Saturday, July 31, 2010


Just installed Luke's convertable car seat. He was really too big for the carrier a while ago, but I wanted to make sure he could sit in a restaurant high chair and sit in a shopping cart before I switched over. End of an era. My question is, is Luke gonna hate me since I took away the singing frog that attached to the bar on the carrier?


It's 10:00am. Luke tolerated his PMV before he woke up this morning. He's completely taped off, although this tape is more porous than what we were using, so it's taking more layers for equal resistance. I just added another layer, and he didn't even blink. He's rolling on the floor talking. Looks like another good day in store at the Chisholm household. Capped by the end of the weekend?

Thursday, July 22, 2010

Slow Progress

Hello Friends and Family

It’s been a little over a week since my last post, and our visit to Vent Clinic and Luke’s pulmonologist. I wanted to give a brief (as possible) update on how that went and where we’re headed now.
First of all, so many prayers were answered when we got to see Dr. Gelfand’s partner, Dr. Copenhaver. We have nothing against Dr. Gelfand, but have felt in the past that Dr. Copenhaver has a more optimistic and progressive style of practicing medicine. I was thrilled when I heard he was in vent clinic that day!
Luke had to get stuck several times to get enough blood for testing, but all his numbers came back just fine. His sodium was on the low end of normal 131 where the range is 130-140. I was okay with this number, because I had been a little worried that maybe the upped amount of sodium we give him each day was too much. Not the case. Everything else went smoothly, and we got to see Dr. Copenhaver.
He was pretty impressed with Luke’s progress on the modified PMV/cap. He kindly described the path that we’re on and the timing of Luke’s decanulation. He let us know that the August 1st deadline is not hard and fast. Summer lasts a long time in Texas, so as long as cold weather doesn’t come on freakishly fast, and we don’t have an early outbreak of RSV or flu season, or a wacky outbreak of something like Swine Flu, we should have all of August and into September to reach our goal. Nothing like adding on 4-6 weeks to our deadline to relieve some of the pressure. We need to go at Luke’s pace to work towards capping him completely. Once he is capped for a week straight, then we can call Our Children’s House and get Luke set up for a sleep study. I don’t know how long he’ll have to stay this time, but on the sleep study night, they will do half the night with him breathing through his trach, and half the night capped. In the morning, they will look over the results. If his sleep with the cap is comparable to his sleep without the cap, then they will move to the decision of decanulation. Everybody important will weigh in, and if everybody agrees, Luke can be decanulated right then and there.
So a week after vent clinic, where are we now? Unfortunately, we’ve been moving slower than either David or I would like, I think. It seems like Luke takes two steps forward, and then one step (or two or three steps) back. Luke has had some trouble with what seems to be allergies, which obviously makes it harder to breathe. Today he spent the entire morning just wearing the PMV with no gauze or tape. This afternoon, we’re slowly adding gauze and tape, and increasing the difficulty. We’ve had a few days where Luke has spent most of the day with the PMV completely taped. He still won’t tolerate the actual cap for very long, but the fact that he is tolerating it for even a few breaths is progress.
Meanwhile, we’re working Luke’s lungs out. He’s working pretty hard to breathe at times, but it’s like one of us increasing our cardio workouts. He’s getting stronger and stronger.
David and I sure hope to have Luke fully capped within the next few weeks. We obviously hope to be making the call to Our Children’s House by mid-August, but again, we’re forced to go at Luke’s pace. It’s so frustrating. I wish I could just explain to Luke and have him understand that if he works really hard at breathing and using his cap, we can stop trach care and suctioning forever. But he’s a baby, and so I’m forced to just plod along, taking two steps forward and one (or two or three) steps back.
Meanwhile, I think the allergies causing difficulty breathing, is making Luke scared of eating. He has thrown fits the last three times I’ve tried to feed him (speech therapist present or not) and has only swallowed successfully a handful of times. This is also frustrating.
Please continue to pray for us. Specifically, that we can make this deadline of having him capped and decanulated by the end of the summer. Pray that Luke’s breathing is eased, and that his anxiety is calmed when we use the PMV/cap. Pray for David and I that we can have stamina to finish this race, serenity to go at Luke’s pace and not to push him beyond what he can reasonably manage, and wisdom to push Luke when he needs it and back off when he needs a break.
Thanks for your continued prayers and words of encouragement.

Rachael, David, and Luke

Tuesday, July 13, 2010

Luke's Toddlerhood

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

Sunday, July 11, 2010


Luke's speaking valve is completely taped over. He wouldn't tollerate the cap. I tried it, and I can tell a very slight difference between the taped valve and the actual cap. There is some "give" to the taped valve whereas there is absolutely none with the cap. So now what? Add more pieces of tape? Geeze...

Luke's 1st Year Letter

(I know that this is way past due...I wrote this for Luke right after his 1st year birthday party, but never got around to posting it. Thought you ought to read this one before the next one that I'm about to post. --Rachael)

May 27, 2010
Dear Friends and Family –

Look who just turned one year old! Wow, what an adventure this first year has been for me and my parents! The last time I wrote you a letter, I had just come home from the hospital for the first time, and I was four and a half months old. A lot has happened since then.
Once I finally got home in October, I got to stay home for about three and a half months. When I was eight months old, my heart doctor, Dr. Kao, told my Mamma and Daddy that it was time to start thinking about my second heart surgery. She had me go in to the hospital to make another movie of my heart. The night after I made my heart movie, I got very sick with a virus called CMV. Even though I was only supposed to spend one night in the hospital, I had to stay a couple of weeks.
Finally, my Mom and Dad got to take me home, but not for very long. Before even a day had passed, they decided that I was still too sick to be home, so they took me back to the hospital. That was a very scary trip, because my oxygen got really low, and I had another seizure. I stayed in the hospital for about another week before I went home again. This time I got to stay home for awhile, but my heart and lungs never worked as well as they did before I got CMV. My mom and dad were tired and scared because I had to work really hard to breathe and get the oxygen that I needed. Before I went into the hospital to make my heart movie, I was just about ready to breathe on my own all the time without the ventilator. After I got CMV, I had to use the ventilator again almost all the time.
About two and a half weeks after I got out of the hospital, my Mom, Dad, and Dr. Kao decided it was time to do my next heart surgery, even though they would have rather waited until I had gotten all the way well from having CMV. So I went back to the hospital, and they scheduled my surgery for about five days later. God took very good care of my family during this time. Just a few days before my surgery was scheduled, God revealed to the doctors that I had another infection. The doctors told my parents that if they had done my surgery while I had an infection, I probably would have died. I ended up having pneumonia, and I had to wait about four weeks before I had my surgery. During that time, my lungs got very, very sick. The doctors had to hook me up to a machine that gave me a gas called Nitric Oxide that helped my lungs get more oxygen in them. They had to make it so I was asleep and extremely still all the time.
Finally I got better from pneumonia, and I got to have my second heart surgery. Since the recovery from my first surgery was so difficult, my parents were very scared that this time might be the same. When my Mom left me to wait for my surgery to be over, she kissed me and told me not to do any funny business. I didn’t! God took such good care of me! My surgery went very smoothly, and I got to go straight back up to my room. I didn’t have to go on ECMO or anything! All the doctors (and my Mamma and Daddy) were amazed at how well I did through my surgery and recovery. Part of that day was sad though, because I had to say goodbye to my neighbor in the next-door hospital room. She went up to heaven about an hour after I got back from my surgery. My parents were very sad for that baby girl’s family, but also very relieved that I didn’t go to heaven too.
I got to go home only 10 days after my surgery this time. But only a week later, my parents had to take me back to the hospital because I was acting very strangely. The doctors discovered that the sodium in my body was very low. It was so low that I would have died if they didn’t get sodium back in my body very quickly. I had to stay in the hospital for almost two more weeks after that. Even though the doctors ran tests and didn’t see that my brain had been damaged, I took some steps back in my development, especially in how I eat. Before my sodium dropped, I could eat a whole jar of baby food every day. But now, after two months of hard work, I can only swallow a little bit of cereal.
Just about a week ago, I had to go back to the hospital to have a whole bunch of tissue removed from my throat. The doctor took it all out so that I can breathe out of my nose and mouth instead of using my trach to breathe out. The doctor says that my airway is really small, and I might need to have another surgery on my throat to make it bigger so I can breathe without my trach someday. I hope everybody prays that God will make my airway bigger so I don’t have to have another surgery.
Right now, I’m doing really well and having a lot of fun. I weigh 22 pounds! I still get almost all of my food from my feeding tube, but I’m working really hard on learning to eat solid food again. I only use my ventilator when I’m sleeping at night, and I’m about to get rid of my ventilator completely. I can sit up by myself for just a little while without falling over, and I love sitting and playing in my Jumper or my Exersaucer. My Mamma says she thinks I’ll crawl before too long. Even though I hate to be on my tummy, I’m getting really good at pushing my head up. I used to have to be in my crib all the time, but now I spend almost all day up and about. I even get to go to church every Sunday now. I’ll be leaving soon to go on my first trip out of Dallas. I’m going to my Aunt Hannah’s wedding in Albuquerque. I can’t wait to meet all my friends and family that have been praying for me over there.
A lot of very hard and very amazing things have happened this year. My parents hope that a lot of very good and very amazing things happen this coming year. I want you to know that my doctors have been working really hard to make me well, but even fantastic doctors like mine can’t do everything. God is really the person who is making me well. I want him to have all the credit. God has helped my family through so much. We have learned to rely upon him and take each day one at a time. We are so thankful to be a family at home all together.
Thank you for praying for me and my family. I get better and better every day, but I still like it that you pray for me. My parents still need a lot of encouragement because I need extra special care. Thank you everybody! I hope that God blesses you like he has blessed us!


Tuesday, July 6, 2010

July 4th

{photos courtesy of Aunt Rebekah}