Breathing Better But a Bit Bothersome

Joseph and his bionic nose

Joseph was able to go home the day of surgery at 6PM. That was a good thing as it is easier to care for him at home. Today (Thursday) he has been cranky and it is challenging to keep the new tubes clear because he cannot stand to have them touched and he fights pretty hard. He is a fighter but we do not want him to fight us. Mary has been incredibly patient and now knows more than she ever wanted to about suctioning goop out of a child's nose!

Once again we owe so much to so many--the doctors, nurses, staff, the children's school, our family, friends, and many more. A special thanks to Christina at the hospital who brought us breakfast and lunch and to Autumn who brought us coffee as we waited for Joseph to get out of surgery. Joseph has conquered 5 surgeries with a few more to go and he is very strong and has proven his resilience. Having gone through it with him, those reading this blog are stronger as well. That is a great accomplishment for all!

still humbled,

Kenny

surgery went well

Joseph is out of surgery and it went well. He has new larger nasal tubes and is breathing through them like a champ.

Nasal Tubes--The New Fashion Statement!

Joseph will once again be a trendsetter and will soon be sporting new, larger, classic, and aero-dynamic NASAL TUBES! Yes, they are coming back in style after just a few weeks. They will be installed on Wednesday morning. Look for Joseph on the cover of Gerber Weekly and Fashon Babies. All the kids will want them his summer!

OK seriously now-----

Joseph will have his fifth surgery this Wednesday. He cannot get enough air in through his nose and babies need some air in order to feed properly and to thrive. We have tried all the tricks but it is very frustrating to feed him and he tries so hard that he burns about as many calories when eating as he is taking in. This does not let him eat properly and he has lost some weight.

The surgeon will open up his nasal passageways and then will put the reliable tubes back in place. They will be in for about 3 months before this set is retired. If the surgeon can get the passagways open up some more and if the tubes allow him to eat well and thrive then he should be in good shape when they are taken out. In this video clip you can hear his nasal breathing right at the beginning:

It is just not good enough airflow to get by. You can also see how happy he is. With everything he has been through he remains happy and he is very good natured. He still sleeps through the night and overall he is doing well. He just needs to breathe better!

Joseph jabbers all the time but for the record he nows says DADA regularly(well once to be exact.) Never mind that I say it to him a thousand times a day-- He still said DADA and this video proves it:

Joseph will be in the hospital over-night this time. It is a tougher surgery so they want to observe him longer after surgery. It will be a long week but we will get through it! Thanks for keeping the faith. Since I owe a few pictures I am going to close this blog with several of them. Enjoy, and keep us in your prayers--you continue to be in ours.

Kenny

Still a journey

Today February 12, Joseph is six months old. His half birthday. It has been an amazing journey and it will continue on for quite some time. I remember when he was about 4 weeks old and he was still in the hospital. Some friends asked us when they could see him and I replied, "not until at least 2008." They were shocked because it had not really sunk in how we would have to keep him out of circulation. It kind of shocked me too. Maybe we are over protective but until we hear one of the doctors say, "they surgery went much better than expected." we are going to stay a little gun shy. I think that not hearing that line has been our biggest frustration. Each surgery has been a step forward but not the leap forward we hope for. This last surgery has proven to be the same. It is progress but now there are other issues.
Joseph is having a tough time breathing out his tube free nose. It is hard for him to eat and sleep so he is a bit less happy and we are a bit more frustrated with the effort it takes for him to feed. He has to stop and start constantly to catch his breath. Watching him eat actually makes us breath harder as we try to will more air into him. We saw the doctor on the 11th and he gave us a few more tricks to try to help Joseph tough it out. If it gets worse or if Joseph starts losing weight, he will go back in surgery to have new tubes put back in. That will allow him to eat better, but it will mean an additional surgery to remove them once again. Each surgery is tough on him and tough on us. (But they tell us that the tenth surgery is free--as long as we have our card punched!)
I learned to like the tubes that Joseph had for 5 1/2 months. They were easy to keep clear and he tolerated them very well. But I was so glad to see them go. Now we are facing the prospect of having them return. That is not our goal. We are going to do all we can to keep him tube free. So we ask you once again to keep him in your prayers. This child has taught us so much. He has also confused us so throughly at times. I have a few questions for God that I hope will be answered some day--but for now we are content to continue the journey with all of you walking along with us.
HAPPY HALF BIRTHDAY JOSEPH!
Someday he will read that and know how he has been loved from the start.

In gratitude,

Kenny

p.s. Come back soon and I will have some more pictures