A year from today it all began

I have not posted on here for a long time...since Joshua was in the hospital I think.  For anyone who was following our blog or has been praying for Joshua....I apologize for the lack of updates. .  Life has been rather busy I guess!.... that and our computers have had lots of issues and it is too hard to do a post from my phone as I make too many typos when texting.  We mainly did quick updates on facebook and email via our phone.   Thankfully,  my daughter Haylee has done a few updates here and there.

Getting our tree 2014

I plan to do a post about our Christmas, and about my dear grandfather who past away early December, but TODAY I wanted to post about our special boy Joshua because its been a YEAR to the day that he went into the ER.....not to come home until 4 and half months later.  Seems hard to believe.

 

First night in ER

Sometimes we just shudder when we think about the nightmare we went through. We had no idea when we took him in....concerned he was dehydrated from not drinking his bottles very well when he was sick......that he would do a downward spiral and suddenly be fighting for his life.  No idea what so ever.

Christmas 2013

Nor did we know that we would look at Christmas photos of him and yearn so much to have that back.   As we celebrated this Christmas, it was with extra joy for our family as we thank God for Joshua's amazing recovery.  I will share pictures of how far he's come below.

To recap what happened,  when he was brought into the ER we were told his bowels were obstructed. So after allowing that to pass and getting IV fluids, when he still would not take a bottle, they put an NG tube in so he could get better nutrition. JOSHUA COULD  NOT HANDLE THIS.  He has a very strong gag reflex, has severe cognitive disability, reflux and he has a stridor when he cries hard......so he freaked out,.....started vomiting mucous (lead to pneumonia in both lungs) and went into respiratory distress.

He had to be put on oxygen, intubated and ended up on a ventilator....then a special oscillating ventilator....each thing added because he was not under control.  He ended up also having the flu, and getting septic.....and required 4 chest tubes at one time due to pnuemothoraxes (hole in the lung due to the pressure of the oscillating ventilator that was keeping him alive).  Lots of heavy meds to keep him sedated, ivs running constantly, blood transfusions....I don't remember what else.  Basically his body was shutting down......and we brought the whole family in several times when it looked like he may not make it.

Daddy's boy

sister Haylee with Joshua

                      With all his stuffed animals

Sweet boy

BUT the amazing PICU team at Chippenham hospital gave him great care and kept trying one thing more.....

AND so many people--many that we will never know, even from across the world, were PRAYING for our son.

Our son, who just 4 years earlier was an orphan spending all his time in a bare crib, having been abandoned by his parents at the maternity ward because he is physically and cognitively disabled (missing part of his 14th chromosome which).  The caregivers there took good care of him, as best they could with 30 other kids and not knowing that the special care he needed.....but no one to really love him or care for him.

Joshua in his crib at the orphanage

Pushing Joshua around at the orphanage

Naomi with Joshua the day we got him out of the orphanage

  It blessed me beyond words that so many people were storming Heaven on his behalf!

And Joshua began improving!! His vitals stabilized  and oxygen levels became high enough to move back to the regular ventilator. He was able to get a tracheostomy tube so that he wouldn't have to be intubated and heavily sedated/paralyzed with heavy meds.  Because he metabolizeds meds so quickly he was on higher doses of meds than you or I could handle.  Finally he got to be awake and we got to see his blue eyes! He could move around and get stronger.

First time he opened his eyes

Meds were adjusted to he could deal with the withdrawal symptoms from coming off high doses of medicines. He got a g-tube so he could get better nutrition.....and he gained twice is weight!  And his settings on the ventilator gradually came down.  He got so stable they wanted to send him home...still on the vent, which I wasn't feeling too comfortable with but learned how to do it all to prepare for caring for him at home (my husband and my 2 oldest daughters as well). We got the house ready....moved all the kids around so he could have his own room.....had an electrician put in extra outlets that would support his ventilator, concentrator and compressor machines.

But we had to wait on insurance and on finding in home nursing for  him to be able to come home.  An extra month or so.  During this (rather frustrating) time, the PICU doctor decided to see how he did off the ventilator....and he did fine for a few hours....which soon turned into all day! Then a while later, they tried him off the vent at night.....and he never went back on! So, he finally came home in May with a trach, humidified trach collar and oxygen, and gtube. Even though I was scared to not have the security of the ventilator if he had trouble, it was a blessing that he progressed that far before coming home.

Joshua came home with 16 hours of in home nursing approved.....The Adamson crew had to get used to having a nurse in our home during the day from 8-3 each day, which was a big help so that I could attend to the other 8 kids and their schooling.   We didn't have a night nurse though for quite a while....months....during which John and I and our 3 oldest took shifts through the night.  EXHAUSTING!  No one was 100 %... except all the littles that got a good sleep! ha! Thankfully, we ended up finding a good nurse to come 3 nights a week, and months later found another good nurse so most nights were eventually covered.  What a blessing to finally get a good night sleep--at least a few nights a week.

Getting loved on by his sisters

Capping trial and nail trim....great oxygen level!

Joshua progressed to having just a little piece on his trach that provided a little humification that attached to oxygen, then to less and less oxygen, then to a speaking valve with no humidification, and finally to trials where his trach was capped. After that, he had a 2 night stay at the PICU at VCU (unfortunately we couldn't take him to Chippenham because our pulmonologist and ENT are at VCU) where they capped him overnight, and then took the trach out the next day and watched him overnight.  He did great apart from a few times his oxygen level went down....and was able to come home with back up oxygen and  night nursing to monitor him as he sleeps. 

Look....no trach!

Since coming home with no trach, Joshua has done amazingly. He has had times when his oxygen levels drop --usually while sleeping-- but it has happened less and less, and usually it will go right back up. Sometimes he needs to be repositioned.  He has to continue to wear is oxygen/heartrate  monitor.  If it doesn't resolve it may be that he needs a sleep study though Joshua would not tolerate a sleep apnea machine....as he is a very light sleeper, moves constantly if awake, and already gets agitated with the nebulizer mask.  He would have to be sedated, which I learned they don't usually do when on the apnea machines.   Please pray that he will continue to improve and not have lasting issues with this.

Relaxing by the Christmas tree

Joshua's smile that we love so much

This has been quite a year....hard for all our family but also good.  While I would never wish that on anyone nor want to repeat it, I can see many blessings God gave us through it.  We are more thankful. We even more cherish together time.  We learned to humbly accept help. My kids had to pull together and learned to be patient.  We learned we love our Joshua even more than we could imagine, and know that he is such a gift to us.

When we thought we were losing him, I remember praying and asking God to please let us love and care for him again...and that I'd do whatever it takes.  You never know what you can do for someone you love until you have to. I was suddenly in a subculture, trying to learn from other moms with trach and gtube babies.  I was amazed by these amazing mommies and daddies and all the incredible things they do everyday caring for their special, medically fragile babes...often from birth. Suddenly my "old" life caring for 9 pretty healthy kids seemed so easy.

We were also blessed by the people who helped Joshua. For the incredible nurses and doctors who gave our son the highest technological medical treatment, treated him with love and respect, and didn't give up.  Friends and family who gave our family  their time, service, and financial help. The greatest of all.....seeing God provide for us, carry us through, and restore the life of our son. One doctor told us Joshua was in the top 10 miracles of his PICU career.

 Christmas 2014....together!

Thank you for caring and for praying! May God bless you in 2014!