On Friday January 2nd we had a meeting with Juliana's surgeon. He said that he didn't fell that Juliana was ready for surgery and to send her home till she was ready. This was the best news ever. On Monday January 5th Juliana's eye doctor called me and said Juliana needs another eye surgery (left eye only). Not only does she need surgery but she needs to be transferred to another hospital for the procedure. So the next day she is transferred to Mass General, spent the night on the pediatric floor, left to Mass Eye and Ear for the surgery, and was them admitted to the PICU for an overnight stay. By Thursday we were back at Children's on a half liter of Oxygen but not intubated which is great. Late Thursday evening (early Friday) she was sent down to the PICU because her oxygen went up to 2.5 liters. Turns out she caught Klebsiella Pneumonia from the intubation for the eye surgery. There goes all hopes of going home out the door. Fortunately Juliana is tough and fought through the pneumonia and by the end of the week she was back to normal (well almost normal). The pneumonia cleared but still more bad news. She had a follow up check up from her surgery and it was unsuccessful. The retina is still detaching and she may lose vision in her left eye. The surgeon is not ready to give up that eye yet but doesn't plan on doing any thing in the very near future.
We scheduled another meeting for Friday the 23rd to discuss discharge for Juliana. I was totally expecting to walk in and hear everyone say that Juliana was just not ready to go home. my insurance covers limited amounts of private duty nursing which was up for discussion even though I didn't feel it was an issue. Much to my surprise the exact opposite happened. Due to the events of the last couple of weeks her surgeon felt more confident than ever that Juliana needed to go home and wait it out. He is completely sure that she is not ready for another surgery and just needs to grow. The care coordinator felt confident enough to agree that she would receive adequate care at home even with limited nursing. So two weeks is the goal. my birthday is in two weeks so everyone is working to make sure that she goes home on or before that date. We are super excited and I finally feel confident enough to share these plans with everyone. I was afraid to say something out of fear that something would backfire and my fears were confirmed when we ended up back in the ICU even if it was for less than 24 hours.
Now she is doing very well. She is so interactive and we can't wait to have her home. It will be a very hard adjustment as she still is very fragile in terms of her immune system and does require a lot of medical care. I have been training all month (and most of her life) to care for all of her medical needs. The only thing left to do is to meet with infection control. We have been getting shipments of medical supplies for her. All of her meds have been changed to oral instead of intravenous, her omegaven now only runs at night, we have the O2 tanks to bring her home with as well as a portable monitor. We are so close but still it seems so far off. This week she will have another swallow study done to see if she can tolerate regular liquids instead of thickened liquids. She will also have a sleep study to check for apnea spells and a ph study to determine if she has a reflux issues. All of these studies are just precautionary and will better prepare us to take her home. Once these are all complete she will have a car seat test done and we should be on our way.
Hopefully there will be no unexpected events and she will come home as planned. It is very important to us that Juliana gets to live a normal (or somewhat normal life) at home with her family. She needs to know that there is more to life than the hospital. Please continue to pray for her health.
