Unwell - November 24, 2014

Oh my lil Beau.... he has been sick since October 20th... started out as a cold that turned into a sinus infection.  Once he was almost fully recovered (minus some lingering junk in his throat) he caught something else that ended up being a double ear infection.  So he is currently on his second round of antibiotics.  Well over the course of this month, he has had some side effects that I contributed to the present illnesses and antibiotics - runny stool, dry mouth, more tired than usual, no longer wanting to sit up, etc. But over the weekend his sleepiness and lack of energy took an unusual decrease that made Andrew and I raise our eyebrows. 

Take a jump back with me for a minute.  Since Beau is now over 1 year of age and switched to the GJ tube; his specialists changed his formula as well (back in October) to Pediasure Sidekicks.  The prescription was put in and the cartons delivered to our house.  We had transitioned him over the course of two weeks from the  infant formula to this new drink and this was about the same time he started getting sick.

Okay back today… So last night (Sunday) I started to question what else could be causing Beau to feel so awful this weekend.  Andrew and I both directed our attention to the new nutrition drink that was prescribed to him a month back.  We took a closer look and noticed that it was lacking in MANY of the nutritional needs a 1 year old who is 100% g-tube fed would need… no calcium, no potassium, no fiber, no fat…. Oh my!  We never even questioned that this was the right nutrition drink as it was “Pediasure Sidekicks” as the doctor had prescribed.  We quickly went to Pediasure online to find out there are TWO Pediasure Sidekicks…. One is a milkshake that is “ to help balance out your picky eater’s uneven diet.” And one is “to a refreshing clear liquid option to help balance out your picky eater's uneven diet.”  How were we to EVER know that the clear option he was receiving was quote “not intended for sole-source nutrition.”  ?????
(To clarify - the prescription from the GI doc was written as "Pediasure Sidekicks" and the Pediasure Sidekicks milkshake would have been a perfect fit for him so by no means is this the doctor's fault.... but the wrong cases were being delivered, we received the Pediasure Sidekicks clear nutrition drink instead but we didn't know as the name is the same.)

So I quickly got on the phone to try and contact my pediatrician or the on-call pediatrician.  I talked with an after hours nurse and my pediatrician, both of which said it didn’t sound like he needed an ER visit as he didn’t not have symptoms such as altered mental status, tachycardia, poor profusion, shortness of breath, difficulty breathing, poor color, muscle spasms or significant diarrhea; however, we should be seen tomorrow to get some labs and follow up with GI and nutrition on the feeding issue. 

This morning promptly at 0730, Andrew called to make an acute appointment at the Pediatric clinic at the hospital. They got Beau in right away at 0900 and they took labs.  His potassium was 2.0 where a healthy body is at 4.  They immediately wanted to get an IV in him and admit him to the PICU.  Of course they were unable to get an IV after several attempts... of course not, he has a track record.... so they took a break.  They had also done an EKG on his heart which at first a questioned but now makes sense with his low potassium levels This is about the time I arrived at the hospital to a very fussy, tired babe.

They admitted him to the PICU about 1600 and tried again but still were unable to get IV access so the alternative was putting in a femoral line.  This would give them the ability to draw labs, administer meds, and IV fluids.  I told them to go for it so they had to sedate him and by 1800 they had successful placement. 

 They immediately got Potassium going in with IV fluids and Pedialite going for electrolytes. I spoke with the doctor and he said they still do not have a full picture of what is going on with his body but they are going to treat him as if he were malnourished....the word I had been dreading since last night... we have malnourished our child and not even known? I have never felt so guilty in all my life. There are so many things that have run through my head all day about what we couldn't done, how we could've checked or confirmed the nutrition drink and on and on.  :(  I'm broken.

So before heading home to rest, this was the doctor's latest...his liver enzymes are increased due to the changes in digestion. Not only do the intestines have to digest the food since it's not fed to the stomach but then you add incorrect nutrition to stir the pot even more.  His calcium levels are in the ok range but he has probably had 'bone demineralization' where his body has sucked the calcium out of the bones (like osteoporosis) to be used in the body. This could partially explain his weakness as well as the low potassium levels which are crucial for muscle function - causes muscle weakness and ache. He honestly felt like a little rag doll picking him up today, completely limp.  The doctor does not yet know if this will cause any permanent damage to the intestines or body as he doesn't have the full picture of Beau's healthy just yet; they are still running labs. However I came out and asked, "Do I need to be worried about Beau's life?" and he said, "No, but he is not well. "   

Tomorrow they will start him on TPN (Total Parenteral Nutrition) and do an echo in the morning to check his heart. 

So there you have it.........  thanks for being patient for a full update.   As you can imagine, its exhausting sending constant text messages when something new happens.  Please know that I will update as I can and we appreciate your prayers for Beau.  We know he is in great hands, both by the medical staff but most importantly in the hands of our Awesome God, the Great Healer and Protector.... LORD, we place Beau IN YOUR HANDS...We trust you and we love you.

Psalm 62.8 Trust in Him at all times, O people; pour out your hearts to Him, for God is our refuge.