Here are the last two updates
Wow what a week...well 2 weeks. Here is the play by play since the last update:
12/30- Blood transfusion, NJ tube to intestines placed and breathilizer treatment done after rough morning mentioned in last update. Seems to help as Bennet becomes stable by evening.
12/31 Much more stable with only occasional apnea/bradycardia episodes. Starts being followed by a respiratory therapist who checks up on his lungs every 4 hours.
1/1 Urine sample comes back positive for a UTI which baffles the doctors. Started on antibiotics. Still having apnea/bradycardia episodes
1/2 We have an alarm free night!! EEG done to rule out seizures or unusual brain activity. Come back A OK! Started partial bottle feeds. Reflux very painful. Alarm free day so we move to general Peds floor in the evening.
1/3 Renal ultrasound done. Kidneys and bladder are normal, no clues here. Another X-ray done to check placement of NJ tube after Bennet tried to pull it out. Feed by bottle upped to 30mls. Comes off Oxygen today!
1/4 - IV goes bad in hand so moved to scalp. They didn't cut any hair though! Another alarm free day
Still having problems with reflux
1/5 Upper GI test done. Severe reflux documented, esophagus and stomach normal. Swallow study done, he eats well now that the milk is thickened a bit, its the reflux afterwards that sets him off squirming, arching his back and crying about afterwards. Officially diagnosed with GERD GastroEsophageal Reflux Disease
1/6 Feeding by bottle upped to 45mls every three hours. Relux causes heart rate to drop into the low 90's a few times after feedings at first but then levels out and does fine through the night
1/7 Tried increasing to full feeds by bottle (60mls) reflux causes choking and gagging. Decreased back down to 45mls by evening...does better. Hemoglobin checked again. Down to 11.0 from 12.0 Stool and urine samples come back negative for blood.
1/8 back down to 45mls by bottle with a little more thickener. Seems to do the trick as he is not refluxing near as much.
1/9 Back up to 60 mls by bottle and they took the feeding tube out. He seems to tolerate well so far. More sleepy today, starts to periodic breath while asleep but nothing close to apnea. Working harder to breath at times so is given a breathilizer treatment. Skin is mottled. Not sure what this means but they asked me to tell them if it becomes any more pronounced.
The docs are still baffled as to why Bennet would have gotten the type of UTI that he did and apparently it is a hard strain to kill. They are also unsure as to why his hemoglobin levels dropped again although since it is still within a safe range are not concerned at this point. It's to be followed up to see if it drops any more once we are back home.
1/12/09
We're home! Well, almost. Bennet was discharged yesterday and he and I will be staying at my Uncle's empty house until Arlana and Evalynn are over their cold/flu. Hopefully soon as we miss being all together. Bennet was in the hospital a total of 2 weeks and it's going to be another couple days at least before the girls are well enough for him to come home.
Right now he and I are sitting in the car out side of Biggby so I can post this while I want for a prescription to be filled over at Walgreens. We just saw the chiropractor in hopes it will help with the reflux. While I am at my Uncle's I will not have access to internet so don't expect me back on here much.
The last couple days at the hospital were fairly uneventful as we worked to find a good balance of milk quantity, thickness and type of nipple that would decrease the reflux. They were also monitoring to see if any of the apnea would return. On the morning we were scheduled to leave he had one alarm but it may have been loose wires because he was sleeping on my chest at the time and sometimes that can mess with the leads. They let him go home anyway since he is now on an apnea monitor.
As close as they could tell the episode that brought him to the hospital in the first place was a combination of the anemia/UTI/ congestion making it just too hard for his body to handle so he was giving up. The reflux wasn't helping either. He will continue to be closely followed by our pediatrician and will be on the monitor until he proves he won't be having any more problems. Probably a few months.
Once we are home we won't be bringing him out in public except for health appointments until at least spring. If he catches any type of illness it can cause the events to be repeated and I just can't handle trying to fight for his life like that again!
Thank you all for your prayers and encouragement. This would have been so much more difficult to go through without it!
I'll start reading the boards again once I am home and have regular access to good internet!
Mon Jan 12, 2009 6:54 pm
He is a precious young boy.
