When I last posted, I thought that surely the bad and busy was almost behind us, boy was I wrong.
One week ago today, baby boy had surgery. This time, to correct his other cataracts and to correct his trachea. It was intended that this would allow him to breath and eat more easily. However, surgery lead to it's own complications:
During his surgery his blood pressure and heart rate dropped significantly. That's very uncommon so they ran multiple tests and determined it was most likely an adverse reaction to anesthesia that should be noted if ever he goes into surgery again. As a result, he spent Thursday night in the PICU and was on the ventilator until that night.
While I was with him in the PICU Tanner got a phone call from his sergeant stating that he was to report to drill the next morning 10/31-11/9!!!!! It totally came out of nowhere!! I am SO SICK OF THE ARMY!!
Thursday night and Friday morning he appeared to be doing well, but he failed a swallow study that morning which has lead them to believe he's been aspirating his milk which has caused him to develop symptoms similar to pneumonia. So, they moved him to general admittance to get a barium swallow study to see if that was the case. However, when he got to general, his health took an immediate turn for the worse. He could not breath and at one point turned blue. The nurses and four doctors worked on him for 2 1/2 hours straight to get him stable. For this reason, his swallow study was cancelled.
Friday night and Saturday he was doing much better but he had not been allowed to eat in about 27 hours. So, on Saturday they inserted a feeding tube to get him nourishment.
Finally, on Monday he was well enough to take the swallow study, and as expected it showed that he was indeed sending milk to the lungs too. They felt that thickening his milk would remedy the issue but later that afternoon when given a bottle he struggled to breathe and was kept on the feeding tube and for yet another night in the hospital.
SO, what was supposed to be an overnight stay at the hospital turned into a five night ordeal that resulted in a baby being sent home, in my opinion, in worse condition than he came. He is now on a full time feeding tube and I feel like I am a full time nurse as a result.
Meanwhile, I've REALLY missed being a mom to my kids and having the championship of my husband. And did my best to fit in some Halloween festivities (my kids were SO cute and loved it, but we missed baby boy) they were Mickey and Minnie Mouse and kept saying "I want more trick or treat mom!" After every house. (Oh did I mention this whole time a crew has been in and out of my house completing my basement, drama with that too. .. and the week before my grandparents were here and grandpa took a HONORIFIC fall that scared us super good and resulted in a two night hospital stay and lots of prayer. Happy to report he's well now but it was a scary and heartbreaking experience)
OK where was I.... so now we're trying to find our new reality and take care of this poor baby. He cries almost constantly now, a HUGE change from his happy content self before, and his medical needs are beyond full time. I'm getting incredibly overwhelmed! On the first day home, baby pulled his feeding tube out TWICE and I had to put it back in, through his nose and down to his tummy. (Yup it's as fun as it sounds)
Needless to say, this has been possibly some of the hardest two weeks of my life. I always try to act like I've got things handled, I can do hard stuff blah blah blah. . . I'm learning that's not always the best approach. If you act like you've got it covered, people treat you like you've got it covered. I SO don't. I keep praying that it'll normalize, but it's not looking good.
Going forward we have ENT appointments, speech/feeding therapy weekly, weekly mom visits, ophthalmologist appointments, pediatrician appointments, and occupational therapy. That's in the next two weeks alone. We're starting to question our ability to provide long term care for this little fella but also know finding another option for him will be hard. And now on top of it, I'm getting calls about medical bills for him and they're not supposed to contact me for that at all, he's the state's responsibility. . . Hey thanks tax payers, I'll spare you the details of his expenses or you'll hate his mom a little. . .
Feeling tired, stuck, exhausted, torn, exhausted, exhausted, tired.
So, I'm trying to find the tender mercies to keep a level of sanity. . .
1.The day baby boy took his feeding evaluation, Tate also had speech therapy. Turns out, his speech therapist is a feeding specialist that primary children's refers many of their patients to. I was able to get him set up with her and discuss his needs in person during Tate's appointment. HUGE blessing and weight off.
2. Primary Children's Hospital is an AMAZING facility. They have so much to offer the children and families there. I've never felt so much love and help from such total strangers. They cared about Tate and Emerson too and provided incredible care for baby boy. I've gained incredible appreciation and care for parents of chronically ill children. They are amazing people who need incredible love and support.
3. Tanner's sergeant let him come home one night from 9pm-9am. So helpful.
4. My parents, in-laws and siblings have been nothing short of heros.
5. Baby is stable and home.
Right now, I'm just trying to survive. I feel like I've dropped a lot of balls, failed a lot of people and haven't sent enough thank you cards, played with my kids enough, cleaned my house enough, folded my laundry. .. at all, bathed any of us enough, laughed enough, prayed enough. ..etc. I'm trying to remember this type of guilt only comes from satan, not Heavenly Father and to "just keep swimming" even if it's only the most pathetic half hearted doggy paddle/back float ever. Someday, hopefully soon, I'll be able to do more than keep my head barely above the surface.
Thank goodness for Ramon Noodles and sandwiches.