Strength for the Climb

My blog is a personal journey of the blessings I have been entrusted with and the strength I have been given to make the climb. I invite you to follow along as I write about faith, family, and Down syndrome.

Oxygen

So I was hoping to post pictures of Luke & Jack's birthday parties but it looks like Jack partied too hard and we landed a recovery vacation at Children's hospital.

On Sunday evening, Jack woke up with an extremely high temperature.  We gave him some tylenol and this was the last night he slept in his crib.  He was starting to cough and every time he would, he would vomit.  On Monday he seemed to be very lethargic and tired.  He wouldn't really sleep unless I was holding him.  Later that afternoon I took him to the doctor and they tested him for the flu which came back negative.  He threw up again and his temp continually was around 103 throughout the day, peaking at 104.  His doctor was not working that day and the doctor we saw said he had an ear infection and potentially RSV.  She sent us home with a plan that included two neb treatments, twice a day, and an antibiotic.

On Tuesday, he seemed to be doing better until about 4:30 and then significantly declined.  His doctor asked that we go down to the ER to check his oxygen levels and if he was having signs of dehydration.  The Xray showed that he had pneumonia.  The doctor also came back saying he tested positive for RSV also.  That would explain why his temps were consistently high.  It is said that RSV runs it's course and it can be up to a week before the temperature comes down.  This has made him completely uncomfortable and he has refused to sleep unless we are holding him.

They released him from the ER because his oxygen levels were 97 which was an excellent number (100 is perfect).  We were told to follow up each day with our doctor which I did on Wednesday.  At that appointment he was at 95 and we went over his symptoms.  He ordered a test of his oxygen on Thursday morning and follow up x-ray.

Each evening was very long, slept in a chair or with him laying on my chest, elevated in bed.  We all are so tired.  We rolled out of bed and headed to the doctor where his oxygen levels were anywhere from low 90s down to 79.  He said that if we don't give him a neb treatment he would be sent via ambulance to the ER.  So off Jack and I went to downtown St. Paul, to Children's hospital.


In the ER the readings were very similar and they admitted him immediately.  His temp soared to 105 and it took the nurses 8 pokes before finding an vein that would work for his IV. That was not a highlight for Jack's mama.  Ugh.

Our hospital stay has been pretty good, a few frustrations, but most importantly our focus is on Jack's improvement.  He works much harder at what most of us take for granted...example: coughing.  When we have a cold, it's very easy for us to cough up mucus and clear our airway and it takes everything in Jack to clear all the 'junk' out which is effecting his ability to inhale oxygen.  His lungs are working diligently and with also having pneumonia along with RSV, this kid is a fighter.

He has decreased his dependence on oxygen support, occasionally going to room air (which is what we breathe at...which is 21%) and then sometimes needs to go back up to 25 or 30%.  I have realized I can't control when or what the next few days look like, which reminds me that all I need to do is pray for his strength and health and give him a little extra love!



I am very grateful to Chris' parents for taking care of Luke.  We have alternated going home for a few hours to spend some one on one time with him.  I can't tell you how much I love Luke and his  personality.  He is hilarious.  He lifted his binoculars and told me yesterday we were going on an adventure.  I cried when I had to leave and go back to the hospital.  I can't wait for us all to be home.



Jack has the hardest time at night.  They were waking him up to give him neb treatments that had a medicine in it that makes the him cough...which is not fun to any person that has been sleeping for a few hours.  He then is so irritated, he tries to rip out his oxygen, and has taken hours to get back to sleep.  I had a meltdown last night and just cried while I tried to calm him down.  The nurses we have had have been awesome and last night I would declare as an angel.  She rocked Jack to sleep and we got 7 hours of sleep!


What do our days look like in the hospital?  Well, Jack's radius is about a two foot cord, so he hasn't seen much of the hospital. ;)  The rooms are so nice, they just remodeled last winter and it really kind of feels like we are in a hotel.  Jack sits on his bed and plays with toys and we sing songs, play patty cake, and read books.  His appetite came back a little bit today and he was eating his favorite food, avocados!  It was such a beautiful day today and I had the pleasure of sharing a devotional at a soon-to-be mama of a precious girl, who also happens to have an extra special chromosome.  Jack can not wait to meet this baby girl.

Along with getting out today, I went for a run.  Children's is near one of the steepest hills in the cities, Grand Ave hill.  (Katie-it's nothing like what we did at the Nike Women's Marathon though ;))  I knew I was up for a challenge and since running is my free therapy, I thought, what the heck?  I'm lacking in sleep and exhausted but no hill's going to stop me!



As my lungs were burning after conquering that hill, all I could think about is the fact that my sweet precious boy was working that hard simply just to breathe.  How many times do I take for granted the simple tasks that many others work so hard to do?