When I was younger my mom always told me that when I was being created that I did not wait in the line that was handing out patience long enough because I am so impatient! This is so true, I am the most impatient person and I tend to throw fits when things don't go my way. Becoming a parent to Isabell tought a few things about patuence, but I was still very impatient!
When William was born- somehow someway I became so patient and calm. I had to. To understand and deal with the stress, worry and dissapointment life brought me- I had to be calm and patient. I had to keep myself together so I could learn all about my fragile little 2 pound 14 oz newborn baby boy with multiple congenital anomolies. I had to be positive. In order to stay positive, I tried to just take in all the good things I was surrounded by- my Husband, daughter, and precious little boy who was the sweetest and cutest little 2 pound 14 ouncer ever. My family. My friends. The wonderful and life saving medical team I chose for my son. All these things were and are something to be thankful for, and happy about. So at once, there was no other option but to ride through this mess on a happy, positive, and patient note.
Now one year later. William's health has led us down a path that we had totally unexpected. I guess you can say that about William- we do not know what to expect with him. BUT this time last year we did not for see 15 hospitalizations and 7 surgeries to occur. Most of the hospitalizations have been related to respiratory distress and after 1 year of so much respiratory distress William's diaphragm is weakened and he now is on an even higher flow of oxygen as of November 2010. His lung damage can relate to COPD. The fortunate thing in William's case, is damaged mungs rebuild tissue in the first 7 years of life. So although the damage is done, he has a chance to overcome his respiratory weakness. So when people see me and see my positive and happy image- this is why. Its because I have to be- there is no other way to be other than miserable and I do not want to be miserable. Again, we have so much to be happy about and thankful for. Each and every hospitalization does take a toll on us as a family, but for William we will do anything. Richie and I have said a million times- if we could take on all his health issues we would in a heartbeat so he didn't have to have another surgery or hospitalization. But on the upside, we have the tougest little boy I have ever met, and he is such a fighter!
Today, we checked back into Phoenix Children's Hospital as William spiked a fever of 104.5 and was congested requiring more oxygen. His body is too weak to overcome illness at home. Especially if he has an underlying issue causing the symptoms. This is when the hospital becomes our best friend- to draw labs, and determine if he has an infection and to check his overall blood enzymes. This will tell us what to treat, and if he needs any special fluids or antibiotics intravenously.
So we were home for 1 week with the little buddy. It has been a very overwhelming week because Isabell is sick with a terrible cold. Keeping William isolated from her is impossible. I had to keep her home from school all week, and her attention span was as long as a toothpick. And she had a fever, has a terrible cough and runny nose. With her lack of attention, she would just roam all around the house whining and coughing and wiping her nose and wiping her germs all over the house. I kept William on lock down- up elevated in his crib at all times trying to keep her away from him. BUT everytine I would turn around she was near his darn crib trying to see what bubba was up to. It was hard because she was not in trouble, but I had to keep getting on to her about staying away from bubba. And this was hard for her to understand. Usually she is allowed to play with bubba all day and all of a sudden she was feeling icky and mommy kept yelling to stay away from brother. So on Wednesday Isabell was getting worse and I had gotten so overwhelmed and my patience was non existent. I had to call for help from my re-enforcements. My hubby flew in from CA and my mom came rushing over. And on Thursday Richie flew back to CA but my brother's job got snowed out up north and he has been home which has been nice.
This morning we were having a good morning, and William was feeling good and playful until 9AM when a fever of 104 and vomiting hit him like a Mack Truck. He had a real hard time settling down needing more oxygen and that is what led us to PCH.
All his labs are looking ok right now, and his cultures are still pending. Still waiting on urine. At this point, we are looking like we are homeward bound, in hopes for him to feel better.
I will have more updates at a later date!
Crystal
“Patience is the ability to idle your motor when you feel like stripping your gears.” Barbara Johnson
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