Kalvin Harry Blauert
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Age 3
9/2003
Kalvin Harry Blauert
Born August 31, 2000 to Tony & Stephanie
Kalvin was a full-term baby. He appeared to be on his way to a full and healthy life. But he began having respiratory distress around 7 months of age and gained no weight between his 6 month visit and his 9 month visit.
July 2001 was one of the toughest months we have ever experienced in our lives. Kalvin was admitted to the hospital July 3rd because of breathing difficulty. He was seen by many doctors and went through a series of tests. The doctor who admitted Kal told us he wasn't going to let Kal leave until they discovered the cause of Kal's labored breathing (we had been in and out of the after hours clinic three times in the previous two weeks). Unfortunately, things became worse for Kal instead of better.
Kal had to be resuscitated the evening of July 6th. His airway became plugged during a suctioning procedure. He was moved into the PICU. The next few days were very rocky. Kal crashed more than once and had to be resuscitated. On July 10, he had to be put on a ventilator. He also had an MRI done which showed nothing abnormal, which was very good news, but still left us in the dark about what was going on with him. The next day he had a muscle biopsy done on his left arm.
He was extabated on July 13th, but was unable to make it on his own. So, on July 16th he was intabated again. It was extremely hard on us. He had to be sedated the entire time. He developed two horrible bedsores on the back of his head and one on his ear. A feeding tube fed him through his nose. They fed him milk and oil; the oil was to help bulk him up. Instead it ran right through him and led to an awful diaper rash. He also became very swollen all over, even his little tongue, and didn't even look like Kal. He had fourteen different wires and tubes attached to his little body during this time, which made it difficult to hold him.
He was extabated July 26th, and it was wonderful to see Kalvin's blue eyes again. He was very weak and couldn't even hold up his head. The next 22 hours were too rough on him, so once again he was intabated. This time he was intabated through his nose rather than his mouth. This made the tube more secure so he did not have to be completely sedated. He was given medication to keep him comfortable. We enjoyed having him awake and read lots of books with him and he helped us turn the pages. Best of all we were able to hold him again.
After this last failure to survive without the vent, it was determined that Kalvin needed a trach. A few days before his surgery he gave us a couple of scares, so we were more than ready for him to get trached. His tracheotomy was July 31st; he also had a skin biopsy done. It was discovered from both the muscle and skin biopsy that Kal has
a carnitine deficiency. The lipids in his muscles are not breaking down properly, which means he is not getting energy from the fats he eats, only the sugars. This results in his muscles not developing properly, which is the cause for his labored breathing. The carnitine deficiency is only affecting his skeletal muscles (myopathy). He is taking Carnitor and riboflavin (vitamin B2) to help supplement the deficiency.
In early August, Kal began OT, PT and ST. He had to learn how to hold up his head, move his arms and sit up all over again. We were very excited when he began making noise around his trach. He also learned to drink his PediaSure through a straw. He also learned to eat his baby food by mouth. So we have been able to avoid a G-tube. We celebrated his 1st birthday with lots of friends, family and hospital staff in the PICU, despite the fact he had a collapsed lung. We spent most of September preparing to go home. Tony and I had a lot to learn on how to care for our new and improved baby. We learned how to suction, how to change and clean his trach, how to bag him, how to run the vent and to do circuit changes. There was also lots of paperwork and phone calls to make to get everything coordinated at the right time.
The time came on October 1st to go home! It was very exciting yet nerve-racking. I couldn't wait to finally sleep in my own bed! We had to say goodbye to our PICU friends and had to learn how to adjust being at home with home health care nurses. We have a nurse eight hours during the night with us and a nurse between six and eight hours during the day. We still have the same main night nurse that we had when we came home. Our day nurses come and go more often. We have had several wonderful nurses to help care for Kal. At times it is very draining to have nurses in our home, but we are thankful for their care. Kal continues his OT, PT and ST at the house. He has his regular pediatrician, a cardiologist, a neurologist, a pulmonologist, an ENT, an orthopedics and rehab doc.
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Kal's 1st professional picture with trach
October 2001
In January 2002 we had to go back to the hospital for an outpatient laryngoscopy. Kal was bumped from a 3.5 to 4.0 trach. We tried a trial wean off the vent in February but Kal really struggled, so it was decided it was to soon to try and start. His pressure support was lowered from 12 to 10. In April his vent decided to quit working and of course I was home alone. I had to call 911 and bag him until the paramedics arrived. He came very close to losing consciousness. Fortunately he recovered well enough that we did not have to take him to the hospital. He was really wiped out from the whole episode and it took well over a week to get back all of his strength. We found out that there had been a recall put out on his vent do to turbines going out. They told us a little late!
In July Kal had some serial casting done on both legs to help stretch out his heel cords. Afterwards he was fitted for AFO's. In October we dropped his pressure support from 10 to 6 and began taking Kal off of his vent for short periods of time. Overall 2002 was a very good year for Kal. He learned to talk (no more ST) and started walking with assistance. His pressure support also dropped from 6 to 4 in December.
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Kal age 2
September 2002
In January 2003 Kal had his annual laryngoscopy. He stayed with his 4.0 trach, but had some granulation tissue removed. We received good news in March that Kal's heart is strong and healthy and that we don’t have to go back for two years - cross one appointment off the list! We also received difficult news from the rehab doctor. She believed Kal would always need some assistance in getting around. He had not been able to wiggle his toes or move any muscles in both legs below his knees since he after his admittance into the hospital. They thought it was a combination of the carnitine deficiency and nerve damage done while in the hospital. She suggested getting him a wheelchair so that he could learn how to wheel around and there would be something to hold his vent. We decided instead of moving Kal into a wheelchair to get him a walker to use in conjunction with his leg braces and we would just follow him around with the vent. He received his walker in July and he took to it quickly. Kal had also been spending more time off of his vent, which made the walker very fun for him. In August he would be walking around with his walker and then would take steps without it and would say, "Oh, I forgot my walker". We decided to put the walker out of sight and he kept on going with only the aid of his leg braces. He can't get up on his own if he falls down, he has to crawl over to something to pull himself up, but PT is working hard with him. But our boy is walking on his own and did so right before his 3rd birthday!!
Kal had also worked his way up to spending between 4-6 hours off of his vent throughout the day. It was so fun carrying him into Target to go shopping without his vent! Unfortunately, in September Kal had to spend a week back in the PICU due to pneumonia. It was a set back, he was unable to spend much time at all off of his vent the rest of the fall and well into the winter.
January 2004 we stayed cooped up in the house due the flu virus that was circulating through CO. We ended up getting it
regardless, a couple of times over, plus colds and tracheitis. Thankfully, we were able to avoid being admitted into the hospital. We were all more than ready for Spring to arrive and anxious to be able to try and start getting Kal off the vent again. He had his laryngoscopy in March to try and avoid all the bugs floating around in the hospital. He still kept his 4.0 trach, but some tracheomalacia was noted. One Sunday morning Tony asked him to wiggle his
toes (dad the ultimate optimist) and low and behold his toes on his left foot moved. Needless to say, we were all ecstatic. He is starting to show movement in his right toes and ankle. The neurologist started him on Mestinon to help the nerves receive the messages at a slower rate so they can respond. Kal has worked back up to spending 4-6 hours off of his vent and is enjoying being outdoors. We a really hoping to wean him off of his vent during his "awake hours" by the end of summer (which would be 6 hours in am and 4 hours in pm).
We never thought in all our lives we would have a child that is trached and living on a vent. It has its downs, obviously, but it also has its ups. We couldn't imagine life without Kalvin. He is such a joy to us and we believe to
others too. He is so determined in everything he does that he is an inspiration to me. I am truly blessed to be his mom. Tony and I are also blessed by the tremendous support we have received from our families, friends and our church. There are no words to describe what they mean to us. We
wouldn't wish this to happen to anyone's child, but if it does we pray they experience the kind of support we received and continue to receive - it is a blessing. We also couldn't have found any kind of hope or peace if wasn't for our faith in Jesus. There were times I questioned and didn't have strength, but He was sufficient.
The best advise we received was from one of the PICU nurses. She told us, "Treat him like a normal kid, take him wherever you planned on taking him before the vent, just take the vent along with you!" And we have. Kal has traveled to Kansas several times to visit family. He also has made a trip to Minnesota and is getting ready to go again in early June. He goes shopping with us, out to eat (one of his favorite things in the world), to the park and to church. He has been attending Children's Worship all by himself this year. It is wonderful to see him grow in all aspects. We keep hoping and praying that someday he will be vent and trach free, but in the meantime we are thankful for them and the life they have allowed him to have.
Thank you for creating this site and for maintaining it. I have been enjoying it, it really does help to know you are not alone. Kal has also enjoyed looking at the pictures of the other kids with trachs. He says, "Look, they have a trach like me!" I'll never forget the first time he saw Christopher Reeves on TV. He kept pointing to the TV and then to his trach. I hope I am able to connect now with some other parents in the area so that he can play with other trached kids.
