Tru Is Home And Doing Well

Once Dallas arrived home on Wednesday we explained to Lin-Ley that Tru had to go to the doctor and Aunt Renee’ (Dallas’ sister) was coming the next day to stay with her while Tru was in the hospital. Her first question was, “Is Tru getting his new leg now?” In a round-about way we explained what was happening and she seemed satisfied. The next day Aunt Renee’ arrived and within 30 minutes Lin-Ley said, “Mom I think you should leave now to take Tru to the doctor.” Obviously she was ready for us to leave so she could see what she could get away with while Renee’ was in charge. I told her that Tru’s appointment was not until the following morning. But Lin-Ley tried once more to get rid of us and said, “Well you should go ahead and leave now because you don’t want to be late.” Nice try! By the way, Aunt Renee’ caught most of her tricks. The first morning after breakfast she pulled out a candy bar from a mystery location and tried to talk Renee’ into letting her eat it. Renee’, thank you so much for your help!!

The weather forecast for Friday morning called for snow and ice. We left about an hour before we needed to be at the hospital. It usually takes about 25 minutes for the drive but it took us over an hour to arrive and we were actually 15 minutes late. We were really nervous about being late but that was ok because we actually rode up in the elevator with one of the pediatric nurses who was late herself.

Dallas and I took care of the paperwork, met with the anesthesiologist and the surgeon while Tru played with all of the toys. He was having a grand time and his only concern was that I would not unzip my backpack where he knew I usually kept his sippy cup. Tru is not a fan of the “no eating or drinking after midnight” rule!

While we were waiting to go back to the operating room Tru walked and walked and walked around. He was a great source of entertainment for everyone there. As usual I think many there stared at him in amazement that he could walk at all. His hospital gown was too long so I tied it up in the back in a big knot. That was all it took - he took off to get in some excersice before the long hospital stay.

I (Jody) was able to put on a gown and walk Tru back to the operating room. Once we went inside Tru just held on a little tighter and kept turning my face toward him so that I would kiss him right on the lips. He does this when he is nervous. Then I had to lay him on the operating room table and hold him while they placed the mask over his face to make him sleep. After a final kiss good-bye I joined Dallas in the waiting room for the next four hours.

We joined Tru in the recovery room after surgery and he seemed to perk up after a short while. I knew he was going to be fine when all of a sudden he said, “No, No Airborne!” (Airborne is our dog.) He was giving Dallas high fives and he pulled my hand toward his face. His cast seemed huge and was a little surprising even though we did not know what to really expect. He was on oxygen as is normal after anesthesia and he was having nothing do with the mask so they tried switching the oxygen to the tube that goes under the nose. And then… he was really annoyed!

We moved to his in-patient room in the pediatric ward and immediately Tru started receiving excellent care from the nurses there. He began to get uncomfortable and the oxygen tube under his nose was driving him crazy. He had a morphine drip and we were able to push a button every eight minutes to release additional pain medicine if he really seemed to be in pain. As the afternoon turned into evening Dallas left to go home and I settled in for the night. Tru cat-napped for a few minutes here and there during the afternoon but there would be no sleeping for anyone on Friday night. Tru and I ran Brian, the nurse on duty, ragged that night! Although Tru was receiving morphine for pain, valium for muscle spasms, an anti-itch and anti-naseau medicine to offset the effect of the morphine, Tylenol and Benadryl Tru was unbelievable uncomfortable, fidgety and itchy. Before beginning surgery the anesthesiologist has administered a nerve block and it was definitely wearing off.

The oxygen tube was the first thing to go – he was not going to have it! So Brian had to rig up a tube to blow oxygen at Tru’s head. His IV came out twice due to Tru’s twisting and turning in the bed. He would not eat but we needed a constant supply of apple juice. Then we needed dry sheets! After more twisting around in the bed the pain medicine supply’s tubing came disconnected from the IV. Brian! During one of the night time visits Brian noticed that even though Tru had been receiving oxygen since surgery he seemed to be wheezing. Respiratory therapy was called and a chest x-ray was made. Tru’s left lung was deflated and he was holding too much fluid. Then there was more medicine administered that would make Tru pass all of the fluid on his lung. Brian – more diaper and more dry sheets please! Breathing treatments began every four hours.

Have I mentioned the diapering issue? Oh boy! Tru’s right leg is totally enclosed in the cast. It goes up and around his waist to nearly the top of his ribs. His left leg is free of the cast but it begins at the thigh. Therefore diapering has become a challenge. I have to tuck-in a regular diaper. Tru has to lay on his back (tuck), roll on his right side (tuck), roll on his left side (tuck some more) than back to the front. There is no way to fasten it – just tuck it in and hope it stays in place. Then another, larger diaper is placed over the cast as best as it can fit. This method is certainly not foolproof but it is the only option for the next two to three weeks.

Finally Saturday morning rolled around and there was still no sleeping happening in room 328. At 7AM there was a nursing shift change and I would not be surprised if Brian bolted from the pediatric ward at 7:00:01. Now it was Lori’s turn. Tru still seemed very agitated and extremely itchy. Although there has never been a problem before Lori thought she saw a connection between Tru’s Benadryl doses and his more agitated states. She discontinued the Bendryl and things began to calm down. Tru actually took a one hour nap mid-morning. The orthopedic doctor on call for the weekend came in for rounds around 7AM Saturday morning. He looked at me and asked, “Would you feel comfortable taking Tru home today?” Without even thinking (and I think I might have said this a little too excitedly and loudly) I said, “NO!” Obviously he was not aware of Tru’s respiratory issues at that point but was he crazy?! Tru was still having some pain and I was not ready to leave the safety of the hospital and the great care of the nurses there.

Dallas arrived mid-morning and Tru seemed to finally be getting over the effects of the anesthesia and his pain level seemed to be leveling out. However he was still in respiratory distress. Around noon on Saturday Tru had more x-rays of his chest and neck. His left lung had deflated even more than the previous night and the respiratory therapy became more intense. At this point his leg was secondary. Actually Tru’s leg never really seemed to bother him once he got over the initial shock of pain on Friday night. At one point on Saturday morning he was up on all-fours in the bed.

It took until Sunday to get this half-smile out of Tru. The oh so loved sippy cup was always close at hand.

Long story short, Tru stayed in the hospital until Monday evening due to his respiratory problems. As Saturday passed he started acting more like himself and there was no need to push the pain button anymore. The valium was also stopped. Tru was having a real problem laying still. With this cast he can not sit up unassisted. This has definitely caused some frustration but I must say again that Tru has taken this all very well. Sunday finally arrived but they were not ready to release Tru because they wanted him to complete a 24 hour course of steroids for the wheezing. He began becoming more like himself and perked up when I played a movie but still would not eat a bite of food. By the end of the day he was so bored. They would not let us leave the room due to his breathing issues and the fact that this is cold, flu and RSV season.

As we left the hospital Lin-Ley sat with Tru kissing his cheek, checking out his cast and asking him if he was ok.

In this photo Lin-Ley is all smiles because she really liked riding in the wheel chair.

As you can see Tru is leaning to the left which was the direction of the door where Dallas exited to get the car. Tru thought that if he leaned in that direction hard enough that he could move the chair. He did not want to sit still one more second.

We finally found out mid-morning Monday that we were going home. Hallelujah! We had to wait on doctors from every area (orthopedics, pediatrics, respiratory, etc) to sign off on Tru’s release. But it was official. Now we had to wait another two hours for his prescriptions to be filled. Oh the torture! Dallas and Lin-Ley arrived to pick up us that evening and Lin-Ley instantly began kissing Tru and asking him if he was ok. Of course the first thing she said to me was, “Do you have a prize for me?”

When we made it home a member of our church was waiting in the driveway with our dinner. Our church has arranged to bring us dinner every night this week. How incredibly nice!

We ate, had baths, played around and went to bed. Tru slept all night!

Tuesday was a day of adjustments. We tried to find different positions for Tru to sit up and make him comfortable. What we have found to date is that nothing really works. He is not going to be very comfortable until the cast comes off. However, that has not stopped him. He is a really good sport.

Playing with play dough in his high chair. It's a tight fit in this chair and he can not sit up straight so the seat belt is the only thing keeping him from slipping out.

Where's Tru?

Tuesday night right before bed we were playing around in Lin-Ley's room and Tru had decided that he was being left out of the action too much. So he turned over and started crawling. We knew he would find a way to become mobile but never exected to see it on the first day home.

Tru has an appointment on March 6th to check his leg. If he has healed enough the cast will be removed and we will go immediately to the prosthesis clinic to have his first fitting. Our dream for Tru has almost come true!

Thank you all for your thoughts, prayers and warm fuzzies. They worked!

P.S.

For those of you who have inquired about Dallas’ return home – no, it’s just a two week visit. He has to fly back to Kuwait on March 7th. We will not see him again until he returns for good in November. By that time both Lin-Ley and Tru will be running to daddy in the airport!!!!!

The BIG Surprise

Dallas is home!


Lin-Ley was so surprised to find her daddy home after school that she was speechless.








She could not keep her hands off of him.












He had some new books for the kids but by the end of the night Dallas had probably read 10 books or more.

Tru did well. He did not hesitate when Dallas went to pick him up. They were all giggling and rolling around on the couch in no time.

Well... tomorrow is Tru's big surgery day. Please say a prayer for him.

I am not sure when I will be able to post here again. Until then...

Happy Valentine's Day

"Who us? We did not have any candy today."








"Ok. Maybe just a little."










"Well... maybe a lot!"










"How about a little Valentine kissy?"










"Come on. Don't be shy."











"Just a little closer."










"Smack!"

Happy Valentine's Day To You All!

You Can Not Keep A Good (Little) Man Down

Last Friday I finally spoke with the cardiology team at Children’s Hospital and they scheduled Tru’s heart catheterization for Tuesday (yesterday). It all happened very quickly but if we took this appointment we may not have to postpone his leg surgery later this month. Enough said – book it! I called Pa-Pa Bill (Jody’s dad) and he was here the next day to help take care of Lin-Ley while I took care of Tru at the hospital.

Tru and I went to the hospital on Monday for his pre-cath screening. They worked him over with tests. He was a good sport and actually showed off his newly acquired walking skills while we were waiting for his appointment to begin. I think he is trying to tell me, “Mom, I really do not need another surgery. Look what I can do!”



Tru was cleared for a heart catheterization. He needed a stint in his aorta but because of his body size they decided that they should only perform an angioplasty at this time. Perhaps he would be ready for the stint in a couple of years. That was actually good news because we were told that if he received the stint that he would have to be on aspirin therapy for six months afterward. If he were taking aspirin he would not be able to have any other surgeries for six months. So we were happy about the angioplasty even though we understood that he would need more heart procedures later.

Tru in his peek-a-boo hospital gown before the cath. He has had his blood pressure taken so much he decided that he knew how to work the machine too.
















We arrived at the hospital yesterday for his heart cath and everything was under way. After about 1.5 hours the doctor came out to speak with me. I thought they were done but he took me into the consultation room and told me that he wanted to install the stint now. Tru weighed one kilogram more than he was initially told and due to the severity of the coarchtation in his aorta he felt it was best to place the stint now. Of course I agreed but then thought about the aspirin therapy. Before I could even complete my sentence he assured me that Tru could discontinue the aspirin as needed for his leg surgery without problem.

After another 1.5 hours Tru was wheeled to recovery. Everything went very well and exactly according to plan. The stint that was placed in his aorta has the ability to be dilated as he gets older and his heart grows. That means that he will need a minimum of two more catheterizations in the coming years.

Because of the catheterization Tru had to remain still and laying flat for six hours in the recovery room. If you have ever been around Tru you know that “being still” is not an option. They tried to help sedate him through his IV but apparently he is very resistant to sedation. He was miserable! He wanted to get up but he was not allowed to bend at the wait. He did not understand why he could not sit up. I tried to hold him for short while but he was too wiggly. For his own good I agreed to have a seat belt type device placed across his stomach to help keep him still. Over all I must say he did very, very well. But at the stroke of the sixth hour Tru was up and instantly much happier. He ate some macaroni and cheese and chocolate cake and all was well with the world!

We spent the night in the PACU and Tru actually slept for almost seven hours. Unlike other hospitals this one specializes in children. Therefore the nurses were actually extremely careful about being quiet when coming into the room during the night. I was so thankful! This morning we were woken up at 5AM by the EKG tech. Then a chest x-ray. Then we waited and waited and waited to be released. Then Tru had an echocardiogram. Then we waited some more. While we were waiting Tru took the opportunity to explore outside of our room. He and the nurses had a good visit:

Tru talked, walked, entertained and charmed the nurses. In return they gave him a cookie from their secret stash - Jackpot!











And of course he had to show off his walking skills again much to their delight:


We arrived home around 1PM. Tru was so excited to be home he was almost giddy.

God is good and He has certainly taken good care of us and especially Tru. Thank you all for your continued thoughts and prayers! One more surgery to go. Tru does not realize just what he will be able to do after his leg surgery. How exciting for him!!!

Cheese!














By the way…
Happy Mardi Gras! (Feb 5, 2008)
Happy Chinese New Year! (Feb 7, 2008) The year of the rat!

Yet Another Emergency Room Visit

Yes, apparently we just can not seem to stay away from the local emergency room. It was Tru’s turn again. He began wheezing on Tuesday evening and I gave him a breathing treatment at home that night. On Wednesday morning he sounded better but had a low grade fever. By 3:30PM his school called and said he had a higher fever and was wheezing. I debated on whether to visit the emergency room or not. I even called a nurse line to discuss Tru’s symptoms. After discussing it with a nurse, and having recently discovered Tru’s heart ailment, I decided that it was better to have him checked out.

Having been down this road before I have learned that an emergency room visit is a minimum of five hours. So this time, I stopped at a local 7-Eleven for a quick, portable meal. We grabbed some juice, fruit, a lunchable for Lin-Ley and a turkey sandwich for myself. Tru did not have an appetite so the juice was the only thing he was interested in. I thought that if I were going to eat a sandwich from a 7-Eleven at least I would be at a hospital if it made me sick.

When we arrived at the hospital it was standing room only in the pediatric waiting room. I knew it was going to be a long night! When we went in to see the triage nurse I mentioned Tru’s recent heart diagnosis. Well those were magic words because they found Tru a room within 20 minutes. He began receiving breathing treatments and they tested him for strep throat, the flu and RSV. All tests came back negative. They eventually gave him some oral steroids to help his breathing.

After being in the emergency room for almost seven hours the doctors were still not happy with Tru’s breathing and they told me they were going to admit him over night. I was shocked! So we (Tru, Lin-Ley and I) made ourselves comfortable in a pediatric room for the night. Technically Lin-Ley was the only comfortable person in the room as she was stretched out on a love seat and slept soundly. Tru had one of those steel cribs and was very confused about his surroundings. And of course as always while in a hospital you can never really rest. They were coming in to give Tru’s breathing treatments every two hours.

At 2AM Thursday morning a male nurse came in to administer the treatment. Of course we were all sound asleep. But he came in as-loud-as-you please with a cheerful, “Good morning. How are you doing this morning?” What? Luckily Tru was still sleeping and continued to sleep through the treatment. Then… the nurse’s cell phone rang… and he answered it and had a conversation in our room (our room with peacefully, sleeping children)! I thought I was going to have to go “Nurse Tina” on him. (Inside joke. See the Little Brother Max blog for insight.) Somehow Tru slept through all of this which was amazing. As the nurse left the room he said (again very loudly), “I will see you again in two hours” and slammed the door. Well… guess who woke up screaming!!
So every two hours someone entered the room and Tru was miserable with a lack of sleep. Ditto! Finally at 9AM the doctor came in and released Tru with a prescription of oral steroids and continued breathing treatments at home.

While at the hospital the kids both received beautiful handmade blankets that were made by volunteers of the Project Linus organization. This organization provides “security” blankets to ill children. I think I will start a charitable organizations section to our blog. Project Linus will be the first addition.

On a lighter note, last Saturday we met up with Dwyndle (Dallas’ cousin) at the mall and had lunch together and a nice visit. He brought along his camera and got some great photos of the kids:

Tru enjoying lunch.

A great photo of Tru's smile . He recently learned how to say "cheese".

Lin-Ley and Uncle Dwyndle.

Lin-Ley told Dwyndle that she could not wait to take him to China. She often offers to take people to China as if she were an official tour guide.