Set-backs are Bound to Happen--Making the Most of Every Opprutunity

I've been in-and-out of the hospital with AaronMatthew for about 5 months now.  I have seen tragedy. I have seen much loss.  I have seen much pain.  I have seen much heartache. But what troubles me the most is people that have no hope.

We ended up back in the hospital for a week because AaronMatthew got the flu and couldn't keep his feeds down.

It doesn't surprise me that these set-backs are bound to happen.

I prayed and was open to the Holy Spirit using us as He saw fit and took it as an opportunity to share my faith.

AaronMatthew is a "hard poke." When it comes to needles, blood draws and IV's, it is almost nearly impossible to get a needle positioned correctly in my son's vein. Because of that, he does go through extra pain.

I was out in the hallway talking to a doctor when Anesthesia was in his hospital room trying to get an IV started.  I had tears in my eyes and I asked the doctor, "How many pokes is too many pokes?"  I could hear my poor baby screaming from the room while I stand in the hallway. The doctor tried to console me by putting her hand on my shoulder and saying, "I am sorry." I knew he needed an IV. I looked at the doctor and realized she was really pregnant.  I said, "Oh you poor woman, you look really uncomfortable."  She said, "You know, it's just a part of life." On the seventh try, they finally got an IV in. The anesthesiologist came out and said, "It's in." I said twice, "Thank you Jesus! Thank you Jesus!" and "Thank you LORD!" Just then, the doctor said, "Would you please pray for me." I said, "Of course I will and I will continue to do so." She was Muslim.

I also talked to my son's night nurse about a relationship with God and how we have hope in Him. She was Muslim too. I was holding AaronMatthew at the time. She left the room and I looked into my son's eyes and I said, "AaronMatthew! Look! The doors we are getting into!" I prayed for her right then and there.

Also, a housekeeping lady came in to change the garbage.  I was talking to her about a horrific news story on t.v. at the time that was top news.  She explained to me that her brother just passed away a few days ago of a blood clot and that she had to pay a lot of money to fly his body back to Detroit and they would be having the funeral some time soon.  Before she left the room, I just started praying aloud for her.

I also ran into a woman who has another baby with Down's that is still really sick. I asked her if I could see and pray for her baby.  When I saw him it put things into perspective. I started to tear up.  I prayed for the child and I told her that when her child gets better, we will have to do some playdates.

I share this because I have hope.

It is my prayer that others would have the hope that I have in Christ Jesus too.

Romans 5: 1-5

Therefore, since we have been justified through faith, we have peace with God through our Lord Jesus Christ, through whom we have gained access by faith into this grace in which we now stand. And we boast in the hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Evicted from the Hospital ~Home Sweet Home~

Our day finally came, a long time in the waiting. A lot of tears and emotions leading up to this special date. We were going to be evicted from Children's Hospital of Michigan. It had been our residence for over 3 months! My little AaronMatthew was well enough to go home. I dreamt about this day and so desperately wanted my baby home and it was coming. We got to tearfully say, "goodbye" to all of the nurses, Cardiovascular Doctors and Critical Care doctors last Wednesday. AaronMatthew had been doing fabulous for the last week or so. His breathing was so much better, his color- he actually has color! His crying got stronger. It was our time.

We've been home for four days now and things are going smooth. AaronMatthew smiles a whole lot. He loves to be held and boy, we're making up for lost time. He sleeps through the night, which is great!

All this doesn't come without challenges. 

AaronMatthew is on 5 different medications for his heart, a diuretic and sodium chloride, which is a salt electrolyte. He is still on a gavage nasal gastric feeding tube and he is learning to drink out of a bottle. It is challenging for him and is taking him some time to master the technique of sucking the bottle. He does get tired frequently even though he is like a brand new baby and he still has his episodes of breathing hard and fast. 

We are on a strict schedule where he eats every 3 hours. It's 27 calorie formula and the volume is 105cc's. I measure and mix all of his formula and load it in the bottle and try to feed him by mouth and put the rest in a pump which then goes through a tube into his nose and down to his stomach. I also measure out all of his medications and put them through the tube as well. Who wants to taste nasty medicine anyways? I measure how much he takes through his bottle and record that and record how many times he has a wet and poopy diaper. I take his temperature at times and record that too. All that with a busy 2 year old bigger brother as well.

All this being said, he's not perfect, but so much better than he was before and right after his open heart surgery.

Then there is the endless doctors appointments.

We get to see his Pediatric Cardiologist at St John Hospital tomorrow morning for the first time in months. I know his doctor will be thrilled to see him as I have kept him updated weekly. We will be making appointments to see the Speech Therapist and Occupational Therapist. And we will go to an Endocrinologist and a Genetics Doctor as well. 

We have a nurse come out twice a week to see AaronMatthew.

For now, we are just sticking with the home nurse, Pediatric Cardiologist and maybe the Pediatrician until he is well enough to go on more outings. We aren't going to church, the grocery store or the convenience store for now. My husband and I are trading off. I am not risking my son catching some sort of virus, especially when it's flu season. We have been tenets at the hospital long enough. And I am going to need surgery in the very near future to get my gallbladder removed due to gall stones. 

How do I do it all? By the grace of God. That's how. He gives me His strength.

We are so very blessed to be home.