Back Home From The Hospital

The boys slept much better last night. Thus morning we changed Jack's pain medicine, and that helped him eat, drink and keep everything down today. By 11am Jack had met his drinking goal and we started the discharge process. We all took a good nap this afternoon and they are doing well.

Another Night In The Hospital

So we didn't get to go home today...

Jack slept great last night, but was upset most of the morning. He needs to drink 4.5oz over 3 hours to go home, and got to about 2oz. He ate but didn't want to drink much at all today. Needed medicine for nausea and to calm him down to rest.

Luke was upset and didn't sleep well at all last night. By 4am he got some stronger pain medicine and got a little sleep. At 9am his pulse/ox level started dropping too low and has needed oxygen since then.

Both have been on strong pain medicine and resting most of the day. We will stay tonight and see how they do tomorrow.

Surgery Day

Yesterday was a very stressful day. I had a great weekend serving at church, which means five hours Saturday and five hours Sunday to mix the sound for worship team rehearsals and the three weekend services. Monday was the day to do laundry, clean the kitchen, go grocery shopping and get everything packed and ready for the overnight hospital trip while the boys were at school.

One if the surgery nurses usually calls sometime between 9-11am to ask a bunch of health/medicine/sickness questions and let me know what time we need to be there the next day. Waited, waited and waited for the call... I started calling at noon and left a message. A surgery nurse called back, went over questions and let me know that Jack would probably be cancelled since he was still on antibiotics for strep. That put me in a terrible mood for the rest of the day. The nurse would check with anesthesia and call me back, but that took almost four hours and the answer did not change. I explained to the nurse that Jack has had strep 10 times in the last 11 months, this time he has not really been sick (just threw up once at school so we went to the dr to be safe), and that he probably would be no healthier than now on whatever date they could reschedule for. She understood, gave me the time to check in, and let me know that it would be up to our ENT Dr & anesthesia to decide if Jack would be OK for surgery.

We picked up the boys from school, had dinner with family, prayed a lot and finished packing for the hospital stay.

This morning was great. We arrived at the hospital, saw the doctors, and everyone agreed with us that Jack would be fine. Thanks so much to Mimi for coming and helping with the boys before surgery, in recovery, and giving us a lunch break after we moved upstairs to our room. More thanks to our family, pastors and friends who prayed for and with us today and a few that came to visit and check on the boys.

Surgery was great! Both had tonsils and adenoids removed, Luke had one ear tube replaced, and Jack's tubes were removed because his ears looked great. Both also had blood taken - Luke to recheck his liver functions and Jack to do some allergy testing. They did well in recovery, and by the time we moved upstairs to our room, both were very calm, relaxed and quiet. Jack has a popsicle and some juice very quickly and their nurses are amazed at how well they are doing!

We should be headed home tomorrow and the rest of the week may not be as easy, but we're very thankful that the boys did so well and we were able to get both of them done together. God is good!

Surgery for the boys next week

Since last fall, at least every month Jack and Luke have had ear infections or strep. This spring both had tubes put in their ears, and that has helped stop the ear infections. The strep has continued, though. Last month was Jack's follow-up appointment with the ENT doctor to check his ears and tubes. We brought Luke along, explained the continued problem with strep, and he easily agreed that it's time to take their tonsils and adenoids out.

Last week Luke had an appointment with the GI doctor to talk about his feeds, medicines, and plans to start the process of changing how he's fed to eventually get him eating by mouth. Luke was on the third day of a runny nose/congestion, so we had the doctor take a look at his ears. Luke's left tube was gone and there was some infection. So, Luke will also get a tube replaced while he's asleep for the surgery.

Jack's stomach had been bothering him earlier this week and on Wednesday threw up all over the place and had to be picked up early from school. Took him to the doctor yesterday and it's strep again! Hopefully the last time for a while... While Jack is in surgery, he'll have blood drawn to do some allergy testing. He has stomach issues every couple of weeks that we think is unrelated to his throat and ear infections. Always different foods, days, times - nothing we've been able to figure out on our own, so maybe the allergy test will give us an answer.

The boys will have surgery together (well, one right after the other) on Tuesday the 14th at AR Children's Hospital. Won't know the time until Monday, but will probably be in the morning. They will be admitted and we will all stay overnight on Tuesday. If all goes well, we should be home by Wednesday night. It may be a long and tiring week, but we'd rather do both at the same time and only have to go through this once. Thanks for your thoughts and prayers. We'll post updates next week.

Past 2 weekends...

Luke has been showing more interest in food! Last weekend he ate 4 cherries and 2-3 animal cookies. This weekend he ate pop corn and animal cookies! And at school he ate mini marshmellows and cookies for his therapists. This is amazing for Luke. We also did a trial of feeding milk into his tummy and he did great. He got three 2-3.5oz feeds on Saturday and didn't throw anything up! He was so excited to get "milkies in his tummy". One time I asked him if he needed some milkies to go into his tummy and he screamed yes! He then ran and jumped on the couch and pulled up his shirt for me. I love that he is doing so good. Today we pushed his first feed up to 4oz and he wasn't able to keep it down...lesson learned! I have his backpack on and have his pump to give him 2 oz every 1 1/2 hours. So far so good! We have a GI appointment at the end of the month to discuss medications to help Luke out if needed. We are hoping to do all day feeds into his belly and to do night feeds past his stomach.

The boys have really taken off with the potty training! Every morning the past 4-5 days the boys wake up asking to go to the potty and major accomplishment is they are pooping several times a day on the potty! Sorry for poop talk but they get so excited about it.

One of Luke's teachers told us this story that still makes us giggle: a new prospective mom and child were touring the school and went into Luke's class since the child will be in there next month. Luke ran up to them yelling (with his fists thrown up in the air) "I pooped in the potty!!" He then grabbed the mom's leg and hugged it while still yelling about the potty. The mom laughed and gave him a high five!....Thankfully she understood and gave home the encouragement he was looking for.

Friday night we went to a birthday bash for the opening of the I Can! Arts Center. It was fun and the weather turned out great as a storm was coming in and cooled it off and had good cool winds. Here are some recent pictures:

Update on Luke's MRI

Summer arrived for good here in Arkansas last week. It's been hot for a while, but now (like most of the country) we've had triple-digit heat with heat advisories most days. Around here, June through August usually brings miserable heat and humidity - September and the start of football is when the relief comes as the temperature slowly begins to drop. On Fridays the boys get wet with the sprinkler during recess at school, but today it was even too hot for that! They only got 15 minutes (instead of 30) outside this morning, and by the afternoon it was just too hot for them to be out (103 degrees today).

Luke's MRI results came back and everything looks fine. There was one small area which probably was a small brain bleed (which we never knew about) during his first few weeks, but it is not causing any problems and is nothing to be concerned about at all. No sign of any chiari malformation. Just like all of Luke's other tests, we're happy that nothing serious was found (and not having to find the best hospital for a head/brain surgery) but once again are left without an answer or explanation of why he won't eat and what we should do to fix it.

As we've said before, Jack and Luke have come through so much. Every time we are at the hospital for a clinic appointment or feeding tube change, we're reminded of how lucky we are. If Luke is never able to eat, we can live with that. It won't be easy, but we have learned to adjust and are thankful that every serious condition we have tested for has come back negative. It's taken almost two years to get through every procedure and test that all of our doctors and specialists have recommended. Since no physical explanation has been found, we are ready to start the long process of overcoming the psychological reasons for Luke's oral aversion - lots of steps and details that we'll share in another update.

The boys have had many ear/strep infections that started last fall. This spring both had tubes placed in their ears and the ears have been much better. The strep infections have continued at least once a month. Monday Jack had a follow-up appointment at the ENT clinic (with our favorite specialist at the hospital) to check his ears. We brought Luke with us and talked about our battles with strep. Dr R was great, looked at both of them, and agreed with our thoughts. Both boys will have their tonsils and adenoids removed on Tuesday, August 14th. Yes - it will be a terrible couple of weeks, but we'd rather only have to get through it once.

This doesn't happen very often, but they do love each other and sometimes show it

 Painting and playing with chocolate pudding in the bath

MRI For Luke

We have been busy on vacation seeing Ken's family in South Carolina and a quick trip to the beach! Luke is having a MRI tomorrow (Tuesday 6/05) to check for a brain malformation. We have to be there at 9:30 and the procedure should start around 11:30. He will put to sleep and intubated by anesthesia so please pray that all goes well. He has always done great being sedated (knock on wood!) but every time he goes under it is a risk. The MRI should last around an hour and then we will go to recovery. We will hang out there for just a little bit and should head home late afternoon. Please pray that he does well and whatever God's answers are will be revealed. I don't know if I want him to have the chiari malformation or not. I will be honest.. I am a little pessimistic about Luke and his tests. I get frustrated about not being able to have answers and whenever I get a little hope that something may be found, it turns out to be nothing. I am going into this test just asking that God will give us answers--even if it is that nothing is found. There are different roads to go down with each result--some harder than others but all with the same result of trying to get Luke to eat and drink and get rid of his feeding tube. Please pray for Luke that all goes well, for this tired and frustrated mom, and for his daddy too! Thanks!!

Here are a couple pictures from our trip (more to come/ click to make bigger!):

Playing with cousins

Silly Faces!

Luke with Mommy

Jack with Daddy

Cool Boys!

 

 

Wagon rides with Grandma

Luke playing guitar with 2-Daddy (great grandfather)

Jack with GiGi (great grandmother)

4 Generations!

Telling Uncle Sean a story

Watching TV with Aunt Laura