A very long, unexpected week...

Last week was one of the longest and most stressful weeks we have had in quite some time. Tuesday afternoon, Sophie's cough had picked up. She had started having coughing spells Saturday but they were hit and miss. Tuesday these coughing spells were coming full force. While eating her dinner Tuesday evening, Sophia had a coughing spell that causes her to cough so hard she's gagging and the gagging caused her to vomit. The vomit led to a whole world of problems because Sophia is now on trach collar. Trach collar means her trach (the actual opening into her airway) is exposed to the elements. When she threw up, everything ran right back down into her airway. Thank God we have suctioning we were able to get a lot out right away. We then immediately changed her trach to avoid it clogging off. When we pulled the trach out more formula came out of her neck. We continued to suction her regularly for a few hours. She had seems better. Then a few hours later I noticed she felt warm. She had a low grade temp so I gave her some Tylenol. Moments later she was having another coughing spell followed by vomit. I rechecked her temp and it had reached 103. I called my husband and off we went to the Riley ER. I called the doctors on our way to the hospital and they got us back immediately in the ER. They took her for Xrays and had urine and blood labs drawn. We waited in the ER room until 5:30 am. They then told us they were admitting Sophia for possible pneumonia with aspiration. We waited until 6:30 am until we were able to get a room in the PICU. That was a very restless night for all three of us. We tried desperately to keep Sophia comfortable to allow her some sleep but with labs and blood draws and doctors it made it hard on her. John and I didn't sleep. Wednesday Sophia was able to sleep and sleep she did. Poor thing literally slept all day. Sleep was good. John and I managed a few hours in the chairs in her room Wednesday night. Thursday came around and we were hoping for a discharge but that morning Sophia developed a rash that spread over her whole body and diarrhea. They believed it was a result of her antibiotics. Instead of discharging us, they wanted to keep us another night and watch her closely as a result of the new symptoms. However, they did move us out of the PICU to the floors on the new part of Riley. Holy cow, it was like night and day comparing the new addition to Riley to where we had previously stated for 110 days. Our room was huge and private. We had a SHOWER!!! Yes, that was my first shower of the week. It was glorious! It had a couch and a cot and tvs and a fridge and a WII. What it was like staying in a hotel lol. John and I got some rest..sorta. That night John was up and down again with Sophia because her breathing treatments made her restless and fussy. He let me sleep, sorta. Wonderful. I got up early with her the next morning and let John sleep. At this point we were mentally, emotionally, and physically wiped out. The bickering began. Luckily for us, we realize why and we try and let it go and focus on the important things. Friday rolled around and the asked to keep us another night because of her rash. I just wanted to make it go away. Finally they changed her meds and I asked for some Aquaphor. Aquaphor is the BEST thing ever. Future and new parents I highly recommend you keep some on hand. It is great for all types of skin issues. I lathered her in it for the night and by morning Saturday (as well as a result of med changes) her rash was improving and her respiratory issues were stable. Finally, that evening they discharged Sophia and we were able to take her home again. So that makes a total of 115 nights we have spent in Riley. I am so glad we reacted fast and got her into the ER. I knew on the drive we would be admitted because of the nature of Sophia's health. I would much later be in the hospital and nothing happen than at home and something bad happen. Any little cold may land us in the hospital. So let me make a friendly public health announcement, a cold that seems minor or insignificant to you may knock Sophia off her feet. If you have been sick, around someone that has been sick, sniffling, coughing, have not finished your antibiotics etc. please do not come visit our home until you are back to 100%. This is very serious business and I would prefer not to keep tallying up our days/nights spent at Riley. I know many of you are aware of this and it seems like a DUH statement, but as mommy I have to remember to reinforce the matter. HAND WASHING, its the knew cool thing to do:) So for now, Sophia is back to smiling and playing. We still have a slight cough and our working through it with continued meds and breathing treatments. Luckily, the little fighter did not let this bug set her back on the trach collar. She is so tough! God loves her and mommy and daddy too.