Tuesday, July 13, 2010

Luke's Race to Decanulation

Hello friends. We’re facing a pretty big day on Tuesday, so I wanted to “rally the troops” again for your prayers in addition to updating you on Luke’s solid progress in the last several weeks. In Luke’s 1st year letter (that I just posted), I mentioned that Luke just had a surgery to remove a bunch of granulation tissue that was completely obstructing his airway. After the surgery, our ENT surgeon, Dr. Chung told us that Luke’s tracheo/bronchomalasia (the reason he had the trach placed to begin with) had completely resolved, and there was no reason why Luke shouldn’t be able to begin using his speaking valve (PMV), then his cap, then get decannulated (pull the trach out) all together in a matter of weeks to a few months. We were naturally very excited at this news…and naturally very disappointed when we tried the speaking valve when we got home that night, and Luke completely failed the trial. After a few days of trying and failing, David called the surgeon and told him that Luke hadn’t made any progress on the speaking valve. Dr. Chung thought that the issue might be swelling of his throat from surgery, but also told us that Luke’s airway is smaller than most babies his age (yes, it’s a developing theme). He thought it was possible that if no progress was made within a week, we would talk about airway reconstruction surgery to enlarge Luke’s airway.
We kept trying, and one day we put the PMV on and Luke began breathing through it and out through his nose like he’d been doing it his entire life. He looked at us like “what mom and dad? Why are you staring at me like that?” For the next 30 minutes or so while we drove to Mesquite to meet friends for dinner, I listened to him make baby noises for the first time since the very few cries at his birth. I was the one crying this time. Over the course of the next week or so, we battled with Luke and got him to use the PMV all the time during the day (he still had to be on the vent at night). I say battled because Luke inherited his mother’s stubbornness. Sometimes he would be okay with it, and sometimes he wouldn’t. It took several rounds one day of putting on the PMV, Luke crying, then stopping breathing, desatting, taking off the PMV, letting Luke recover, and trying again. We discovered that distracting him helped quite a bit most of the time, but whenever he would get stressed he would immediately pull at his trach. He’s gotten very adept at pulling off his PMV.
During the process of learning to use the PMV, Luke, David, and I went on Luke’s first trip out of Dallas. We drove the grueling 11½ hours to Albuquerque and back for my sister’s wedding. Luke did outstanding. Our only hang-up was that Albuquerque is about 5,000 feet higher above sea level than Dallas. Luke had to use a bit of oxygen, but had really gotten quite adjusted by the time we went home four days later. We had a fabulous time introducing Luke to all our family and friends that have been praying in New Mexico.
When we got home, we really got Luke using his PMV all the time during the day. After several phone calls and some run-around, we finally got Luke scheduled for a three night stay and sleep study at Our Children’s House at Baylor. Although David and I were dreading it, this was a necessary step to get Luke off the vent completely, even at night. We admitted Luke to OCH on a Monday morning at the end of June. Sunday night was his last night on the vent. On Tuesday night, David stayed with Luke at the hospital, and they went downstairs for Luke’s sleep study. I wasn’t there, and I’m glad I wasn’t. David told me that they had to tape diapers on my poor baby’s hands to keep him from pulling at all the probes and leads they used to measure his sleep. Luke passed his sleep study with no major problems, but we still had to stay a third night (thanks to my mom and dad who stayed with him the third night). While Luke was at OCH, his nutritionist wanted to switch him over from an infant formula to a toddler formula. We wanted to do it while he was in the hospital because of the sodium issues he had back in March. We wanted to ensure his sodium stayed stable. By Tuesday, Luke’s sodium level had been very slowly, but steadily creeping downward. They wanted to keep him one more night so that they could monitor that. By Thursday morning, we took a vent-free baby home in our new SUV (we were able to purchase a bigger vehicle for toting Luke and all his attachments around, thanks to our friends Mark and Janna Hanner). It was a good day. About a week and 6 pokes later, we got Luke’s sodium level back registering within normal limits. OCH was an all around successful stay, and it wasn’t even quite as painful as we were worried it would be.
Once we got Luke home off the vent, we started really working toward capping Luke’s trach. We at first started just trying to use the cap, cold turkey. Luke freaked out every time we tried to cap him. He would take a breath or two, but he would panic, his heart would start to race, and his o2 sats would plummet in a matter of seconds. We struggled this way for several days, and Luke didn’t seem to be making any progress. I prayed that God would give me wisdom on how to make the transition from PMV to cap smoother and easier for all of us. He gave me the idea of taping off Luke’s PMV a little at a time, to make it increasingly difficult to breathe in through the PMV. After a few days of this, the jump from taped PMV to cap was still too big. I got the idea to begin taping gauze over Luke’s PMV and increasing the gauze at intervals. This has gotten us much closer to simulating a cap without actually capping the trach. As I’m writing this today, I’ve got 24 layers of gauze taped over Luke’s PMV, and we’re slowly taping over portions of the gauzed PMV. Right now, he’s got about 1 square millimeter of gauze that isn’t taped over. For some reason, going from that 1 square millimeter of space to completely taping over it is very difficult for Luke, even though I can’t tell much of a difference when I try and breathe through it. Bottom line is that with my modified version of the PMV/cap hybrid, Luke is doing all the breathing in and out of his nose and not using his trach at all. My understanding of why Luke still won’t tolerate the cap and has a tough time tolerating the completely taped and gauzed PMV is due to the pressure that builds up in his lungs when the trach is closed off (like the pressure you feel in your ears when you roll up the windows in your car as you’re traveling on the freeway).
My ultimate hope was to have Luke using his cap like a pro when we walked in to vent clinic and his pulmonologist’s visit on Tuesday. I have the feeling that Dr. Gelfand is quite skeptical that Luke is ready to be capped and then decannulated. I wanted to “show him” that Luke really is ready. Saturday, I set out to work with Luke all day until we accomplished the goal of truly capping his trach. This goal was not met. I went to bed Saturday night and cried, because I was so certain that Luke would be able to do it, and we both ended up being extremely frustrated. Sunday, I pushed hard again, with the same result. Luke continually was pulling off his PMV and throwing it, and it was getting more and more difficult to distract him. David and I talked last night and we decided that I would quit pushing so hard. I’ve come to accept that we won’t walk into Vent Clinic with Luke’s trach capped.
So now, my request for prayers. Our nurses, who have known Dr. Gelfand very well since he was an intern ages ago, have told us that his typical MO is that if he doesn’t have a kid capped by August 1, he won’t decannulate until the following spring. He doesn’t want to take the chance of the child getting sick during cold/flu/RSV season and needing that airway. Could we live with that? Yeah, we could live with it, but I really don’t want to. I really don’t want to do nine more months of suctioning constantly, trach care, trach changes, and hauling 3 huge diaper bags wherever we go, especially not when Luke is so close to capping. If Luke could talk, he would tell you that he’s ready for trach care, suctioning, and trach changes to be over tonight!
I would ask that you all pray for a successful vent clinic tomorrow. Pray that Dr. Gelfand recognizes Luke’s progress and earnestly works with us on decannulating Luke before the fall. Pray that Luke’s airway and lungs are strong enough to do this, that God calms him when we do capping trials, and that we have the wisdom and courage to push him when we need to and back off when he needs a break. Decannulation will be a dream come true for us. It will give us so much more freedom and mobility as a family. We hope that you join us in praying that we can achieve that sooner rather than later. But as always, in whatever way God can best be served by our struggle, we pray that God’s will is done and not ours.
Before I go, I want to tell you about the strides Luke has been making since his last illness and hospitalization in March. Since then, Luke’s sternal precautions (no tummy time, can’t lift him by his arms, etc. due to his sternum being cracked for heart surgery) have been discontinued. He is tolerating tummy time much better than he did before surgery. We have added physical therapy to his schedule twice a week, and he is really responding it. His therapist works with him on sitting, standing, rolling, tummy time, and strength on all fours. He is already sitting up unassisted for as long as he wants to. He is gaining strength, and I know that he’ll be crawling before long.
Before Luke’s sodium crashed in March, he was eating a whole jar of baby food in one sitting, and we were well on our way to having him take all of his nutrition orally and getting rid of the feeding tube. After his sodium crashed, Luke forgot how to swallow food (he has no problem swallowing saliva). We’ve been fighting tooth and nail since then for every swallow of food. This week we have finally started to see some significant progress in this area. We have been working diligently on feeding Luke orally while he’s getting fed through his feeding tube so that he begins to make the association of eating with becoming full. Using my PMV/cap hybrid, Luke’s swallow has become much stronger, and feeding him is a little less of a struggle. We’re beginning to figure out the pattern of give and take that is most effective for Luke to make progress.
Luke is growing so big! He weights about 22-23 lbs. I’m ready for him to start walking so I don’t have to carry him everywhere, he’s so heavy! He sleeps through the night, about 11-12 hours. Since getting off the vent, he uses what’s called a trach collar at night to deliver warm, moist air to him. The combination of trach collar at night and PMV/cap during the day has significantly reduced his secretions, so we’re not suctioning as often. He hasn’t used oxygen at all (except when we visited Albuquerque), since about mid-April. From a cardiology standpoint, he is exceeding Dr. Kao’s expectations. We saw her in June, and she doesn’t need to see Luke again until September. He really is improving every day. He smiles often, and loves his toys and watching his videos. He’s starting to bop up and down when he hears music he likes. He tastes everything. He is experimenting with his new found voice, and most of those experiments come out sounding like growls. Yesterday at church he really started to figure out how to vocalize through his mouth (as opposed to “humming” through his nose). He grins at us every time we walk in the house or we’ve arrived somewhere and open the car door. He amazes me that after everything he’s been through, he always has something to smile about. It makes me appreciate life, my son, and God’s infinite grace.
Thank you all for your prayers, and your constant support and encouragement. We’re still on this long journey. If it weren’t for you, we might have failed long ago. Thank you for lending us your strength and praying on our behalf. We love you.

Rachael, David, and Luke

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