Sunday, April 10, 2011

Never Mind - B is back in the Hospital

After a restful 5 1/2 hours at home, Brayden returned to the hospital.  The tube was no longer in his jejunum and curled into his stomach causing severe vomiting.

Let me go back to the beginning of misadventures of getting a g-j tube placement.


On Friday morning about 6:00 a.m.  I woke to Brayden screaming (which he does some days without explanation).  I changed his diaper quickly, trying not to aggravate him anymore, then scooped him up in his blanket and held him until his nurse arrived at 7:00 a.m.  When she arrived, I handed him over so I could get the other boys ready for school.  The nurse started to get his suction and meds going and when she lifted his shirt, she found that his g-j tube has come out several inches.  We did not know if the tube was properly placed or could potentially cause more problems, so we did not give him any meds or fluids.  I called the dr and we headed to Fairfax hospital.

We headed right into radiology (where Brayden has had many g-j tubes changes in the past).  A tube change is done on a radiology table with barium and a wire to help watch and guide the tube into the stomach and on into the intestine.

A radiologist came in and tried to get the tube properly placed...tried for too long without any success.  The radiologist called for another radiologist (who had done a tube for Brayden in the past).  The second radiologist tried...nope, nothing.  That radiologist left to call another doctor to find out what needed to be done.  The first radiologist came back and tried again...still did not get it in.

Did I mention Brayden is awake while they force a long tube in and out of a whole on his stomach?  At some point we could see that Brayden was exhausted and just gave up.

The tube was not going in.  They placed a temporary catheter in his stomach and sent us to a little waiting room to wait for a bed in the ER or on the pediatric floor.  We eventually made it to the ER, where Brayden was given an IV and finally his meds.  There we waited to be admitted.

The GI doctor came to the ER to discuss options.  It seemed decided that Brayden should have a surgery to get a j-tube.  This would mean new hole is made from the outside in to directly put a tube into the intestine.  He would also keep his g-tube.  Meaning he would have two separate tubes.

After getting settled into the room, I headed home with Carter and Luke (and B's nurse) on a Friday night during rush hour in the rain.  Over two hours to get home was occupied with phone calls from Jeremy at the hospital.

The GI doctor was planning to schedule the j-tube surgery for the following morning.  However, the surgeon refused, absolutely refused, to do the surgery...he believes j-tubes bring too many complications.  The GI doctor agreed to try and place the g-j tube endoscopically, which she originally refused to do because it is very rarely successful.


I drove back to the hospital in the morning with Carter and Luke to meet Jeremy.  Brayden was already in the OR with the GI doctor for the endoscopy.  Jeremy and I waited while Carter and Luke played.  About an hour later the Gi doctor emerged and said that she was unable to place the g-j tube.  However, another radiologist (who has changed B's tube a few times in the past too) was available to try.

It was decided to keep Brayden sedated while the radiologist worked to get in the tube.  I sat with Brayden in the PACU watching machines pump air in and out of him, medications slowly dripping into his IV to keep him sedated, until radiology was ready.

He was wheeled to radiology and the procedure started (I am allowed to be the room for this).  The radiologist had a poker face.  I could not tell if he was making progress or if he was having difficulty.  Finally the radiologist said, "Alright."  I am thinking...all right good, all right bad?  The radiologist placed the tube in the proper place.  Brayden now had a shinny new g-j tube.

He was wheeled back to the PACU and then up to his room.  We met with the GI doctor and she was comfortable discharging him, as were we...confident that the tube placement was working.

Brayden arrived home about 6:30 p.m. on Saturday.

Saturday night/Sunday morning.

Brayden was in bed at 7:00 p.m., meds given through the new g-j tube and he feeding was hooked up for the night.  Jeremy and I crashed in bed at 7:45 p.m.  I awoke about 11:00 p.m. to Brayden coughing.  I just assumed that he was coughing from being intubated that day.  I dosed off for a bit and realized that Brayden was still coughing.  I jumped out of bed and could smell his formula before entering his room.  I flicked on the lights and found Brayden laying in a pool of vomit.  He was vomiting his formula, which should be impossible since the tube should be in the intestine...which means the tube probably crept up into his stomach.  By this time is was 12:15 a.m., we called the GI doctor at the hospital, she told us to start heading in.  Jeremy gave Brayden a bath while I got ready and we were on the road by 12:30 a.m.

Arrived at the hospital and admitted back into the same room.  Brayden started vomiting again, this time blood.  An IV attempt that failed and then an IV that stayed.  A chest x-ray to check if he aspirated from vomiting.  An abdominal x-ray to see the g-j tube placement.  By about 4:00 a.m. we turned off the lights in the room for a couple of hours of sleep.

Sunday morning.

Brayden vomited more blood, yet another linen change.  Then the GI doctor came to the discuss the evening events.  The abdominal x-ray showed that the tube was not properly placed.  She removed the g-j tube and put in a temporary g-tube and is venting his stomach through the g-tube (stomach).

The plan is yet to be determined.

Today we watch to make sure he does not continue to vomit blood.  Tomorrow we will speak with the GI doctor and another surgeon about surgery for a j-tube.

Please pray that we find a good, long-term solution that will benefit Brayden's health and feeding.


The Henrys said...

Thinking of you and praying for something to work for Brayden!

Anonymous said...

We're praying, too. The great thing about us praying for you from the other side of the world is that people are literally praying for you 24 hours a day! -Kristen

MrsFought said...

Thinking of you guys and praying they find a solution fast!

kirstenpetree said...

Praying praying praying! I am so sorry you guys are having to go through this. It absolutely breaks my heart and seems so unfair to the little guy.

Laurie said...

I am praying. Praying that the doctors find the solution you need, praying that you and Jeremy remain strong for each other and for the boys, praying for Brayden's health and security and peace. What an ordeal for all of you - this post brought tears to my eyes.

Wherever HE Leads We'll Go said...

So sorry to hear this! What a crazy, exhausting weekend! Praying that you and the docs are able to come up with a good solution and that you are able to get some rest in the meantime.

the deKorne family said...

Praying Carrie. I'm so sorry he is having to go through this-and you, too. God has given you so much strength! Keep us posted.

Vivianne said...

Very close to tears while reading this. Praying so hard for you guys. God be with you. xx

MP said...

We are praying for you guys Carrie! I am so sorry that Brayden had to go through such probing. Praying for strength and rest and wisdom.

April said...

Oh I am so sorry you are going through this-- Hoping that they can find a solution quickly! Hang in there!