Saturday, May 7, 2016

Reflecting on Hudson's first week home

So Hudson's first week home this past week was quite a roller coaster ride. We got discharged Thursday, April 28th, but had to stop back in on Monday for some blood work just to check his levels. We got to Riley around lunch time that Monday afternoon and I took Hudson to get his blood work done and Bryan took the girls to check out the Kid Zone that is now open at the hospital.

By dinner time that day we got a phone call saying Hudson's blood work came back and his potassium was too high and we needed to go straight to the ER. It was so discouraging after just being home for 4 days that we were possible heading back to the hospital to be admitted again. It broke our hearts telling the girls their brother had to go back. The ER visit was not fun at all as he had to get multiple pokes to try to get another blood draw to confirm that potassium level was high. It did come back high but they were able to give him an oral drug called Kayexalate that pulls the potassium out of his body through his stools. Thankfully we did not have to be admitted but we did have to return the next day (Tuesday) for more blood work just to make sure the potassium level did go down. Thankfully it did! Come Wednesday night, Hudson seemed really uncomfortable getting filled and drained and by the 4th fill he was definitely in pain. At midnight that night, I was on the phone with the nurse on call wondering what to do and praying he wasn't developing peritonitis. She had me feel his belly, which was rock hard, and see what he was like for one more drain/fill.  Then next drain/fill he just seemed more uncomfortable and was grunting instead of crying out in pain. We decided we think he was constipated and if we could continue to do dialysis through the night they would check him out at our outpatient appointment that next Thursday morning.  

We made it through a much sleepless night and were at the hospital at 8am for our first outpatient appointment with the renal team. Poor buddy had LOTS of blood work drawn but all for the good as hopefully we won't be returning to Riley until our next outpatient appointment next Thursday. His appointment went great with lots of our questions answered.  They did an x-ray and it showed he was a bit constipated.  So they started him on MiraLax once a day. It is very common for kids on PD to have to deal with constipation.  We discussed his medicines and all the meds he is taking is because his kidneys aren't doing the work they should. Hopefully as he grows he can come off some of them but for now we are up to 6 meds a day and 7 with epogen every Mon/Wed/Friday. We found out a normal baby should gain 1 ounce a day but a child in renal failure it would be expected 0.5 ounces a day. However, Hudson is barely gaining 0.5 ounces a day. Therefore he needs to gain more weight. He now gets formula added to my breastmilk for extra calories, however, formula is high in potassium and that's the last thing he needs right now so I add kayexalate to his bottles to extract out the potassium. I'm literally doing a science experiment in my kitchen!  lol  Anyways, he gets 4 bottles a day that are fortified and then the rest of the day/night he can have straight breastmilk. So please pray for him to gain weight throughout this next week and for his potassium to stay within range.  

So, aside from 3 visits to Riley our first week home we are all getting used to having a new baby at home which means no sleep at night! Bryan and I didn't realize that Hudson was literally on no schedule or was held all night at the hospital so it was very hard adjusting to Hudson's sleep schedule of 3am-9am this past week. Thankfully as each day went on he went to bed earlier and earlier. We also found out he hates sleeping on his back and I can't blame him as he literally slept 7 weeks straight on his back in the NICU. He likes his side or propped up in a boppy.  

Yes, it was a very long first week home. BUT it was simply amazing having our sweet boy at HOME!  The girls have been loving on him non-stop, they've enjoyed showing him off to their friends and of course are starting to take turns holding him. We look forward to a much slower week this week and are hoping to only have to make one stop at Riley for our weekly outpatient appointment.

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