SMILES

We are finally up on the 8th floor after 10 days in the ICU. I have never felt so good being in a regular hospital room! There is no other way to put it, the ICU is its own experience!
The ICU team got really attached to us, and so did we. The doctor ran after me to give me a hug before we left. His nurse put her down as Jacob's primary nurse, so whenever he comes back and she works, she will be his nurse. The ICU experience from a medical team perspective was excellent.
After having been weaned off all the drugs in addition to the breathing tube, and not needing all lines, we're finally here tonight.
The biggest thing is for Jacob to recover from his pneumonia, and finish his course of IV antibiotics. His breathing is still pretty labored, and he has so much secretions. We feel between Joakim, my dad, and me that we suction him all the time. He has also withdrawal from the drugs, so he literally doesn't sleep. He is getting some meds stronger than Benadryl tonight in order to hopefully at least get a few hours sleep.
As it looks tonight, Jacob is coming home some time over the weekend. It's something I don't think I have ever wanted so strongly as this time. At the same time, I have never been so scared to bring him home as this time. We were very close to loosing Jacob last week, and all three of his main doctors have told us that this is the "beginning of the end". Jacob's immune system is simply so extremely weak, and we just don't know what the next infection will do to his body, how his breathing will do, and there are also large concerns about Jacob's swallowing function. I hear the words "beginning of the end" in my head as a ringing bell. It is still really hard to grasp. It's hard when your child looks at you with smiles from cheek to cheek, or when he joins into our laughs about a silly story that his doctor told us tonight. It just feels so unreal.
Both Joakim and I are thinking we have to do the most of the time that is left, and no one knows what the time line is. Is it a few weeks, the summer, until the next respiratory season? No one knows, anyone's guess is as good as mine. I am telling myself that Jacob will let us know, and he is a very strong fighter. The only problem is that I will never be ready.
Tonight, I am listening to his breathing, since he actually fell asleep a few minutes ago. I realize that I'm so lucky to have him, and that I am ready to do whatever it takes. I guess that's the love of a mom.
Love, Maria.