One Week Down - Two To Go

It has been 8 days since Owen's surgery and we are anxiously ready for his Feb 2 checkup.  Owen has been such a trooper.  He seems to be getting used to the feeding tube but he still wants to eat like the rest of us.  It is hard to not let him have anything.  Since pulling the tube out last Thursday we have had no major issues (hopefully we are not jinxing him by saying this).  Owen ventured out to church on Sunday with no trouble.  His spirit is very good considering what he is going through.  The last few days he has been laughing while playing with the kids, he has a great laugh. 

Thought we needed to post some pictures since we had not shown any in a while.  Please keep praying for Owen. 

Elliot in his basketball uniform.  This is Elliot's first basketball season.  He has scored in all three games!



Melissa, Owen, Ansley, Elliot, Iris, Joel





Handsome little man before trip to ER.





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Back so soon?

Yes, it happened, Owen pulled out his NJ tube last night.  Of course I was home by myself with just Iris and Owen.  Joel and Elliot were at basketball and Ansley was at ballet.  So off we went to the ER to have the tube put back in.  After sitting in the ER for 1.5 hours they told me they couldn't do "that" here, we would have to go back down town.  Great!  By this time Joel and Elliot were home.  So I left all the kids with him and off we went to the ER.  I guess that since South had called downtown to find out what we needed to do to fix this problem and told them that we were coming.  I thought they would have someone there that could fix it.  Wrong.  We waited in the ER for 2 hours before they told me that they didn't have anyone from interventional radiology here at this time of night.  (I guess Owen can only pull his tube out Mon. through Fri. 9-5)  So they decided that we should stay over night and they would fix it in the morning.  I was not having any of this.  So then they called surgery down to see if they could place it.  The surgeon was very nice but said that he would try to place the tube but if he felt any resistance that he was going to stop.  He didn't want to risk injuring the "plug".  If he couldn't get it in then we would have to stay all night.  I think I may just keep a bag packed for Owen and I since I feel like this is bound to happen again.  Luckily, he got it in and an hour later we were on our way home.  I had to laugh at the nurse.  She was lecturing me on "Mom, you need to keep this tape on and make sure it doesn't come off again."  After assuring me she had it on tightly, she turned around to take off her gloves and the tape was already coming off.  So I guess it is not as easy as it looks to keep tape on a crying baby.

Anyway, we are back home and I pray that we stay here. 

Update From Home

Sorry for no new photos but it has been crazy around here.  Now that Owen is home we will hopefully get back to somewhat of a normal routine.  Tonight will be Owen's second night at home.  He has been such a trooper.  Last night was so difficult to eat dinner as a family and have Owen not be able to eat.  He is getting his food through the tube but he wants so badly to hold some solid food and feed himself.  This morning we got the other kids up early and fed them before getting Owen up and taking him down stairs.  At lunch time Melissa puts him down for his nap before feeding Elliot and Iris.

The toughest meal is dinner because we eat as a family.  Tonight I sat in the family room on the floor with him and played with toys while the others ate.  Owen just kept trying to scoot towards the kitchen door and holding his hands out in that direction.  Finally I took him in there and let him sit with the family.  Again he is such a trooper.  Hopefully the love we are showering him with is letting him know he is here to stay and nobody is leaving him, this is his home.

Now that Owen is home from the hospital it is time to start worrying about paying the medical bills we know are heading our way.  

Today Iris had an appointment with her opthamalogist and he was excited with how well she is doing.  She is to a point where she can identify things she is looking at so the doctors can make a better determination of what and how much she can see.  However, to add to our financial worries due to medical bills, he wants to schedule her for another surgery.  The surgery will be to correct the cross-eye and nystagmus (eyes dance around).  Doctor wants to correct these issues before summer so she has a few months before school starts to get used to it.

Thanks to our friends and church for providing meals.  This is such a blessing and removes an item from our to do list right now.  Thank you!!!

Out of Surgery - Pray for Healing

Owen is now out of surgery and is back in his room.  He is not comfortable and is letting us know it!  The surgeon told us the procedure went well and he was able to place the plug as needed.  He indicated the opening was accessible which made the placement easy.  The hope now is that his little body will start "scarring" and healing itself.  Pray! Pray! Pray! 

The surgeon informed us that now we wait three weeks and he will look at Owen and see how it looks.  The feeding tube will stay in for this period as it is currently placed (actually goes past his stomach and into his intestine).  If all looks good in three weeks the tube may be moved out into his stomach for a few more weeks.

At the three week check if it looks like it is not healing as expected we will re-admit Owen and start this process over.............  Hopefully not!

We now pray and wait.  Hopefully we are going to take him home tomorrow.  

Sunday Early Afternoon - Eating Again

Just a quick update and a few photos from yesterday.  The feeding tube was turned back on about 1:00pm today so we are happy.  Owen (hopefully) will get to eat via the tube until midnight tonight.  The current plan is for Owen to go into the operating room tomorrow.  However, there may be an organ transplant tomorrow and if that is the case then Owen will have to wait until Tuesday.  We are hoping for tomorrow but we also know that there must be another family somewhere in this hospital hoping they will be in surgery tomorrow!  Either way we are happy there is a plan and we are aware of a possible delay.  If by 1:00pm tomorrow Owen is not called to surgery then the feeding tube will be turned back on and he will wait until Tuesday.

Owen will not have surgery to repair the hole in his esophagus.  The surgeon explained a new procedure they have performed several times with good results.  The procedure will require Owen to be put under but the surgeons will go through his mouth.  They will go in and look at the esophagus and evaluate the hole.  They will then put a "plug" in the opening.  The plug is made from "pig guts" and will hopefully irritate the area and cause scar tissue to start forming.  The idea is the hole will close and the plug will fall out or "dissolve".

We pray this procedure will work and Owen's little body will cooperate as planned.  The surgeon indicated it is possible this procedure may have to be repeated a few times.  If no luck after a few tries we will then discuss surgery to repair the esophagus.

Owen and a few of his cousins.

Owen and the Terrible, Horrible, No Good, Very Bad Night

The night started off reasonably well.  Owen Stayed up later then usual because he had a late nap.  He feel asleep around 11pm.  At 11:15 they came in to check his vitals.  At midnight they came in to start his medicine.  At 1am they came in to stop this medicine.  1:30am Owen started chocking, then began to throw up his feeding.  They came in got him and his bed cleaned up, then restarted his feeding and left the room.  I no sooner got  back in bed and he started throwing up again.  Again they came in to change his bed and stop his tube feeding.  By now it is about 3am.  10 minutes later they came back in to start him on IV fluids.  10 minutes later his IV had blown and they needed to start a new one.  That is always a good time.  Owen doesn't have any luck in the needle stick department.  He always get stuck multiple times before they get it.  Great IV in fluids going.  Back to sleep it is now 4 am.  At 4:30 they came to check his vitals, they can't get his temperature.  20 minutes later they are back to try again.  Owen is having trouble keeping his temperature up.  They want to do a rectal temp.  I flat out said no.  We turned up the temp in the room and added more blankets.  Temp still a little low, they let it go because it is all most time for the doctors to round. 
7am., student doctor comes in and talks with me about our night and states that they will most likely stop his tube feedings and just give IV fluids until after his surgery.  Then I lose it.  I tell her under no circumstances  will his tube feedings be stopped during the day.  I am fine with them stopping it a night but not during the day.  I remind her again that his lab work showed singes of a child going through starvation.  I inform her that that is an unacceptable situation for Owen.  She tells me she will talk to the "team" and "they" will make a decision.  I told her the decision has all ready been made.  So I will be curious to see what the team says.

Please continue to pray for us.  I feel like I am failing him.  Need to go get dressed I don't want to be in my pj's when the team comes.

We are still here

Owen and I are STILL at the hospital.  They ended up moving us downtown to the main children's hospital.  We will most likely be here until Tuesday or Wednesday.  Owen has not had surgery yet.  It has been a major test on my mommy skills.  For those of you who aren't familiar with Owen, he came to us as a failure to thrive child.  He was suffering the effects of starvation and neglect.  He has been doing so well bonding with us.  He was just starting to trust that any time he asked for food I would provide for him.  He was starting to get stronger everyday.  Then Wednesday night he ended up in the ER.  They determined that he has/had a re-fistulation in his trachea/esophagus.  In other words, he can't eat because his food keeps going into his lungs.  Once we got transported downtown and settled into our room it was already after 5pm.  We knew he wasn't going to get surgery that night (Thursday).  We asked if they could feed him by a feeding tube tonight and then get him ready for surgery on Friday.  They said no, it was to risky to feed him even with a tube.  He would not be able to eat until after he had surgery.  OK, while I was not crazy about this answer, I went along with it.  Friday came and we still had no idea if and when he was going to surgery.  Owen was beginning to show signs of shutting down again.  I continued to press every person that entered his room.  They all said they couldn't make the decision of how and when he could eat, surgery needed to make the decision.  Needless to say, I had to go over some heads and demand some answers.  Then a meeting was set up with what I was told was the whole team and we would have a decision.  I knew once the "team" came in the door that surgery was not with them.  Joel and I had to stop them from the same old line.  I told them that we could all go down to surgery and talk to someone or else I was going to make the decision for them.  I would feel him by mouth!  They didn't like this idea at all so amazingly enough surgery was produced and he told me Owen was not on the schedule and the earliest they could do surgery was Monday and that was even a little iffy.  I stated again that that is all well and fine, but my child was eating or we were leaving. 
By 5:30pm Friday night Owen got a feeding tube placed.  Unfortunately we are stuck here until Tuesday or Wednesday.  We are going a little stir crazy but at least he is getting something to fill his tummy.  He is still not happy about not getting to eat by mouth.  So this has been very hard on both of us. 
The other kids are doing well, they sure do miss their little brother.  Joel brought them down on Friday night to visit.  Owen's face light up like a Christmas tree.  He started babbling and waving his hands, kicking his feet.  I really did my heart good to see him smile again.
I just want to thank all my prayer warriors.  If you all would just continue to pray for Owen to feel satisfied with the tube feeding because he may be on if for a while even after the surgery. 
Amy C, thank you so much, you were a Godsend.  You were just what I needed at the lowest point of my day.  You came and filled my spirit.   I know God is here with us and I am now at peace. 
Sorry I can't post any pictures, but I am just lucky to have internet service right now.

A few words from Joel - I do not know what I would do without Melissa.  She is such a wonderful mother and it is amazing to watch how Owen has fallen in love with her and trusts her.  Until about 3:00pm yesterday it had been very frustrating (since Owen did not get any food for 32+ hours!) but Melissa continued to love and comfort him.  She has not left his site since we arrived at the ER.  Owen knows she will never leave him and is always going to take care of him.  It is also wonderful to see Ansely, Elliot and Iris love their little brother.  It is a blessing to hear them say their prayers for him and tell me how they had been praying for Owen throughout the days.

Owen Is Admitted To Hospital

We will follow up with more details later but wanted to let everyone know that Owen was taken to the emergency room last night becuase he was "vomitting and gagging" for an extended period of time.  This was nothing like we have seen in the past and we knew something was wrong.

They quickly determined he was getting oxygen so the immediate scare was subdued.  After a few hours in the emergency room he finally vomitted and then began to get back to normal (for him).  The doctor decided to keep him overnight and have the GI team look at him today.

Melissa just called and they are preparing him for surgery.  He has a hole in his esophagus and food is going into his lungs.  During the surgery they will also be able to see if there are other issues as well. 

We will update you as soon as possible.

And so it begins

So begins the craziness that is life with 4 kids. Joel has gone back to work and the kids have gone back to school. Today was the first time we had to get 4 kids ready for school and out the door by 7:45. Good times! I did it! Everyone one had clothes on and had eaten breakfast. I can't say that I looked good, but hey, I was dressed and my teeth were brushed. That is a start, right?

Owen had the first of many doctor appointments. He is doing well. His first GI appointment is not until the 20th so we have to wonder what is going on a little longer. He seems to be doing better eating. He will eat any and everything you give him. Not everything stays down. Ansley has decided Owen is not that great to set by. She has moved to the other end of the table. Poor thing, she doesn't do well with stuff like that. I did manage to get almost a full bottle of Insure in him today.  I am determined to fatten that boy up.

I even managed to take a shower without anyone to watch Owen, except Iris. I was a little worried about this as Iris may not be so gentle with him. But I had to shower and I didn't dare leave him in his crib for fear Iris would try to get him out. She did really well with him. Praise be to God. Iris made sure that he didn't try to do anything she knows she is not allowed to do. It was pretty funny listening to her tell Owen, "now just sit right here, you have to STAY in mommy's room while she is in the  shower. You can play with these toys but you can't touch the remote or the phone," What a little mother. Gotta go pick up the last child from school and start homework. Wish me luck!



I have to report that I really paid for that bottle of Insure that Owen drank.  After I went to wake him up from his nap so we could go pick up Ansley from school.  I walked into a scene from a horror movie.  The boy had thrown up all over himself and the bed.  He also had a major explosion in his diaper.  I had to throw him in the bathtubs before I could go get Ansley.  So much for that weight I was going to put on him!