Saturday, January 16, 2010


One of our wonderful child life specialists came by our room yesterday morning while Nathan was asleep, so we just talked for a while about our city, the hospital, and life in general. At one point, she spoke the words I have heard so many times over the past couple of years..."I simply can't imagine how parents handle life with a chronically ill child." I nodded and then replied that I once had uttered those exact words...because really, no one can imagine how that feels until they are living in the midst of it.
Then I uttered that it is indeed difficult at fact, to use modern terminology that shows utter distaste for something...sometimes it just plain sucks. Some days, everything just gets to you...dealing with oxygen tubing, extreme fatigue, sickness that he may or may not be able to handle, the decision of a g-j tube looming over your head, therapies, medical bills...some days, it just gets to you. But regardless of what you are dealing with at that moment, it is imperative that you remain courageous and strong or else it would be easy for your mind to fall into the "whoa is me" category.

"Be of good courage, and he shall strengthen your heart, all ye that hope in the LORD." Psalm 31:24

This is the verse that echos in my head during times of distress. It is what keeps me so strong when Nathan is in the hospital...during IVs, and catheters, and chem sticks, and times where there are more questions than answers. It is what keeps me from breaking down during these stressful times...when my son is hurting and sick. It is what gives me strength to be calm and collected in order to keep Nathan more calm and trusting in the medical staff that is trained to help his body when it needs it most. It is what keeps me from breaking down emotionally during these intense times of stress...God blesses with strength that you can not imagine when you need it most.
I have found that I am usually strong during hospital stays...I can endure Nathan's multiple sticks, prodding, wakings in the middle of the night. While it pains me beyond measure to see him in pain and suffering, the Lord gives me grace to be strong for my son. It is usually afterward when I fold. Last hospital admission, I was so strong until we had a follow-up appt with our was then that I could hold back the tears no longer. Today is the same...the day after we were released from a 5 day stay inpatient, and it is my most emotional. Maybe it is the exhaustion; maybe it is the recollection of events over the past week; maybe it is the worry that Abby's current fever will affect Nathan's recovery; maybe it is that I am just now free to show my fear and exhaustion and heartache...but today, well, today has been hard.

Thankfully, we have a sweet baby boy who is doing very well currently. This week's fluids and medication has helped his body kick whatever bug it was fighting and give him enough energy to get his body in a good stride once again. He's still tired and weak at times, but he is back to his ole' ornery ways of pestering his sisters and making a mess of the playroom. It is so good to see him feeling so much better. At the same time, this admission took him backwards in some areas we were trying to improve...his muscles are pretty weak right now, and I am desperately awaiting whether early steps was able to approve the aquatic therapy they tried to pass for Nathan before Christmas. And his weight...well, I am just hoping that he is able to put back on whatever weight and muscle mass that he has lost.Our hospital was amazing during this visit, once again. After we were moved to the IMC unit, our attending was one of the top doctors in the system (literally), and he took superb care of Nate. We had good visits from our neurologist, pulmonologist, and nurses that we call friends. About half way through our stay, I had the idea to ask if I could do Nathan's chem sticks from then on...a poke to his fingers or toes to check his blood sugars. At first, we were having to check them every hour, then every 2 hours, and once we reached the point where he was doing well enough that they could check every 4 hours, he had started to fight the nurses during each stick. It was shortly after we had been moved to the IMC unit that he pulled his IV out in the process of fighting the nurses during a chem stick. Thankfully, they let me do them from then on...having never done one before. I figured that since he trusts me, and since I could love on him and play with him afterward, it would be easier if I stuck him rather than people he didn't know or trust...and it worked. He didn't fuss as much anymore, and by Thursday evening, he was pointing out which finger he wanted poked and sitting through it without a problem. He's a trooper, I tell ya.
So, he's doing great now. We are hoping that whatever fever Abby has is what Nathan had previously, and we are also being super cautious with the little guy. He's been sick for most of the winter, and it has taken its toll on him and us. Regardless of everything, he is still the sweetest little munchkin around with wise eyes and a dimpled smile. I love this little guy.


Idony on January 17, 2010 at 1:14 AM said...

(hugs) Im glad nate is home. You are so right though, i use to see those telethons and stuff fo st judes and whatnot and i would always ask myself how they heck he parents did it without going crazy ever single day. Now, unfotunantly, i now all too well.

Testing blood sugar is much easier when its the mommy and not someone scary. Vals screams her head off if someone else coms near her with a lancet, but if its mommy, she will willingly stick out her finger and wont make a peep.

Nate is as cute as ever. I cant believe how well hes sitting up in that little elmo chair, val sits in those things and almost immediatly falls backward lol.

erin f. on January 17, 2010 at 1:47 PM said...

Just catching up on your blog - I think you said it all when you said that you can't imagine living with a chronically ill child until it is happening to you. I truly cannot imagine, and just hope and pray that God continues to give you the strength you need as a mom to endure that hardest moments. I know you are an ecouragement to others in similar situations and I think about and pray for your sweet Nathan often! God bless.

wandaconner on January 17, 2010 at 6:26 PM said...

I like the monkeys!

Heidi on January 17, 2010 at 6:28 PM said...

So good to see Nate back home and looking much more himself. What a scare for you all, these admissions can really wear you down. I hope he continues to gain strength and keeps up his weight. Many more prayers for your little guy, hugs Amber. It breaks my heart knowing how hard this has been for you.
Heidi & Jack.

Beth on January 17, 2010 at 8:12 PM said...

Glad you are home! Nathan is a doll! So Cute! We love you! Your family is always in our thoughts and prayers. Beth, Brian and Matthew

Nicole, Drew, Jack, Megan, Sophie, and Lucy too on January 18, 2010 at 8:46 AM said...

So happy to read that you are home and that Nate is feeling better. I can relate very much to your words and your feelings.

We will be praying that Nate and the rest of your family have a healthier winter. Stay strong Mama, God has blessed you!


Anonymous said...

Amazing Grace...
Love Nina

Nicole on January 18, 2010 at 10:26 AM said...

I'm so glad Nathan is able to get home! I just pray he can stay healthy now!!

Jessica on January 18, 2010 at 1:24 PM said...

Glad you are home! I am the same way about stress - I am fine during the hospital admission, but always have a few days of "post-traumatic stress" when we are finally home. Hopefully this will be your only stay for awhile.


Michelle on January 18, 2010 at 5:57 PM said...

So glad you are home and Nate is back to terrorizing the girls! May God continue to give you strength. Hang in there Mama!

Dani on January 18, 2010 at 8:01 PM said...

So very glad that Nathan is doing better. You are always such an encouragement to read.

Michelle on January 20, 2010 at 2:26 PM said...

I'm sorry Nate had been so sick and hospitalized; thank God he's back home now! Hope he's feeling more like his old self every day!

Katie on January 21, 2010 at 11:40 AM said...

Keeping precious Nathan in our prayers (and YOU!)

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