Fun with Paint

Luke's 2nd Birthday

*photos courtesy of Aunt Rebekah

Airway Reconstruction

I apologize for having not posted sooner after Luke got out of the hospital, but we have been so busy getting back into the swing of things back at home and work, that I haven’t had any time to sit and write.  Bottom line is that Luke is home, safe and sound, and we’re counting the days to our next surgery and ultimately decanulation.

On Saturday before his surgery, we celebrated Luke’s 2nd year with a small party at our house with our family, closest friends, and two of Luke’s nurses.  As we had started hoping months ago, Luke was indeed walking at his party, and all of our guests were so excited to see him toddling around.  He was a great host until we sang the Happy Birthday song about two hours into the party.  Luke waited until we finished singing, then burst into tears.  Loud voices still bother him when he’s tired, no matter how cheerful.  All in all it was a great celebration. 

Monday, May 9, we got up extremely early to take Luke to Children’s downtown.  We did the normal pre-op stuff, and they took Luke back to the OR around 8:00.  This time Luke was crying as they rolled him down the hall away from his parents, which did not make it easy for mom and dad.  We got updates about every hour, and the surgery was over in about four and a half hours.  Dr. McClay told us that everything had gone as planned.  He told us that Luke had two incisions, with a drainage tube at each incision.  We were very concerned that we wouldn’t be able to keep Luke from pulling at the tubes once he woke up from anesthesia. 

We finally got to go back and see him in his Cardiac ICU room about 1:30.  He certainly didn’t look his worst, but his state post surgery still reminded me of that awful moment we first saw him after his first heart surgery at four weeks old.  He was very still, and had that clear post-op goop in his eyes.  He smelled exactly like he had just come from the OR.  I had to keep reminding myself in those difficult moments that he was warm, his o2 sats were great, and his heart rhythm was stable (praise God!).  It was a pretty rough afternoon for all of us, and I cried a lot. 

Our worries about Luke pulling on his drainage tubes and IVs were unfounded.  He slept the majority of the next three days.  Plus he couldn’t access either of his drains because they were completely covered with dressings.  Before surgery, I had loaded up Luke’s birthday present table with things he could do in his hospital bed.  Poor Luke was in a lot of pain, and zonked out most of the time because of the Tylenol with Codeine.  Anytime he woke up he either wanted to watch TV or for one of us to read his favorite book (we read it so many times to him that both David and I have it memorized and can now “read” it to him from across the room).  Besides managing Luke’s pain, our biggest struggle over the next three days and three nights was suctioning.  The first four shifts, the nursing staff would not allow us to suction Luke like we have been at home.  Luke’s secretions have increased drastically since surgery, and it was extremely frustrating having to call a nurse to Luke’s bedside every five minutes (I mean that literally).  

On Luke’s actual birthday, he had a rough wake up call, as the ENT surgeons (McClay has a fellow that assisted with Luke’s surgery and made rounds with him afterward) came in early in the morning and removed his drains.  The rest of the day went without incident, and we got to celebrate Luke’s birthday with our best friends the Trischittis and some fabulous home-made cupcakes. 

Thursday afternoon, we took Luke down for his first-ever swallow study.  During the surgery, Dr. McClay placed a stint in Luke’s upper airway.  The stint makes it so the part that is supposed to close over his airway when he swallows (epiglottis) stays open.  That means that Luke is at risk for everything he swallows going down his airway (aspiration).  Dr. McClay explained that most kids aspirate, but some kids can figure out how not to aspirate.  The swallow study revealed that Luke is aspirating everything:  water and puree.  This means that for as long as he has the stint, Luke can only have clear water by mouth once a day to keep his swallowing skills sharp.  After the swallow study, the amount of suctioning we’ve been doing started to make sense:  we realized he’s been aspirating his saliva every time he swallows.  Unfortunately, that means we’re going to be suctioning a lot more frequently for the duration of the time Luke has his stint in.

Our ENT surgeons rounded again Thursday evening to talk with us about the results of the swallow study.  We were prepared to spend one more night in the ICU and then go home on Friday, but our wonderful nurse asked McClay if we could go home that evening.  He didn’t see any reason why not, so we rolled out of there at about 6:30 Thursday evening.  I think Luke holds the record for the amount of times a kid has been discharged to home straight from the ICU. 

Since we’ve been home we’ve dealt with a lot of pain and fussiness.  Luke surprised us Friday morning by reaching for his Daddy to get him out of his crib and take him to the living room.  He was really unstable on his feet the first few days home, but he’s gotten a lot stronger in the past few days.  He’s still not 100%, but quickly approaching it. 

We had a scare Tuesday night when we found a blood stain on his mattress in the middle of the night.  We finally figured out that he wasn’t bleeding from his trach.  I rocked him and gave him some Tylenol, after which he seemed pretty normal, so we decided not to take him to the ER.  I was able to present my concerns to Dr. McClay at Luke’s follow up appointment Wednesday.  The doctor said that the stint he placed tends to rub up against the epiglottis and irritate it.  Bleeding is not uncommon, and we can expect it to happen intermittently for as long as the stint is in.  I was also concerned that Luke hasn’t vocalized since his surgery, and not for lack of trying.  Dr. McClay again said that is normal, as the stint is placed between his vocal chords.  I guess I have to wait to hear that baby voice until June.  Additionally, we’re not to try to cap him or use the Passy-Muir until after the stint comes out.   

Last night we had another scare.  I was gone for “girls night out” with some friends while David kept Luke at home.  On my way home David called and told me that Luke had been bleeding from his mouth, way more than we should expect from the epiglottis irritation we now know to expect.  When I got home, Luke was still bleeding profusely from his mouth, and we were suctioning blood from his trach.  We couldn’t tell where the blood was coming from, so we were forced to assume that something had gone wrong with Luke’s stint.  We loaded him up about 7:00pm and headed to Children’s ICU.  He bled the whole way there.  We were able to get in right away, a baby dripping blood from his mouth gets people’s attention.  After some thorough examination, the ER docs found that Luke had somehow fallen and cut the skin inside the mouth where it connects the lip to the gums (frenulum).  Mouth wounds bleed a lot anyway, but add to it Luke’s Aspirin regimen, and you get a recipe for a lot of blood.  The ENT on call sent a scope down Luke’s trach and his nose to check the placement of the stint anyway, and everything looked perfect.  We were so relieved to find out that it was such a minor injury.  They wanted to keep him over night for observation, but when they found out we have home health nursing available, they let us take Luke home only two and a half hours after we walked in the door.  Everyone was so nice, we really appreciated how they treated our family. 

The worst part of the LTR process is over, so now we’re in holding pattern until we’re ready for the next step.  On June 6, Luke will have another broncoscopy in which Dr. McClay will remove the stint.  That will be an overnight stay in the cardiac ICU.  At that time we can start trying to use the Passy-Muir.  Once he tolerates that all day, we can try to cap him.  We can also return to full force with Luke’s oral feeding trials.  The hope is that once he figures out that it’s safe to swallow again, his eating skills will improve dramatically because he has a much bigger airway, and swallowing food will be much more comfortable.  On June 20, Luke will go in for another broncoscopy for the doctor to check for scarring and make sure everything is healing correctly.  That will be another overnight stay in the cardiac ICU.  On June 25, Luke will have a sleep study to see if he’s able to breathe with his cap on his trach through the night.  I particularly need your prayers for this one.  Luke’s only other sleep study was particularly hard on him, and it was hard for his Daddy to watch.  Since the sleep study is on a Saturday night – Sunday morning, it’s Mamma’s turn to be with Luke through the sleep study.  I need peace and fortitude to help Luke get through this necessary step in the process.   If all the previous steps in the process go as planned, Luke will go in for a final broncoscopy and trach removal on July 18.  That should be the final step, and Luke should come out of that OR a trach-free kid!

We thank you all for your continual prayers.  We ask you that you pray for the next few weeks that Luke will stay healthy, that we as his parents have endurance to get to the finish line, and that we don’t have any more emergencies between now and decanulation.  We love you all and praise God for your presence in our lives.

Blessings,

Rachael, David, and Luke

Thursday

We had a better day yesterday, and today Luke is continuing to improve. Still sleeping a lot and managing pain. Swallow study today at 1:00. Pending those results, we'll head back home tonight or tomorrow. Thanks for your prayers

T-W-O

Wednesday

Luke had a pretty good night. Awesome nurse who stayed on top of his suctioning so he could rest. Already got the drains out from his neck and side early this morning. Found out he's still on a little o2 (I thought he was off, but he wasn't). Swallow study some time today. Happy Birthday Sweet Baby Boy!

Tuesday

{approx 9:45 pm}


The last half of today has been rough. Lost an IV. Copious secretions that the nursing staff will not let us suction. It is so frustrating to be perfectly capable of caring for his trach with our hands tied by the nursing staff so we have to beg them to come suction him every 5 minutes +. Got some more morphine on board, so hopefully we can all rest a little tonight.


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Luke is doing better today. He was awake for awhile this morning. He's still in pain, but he keeps signing "more! more!" when we read to him. I even got to see a little smile today. They took his foley out this morning, he's off of oxygen, and the doc just said they're going to take him off the vent now. He's had a full feeding and tolerated it well. Thanks for your prayers!

Monday

{approx 2 pm}

Luke's out of surgery. He's getting situated in his ICU room, haven't seen him yet. Doc says he did great, did what he set out to do, is hopeful about recovery time being 4-5 days.

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{approx 12 pm}

Luke is still doing well. We expect him to be out of surgery in a half hour or so.


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{approx 11 am}

Doc just finished getting the cartilage graft. Now he's going into the airway. Luke's doing well so far.


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{approx 8 am-ish}

IV lines are in. Doc started the cartilage graft. Luke's doing well so far


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{approx 8 am}

They just took Luke back to the OR. We should get an update every hour or so throughout this four hour long surgery.

Monday

Thanks all for your prayers and concerns. Whatever it was that was lowering Luke's o2 sats seems to be gone now. He seems to have returned to baseline as of last night. I'm still keeping him home from church on Mother's Day to reduce risk of infection before the big day in one week!