Sunday, February 28, 2010

Graduation

Graham is set to graduate from the NICU to the Infant Care floor, possibly tomorrow. He is healthy enough to move on. There are some final hurdles to get past before we can start using the H-word (home), but this move is huge.
Graham is now taking 55ml of breast milk every four hours through his NG tube. The goal is 80ml, a few steps away. The nutrition (TPN) he is receiving through his central line has been weaned down to 8ml/hr from the original 20. When he gets to zero the central line can be removed, which will lower the risk of infection.
The breathing assist that Mr. G is receiving is almost minimal...1 liter of air per minute. The plan is to go to one-half and then to zero this week. Almost there.
The new skin covering the omphalocele is nearly complete. The area still healing is about the size of a half dollar. The docs are guessing it should be completely healed in about a week.
The perfect scenario would find Graham with a completely healed omphalcele, no breathing assists, and getting all his nutrition through breast milk. All seem within reach now. In the meantime, he is a happy active baby who charms everyone in sight with his smiles and cooing. Stay tuned for a couple new pictures soon.

Tuesday, February 23, 2010

All Smiles




Continued progress perfectly describes Graham's past few days. His breast milk intake through the NG tube has moved (in 5ml increments) up to 45ml and his feeding schedule has changed from every six hours to every four hours. At the same time the amount of nutrition that he is getting through his central line is being reduced. The G-Man has come a long way. The goal is 60ml every three hours and getting off the central line completely. Then we can start thinking about breast feeding.
Graham is also making progress with his respiration. He is now down to 2 liters on the vapothrem through his cannula. The next step is removing the vapotherm completely. His respiration rate is still a bit high, but improving. We are anxious to see the day when he needs no breathing assist.
These pictures show a happy, smiling, and growing baby boy of eight and one-half pounds, who is, quite simply, lighting up our lives.

Thursday, February 18, 2010

8 Lbs. and Growing!




Graham hit 8 lbs. on the scale this morning! This is great for so many reasons. He continues to grow a little everyday which means although his body is healing his lungs, omphalocele and gut, there's still some energy left over to put some meat on his bones.
His breathing continues to be on the high side, but we're all realizing this might just be how Graham is going to be.
Feeding volume went up today to 30ml every 6 hrs and I'm continuing the non-nutritive breastfeeding so G can relearn how to breastfeed.
We continue to be amazed at how the omphalocele is healing. Dr. West thinks in a week the new skin will completely cover it and we won't be dealing with an open wound any longer! I am still doing the dressing changes everyday. Check the post from January 7th (Still Healing) to compare today's picture of the omphalocele. Go Graham!
Graham is such a happy baby. He smiles all the time and we're on pins and needles waiting for that first little giggle to burst out. He is very content most of the time just taking in all the sights around him and he loves being held. He is sleeping great (mostly through the night) even amidst all the NICU noisiness. How are we going to recreate that when we get home?!?

Sunday, February 14, 2010

Holding Pattern

There has been very little change in Graham's eating and breathing patterns in the last two days. It is becoming obvious that the transition to breast milk will take time. Mr. G is now getting 20ml of breast milk through the feeding tube every six hours, which is a slight change from the 15ml every 4 hours. The docs are hoping the longer time given to digest the milk will help lower his respiration rate. He is still getting his main nutrition(TPN)through the tunnel line into his blood stream.
Graham is back to 4 liters/minute of air (from 3) through his cannula. This flow of air is called "vapotherm" because the air is warmed and moisturized. G's respiration rate dictates the liters he receives. His relatively high respiration rate necessities more liters, hence part of the strategy with with six hour feedings.
Patience.

Friday, February 12, 2010

Progress

Graham is making progress with the ingestion of breast milk. He vomited only after the initial introduction of breast milk via the g-tube, but not since then. He is doing so well that the volume has been increased from 5ml to 15ml. At one point the feeding time was reduced to every four hours from every six, but that did not work well and he is back to six hours.
The G-Man still has his cannula, receiving no added oxygen, but 3 liters/minute of air. We hope he can begin to be weaned from this assist soon.
New skin continues to enclose G's omphalocele. The wound therapists are excited about his progress.
Graham continues to be his happy self, lighting up everyone who comes in contact with him.

Tuesday, February 9, 2010

Gastrointestinal Issues

Graham's ongoing problem with his digestive system was beginning to cause serious concerns for us and his docs. We were especially worried about something that would require an invasive procedure to correct. Today Graham was given a gastrointestinal radiological test (essentially an upper GI) to determine if anything was amiss. A series of x-rays followed the dye that was introduced as it passed through his system. Importantly, the dye passed through in a timely fashion. To every one's relief, the G-Man passed with flying colors. There were no twists, kinks, or obstructions.
The plan now is to begin feeding Graham 5ml of breast milk via a tube every six hours. He was given his first feeding at five o'clock this evening and he promptly threw it back up 30 minutes later. We are, of course, hoping Graham's system will gradually adjust and he can start getting the benefits of his mother's milk.
Dr. West decided today to replace the tube that went into G's stomach through his mouth with a much smaller tube through his nose. He is visibly more comfortable.
Graham is not on any type of medication, save for one to help digestion. He is pain free, symptom free, and taking no drugs. It is obvious why he is such a happy boy.
Dr. West shared this thought with me a few weeks ago...she said that pediatric care could be summed up with the 3P's...pee, poop, and puke. We have worked our way through number one and number two (sorry!), now the focus is no more puke!

Sunday, February 7, 2010

Acting Like a Baby

Not much change since the last blog concerning Graham's lingering problems with breathing and digestion. He is showing some improvement in his respiratory function. Respiratory Therapy dialed down the oxygen he is getting through his cannula from 30% to under 25. We are light years away from ventilators and CPAPs, but looking forward to no cannula. G is still not ready for breast milk. Small improvement may see an attempt to introduce the magic milk through a tube to his stomach in the next few days. We'll know he has arrived when he starts breast feeding. Despite these nagging concerns, Graham is obviously feeling better. He is active. He is alert. He is smiling! Graham is acting just like a baby. The beauty of this is less need for all the drugs he has been taking to control pain and discomfort. Graham is in the midst of a weaning process, but already the drugs are no longer dampening his recovery. As if he hasn't already captivated us, the G-Man's emerging personality has now taken complete control. Discipline is off the table! video

Thursday, February 4, 2010

Back on Track

Graham was extubated late last night following his latest surgery. The extubation was delayed a bit because x-rays taken in the morning showed that his left lung had an unacceptable level of fluid in it. He also had poor blood gas levels making the extubation too risky. But the G-Man got his act together and the vent tube was removed. Today he is resting comfortably, getting about a 30% level of oxygen through his cannula. He will be weaned down to the 21% (ambient air) level when his numbers dictate. He still has some fluid in his left lung.
Now the focus is to get food into Graham's stomach. Indications are that his digestive system will soon be ready for that magic breast milk.
Graham seems to be back to where he was before his last surgery, with the bonus of no kidney disease and no hypertension.
Hope to return with more good news later.

Tuesday, February 2, 2010

Uncle Ward




Special moments. Ward holding his nephew, Graham, before flying back to Instanbul

Post Surgery

Graham's surgery to remove a foreign object left from a previous procedure was successful. He had some problems maintaining oxygen level immediately following the surgery, but all is well now. Katie mentioned that the docs suspected it was the wire used to probe the vein before putting in the tunnel line, but it was actually the heparin coating around the wire that came off when the wire was withdrawn. It will be returned to the manufacturer with lot numbers to find out causes or if other surgeries had similar problems.
We hope the G-Man is extubated sometime tomorrow, so he can get back on track. Dr. West is going to take a more aggressive approach to getting his gut ready for breast milk. Huge step forward when it happens.
Graham's heart function is still not up to base line. He has a thickening in the wall of his left ventricle, which was perhaps caused by his hypertension. And now that his blood pressure is finally back to normal levels (hooray!) this heart problem should rectify itself.
Oh yeah...then there is the omphalocele. Remember that? It is healing wonderfully!

"Never Seen It Happen in 30 Years"

Yesterday, Dr. West noticed in Graham's chest X-ray that a piece of metal was in his chest. After further inspection, they concluded it was a piece of wire used to help put the central line in place (last week) and when they took this portion out, it left part of the wire in the vein. An Interventional Radiologist will enter through Graham's upper leg/groin area and pull out the 2-3 inch wire.
This is a surgery, so the ventilator goes back in. This will all happen at 3:30pm today. He was doing so great the past couple days, it seems like for every step forward, we take two steps back. Let's all hope this is just a minor setback and he can jump back on that road to recovery.
--Katie