You have probably seen little FaceBook status posts, but I wanted to write a note about what’s been going on with Luke in the last few weeks.
At the beginning of May, we visited Luke’s pulmonologist, Dr. Gelfand. During this visit, we discussed with the doctor plans for Luke’s progression. The doctor discontinued three of Luke’s medications (two narcotics and one antibiotic which was causing major diaper rash), spread out Luke’s breathing treatments from every four hours to every six hours, and told us to drop Luke’s 4 am feeding. All of this makes caring for Luke quite a bit easier. We also discussed getting Luke off the ventilator completely. Since Luke’s last stay in the hospital, we have weaned him back down to only being on the vent for 8 hours at night. To get Luke off the vent, we will have to admit Luke to Our Children’s House at Baylor for a three night study. For those three nights, Luke will attempt to sleep without a ventilator while the professionals keep his breathing effort, blood gas, etc. monitored. The hope is at the end of the three nights, we will bring Luke home without the need for a vent at night. We will still have to keep the vent at the house for awhile, just in case, but he won’t use it. I’m planning to put a real toy box in that space. We also mentioned to Dr. Gelfand our concern that Luke hasn’t been able to use his Passy-Muir (or speaking) valve (Passy for short).
Short anatomy lesson: Normally, a person takes in air through his nose/mouth, the air travels through the trachea, into the bronchial tubes to inflate the lungs. Inhaling creates negative pressure in the airway. When Luke breathes in the same way, the negative pressure is too much so that his “floppy” trachea and bronchial tubes collapse (called tracheal and bronchial malasia). In the past, Luke’s ventilator has blown air into his airway, using positive pressure to keep his airway open. We were told back in July that Luke’s airways would eventually mature and harden, outgrowing the need for a ventilator and a trach. It’s a little confusing how Luke can outgrow the need for a ventilator, but still need a trach. Think about how relatively tiny your nostrils are. Breathing through your nostrils creates much more negative pressure than breathing through a tracheostomy tube (trach) does. Much the same as if you tried to breathe through a drinking straw versus breathing through a PVC pipe.
A trach is inserted into a person’s throat (trachea) below the vocal chords. In order for a person’s vocal chords to work and make sounds (talking, crying, etc.), air must travel over them. With Luke’s trach, air goes in and out of his body through a hole below the vocal chords, eliminating the possibility for air to travel over them, thus disallowing him to vocalize. A passy is a small valve that you place over the end of the trach. It allows Luke to breathe in through his trach, but air only goes one way; it can’t get out through his trach. This forces Luke to pass air through his trachea, around his trach, over the vocal chords and through his nose/mouth. Since he then passes air over his vocal chords, he can vocalize – babble, grunt, cry— audibly. Our concern has been that we have been trying to put the Passy on, but Luke does not expel air through his nose and mouth like he should. He can’t exhale. He struggles, and cries, and gets mad, but no exhaling, and no vocalizing. A few times he was in such distress that he blew the Passy valve off the end of his trach so that he could exhale (not an easy thing to do). Dr. Gelfand said that it was likely that Luke had built up tissue (called granulation tissue) around his trach in rejection of a foreign object (not uncommon), and that tissue was likely narrowing his airway. The only way to know for sure is to have our ENT (Ear, Nose, and Throat doctor), Dr. Chung, look with a scope.
Last Friday, we consulted with Dr. Chung. He couldn’t do a scope in his office, so we scheduled the procedure for Wednesday the 19th. Dr. Chung told us that the most likely reason Luke hasn’t been able to pass air around his trach is that indeed there is probably tissue blocking his airway. If that was the case, Luke would already be under anesthesia for the scope, so Dr. Chung would laser out the tissue right then. So Wednesday we took Luke to Medical City at 6:30 in the morning. The plan was to have Luke’s procedure done (the nurse told me the OR was slated for 45 minutes for Luke’s procedure), take him to recovery, then back up to the pediatric floor (not the PICU) for a few hours, and then have him discharged that same day. We did not tell Luke the plan for the day, because he has a tendency to change the plan, especially when it involves going home from the hospital. We packed his ventilator, some toys, and other things, just in case we had to do an overnight stay.
Things went surprisingly smoothly. We got updates from the OR throughout the procedure. The anesthesiologist had trouble getting an IV in Luke, but that didn’t surprise us at all. He really is a tough stick. So 45 minutes after he went back to the OR, the procedure got underway. Two and a half hours after Luke went back to the OR, Dr. Chung came out to talk to us. He told us that he had indeed found a large mass of granulation tissue that was completely obstructing Luke’s airway. Dr. Chung could not use a laser or a scalpel to remove it, so he ended up having to pull away chunks at a time until it was cleared. He told us that Luke should now have no problem using his Passy valve and breathing around his trach. We told Dr. Chung about the plans to get Luke off the ventilator. Dr. Chung said that if Luke had no more use for a ventilator, he shouldn’t need his trach either. There should be no reason why we shouldn’t be able to cap his trach (forcing Luke not to use the trach at all and breathe both in and out through his nose/mouth), and then decanulate (remove the trach forever) in a matter of weeks. Despite ourselves, our hopes skyrocketed. I think both of our thoughts raced to a place where we no longer have to deal with trach care, suctioning, nursing, and carrying at least 3 bags wherever we take Luke. Neither one of us expected that decanulation could come so soon.
Dr. Chung took us back to see Luke immediately. He was awake, but extremely fussy, and we worried about how much his o2 sats were fluctuating. We were able to take Luke off of oxygen about a month ago, and he has been satting high 70%s to low-mid 80%s even without oxygen. When we got back to him after his surgery, his sats were fluctuating between low 60%s to mid 70%s. After about an hour in the recovery room where we got to start feeding Luke slowly, we went up to the pediatric floor. As the day wore on, we continued to worry about his lower saturations. Eventually we asked for Luke to get a blood test (BMP) to check his sodium and other levels, mainly as confirmation that we could take him home. When the nurse called the doctor to ask for the order, he decided he would just admit Luke for the night because of his lower saturations. We then told the nurse that we weren’t sure if we needed to admit him. Dr. Stromberg from the PICU came down about an hour later and examined him. Luke was then beginning to sat in the mid-high 70%s, hitting 80%. Dr. Stromberg said that as long as Luke was returning to his baseline sats, he was okay to go home. We left the hospital about 5:00 the same day Luke had his surgery. That in itself is amazing. We thank all of you who prayed for us and for Luke on Wednesday that he wouldn’t do any “funny business.” He didn’t, and we are thrilled that something finally went as planned for once in Luke’s life.
So why the need for prayer beyond the usual? That night curiosity got the better of us, and we tried the Passy valve. After having our hopes up so high, they crashed down. Luke failed his Passy trial. Moved zero air around his trach, turned blue, exactly the same as he did before the surgery. We had no idea why he failed, but we decided to try again the next day before we got too concerned. Thursday’s trial brought the same failure. I had been so excited with the thought of moving so quickly towards a normal life with Luke, and discouragement overwhelmed me.
On Friday David called Dr. Chung to tell him about the trial failures. Dr. Chung told David that the problem obviously isn’t more granulation tissue grown up, because he removed it all, and it seemed to him during the scope that Luke’s malasia (floppy airways) really has pretty much resolved itself. He said that the thinnest part of a person’s airway is a cartilage ring. Luke’s is particularly small. It could be that swelling from the surgery has caused Luke’s airway to close in that area, and the swelling needs to go down before he can use his Passy. Or, it could be that this section of Luke’s airway is just too small to pass air through, period. In that case, there is an ENT surgical group out of UT Southwestern that specializes in airway reconstruction surgery for pediatric patients. The surgeon would perform a fairly extensive operation in which he would cut the cartilage ring and then enlarge it, thus enlarging Luke’s airway. Or, we may just have to wait for Luke’s airway to mature and open.
So we are asking for your prayers that God gives us option #1. We are desperately hoping and praying that Luke’s airway is swollen from surgery, and once the swelling goes down, he will be able to use his speaking valve with ease, and subsequently cap his trach and then decanulate him as the ENT predicted. We long to hear Luke’s voice babbling, and yes, even crying. We long for the day we can de-clutter our lives filled with nursing, trach equipment, suction, and trach care. We believe God can answer this prayer for Luke’s airway to heal and work properly. Indeed, he has even started to answer this prayer. Today, before I got a chance to write this, we heard some of Luke’s first vocalizations. Today, while we haven’t done a Passy trial, he has been able to force big coughs around his trach. His big coughs sound like little squeaks as the air travels over his vocal chords. Each time this has happened, David and I look at each other with doubtful hope. “Did you hear that?” we ask each other. We want it to be true, but we don’t want to get our hopes so high and then have them come crashing down again. It’s easier just to be cautiously optimistic.
Pray with us that over the next few days, if Luke’s airway is indeed swollen, that the swelling continues to go down. Pray that God opens up Luke’s airway enough for normal function. Pray that God does something awesome, and that our family is released from the bondage of this trach in the near future. You and I have sat back and watched as God did much mightier deeds than this in Luke’s life.
Thank you all for your prayers and support. You all hold the three of us up and give us more strength than you realize.
Blessings,
Rachael, David, and Luke
At the beginning of May, we visited Luke’s pulmonologist, Dr. Gelfand. During this visit, we discussed with the doctor plans for Luke’s progression. The doctor discontinued three of Luke’s medications (two narcotics and one antibiotic which was causing major diaper rash), spread out Luke’s breathing treatments from every four hours to every six hours, and told us to drop Luke’s 4 am feeding. All of this makes caring for Luke quite a bit easier. We also discussed getting Luke off the ventilator completely. Since Luke’s last stay in the hospital, we have weaned him back down to only being on the vent for 8 hours at night. To get Luke off the vent, we will have to admit Luke to Our Children’s House at Baylor for a three night study. For those three nights, Luke will attempt to sleep without a ventilator while the professionals keep his breathing effort, blood gas, etc. monitored. The hope is at the end of the three nights, we will bring Luke home without the need for a vent at night. We will still have to keep the vent at the house for awhile, just in case, but he won’t use it. I’m planning to put a real toy box in that space. We also mentioned to Dr. Gelfand our concern that Luke hasn’t been able to use his Passy-Muir (or speaking) valve (Passy for short).
Short anatomy lesson: Normally, a person takes in air through his nose/mouth, the air travels through the trachea, into the bronchial tubes to inflate the lungs. Inhaling creates negative pressure in the airway. When Luke breathes in the same way, the negative pressure is too much so that his “floppy” trachea and bronchial tubes collapse (called tracheal and bronchial malasia). In the past, Luke’s ventilator has blown air into his airway, using positive pressure to keep his airway open. We were told back in July that Luke’s airways would eventually mature and harden, outgrowing the need for a ventilator and a trach. It’s a little confusing how Luke can outgrow the need for a ventilator, but still need a trach. Think about how relatively tiny your nostrils are. Breathing through your nostrils creates much more negative pressure than breathing through a tracheostomy tube (trach) does. Much the same as if you tried to breathe through a drinking straw versus breathing through a PVC pipe.
A trach is inserted into a person’s throat (trachea) below the vocal chords. In order for a person’s vocal chords to work and make sounds (talking, crying, etc.), air must travel over them. With Luke’s trach, air goes in and out of his body through a hole below the vocal chords, eliminating the possibility for air to travel over them, thus disallowing him to vocalize. A passy is a small valve that you place over the end of the trach. It allows Luke to breathe in through his trach, but air only goes one way; it can’t get out through his trach. This forces Luke to pass air through his trachea, around his trach, over the vocal chords and through his nose/mouth. Since he then passes air over his vocal chords, he can vocalize – babble, grunt, cry— audibly. Our concern has been that we have been trying to put the Passy on, but Luke does not expel air through his nose and mouth like he should. He can’t exhale. He struggles, and cries, and gets mad, but no exhaling, and no vocalizing. A few times he was in such distress that he blew the Passy valve off the end of his trach so that he could exhale (not an easy thing to do). Dr. Gelfand said that it was likely that Luke had built up tissue (called granulation tissue) around his trach in rejection of a foreign object (not uncommon), and that tissue was likely narrowing his airway. The only way to know for sure is to have our ENT (Ear, Nose, and Throat doctor), Dr. Chung, look with a scope.
Last Friday, we consulted with Dr. Chung. He couldn’t do a scope in his office, so we scheduled the procedure for Wednesday the 19th. Dr. Chung told us that the most likely reason Luke hasn’t been able to pass air around his trach is that indeed there is probably tissue blocking his airway. If that was the case, Luke would already be under anesthesia for the scope, so Dr. Chung would laser out the tissue right then. So Wednesday we took Luke to Medical City at 6:30 in the morning. The plan was to have Luke’s procedure done (the nurse told me the OR was slated for 45 minutes for Luke’s procedure), take him to recovery, then back up to the pediatric floor (not the PICU) for a few hours, and then have him discharged that same day. We did not tell Luke the plan for the day, because he has a tendency to change the plan, especially when it involves going home from the hospital. We packed his ventilator, some toys, and other things, just in case we had to do an overnight stay.
Things went surprisingly smoothly. We got updates from the OR throughout the procedure. The anesthesiologist had trouble getting an IV in Luke, but that didn’t surprise us at all. He really is a tough stick. So 45 minutes after he went back to the OR, the procedure got underway. Two and a half hours after Luke went back to the OR, Dr. Chung came out to talk to us. He told us that he had indeed found a large mass of granulation tissue that was completely obstructing Luke’s airway. Dr. Chung could not use a laser or a scalpel to remove it, so he ended up having to pull away chunks at a time until it was cleared. He told us that Luke should now have no problem using his Passy valve and breathing around his trach. We told Dr. Chung about the plans to get Luke off the ventilator. Dr. Chung said that if Luke had no more use for a ventilator, he shouldn’t need his trach either. There should be no reason why we shouldn’t be able to cap his trach (forcing Luke not to use the trach at all and breathe both in and out through his nose/mouth), and then decanulate (remove the trach forever) in a matter of weeks. Despite ourselves, our hopes skyrocketed. I think both of our thoughts raced to a place where we no longer have to deal with trach care, suctioning, nursing, and carrying at least 3 bags wherever we take Luke. Neither one of us expected that decanulation could come so soon.
Dr. Chung took us back to see Luke immediately. He was awake, but extremely fussy, and we worried about how much his o2 sats were fluctuating. We were able to take Luke off of oxygen about a month ago, and he has been satting high 70%s to low-mid 80%s even without oxygen. When we got back to him after his surgery, his sats were fluctuating between low 60%s to mid 70%s. After about an hour in the recovery room where we got to start feeding Luke slowly, we went up to the pediatric floor. As the day wore on, we continued to worry about his lower saturations. Eventually we asked for Luke to get a blood test (BMP) to check his sodium and other levels, mainly as confirmation that we could take him home. When the nurse called the doctor to ask for the order, he decided he would just admit Luke for the night because of his lower saturations. We then told the nurse that we weren’t sure if we needed to admit him. Dr. Stromberg from the PICU came down about an hour later and examined him. Luke was then beginning to sat in the mid-high 70%s, hitting 80%. Dr. Stromberg said that as long as Luke was returning to his baseline sats, he was okay to go home. We left the hospital about 5:00 the same day Luke had his surgery. That in itself is amazing. We thank all of you who prayed for us and for Luke on Wednesday that he wouldn’t do any “funny business.” He didn’t, and we are thrilled that something finally went as planned for once in Luke’s life.
So why the need for prayer beyond the usual? That night curiosity got the better of us, and we tried the Passy valve. After having our hopes up so high, they crashed down. Luke failed his Passy trial. Moved zero air around his trach, turned blue, exactly the same as he did before the surgery. We had no idea why he failed, but we decided to try again the next day before we got too concerned. Thursday’s trial brought the same failure. I had been so excited with the thought of moving so quickly towards a normal life with Luke, and discouragement overwhelmed me.
On Friday David called Dr. Chung to tell him about the trial failures. Dr. Chung told David that the problem obviously isn’t more granulation tissue grown up, because he removed it all, and it seemed to him during the scope that Luke’s malasia (floppy airways) really has pretty much resolved itself. He said that the thinnest part of a person’s airway is a cartilage ring. Luke’s is particularly small. It could be that swelling from the surgery has caused Luke’s airway to close in that area, and the swelling needs to go down before he can use his Passy. Or, it could be that this section of Luke’s airway is just too small to pass air through, period. In that case, there is an ENT surgical group out of UT Southwestern that specializes in airway reconstruction surgery for pediatric patients. The surgeon would perform a fairly extensive operation in which he would cut the cartilage ring and then enlarge it, thus enlarging Luke’s airway. Or, we may just have to wait for Luke’s airway to mature and open.
So we are asking for your prayers that God gives us option #1. We are desperately hoping and praying that Luke’s airway is swollen from surgery, and once the swelling goes down, he will be able to use his speaking valve with ease, and subsequently cap his trach and then decanulate him as the ENT predicted. We long to hear Luke’s voice babbling, and yes, even crying. We long for the day we can de-clutter our lives filled with nursing, trach equipment, suction, and trach care. We believe God can answer this prayer for Luke’s airway to heal and work properly. Indeed, he has even started to answer this prayer. Today, before I got a chance to write this, we heard some of Luke’s first vocalizations. Today, while we haven’t done a Passy trial, he has been able to force big coughs around his trach. His big coughs sound like little squeaks as the air travels over his vocal chords. Each time this has happened, David and I look at each other with doubtful hope. “Did you hear that?” we ask each other. We want it to be true, but we don’t want to get our hopes so high and then have them come crashing down again. It’s easier just to be cautiously optimistic.
Pray with us that over the next few days, if Luke’s airway is indeed swollen, that the swelling continues to go down. Pray that God opens up Luke’s airway enough for normal function. Pray that God does something awesome, and that our family is released from the bondage of this trach in the near future. You and I have sat back and watched as God did much mightier deeds than this in Luke’s life.
Thank you all for your prayers and support. You all hold the three of us up and give us more strength than you realize.
Blessings,
Rachael, David, and Luke
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