Tess has been fed through a tube that goes directly into her belly since she was four years old. Up until that point she was given formula in a bottle as a baby and then as a toddler we put her formula into a cup and fed her baby food. She never was able to handle anything more than the number two baby foods and yogurt or she would choke. And bonus, she regurgitated everything she ate up into her nostrils and it would literally flow out of them as she was eating. Sort of like the old soda out of the nose trick only this was definitely not funny.
She was also having aspiration pneumonia because she was swallowing pretty much anything she ate into her lungs. It was a living nightmare but we kept doing it because we did not know any better. I think back on that time now and shudder. We could have so easily lost her to those pneumonia's. I've said it before and I'll say it again, Denial...it ain't just a river in Egypt.
But luckily for her, and us, Tessie has many angels in her life that watch over her...both figuratively and literally.
One of those angels is Kellie. She was Tessie's speech therapist from the age of about one and a half to five. Through meeting with her once a week every week during those four years, Kellie and I became very close. She let me cross the professional boundary lines with her and now she is one of my dearest friends. I don't know what it was with Kellie but I felt a connection to her right off the bat that went beyond the 'therapist' title and she felt the same way about me. When our girls, Ellie and Hannah, became bosom buddies, that sealed the deal. Call it fate or destiny or whatever you want but Kellie was one of those people that was meant to come into my life. It was no accident that she became Tessie's speech therapist and I am thankful for that every single day.
Anyway, my point is, Kellie and her family came out to the island to visit us a few months before Tessie got her Gtube surgery and she freaked out when she saw Tessie eat. In her words, "I felt sick. I couldn't believe that nobody had told you after seeing her eat, that she needed as Gtube ASAP. I knew in my gut that if you didn't get that kid feeding through a tube soon she would die from pneumonia." Of course Kellie didn't come out and say that then. She only told me this later. After Tessie had the surgery. At any rate, unbeknownst to me, Kellie went home and called Tessie's pediatrician and talked to him about it. Poor Kellie, she really went to bat for us but got nowhere with Tessie's pediatrician and I honestly believe it was because he didn't want to believe it himself. We had gotten quite close to him through all of the many trials and tribulations of Tessie's health and I think he had a little denial going on himself as to how bad things were getting with The Toots, or "My girlfriend" as he calls her. At any rate, Kellie very gently began to talk to me about the idea of a gtube. Just little hints here and there so that I would not be completely blown away when it finally did happen because she knew that I was in a lot of denial about it.
The gtube train rolled out of the station when Tessie had a surgery date set to have ear tube replaced and her adnoids removed in the hopes that the 'food out the nose trick' would stop. When we got to Maine Medical Center Tessie was recovering from yet another aspiration pneumonia and the ENT doc was pissed because they weren't sure if they dared give her anesthesia while her breathing was already compromised by the pneumonia. He simply could not believe that she didn't already have a gtube. In the end, after taking all the precautions they could, they went ahead with the ear tube/adnoid surgery. Then the doctor made a special visit into Tessie's room to talk to us.
He sat on the edge of her bed and proceeded to bombard us with appointments that he had set up for her to go ahead and get a gtube. He had scheduled a visit from pediatric pulmonology, pediatric surgery, and pediatric GI. They would all coordinate
and make a surgery date for Tess and he had put it under an emergency basis so that it would happen pretty quickly. Then he left and I jumped up and told Charlie that I had to get out of there for a minute. I grabbed the cell phone and went to the family lounge and called Auntie and bawled my eyed out while telling her that I would no longer be able to feed Tessie by mouth.
I was heartbroken. Tessie's cure-all for anything that was wrong was her sippy cup. How could I take that away from her? It was cruel to do that to her and I would be the one doing it! She had so much that she could not do and this was yet another thing that would now be added to the list. Besides, I loved snuggling with her while she drank her formula. I guess I was mourning for what I would lose as well.
But here is where doing what is best for your child verses what is best for you came into play and I knew in my heart that the doctors were right. So we visited with all the docs and the surgery date was set for three weeks later. The GI doctor asked me if I wanted her kept in the hospital unit the surgery? I asked why would I? He replied, "I am required by law to tell you that by taking her home you are risking her life. She may get another aspiration pneumonia and die. If she were kept in the hospital, we would insert a nasal gtube into her and feed her through that until the surgery." I was at a loss. How do you respond to that? So I posed the question that I always ask doctors now when deciding life and death issues, "If she were your daughter, what would you do?". That always makes them stop and think. And I really respect that doctor's honesty that day when he said, "Take her home. I feel like you are doing a really good job keeping her relatively healthy and she is more likely to catch something in this hospital that would make her sick while waiting for the surgery."
We took her home.
After three more consult appointments over the next two weeks it was decided that she should also get a procedure done while she was already under anesthesia called a Nissen Fundoplication. This would stop her from refluxing food from her belly up her throat and eliminate the chance of her swallowing that back into her lungs. It also would mean that she would no longer be able to vomit and would retch instead when she got air trapped in her belly from gas. I was very hesitant but agreed.
We brought her to MaineMedical for surgery and her surgeon came out and told us the surgery could take as long as five and a half hours. What??!! No one had warned me of that. He also said it could take as little as an hour and a half. It all depended on whether or not they could do the Nissen laparoscopically or would have to really cut into her stomach and they wouldn't know until they got into the OR.
They wheeled her away and Charlie and I were left to wait. Constantly checking the board in the waiting room that tells when a patient has gone in for surgery and when they are out and in recovery.
It was an exquisitely long wait even though in reality it was only just under two hours.
We went up to Tessie's room which, thankfully, was private and were told that she would probably be released in two days. The surgeon did not want her new gtube touched at all for at least twenty-four hours which meant we were still feeding her by mouth until the following day. I was happy about that because I so dreaded the time when they took away her sippy cup for good.
Tessie was doing well so Charlie went to his mom's for the night and I stayed in the room with Tessie. Around three in the morning I heard her whimper and am ashamed to admit that I had the gall to be annoyed. I was just so tired! I lay on my little hospital 'bed' and hoped she would go back to sleep. She whimpered again and I dragged myself up to see what could be wrong.
The blanket over by her belly was soaked through with blood. I quickly called the nurse's station and told them to come now and when the nurse arrived she took a look, told me she'd be right back, and ran out of the room. She returned with two other nurses and told me that Xray was on the way up to Xray Tessie's belly. I asked if Tessie was okay and she said everything was fine. I looked at her and told her that I did not want the pat answer that she was trained to give scared parents, I wanted the truth. I asked her if I needed to call my hubby to get him on his way to the hospital. She said not yet but they would know more as soon as Xray came. She also said she had paged out the pediatric surgeon and the OR and told them to prep a room just in case.
Xray came and the pediatric surgeon and thankfully, Tessie just had a lot of gas trapped in her belly and it had distended it much like a balloon about to pop. The belly distention had put so much pressure on her belly that the fresh gtube site was bleeding. All they had to do was to vent the gtube and let out the air.
We got Tessie cleaned up and her bed changed and while we were doing that I asked the nurse to tell me honestly how scared she was when she first came in. She looked me dead in the eye and said, "When I ran out of here and called downstairs, I yelled into the phone for them to get their asses up here right now!" We laughed for a minute and I said, "Well, you're very good at hiding your panic. You're sort of like the stewardess in a plane that is nose diving out of control towards the ground and you keep telling the passengers that everything is fine." "Yep", she said. "Pretty much."
Everyday the pediatric surgeon would come in and tell us not today. As in, I cannot release her today. She had to hit a very specific calorie intake and was not managing it due to slow stomach motility. Until that goal was met for at least twenty-four hours, she would remain in the hospital.
It was awful. Remember how, in previous posts I've said Charlie is like a hyper active little boy trapped in an eight by twelve cell and I am his only toy? Yeah, try it for eight days....that's right. Eight days we had to stay in that hospital while Tessie recovered from the surgery. Even the doctor was feeling bad for us. He would make rounds and come in at the end of the day, slowly enter the room and sort of shake his head and Charlie and I would slouch back in our chairs in defeat. I though I would kill Charlie by the end of it. I really did.
On day eight the doctor came in and before he could say anything I jumped up from my chair and said, "If you don't release us today, by the time you do we will be leaving this hospital and driving straight to a divorce court!" I was only half joking. The doctor laughed and said, "You're free. I'll go fill out the release forms now."
It took me a while to fully accept the gtube and it took my hubby a bit longer. Naturally The Toots accepted it right away without a single tear shed...except from me.
Imagine if everybody accepted their lot in life as gracefully and joyfully as The Toots does.