Tuesday, November 25, 2014

All For GOOD.... November 25, 2014

I woke up this morning after a much needed, restful night and The Lord immediately told me to get in His word before I even got in the shower.  So I opened up one of the devotional apps on my phone to proverbs31.org .  At the end of today's devotional, I found a beautiful prayer and verse that spoke straight to my heart.


Isn't is simply reassuring to know that God works it all for GOOD?! Even when there are soo many questions and much we dont understand, we know His plan is greater... maybe it's another way He's asking us to trust Him with the future, rely on his plans and his timing, and find strength from Him that we need to get through another day at whatever challenge we're facing....

So I got ready and headed to the hospital.  I'm so thankful the staff is so good about giving me an update almost immediately when I walk in the room.

Beau is significantly better today. I knew immediately when I saw smiles, rolling over, and him grabbing for and shaking the toys I brought him. His potassium is up to where it should be 3.8 (up from yesterday's 2.0)!  The doctor informed me that based on his labs, they discovered he has damage or injury to his gallbladder, liver, and kidneys. Thankfully, these organs will self recovery with the proper nutrition. With his body functioning with inadequate nutrition, it had to pull energy from alternative sources like the bone and muscle but already I could tell he was gaining his muscle strength back!  He still has a level of dehydration and high protein in his urine.  The doctor is going to consult with the pediatric radiologist to see if a bone density test is needed. All in all this a good report.  He is still in malnutrition status but has made major improvements since yesterday.  The next step up from malnutrition can sometimes be re-feeding syndrome.  This means that the body has to re-acclimate itself with processing things in his nutrition (like fats) that it has not "seen" in a month.  Often there are side effects so the doctors will be taking it SLOW to make sure his body tolerates being back on feeds as best as possible.  Right now he is still on a slow rate of Pedialite and they started the TPN tonight. This morning's echo on his heart looked great as well!  So much great news, PRAISE JESUS!


Our amazing Pastor Jesse and his beautiful wife Elizabeth came to visit and pray over our sweet babe today.  Thank you, dear friends, for your support and for reminding me again today that God works for GOOD... ALL THE TIME. 

I got some quiet time do my Bible study while Beau napped - Here is a view of his hospital crib in case you were wondering!  He was sleeping soundly when I snuck away for a dinner date with my husband; thanks Amy! I also saw some BEAUtiful fall leaves on my way out of the hospital tonight; maybe it was the reason there was only parking on the 5th floor!  The leaves are at their peak here in VA and cover the ground so I had to take a moment to soak it in....We have much to be thankful for today.  We appreciate your continued prayers. 


 "You intended to harm me, but God intended it for good." Genesis 50.20

Monday, November 24, 2014

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.



Saturday, November 1, 2014

October's Fall Fun

We had a busy month.  Now that Andrew and I don't see each other during the week, I have been trying to plan things on the weekends to keep us busy and enjoying the sweet time we do have together!

October 2: Daddy is HOME!!!!

Some after-bath smiles!
 October 7: Daddy styled Beau up for the doctor today.  I found them all snuggled up when I got home from work.. he was tuckered out and band-aid covered after getting his 12mo vaccinations. 

October 11: Sofia celebrated her first birthday!  We got a photo of our miracle babies together! It is amazing how far they have all come this past year - what BIG blessings!

October 12:  Family zoo day!  It was military appreciation day so we got in free and enjoyed a quick walk around the zoo!  It's so fun to be able to take Beau out and enjoy activities as a family.
 
 

October 18:  Step Up for Down Syndrome Walk  We had a group of friends from church who joined us today to spread awareness for Down Syndrome.  It was a BEAUtiful day to show off our T21 pride and enjoy time with people who love and support our family. We took tons of photos but here are just a few!





 October 19:  After church we headed to the pumpkin patch with the H family!  Beau got to take his first hayride and the boys enjoyed some pumpkins and hay!  We also stopped by the farmer's market to buy a pumpkin to carve and got some cute photos there too!


October 21:  I ordered Beau this cute hat from a friend I went to Australia with many years ago!  I loved it so much that I had her make two more for my adorable nieces, Harlow (bottom) and Joelle (top)!  They arrived just in time for the cold weather that is headed their way in Minnesota!


October 24:  Tonight was Halloween night at the Aquarium.  I saw that it was only $10 to get in and it's usually almost $25 a person that I jumped on the opportunity to take Beau. Andrew had to work so we went with the G family and had a fun time! 




 October 25: This lil guy wasn't loving his shades; they were off as fast as I put them on but I got one big smile!  We got to watch Isaac tonight while his mommy and daddy went on a date!


 October 29:  Beau and his buddy Ty. I am so very careful to let the dogs be free in the house when Beau is on the carpet but Ty was being so sweet!  I had to make this comparison photo too because Beau wore this outfit two months ago, it still fits him which shows his weight gain has slowed but he is still changing every day!


 

October 30: I go to take Beau out of the carseat and I find him in the splits!

 October 31: Happy Halloween! Daddy worked tonight unfortunately, but we enjoyed going to the Trunk-or-Treat at church!