Don't take my tonsils out of my ears...

Miss Emily has been suffering with enlarged tonsils for quite some time now.  Last January, at the young age of 18 months; she required an adenoidectomy.  After having a bronchoscopy we learned that she needed her tonsils out as well.  However, 18 months is a very young age to have adenoids out and it is definitely too young to have both removed.  So we proceeded with the adenoidectomy.  Now, a year later, she is still plagued with fatigue from not sleeping well throughout her nights. Her tonsils were such a large obstruction in her airway that they needed to be removed.  We have high hopes that this will correct a lot of issues.  It was suggested to us that perhaps she does not have Asthma but in fact her intake of oxygen is just hindered from the obstruction.

Not the best picture to capture the size, but it gives you an idea.

I was more nervous going into this operation than any other time.  Mainly because of the unfortunate events that took place in Josiah being extubated in January.  When you stand bedside to your child going in and out of consciousness in recovery, you become anxious to future medical procedures.

I had prepared Emily as best I could.  Telling her imaginative stories and turning a scary surgery into a walk through a dreamland fairytale.  Her only concern was, "Dr. Salley isnt going to take my tonsils out through my ears right?"  He assured her he would leave her ears alone :)   She will forever have the day burned into her memory, that Dr. Salley removed the impacted wax from her ear canal.  She was not fond of that moment and lost confidence in the Dr. that mommy and daddy love and trust!

So She had the tonsillectomy Thursday February 24th.  She had the full attention of all the doctors, anesthesiologists and each nurse during the procedure and in the progressive care unit.  Each medical professional was on their guard as they had been informed of her Apnea history.  In past procedures her oxygen saturation had dropped substantially and this was something they were also aware of.

Before Surgery

 Dr. Salley removed the tonsils and when he checked the adenoids he saw that they too had re-growth.  He burned those off as well.  She did wonderfully throughout the entire procedure and recovery.  I was a proud mama to be told she was "best child of the day" haha The tonsils were sent to the lab to be checked for abnormalities, as a precaution. Dr. Salley said they were even larger than they looked and he knew they looked pretty large before removing.  An hour after surgery she was eating popsicles and drinking tea.

1 hour after surgery

Now, 2 days later she is feeling worse.  On Tylenol with Codeine every 4-5 hours, she is in as little pain as we can help.  It shows as the medication is wearing off, she starts to hurt a lot more.  She is not wanting to eat or drink, but with some coaxing we manage to get enough in her to keep her hydrated.  A very sleepy and whiny little girl we have, wanting my constant TLC.  Which I am so willing to give!

pitiful little baby

2 lbs 2 inches 2 months

6 Months

It is impossible to put a price on our children, that much is true.  If we could put an amount to them everyone would be astonished at the running total.  We are blessed to have insurance and an income and grateful for payment plans with providers.  I have accepted that we will never be free of medical debt and even if our checking account isn't full our hearts are!  Children are such a blessing, healthy or not.  I believe our children are testimonies of God's love and his plan for each of us.  He will provide for us and we will never be given more than we can handle. This will all be a distant memory soon and the medical bills will eventually stop coming in!

One less piece of medical equipment to pay for monthly.  Josiah has been discharged of his feeding pump.  He is taking all feedings through the bottle!  His G-tube is still being used after each feeding to "burp" him.  Not being able to burp on his own, we have to release the air through his button.

Another huge milestone for Strong Man; his doctor has ordered that we must start him on solids.  I was very reluctant to start this process, however, she expressed to me that there is a small window of opportunity in 4-6 months.  If we held off on introducing these foods he could develop a feeding aversion.  The last thing we need is to further complicate his feeding progress.  So, with that being said I am happy to report that Mr. Josiah enjoys his food!

We started him on sweet potatoes.  The 3rd attempt was when it "clicked" and now he is doing great!

Sport'n his "rocker wear

His 6 month check up went well.  He now weighs 13lbs 1.5oz which puts him in the 1st percentile for weight.  For those of you who do not have an understanding of percentile; basically 50th percentile would be "average size".  So by weight, 99% of babies Josiah's age are bigger than him. HAHA  He is 25.5" long (17th percentile).  He has gained 2 lbs and 2 inches in 2 months!

Other than his inability to burp, his only issue is the granulation tissue that keeps developing around his tube.  We have to keep getting it cauterized.  It is so painful for him and makes him miserable the entire day.  There is nothing we can do, outside of what we are doing, to keep this from happening and only time will cure it.

I know this kid has made many cry, now it is time for a laugh!!

He is such a strong little guy and is this family, you have no other choice!  I am doing a separate post in reference to his strong sissy's most recent procedure.

Bittersweet Maturity

My apologies for letting so much time pass between posts!  Josiah is now weighing almost 13 lbs.  This is such a bittersweet milestone of maturity for us.  I am excited over the much anticipated growth, yet at the same time, the realization that my baby is getting bigger is a certain sadness any mom can relate to.  He has found his little feet and grasps at them with his chunky, dimpled little hands.  Just another action that brings a smile to my face and joy to my heart.  With swollen little gums, it is apparent that there are pearly whites ready to pop out in the near future.  Josiah has become more active and alert and engages with his surroundings.  He has already learned a defense against his predators... aka: sissy!  Pulling hair and pinching cheeks is his form of protection to force Emily to retract.  She will tell you "sometimes I love my brother so much, I have to go to time out".  The two certainly have quite the connection, he loves to look at her and "talk" to her and she loves to smother him in kisses and mother him with love.

Granulation tissue is still our biggest issue right now.  We were back at the Dr. Monday after his home care nurse (and girlfriend hehe) suggested that it may be infected.  He is on Bactrim, an antibiotic that is given twice a day.  I felt guilty that he was in pain and there was something I could have done to prevent this.  However, his Dr. assured me that there is nothing further I can administer to him in prevention.  We clean the wound once a day and change the dressing twice a day.  She said it takes a few months for the skin to "toughen up" to the foreign object and the open wound.  We are going to the Children's Hospital this afternoon, where he will have to have it cauterized again.  I am dreading this procedure, yet I know it will make such a positive difference in his healing.  This will be the 2nd time with the silver nitrate. 

a small amount of granulation tissue, around his G-tube.  It has spread out further and now bleeds.

 Friday morning when I was cleaning his site, the tube pulled straight out!  There is a balloon on the inside that hold the tube in place.  It is known to deflate or pop and come out.  There is such a short time frame in getting the piece back in, before the opening starts to close.  We have been warned on all the bad things that can happen from the tube backing out.  Such as the stomach detaching itself from the abdomen and/or the site closing quickly.  I wrapped the site and got him straight to the E.R.  Bringing along my own back up tube and supplies I was prepared for the procedure.  All I needed was a trained professional to insert it.  Once the Dr. began it became clear that the tube was not "sliding in" as expected.  They had to dilate the site to get it in.  There were a lot of tears, screams and blood.  Nothing to numb the pain, except the singing and cuddling of this mama.  After she placed the tube back in she inflated it with air.  I was concerned by this, as it was explained to me that you never inflate with air.  Air can escape and the tube will not be secured in place.  I was told that it should be inflated with water.  I am normally the quiet type and never try to tell someone how to do their job.  When its my child, I become a totally different person!  After contemplation I could not fight back the concerns so I went into the ER physicians office and expressed to her my understandings. It appeared she was almost embarrassed for her misapplication and was very apologetic.  She then ordered one of the nurses to retract the air and administer 5mls of sterile water.  He was back to eating a couple hours later.  He is the most resilient person I have ever known. NOTE: I am now trained in how to insert a new tube myself, at home.

The shot Strong Man was getting every 4 weeks is called Synagis http://www.synagis.com/    As of January 1st, we had some insurance changes like most Americans and now the very important vaccine is not covered under our provider.  To pay for the shot out of pocket, would cost over $1500 every month.  More than our mortgage!  It is not 100% affective against the virus and his Dr. said it would not be worth the cost, when there is nothing that is 100%.  Well, prayer is the only thing I know of that is 100% affective and it is paid for :-)  We will continue to pray for his health and that he remains resistant to the virus and any other bug or infection which would jeopardize his lung function.

Mr. Josiah will be 6 months old on Sunday!!  We have endured so much in the past 8 months (considering the complications during gestation.) It leaves me inspired to look back on where we have come from in such a short time frame!