. You are amazing. I am in awe of how you care for your boys, and I am so proud of you. Besides…a little hysteria can go a long way to get some action!
Poor little sensitive Trevor. He is so attuned to what’s going on and how everyone is feeling. He’s going to make a good husband and daddy! I will hope and pray that the illness at his school doesn’t come home to your house. We have something going around here that’s closing some daycare places because of high fevers.
I’m glad Brendan is home. I know how much care, comfort and love he will receive there. I know it is frustrating, to say the least, that there is no crystal ball to know how it will all go later, but for now, we will all love Brendan, trach or no trach. He’s an amazing little boy who has been through more than anyone should have to endure in a lifetime. He’s a fighter. He’s my Superboy and my favorite Superhero of all.
I would give anything to make this better for your family. I love you all so much.
Gramma xoxoxoxoxoxoxoxoxoxoxoxo
Good morning from the Lake House. Just boggled that in every aspect of Brendan’s care, he seemed to fall between the cracks> So sad that such a sweet child had to endure the lack of attentiveness from the staff and his physicians. Thank goodness for you, Tiffanie!! You and Bill give Brendan everything he needs to gain his health and strength to face the next steps in his journey to wellness! He and Trevor could not have better parents!! I had worked the floors of pediatrics and I just do not understand why the staff did not try harder to meet Brendan’s needs. No excuse that he should be post op and in pain, with no relief. I am so sorry this happened!!! And kudos to you for making a scene on discharge!! Brendan needed that!!! Love you and your family Tiffanie!!! Many prayers, comforting healing hugs and love!!!
Tiffanie, for what you had to do to get Brendan some appropriate attention, THANKYOU !!!
For what the hospital staff did to provoke your actions, shame on them.
Brendan, you are a survivor, a fighter, and most of all a strong soul with a winner’s desire to live and grow. I couldn’t be prouder, grandson, of your courage, and strength.
Some day you will read this and realize just how special your parents were, and are, and how much your whole family cares. You are loved.
You have to make noise to be heard. We all have to remember that if we don’t speak up for our children, there are no guarantees anyone else will.
How sad that a hospital of such “quality” would act like they don’t know what they are doing. How sad that a parent had to put in the ill sized trach and provide the correct sized one, not the qualified medical staff!
You are both being the best parents that Brendan and Trevor need. Keep being the best that you can be in that moment. That’s all you can do.
Tiffanie you could never write too much about either boy for me. I watch every day for pic and smiles. That pic before surgery of you and Brendan is priceless you both look beautiful.
Poor Trevor I am sure he hurts when his brother is going through all this. What a shame they can’t get it together. You had every right to say whatever you did after all that is your baby and he deserves much better treatment than that. How cute that he was worried about an accident through that….Lil B is still on the prayer list at St. Matthews and he continues to be in my daily prayers. Much Love V
We are very happy Brendan is home and recovering. I know there is nothing harder than watching your little boy struggle and suffer. He is so strong and resilient, but still just a little boy. The love and support you give him is amazing – there is no doubt he knows he is loved and supported. Lots of extra (germ free!) hugs all around. Whatever the next steps, Brendan and Trevor are already the greatest little guys, each with a zest for life. You make them happy and safe – that is what matters most.