I will just start at what led to us going home...
They sorta sprung the whole going home thing on us last Monday... I didn't want to say anything for fear of jinxing it (you know me and my superstitious ways)!! I was shocked that it was even a possibility!! Addie was doing remarkably well... Tolerating her TP feeds and walking better, everything was definitely going in the right direction!! Praise Jesus!!
That Tuesday Addie had to have her prep for radiation... She had a CT and MRI for planning and diagnostics. She did great and didn't even have to be sedated for her CT. She woke up beautifully from anesthesia and that day did the best I have seen her do!! She was off of her feeds basically that entire day due to anesthesia and getting blood products! She didn't complain once of a tummy ache or vomit!! That night they resumed her feedings and increased them to her goal amount (which she had yet to tolerate)! Over the night she did great, likely because she was exhausted from the day... No nap! When she woke up that Wednesday morning (discharge day) the tummy aches were back with a vengeance. Right away she was complaining of stomach pain and began vomiting, and her vomit was tinged with blood, nothing crazy but enough to notice. The doctors came in about an hour later to take a listen and basically just tell us good-bye and what does that little stinker do?! Vomits up bright red blood, and kind of a lot. She was screaming, yelling and crying and just looked absolutely miserable! Needless to say, the doctors were not thrilled and were definitely questioning whether or not home was still a good option!! They looked at me with worry and asked if I was comfortable with all of this and still taking her home?! Surprisingly I felt no worry... Not even a smidge!! As a matter of fact it was probably the calmest I had felt... Oddly!! I have watched Addie vomit blood, poop gallons of blood, witnessed her struggling to breathe and on a ventilator twice so this little episode was nothing!! I gave them my take on why it was occurring and why I wasn't worried... One of the many things I have learned through this whole process is that doctors always skip to the worst case scenario. I don't know if they avoid the obvious, don't believe the obvious could be true or just want to always be prepared for the worse (probably the latter)?! Well so far, Addie despite being rare in her side effects, has always had OBVIOUS reasons for why things were happening... The doctors just didn't always want to acknowledge that could be all it was! Well in my medically uneducated mind (just the Mom knowing her daughter), I knew the reason Addie was vomiting blood was because her feeds had been increased fairly quickly and at a level she had never been at comfortably! Watching her the day before laugh, play and have the best day ever was confirmation for me that the sole reason Addie still felt yucky was because of her feeds... Most kids don't have TP/NG (feeding) tubes because they won't tolerate them or because their parents didn't force the issue... most kids go home on IV nutrition and not formula feeds. I felt that Addie was definitely one step ahead in that department because her stomach was further than most but because of this, she was still struggling. It was either struggle threw it now or later... Her stomach had to wake up at some point!!
Praise Jesus for that TP tube... It really has been amazing for Addie because it feeds the intestine and bypasses the stomach all together. So even if Addie throws up, her food and medicines stay where they are suppose to!! Really amazing... It still causes discomfort just like a NG would but amazing in that it wakes up the GI and forces things to stay where they should!! A bonus of being in the ICU on a ventilator... TP placed! The other great thing, it doesn't have to be changed every 30 days like an NG... Removing and placing them is absolute torture, which is why most kids don't tolerate them!! Sorry, probably way more than any of you cared to know about feeding tubes!! I just am so thankful that Addie's has been working out!!
Back to Wednesday... The doctors said they would see how Addie did for the morning and pending no more bloody vomit we could still go home!! Her feeds were lowered back to where we knew she tolerated them! She was still a bit rocky for the next hour or two and struggled with an upset stomach the rest of the day... But luckily didn't have any more major bloody episodes!
After the doctors left that morning, Addie and I prayed, we prayed that Jesus would make it clear as to what we should do... Either stay in the hospital to be safe or go home!! Obviously, we wanted so badly to be home but what we cared about more was what was best and safest for Addie! Like I said before, I just felt a calm... A calm that was oddly obvious!! There wasn't a part of me that was nervous to go home... My only anxiety was my lack of nervousness because that wasn't like me!! This was a huge deal... Going home for the first time in 50 days after all Addie went through is sorta MAJOR and with a whole new list of home cares and equipment!!
Obviously, the doctors (praise Jesus) let us take her home! She was unhooked from her tower and feeds for the first time in 50 days... I don't know if she even knew what to do with herself! We spun in circles and sang our usual song... freedom!!! Can I just stop and get a big Hallelujah... I continue to be in aww at where we are today, so amazing!! My Addie Bean... True miracle!! But seriously leave it to her to vomit up blood on discharge day... Just to make it exciting!!
It really is surreal. The whole trip home Reed and I just kept saying, "can you believe this?!" I still can't believe it!!
Our first night home was busy... Busy getting reaculmated to being home and being a mother of THREE and on Christmas Eve, which is always busy to those parents who have to help Santa!! :) Life with three healthy kids is busy enough... Add on a schedule of medicines, a TP tube, nausea, and a double lumen hickman catheter to that and you basically just upped yourself to a family of 7 :). It is busyiness that I am so overjoyed to be doing again... Caring for my family ALL together and on Christmas Eve!! We were home just in the knick of time to celebrate this wonderful season and our Lord and Savior Jesus Christ!!
50 days... Wow! My girl is home... God is so good, so GOOD!!
Go Team Addie!!
Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you.
But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.
If you are insulted because of the name of Christ, you are blessed, for the Spirit of glory and of God rests on you.
If you suffer, it should not be as a murderer or thief or any other kind of criminal, or even as a meddler.
However, if you suffer as a Christian, do not be ashamed, but praise God that you bear that name
1 Peter 4:12-16
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