Jack's day

Jack did extremely well today. He was VERY cranky before the surgery because he was hungry and tired. Jack and I had to be at the hospital at 6:30 for an 8:30 surgery. He was good for the first hour but he cried off and on for the second hour. His normal schedule is to eat around 5:30/6:30 and then go back to sleep until around 8 so he didn't get to eat and he refused to close his eyes. The nurses took him to the OR around 8:15, they started surgery around 8:45 and I was back in recovery with him at 9:20. He was MAD when he woke up but promptly took 7 ounces of formula and was a happy boy. The anesthesiologist did a caudal block on him which is supposed to keep him numb for about 6 hours. It helps keep the need for narcotic pain meds low and usually Tylenol and Motrin controls their pain. Jack rested for about 45 more minutes and we were able to come home! Jack and I came home and took a 2 hour nap together and he has been a happy boy all day. He has been a little extra cuddly but that is fine with us. He has been standing and crawling with out any problems. Luke had a plastibell circumcision but they had to do a regular with Jack. It is a little more painful than the plasibell and it is more swollen and red. Hopefully Jack will be in the same good mood tomorrow and just need some Tylenol and Motrin. Thanks for the prayers. Will post a picture or two of Jack from my iphone in the next post.----R

Another (scheduled) day at the hospital

Arkansas Children's Hospital really is our second home. It's a good thing Rachel works there and we are both very familiar and comfortable with the place. Tomorrow morning Jack will have a quick visit with Dr. Jackson before he is put to sleep and gets circumcised. Keep Jack in your prayers tomorrow - the surgery is scheduled for 8:30am. We hope he does as well as Luke did (happy and back to his normal self the same afternoon).

Luke is still doing great at home. He's very happy, eating just as good or better than before, and seems a little more energetic. Maybe he has needed some extra oxygen for a while and we just didn't know it... He will have fun tomorrow morning when he has the house to himself and no competition for whatever he wants to play with.

We will post updates and let you know how Jack does tomorrow.

Great being back home

It's great to be back home with Luke. He and Jack are happy to be back together. I think both boys have been worn out this past week - both napped very well yesterday and they are sleeping in this morning. Luke is doing well with his oxygen and seems a little more energetic than usual. He may have needed the extra oxygen for a while, and because of that we are switching to another clinic at Children's Hospital that Luke will see monthly. Now that he is a year old, he has outgrown the high-risk newborn clinic and the new clinic works closely with other departments (pulmonary, cardiology) and can keep a closer watch on his development.

Luke has a pulmonary appointment the first week in November and will stay on oxygen at least until then. It doesn't seem to bother him while he plays and crawls around all day. He enjoys grabbing the tubing and chewing on it, and Jack will play with it sometimes too. It will be a long weekend of trying to clean and get caught up with everything - being at the hospital unexpectedly for nine days leaves a lot to be done...

Out the door!!

Luke is on the way home! Ken is glad to be going home and to be able to sleep in his own bed. I am glad my whole family is under the same roof again. I will sleep better tonight.

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Hoping to be home tomorrow

Luke is still doing well. It's been a busy morning and here is the latest:

His oxygen is down to 1.5 liters and will continue weaning, trying for one-half liter by tomorrow.

Feedings are still going well. The pulmonary team is fine with using oxygen at home for just a few weeks until Luke is fully back to normal.

We should also be getting an updraft machine and will keep that and the oxygen at home throughout the winter. That way, if he starts getting sick again, we are prepared to treat him quickly at home (and hopefully avoid another long hospital stay like this).

I've talked to nutrition about his feeding plan and this afternoon we are receiving the oxygen equipment and being trained (it's different than what we had at home before).

Luke is playing a lot - really getting tired of the hospital and ready to be home with Jack.

Moving on up....

Good busy day. Luke got his feeding tube out today and has been eating good all day. We stayed on 2 liters of oxygen because the doctors did not want the nurses to go down on it until cardiology made their recommendations. Luke got transfered to 5E bed 5!! If Luke behaves then he may come home on Friday or Saturday. The cardiology team recommended that Luke goes home on oxygen for a couple weeks and then we can wean him off. We will then go back for a follow up and get another EKG/ echocardiogram. They also want Luke to be on semi-isolation for his protection. They call it protective isolation. It means no going places that he could catch something from someone else. It is going to be another long winter of not going many places! I am going back to work tomorrow and working until Saturday. We will update when we have some more news. Thanks for all the prayers and everyone who has brought us dinner! It makes life a lot easier.


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Pictures of Luke eating

Luke just ate well! His feeding tube is out and he did great job with the bottle. Here is the proof:

Things are looking better

Yesterday was a good day for Luke. His nasal cannula (oxygen tubing) was changed from the high-flow bigger size to a normal-sized, smaller one. His oxygen is staying at 2 liters and he was able to drink a bottle yesterday.

Still waiting to see the residents and doctors, but we expect to move out of the intermediate care unit sometime today. Luke should lose his IV and feeding tube today an continue bottle feeding.

I won't post much more because a lot may change after talking to the doctors, but it looks like Luke should be home by the end of the week. The pulmonary team is thinking that his pulmonary hypertension (which he had after birth before coming home) has been back for some time and his lungs have been overworked for a while. We will most likely have oxygen at home again for a few months. Still lots of questions and we hope to get some answers today.

New team

The pulmonary team has officially taken Luke as their patient. He previously was on a general pediatric team. They still want him on 100% oxygen but we can wean his flow down. His nurse today just changed him to a regular nasal cannula an he is on 1 1/2 liters of oxygen!! When I came in today he was just playing away so I know he is feeling better. His pneumothorax is about the same today so we will still wait and see if anything else needs to be done. The echo-cardiogram has already been done and we are waiting to hear the results of that. The test for the cystic fibrosis will be in a couple days as he has to be off some of his medicines before they can do it. My dad (Dennis) was here when the attending came in and asked him about the CF test. The attending said that we shouldn't worry because he likes to test ALL children that are one and under that have come in with severe resp distress. So it is more of a rule out than a suspicion. It eases my mind a little but it still worries me. They may transfer Luke to a regular floor today or tomorrow which would be a step in the right direction! Keep praying as we know from many experiences that prayer works!--------R


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Quick update on Luke

I am home for a couple of hours and Rachel is with Luke for the afternoon. Here's a quick update as of two hours ago - I'll post more tonight or in the morning. Yesterday the pulmonary team made some changes to Luke's oxygen. They increased the percentage up to 100% (from around 30%), but started to decrease the amount of flow. We started yesterday at 8 liters and now we are down to 2.5 liters. Keeping the percentage high should help with the collapsed area in his lungs, but once he gets below 2 liters and can tolerate it, we hope to start feeding him bottles.

When I left, his chest x-ray from this morning had not been seen by the doctor yet. They will compare it to yesterdays' and see how the collapsed area is doing. We may be moving back up to the 5th floor this evening - the doctors mentioned it this morning, but I was not ready just yet. His condition right now is stable enough that unless something develops this afternoon, I'm comfortable with moving him.

This morning Luke had an echo-cardiogram, but no results yet from that or yesterday's EKG. The "salt test" (for cystic fibrosis) will not be done today. We're told there is a strict criteria that must be met for the test to be accurate (oxygen levels, medications, etc.) and he may not be ready for it until just before discharge.

I'll try to get a little rest before heading back to see Luke and relieve Rachel for the night. I'm picking Jack up and will take him to the hospital with me for a quick visit. Thanks so much for the continued prayers, emails and notes of encouragement.

Tests and more tests for Luke

Luke has been stable since his increase in oxygen yesterday morning. He pulled out his feeding tube in the morning and got a new one. They do x-rays to confirm that the tube is placed correctly, and this x-ray showed a small area of pneumothorax (collapsed lung). We were told it is hard to see, so it could have been there since Luke has been here or it could have developed from the high-flow oxygen he has been receiving. That may explain why he has had a hard time weaning off his oxygen.

We had a visit from the pulmonary team and they asked lots of questions, trying to rule things out and determine the best course of action. Luke had an EKG yesterday and today will have an echocardiogram and be tested for cystic fibrosis. I've heard of CF before, but spent the night learning more about it - terrified if that's what Luke has, but can't wait to have the test done and get the result.

Luke is off isolation!

Since Luke was admitted Wednesday morning, he has been on isolation. Since he came in with respiratory distress, drainage and chest congestion, the doctors, nurses and respiratory team have been wearing gowns, masks and gloves anytime they enter the room. The last of the cultures came back negative on Saturday, but the weekend doctors like to just maintain things and not make many changes.

We were told that Infectious Control will usually leave a patient on isolation until all symptoms are clear. This morning our unit leader called to request that Luke be cleared, and we were just told that he is offically off isolation!

Luke seems to really like the hospital and not care about going home anytime soon. Since early this morning, his oxygen has been increased from 5 to 8 liters. He was just not getting enough oxygen when sleeping. They are starting to wean him down again today and right now we are at 7 liters.

He will have an ENT bedside consult to rule out any physical airway abnormalities. Our hope is that ENT will say he is normal, his oxygen can be weaned quickly, and that he will make it through the night without any setbacks.

Rachel is going back to work either Wednesday-Friday or Thursday-Saturday. We have arrangements for Jack the rest of the week and Rachel's dad is having rotator cuff surgery on Friday. It will be a long and busy rest of the week - hoping that we can get enough rest and stay healthy ourselves.

Luke needs prayers

Luke had a good day yesterday. He seemed to be feeling much better, did not want to nap much, and played with his toys for part of the afternoon. His breathing treatments are down to every six hours now, and before bed his oxygen was weaned from 6 liters down to 5.

He is still getting a slow, continuous feed through his tube - his oxygen needs to be down to 2 liters before he can begin trying bottle feeding.

Luke does not like 3am. The first night after he was admitted (Wednesday night/Thursday morning), he was working so hard to breathe and really looked bad. The respiratory therapist called the ICU doctor and resident on call to look at him and Luke was one step away from moving to intensive care and getting a breathing tube.

Luke finished a breathing treatment about an hour ago, but now is oxygen level is down to 92-94%. Normal is close to 100% and right now his orders are to be 94 or above. His oxygen has been increased from 5 liters to 6, but it has been an hour and his numbers are not getting any better.

We really need your prayers now. It's been exhausting and stressful enough already, and any setbacks just further delay bottle feeding and decrease his chances of being home in the next couple of days.

Sunday morning update

I spent the night in my own bed last night! Rachel wanted to give me the night off, so I'll be with Luke most of the day (and hopefully get him to watch some football). Rachel said his oxygen is down to 5 liters, so maybe by tomorrow he will be low enough to try bottles. His feeding tube had to be replaced last night, but as far as I know he hasn't had any problems with the new one.

Here are some more pictures of Jack's fun the last two days:

Ryleigh playing with Jack


Ryleigh and Rowan both wanted to feed Jack, so he had lots of food to choose from


Two more of Jack and Walker:

Jack is having fun

Thanks to everyone who has been helping watch Jack this week. Wednesday and Thursday he spent the day with Mimi and Pop Pop. Yesterday Samantha Ray had him for the day and her girls Ryleigh and Rowan had a great time playing with him (sorry - no pictures because the hospital blocks Facebook).

Today Jodie McGinley has Jack and he is having a great time with Walker. Here are some pictures she sent us:







Lindsey Deaton stopped by with lunch for us and gifts for Luke. Thanks so much!

Another good night for Luke

Luke had a good night - I slept pretty good, so he didn't get very loud or too upset. The doctors and everyone else following him have just made their rounds and are pleased with how he is looking and sounding. Yesterday Luke started getting some continuous Pediasure through his feeding tube and today he will do the same but mixed with a few more calories.

His oxygen is at 8 liters and 40% - the weaning is going very slowly. No one's thinking about discharge anytime soon - today we are just continuing along and praying the positive progress continues.

Visitors welcome

Forgot to mention that we would love visitors. Luke should be here at least through the weekend, and familiar faces are definitely welcome!

We are at Childrens Hospital and visiting hours are 9am-9pm. We are on the 3rd floor, just up the red elevators at the front of the hospital. Luke is in Unit 3C room 4.

Luke's feeding tube

Better night for Luke

Luke had a better night last night. He was able to sleep a lot better and stretched his breathing treatments out to 3-4 hours instead of every 2 hours. He is still on a lot of oxygen (12 liters at 40%), but they will try to wean him lower today.

The doctor was happy with how Luke is acting this morning, but his oxygen needs to be much lower before he can start eating. Rachel is concerned because he has lost a pound these past two days - it took a LONG time to gain that pound. Luke was given a TPT feeding tube and they may try some small feeds today just to get something into his stomach.

Looks like it may still be a few days before going home, but he is definitely going in the right direction. Thanks for your continued prayers and for the family and friends that have been taking care of Jack while Rachel and I split our time at the hospital and sleeping at home.

Luke is feeling a little better....

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Update on Luke

I went home this morning to get some sleep. Rachel has been with Luke all day, so I'll have her post a quick update -

Luke was having a rough morning so the doctors increased his oxygen to 12 liters. He had another breathing treatment and then FINALLY started getting some good rest. His breathing has gotten better slowly as the day has gone on. He is still on 12 liters of oxygen and they probably won't mess with that until tomorrow. He slept the majority of the day and around 5 he sat up and played. He only lasted about 20 minutes and then took another good nap. He is still is getting breathing treatments every 2 hours and not getting to eat. Thanks for all the prayers because they have been working! Keep praying and we really appreciate it.

Rough day for Luke

Luke has had a very rough day in the hospital. Runny noses and congestion led to ear infections for the boys. Jack seems to be recovering fine, but Luke's runny nose has continued and last night he began coughing and gagging on the drainage so much that he could not sleep at all. We have a hospital-grade suction machine at home and have been using it almost hourly on Luke, so when he still had not fallen asleep at 2am, we were out of options.

Since being admitted this morning, Luke has been on oxygen and is having breathing treatments (albuterol and vapor) every 2-3 hours. Even with that, the coughing and restlessness continued. He has not kept any liquids down for 24 hours now, and has an IV for fluids. Around 6pm we moved from a normal/general unit to the intermediate care unit, where the respiratory therapists can watch him closer and give him the extra attention that he needs right now.

The amount of oxygen Luke is being given has increased throughout the day, and it was around 8pm before things started to stabilize. The doctor and therapists still don't like the way his lungs sound, but after his 8pm treatment, Luke was able to sleep for over an hour for the first time in over a day (and I feel so much better after just a little bit of sleep)!

We just finished another breathing treatment, and I think Luke was upset about being woken up. He has loved getting his treatments, but this time he screamed, kicked, arched his back and was so wild that he loosened his IV and had to have it reset. He is resting well now and will continue to be watched closely every 2 hours. Thanks for all the prayers. We will update again tomorrow as things progress.

Luke is just getting settled

Rachel and Luke arrived at the hospital around 3am this morning. We were trying to get through the night and see our pediatrician today, but Luke could not sleep at all last night. By 2am Rachel was really worried and we started to pack his things up. He spent three days in the hospital with pnemonia this spring, so we know the drill.

Luke is on oxygen (not too much - just 1 liter) and getting checked by respiratory therapists every 4 hours. He is still working extra to breathe, and the constant runny nose just makes it harder.

Pray for rest for Luke and for us. Thanks so much to Mimi (Rachel's mom) for leaving work and watching Jack today. I'll update again tomorrow morning.

Back to the hospital

Rachel and Luke are on their way to the hospital. Jack and Luke both had ear infections on Friday (Jack one ear, Luke both ears) and have had really runny noses for almost two weeks. Jack is doing a lot better, but Luke has been worse as the day progressed - constant coughing and getting choked up on all the drainage. We had a call in to our pediatrician's nurse to get an appointment ASAP today (Wednesday), but Luke was never able to stop coughing, relax and go to sleep. The ER is pretty full tonight and we really wanted him to make it until we could see our doctor, but that didn't happen. Pray that Luke doesn't have to stay long tonight/this morning and that he recovers soon.

Luke Laughing At His Friend

Luke loves to laugh. He doesn't do it too much, but especially loves being around other babies. The boys' friend Walker spent the day with us and Luke loved trying to get his attention. Here is the video: