Baby Eagan - NICU Day 27-30 - Surgery and Recovery

          

As many of you know, Eagan has been keeping me very busy. I cannot tell you how much we appreciate the prayers and support we have received during the past few days. I have prayed, cried, and rejoiced more in these days than I have in most of my life. My family came extremely close to losing our boy and in true Eagan form, here we are! That little boy has a fight in him like no other. I suppose he has some of his Mama's stubbornness in him!

I will try my best to explain what has taken place from day 27 to day 30. It has all been a bit of a whirlwind with very little sleep and a whole lot of stress.

Day 27



Day 27 - The last time I held him before surgery.



Overnight Eagan's white blood cell count went up to 25,100. His C-reactive protein went up to 8.8. His doctors took blood cultures and started him on Merapenem, Clindamycin, and continued Vancomycin. His urine output was dropping and they gave him Lasix to try to help move his kidneys along. Eagan, as feisty as ever, decided he no longer liked his suction tube that was placed in his stomach, and pulled it out. I met with Dr. Parker, a top surgeon at Egleston, to discuss what needed to be done about Eagan's intestines. At this time, Dr. Parker's plan was to transfer Eagan to Egleston and do a barium contrast study to determine if surgery was necessary.

Day 28

Day 28 - One very very sick little boy

Eagan started to become very critical, very fast. He weighed 3 lbs 2 oz at this point. He had gained almost 200 grams in less than 24 hours. This weight was all fluid and swelling. His blood pressure was extremely low and Dopamine had to be given to raise this. His thyroid was very low and Synthroid was again needed. His hematocrit and platelets were low, so he had transfusion #11 and #12. Later, he had a repeat head ultrasound and X-ray of his abdomen and chest. Eagan developed a mucous plug in his endotracheal tube and required a very long period of resuscitation. I was in the room for this. Eagan lost all color and took an extremely long time to be brought back up. He had no respirations, a heart rate of 20, and an oxygen saturation lower than 30. Normally, a mucous plug isn't a big deal for him, but he was very sick and wasn't able to do any breathing for himself.

The decision was made that Eagan needed to go directly to surgery rather than for a study. Finally, the transport team, Angel II, arrived to take Eagan to Egleston. On the way there he was given transfusion #13 of platelets. Before surgery, the outcomes were discussed with us. The surgery had two possible results. Eagan could need a portion of his intestines removed and have ostomies for a number of weeks followed by another surgery or all of Eagan's intestines could be dead. This would mean that Eagan would be closed back up, and we would have to remove life support. Needless to say, I was terrified. During Eagan's NICU stay, I have held it together and been strong for him. I watched him code earlier in the day, and I could not do it again.

Eagan went into surgery and I counted the minutes. Eagan's surgeon came to the room we waited in with great news! Eagan had multiple obstructions in his intestines that caused his intestine to perforate and rupture. This spilled toxins and stool into Eagan's little body. Another portion of intestine had become so dilated that it was behind his liver. This portion of intestine was repaired without the very dangerous possibility of his liver bleeding out. The portion of intestine that ruptured was removed and a jejunostomy and mucous fistula were created on Eagan's abdomen. Basically, the ends of intestines were not able to be reconnected because he was so very sick. These ends were brought outside of his belly, the ends flipped outward and stiched onto his skin like a port. During surgery, he was also given transfusion #14 of blood.



Day 28 - Right after surgery



When I went to see him after surgery, he opened his eyes for the first time in two days. My little boy felt better!



Day 28 - Eagan already looks so much better



Day 29



Day 29 - Sleeping and recovering



Eagan had a very low blood pressure and his pulse was too high. He was getting saline boluses to try to solve both problems. His blood gases the night before were not good so he was given a drug called Norcuron to paralyze him temporarily. This would help the ventilator do its job better. He also has an arterial line that was inserted the day before. This allows the nurses to get a very accurate blood pressure and draw blood gases without sticking him every four hours. His foley catheter that was inserted during surgery to alllow him to pass urine was still in place.

Day 30

The paralytic was discontinued today. Eagan has squeezed my finger and looked at me. His foley was removed because it was getting blocked by sediment in his urine. His ventilator settings have been lowered after each blood gas. This means the ventilator is breathing for him fewer times per minute. His platelets were low so he received his fifteenth transfusion. He will also receive a new PICC line or CVL at some point today because he pulled his old PICC line out a tiny bit right before transport, but was too sick to get a new one at the time. His blood pressure is still very low so his Dopamine has been increased a bit. His only current complication is some free air in his abdomen. The surgeon is hoping his body will reabsorb this so she does not have to go in and remove it. He is still very swollen and puffy and looks a bit like a potato. His new nickname is "sweet potato".  I really am still amazed at how well he is doing. This boy is a fighter and God has a huge purpose for him.



Day 30 - Little miracle boy is doing so well!



Thank you all again for the love, support and prayers, and an extra big "thank you" to all the AMAZING doctors and nurse that have taken care of little Eagan so far.

You were born with wings 

wrapped translucent 

around your naked skin 

waiting to unfurl- 

to fly away 

though we ached to have you stay. 

You were born with wings 

so we tethered you with tubes 

IV's and ventilators 

NG tubes and oxygen 

labwork and broviacs 

surgeries and suctioning 

and finally blood... 

so much blood. 

You were born with wings 

and we tried to tear them off 

watching in horror 

the times they opened wide- 

holding tiny hands 

as though we held your soul 

sitting at your side. 

You were born with wings 

but at last you grew strong 

and when your wings slipped off, 

they whispered to the ground 

lost 

in a pile of cloudy x-rays, 

and we found 

it wasn't lines that kept you, 

but the hand of God himself. 

                      -Elisabeth Snell