Before you read any further, be sure to go back and read all previous posts.
November 18th, 1980
Your trach got corked up. You did very well until about 6:45 p.m. Mommy laid you down to change your diapers. Immediately you started to retract very badly. This meant they had to uncork your trach. You had the trach put back in so you could breathe through the night. The doctors would try again tomorrow.
November 19th, 1980
At 7:00 a.m., the doctors corked the trach. Immediately you started to retract. You had to struggle on your own until 7:30 a.m. Then they put the trach back in. At 10:00 a.m., they tried to cork it again. This time you did fairly well until 11:45 a.m. You started getting tried, which made you retract again, so the trach went back in. At 1:30 p.m., they corked you again. You did o.k. until about 3:45 p.m. They put the trach back in. By this point, Mommy was a wreck. I felt so bad for you!
The doctors kept the trach in since all the previous tries failed. They noted that you shouldn’t be having this much difficulty weaning from the trach and breathing on your own. They determined you would need another bronchoscopy.
November 21st, 1980
We hopped in a cab to head back over to the original facility you started at for another bronchoscopy. You were laughing and giggling the whole time. Mommy’s pretty sure you thought you were going home!
This time Mommy got to go up to the surgery waiting room with you. We waited with you until the anesthesiologist came to get you. We gave you a kiss good-bye. You immediately started to cry. I wanted to cry, too. You have no idea what it did to Mommy to see you go through so much and there was nothing Mommy could do to protect you from all of it!
We waited for over four hours for the procedure to get done. Eventually the Gold Cross came out with you on a stretcher. You were crying, but no sound was coming out again. All Mommy could do was to hold your hand. The doctors told me they found that some of the tumor was hidden and they had missed some of it during the last laser surgery. It was such devastating news!
We rode back to the other facility in an ambulance. When we got there, Daddy was anxiously waiting for us. Mommy got to hold you the rest of the day. The doctors wanted to wait until that Monday to try and cork the trach again. This made Mommy nervous since she didn’t want to see you struggle again.
November 24th, 1980
Monday came and when they tried to cork the trach, you retracted. The doctors said we could go home with the trach and suction machine to let me heal. It would be great to get home again!
It took all morning to get your supplies together and to get your suction machine ready. Finally at 1:00 p.m., we left for home! You smiled the whole way home. You were very happy to be home.
For the most part, everything went pretty good, except at night. You would get so dry and had to be suctioned a lot. Mommy hated to suction you because you hated it so much. Every time I would put the suction tube down the trach, it would take your breath away. There was no way to explain to you what was going to happen. Your eyes would fill up with such fear whenever I suctioned you out. It was hard to do, but Mommy needed to do it or you wouldn’t have been able to breathe.
We went to Mommy’s mom’s house – your grandma. We had a fun day and you did well. Things changed when it was time to go home…
Daddy had a load of stuff in his hands, plus your suction machine. He put the machine on the top of the car, while he loaded everything else up. We got you in your car seat and started off. As we were driving away, one of your cousins saw it on top of the car and went in to tell the adults. Your aunt came running out yelling to get our attention, but of course we couldn’t hear them. One of them even jumped in their car and raced after us, blowing their horn and flashing the lights at us. Still, we didn’t see them. After about three miles and three turns, the machine blew off and shattered on the road. That was when we finally noticed. Daddy felt absolutely terrible!!
We stopped and tried to look for the missing parts and even went back to grandma’s to see if maybe one of them was there. No such luck! We had no choice but to head into the hospital on Thanksgiving Day to get a new machine. Daddy felt so bad!
Once at the hospital, we checked into the ER. This began the search for a new machine. The nurses called Respiratory, but they didn’t have one. Then we were told to go try Pharmacy. They didn’t have a suction machine available either. We tried Respiratory again. Finally after two hours of searching, they gave us a different kind of machine. The only drawback was it was very expensive.
We hopped back into the car and headed for home. At this point, you were having a hard time breathing since you needed to get suctioned. Luckily this machine didn’t need to get plugged in, so Mommy suctioned you in the car.
End of November 1980
After a few days, you started to make noises which meant the swelling was going down. You sounded so funny and yet it was such a thrill to hear something from you again.
December 3rd, 1980
We took you to the hospital to get your trach out. As soon as we hit the halls, you started crying. You knew where you were and you didn’t want to go back. This was very hard for Mommy and Daddy! We felt so bad and, again, it was so hard to see you go through all of this. But, we kept reminding ourselves that God had His reasons for everything that was happening. We knew God loved you and He would care for you in His own way.
After you got checked in, the doctor took the trach out. You did fairly well. You started retracting a little bit, but nothing too bad. We were there for another three days, which didn’t seem bad at all, since all the other times you were there for one to two weeks.
December 7th, 1980
We left for home – again… When we left you were retracting a little bit. That night you had problems breathing, but nothing too severe. Since you were home, you were pretty happy.
December 17th, 1980
You caught a cold. This one was a really bad one. I sat up all night with you, rocking you, and holding you up so you could breathe a little easier. What a long night!
December 18th, 1980
I called the doctor as soon as I could. He told me to get lots of humidity on you all day. By that night, you were having a really hard time breathing and we knew we would have to take you in again. We took you to the ER. They admitted you and shortly after you were transferred to the Intensive Care Unit.
December 20th, 1980
You were having a really hard time. Things had taken another turn for the worst. You were retracting quite severely, so they were forced to put you on prednisone again, which we hated to see. You had been off it since they had put your first trach in. We had hoped that would be the last time, but we also wanted to make sure you could breathe and didn’t have to have another trach put in. So, they started you on prednisone.
December 22nd, 1980
We were able to leave for home, just before Christmas. We were told to keep you home and that’s what we did.
December 23rd, 1980
Mommy started to wean you from the prednisone. You did o.k., for the most part.
We celebrated with Daddy’s parents and siblings and a couple of your cousins. You thought it was fun to open your presents!
New Year's Eve 1980
It's been 8 months since they found the tumor... It's been a really hard and long 8 months! We keep trusting God and hoping and praying for healing in 1981.
Psalm 31:24 "Be strong and take heart, all you who hope in the LORD."Psalm 62:5 "Yes, my soul, find rest in God; my hope comes from him."
Psalm 130:5 "I wait for the LORD, my whole being waits, and in his word I put my hope."
Isaiah 40:31 "...but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."