Friday, September 20, 2013


First thing first, Jacob is home! He is still pretty sick, but well enough for us to manage it from home. He has a nasty strain of the rhinovirus. The verdict is still out if Jacob has pneumonia or if the x-ray shows multiple mucus plugs. No matter what, he is treated with antibiotics, just in case.
If you follow us closely, you might have noticed that Jacob almost always ends up in the ICU (Intensive Care Unit) for a couple of days with each hospital stay.  The floor nurses and doctors get easily nervous when they realize the amount of care needed when Jacob is acutely ill. They also know how quickly Jacob can get worse. We are today very comfortable to be in the PICU. Over the years, the PICU has changed their philosophy of who is getting treated in the PICU. You don’t need to be intubated and completely sedated to get a PICU bed. Jacob is one of those kids who actually will recover quicker from a hospital stay, if he gets the 1:1 care he gets in the PICU. Ok, I am going to say something I never thought I would say, but I love the attention and care Jacob gets in the PICU when I don’t have to fear for his life (which has been the case a few times in the PICU). I know if Jacob gets dehydrated or he has a fever, it will be taken care of immediately. Not after we first have to wait for the doctor to be located, and then waiting for orders to be entered in the computer, and then for the pharmacy to actually bring up something as simple as a dose of Tylenol. On Sunday night when Jacob was spiking a fever of 104, it took the floor team 2 (!) hours to give him a dose of Tylenol. You can imagine Jacob’s overall status going downhill during 120 minutes of waiting time…I have come to love and admire the PICU staff very much. I feel safe when Jacob is in their care.
This morning it struck me that we have our own hospital at home. When we get up to the regular hospital floor, there is honestly nothing we can’t do at home to manage one of Jacob’s illnesses. All the respiratory equipment in Jacob’s hospital room from bi-pap, smart vest, cough assist, suction machine, pulse ox, and oxygen - we have it all in Jacob’s room.  He has his own mini hospital. By the time the pulmonary team rounded on Jacob, I was honestly ready to go home. I had performed his pulmonary toileting since the respiratory therapist wasn’t available, and I had given Jacob all his meds after they were scanned, I had changed his diaper multiple times, and I had started his morning feed. By the time the round came around, I told them that even if Jacob had been up on the floor for less than 24 hours, I was ready to take him home. I told them that at this point, I would rather do the care at home than in the hospital. They told me I had all the right arguments on my side, so we got discharged. Yeah!
I have gotten so used to Jacob’s room having equipment under his bed, next to his bed, in his bathroom, and in most rooms of our house. Today, I realized we have copied the equipment of a regular hospital room in our own home. It doesn’t make me sad, not any longer. It is what it is. And if anything, it will mean we can get our boy home sooner. And Jacob has not yet had a chance to celebrate Sarah’s 11th birthday. I am hearing we are doing a movie night tomorrow evening with both kids on Jacob’s big bean bag, and that I can’t find in a hospital room at Children's!
Love, Maria.

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