3-10-06
: Tommy had uncontrollable bleeding after the chest tube from the previous day. The doctors performed a bronch to try to recruit left lung function. This was unsuccessful. There was nothing else we could do for him after he endured massive internal bleeding. The family gathered over him as the doctors took him off ECMO. Tommy went to heaven at 5:48 p.m March 10. He lived a great life, and will never be forgotten. There was nothing else we could have done to save him. After yesterday’s massive bleeding, a lung transplant became impossible. Even if he were to get a transplant, things would have been difficult for him to adapt the new lung. Tommy passed without suffering, and we are grateful for that.
3-9-06 PM
:Tommy’s CT scan indicated two things: 1.) His head looks great. All signs indicate normality. 2.) He has blood clots in his chest that are located out side of his lungs. The bronch that was originally scheduled for 3 p.m. today has been pushed back to a later date. Instead, the doctors are going to try to remove the blood clot in his chest by performing a risky chest-tube operation. The procedure will include opening his chest, and removing the blood with the chest tube. This is a high-risk operation that may or may not produce favorable results. Updates regarding this surgery will be posted as they develop. Keep praying.
3-9-06
:His condition remained stable overnight. The doctors are going to perform a chest CT scan to see what his chest looks like. The CT scan will allow the doctors to see if using a chest tube to remove the excess blood will be possible. At 3p.m. today, there will be another bronch to remove the blood clot in his right lung. Because Tommy has been stable for a few days now, the doctors feel that it is safe to attempt to remove the blood clot. We are hoping he will not bleed when we remove it. More updates will be added as they become available.
3-8-06
:Tommy’s hemoglobin is normal, his bilirubin count is down and his platelet count is normal. This is all good. The bilirubin is the substance that makes Tommy appear yellow. Tommy has had a yellow tint to his skin for the last few weeks. He had a good night last night. We are going to try to oxidate his right upper lobe in his lungs by inflating it. We are considering inserting a chest tube in his right lung where all the bleeding occured to remove the excess blood.. To combat his blood pressure drop, we are administrating extra fluids along with some medicine to Tommy.
3-7-06
:Tommy continues to remain stable. His blood clotting difficulty that he experienced earlier (the DIC) is no longer an issue. His liver is indicating improvement. When Tommy’s blood pressure was acting up earlier, we had to increase his fluids. He cannot be eligible to receive a transplant if his fluids are as high as they are now. But we are expecting that he will improve enough where we can reduce his fluids back to normal. The blood clots still remain in his lungs. A machine has been ordered that will be placed on his head that will monitor the amount of sedation that Tommy needs. This will reduce the amount in his body and therefore help his liver. Doctors have been consulted from Florida to as far north as the University of Michigan. We are fighting for Tommy’s life.
3-6-06
:The brainwaves that were slowing down proved to be a false alarm. It was later discovered that many kids on ECMO develop this, so it was not of concern. He remains very stable and his liver functions are better. The transplant surgeon suggested that Tommy’s liver needs to improve before they put him on the transplant list. This should happen within the next few days. He remains very stable, and he even tried taking a few breaths on his own today. He was sedated after he tried, as his lungs are not in optimal condition to support him yet.
3-5-06
:On Sunday, he remained stable as well. An EEG test indicated that his diffuse was slowing. In other words, his brain waves were slowing down. Some doctors suggested that this was a result of the viral infection, but others speculate that it is a combination of the sedation medicine that still remains in his body along with the effects of the ventilator. A Macon doctor is coming up tonight to give his opinion on the results.
3-4-06
:Tommy remained the same in stable condition. The doctors preformed an ultrasound to check on the condition to his liver. The results indicated were positive.
3-3-06
:During the night, his condition remained stable. His liver function improved and so did his vital signs. However, at 6:00a.m., his pupils were abnormal. There are several reasons that may explain this. The most likely reason is that he has experienced severe cranial bleeding. If this is the case, there is nothing else we can do for him but praise that he did live a great life. If his head scan looks all right, he still has a chance and his liver may be the cause of the irregularity. Only time will tell, and we are anxiously awaiting the CT scan results.
3-2-06PM
:Dr. Joe Sam Robinson has pushed harder than it seems like anyone else has. Once told that it would be very difficult to implant a tube into his left lung to support it, Dr. Robinson wouldn’t accept it. He demanded that there be second opinions, and we eventually found another method. The hospital didn’t carry the tube, so a close friend from Macon volunteered to get one from MCCG’s OR and personally drive it up to Egleston. This tube was implemented successfully as a result of y’alls prayers. We are now preparing for tomorrow’s CT scan and a night of stability.
3-2-06
:Tommy is going to have a rough night tonight. We desperately need everyone praying for him.
2-28-06PM
:The chest x-ray Tommy received indicated the strongest lung improvement in two weeks. The pancreatic difficulty may be due to the blood in his body. As a precautionary measure ONLY, transplant doctors are coming to examine his condition and place him on a transplant list if necessary. Again, this is a solely a precautionary measure if things do not improve.
2-28-06
:The bronch that was scheduled today took place. No more bleeding accumlated, but oozing persisted in his lower lungs. The ventilator has caused Tommy to expirience problems with his pancreas. Special doctors are coming in today to look a possible solution.
2-27-06PM
:The bleeding that occurred two days ago has impeded his recovery progress. Every time he bleeds, we have to stop cleaning out his lungs and wait for the bleeding to stop. Right now, he still remains on the ECMO machine and all of the medicines he was on before. His condition remains stable and we are considering another bronch soon.
2-26-06
:Last night, one of the bronchs, along with a combination of his medicines, triggered bleeding from his mouth and nose. While not severe, it was certainly alarming. The bleeding has stopped and he returned to a stable condition.
2-25-06
:We apologize for the scarcity of the updates in the past week. But we have some great news: Tommy is recovering. His lung tests are coming back with astonishingly good results.The doctors continue to do bronchs on him to remove fluid from his lungs. The bleeding has stopped that previously came with the bronchs. Your vital support to our family through your prayers is evident in his recovery. Thank you.
2-19-06
:The doctors have discovered the cause of the pneumonia. One of the several bronchs revealed that the virus he has is the “HVV6” virus. His condition remains stable, and he has been placed on medication aimed to fight this virus. Please support the blood dirve Thursday.
2-17-06
:The results of the mold test returned negative. He remains stable today.
2-16-06PM
:Bleeding has stopped and his condition remains stable. We are planning on letting him rest for another four days. After that, we’ll try again to clean his out his lungs. Overall, his condition has improved.
2-16-06
:We are still waiting for the results of the mold test. The inspectors did find traces of mold but their toxicity is yet to be determined. The doctors aggresively cleaned out his lungs of blood in the bronch but agitated yet more bleeding. The plan is to allow his lungs to rest for awhile before trying again. He remains in stable condition and information regarding a blood drive next week at Stratford will be posted as soon as the plans are made final.
2-15-06
:Another bronch today. The doctors cleared a lot of material out from his lungs, but still some remains in the right lung. Tommy was put on a medicine and a jet ventilator to help clear out his lungs. However, still some bleeding remains although this is expected. We hope to see improved results in a chest x-ray tomorrow. Today, the house was checked by local health officials for mold; results will be available tomorrow. Other than that, he remains in stable condition.
2-14-06
:The ooze still continues from his lungs. The doctors also have speculated that a possible source of his illness may be from a toxic mold found in our attic. This is not a definite origin, but only a suggested possibility. We will have a health inspector test our attic to see if any results return positive. Tommy will undergo the bronch tomorrow where a possible tissue sample may be drawn to send to the CDC. Today’s chest x-ray indicated an improved lung condition. Information will be coming soon on the website with information regarding donating blood in Tommy’s name. Although it is not logistically possible to donate blood solely for Tommy, we know first hand how important donated blood can be.
2-13-06
:(9 PM) Tommy continues to remain in stable condition. The bronch scheduled for today has been postponed again until Wednesday approximately. Friday’s bronch agitated his lungs to cause them to bleed . Because he still has DIC, it was safest to wait for his bleeding to diminish. Other than that, his platelet level remains low and the daily plasma exchange was successful.
2-12-06
:The follow-up bronch will be tomorrow. Today, he remains in stable condition. He underwent another plasma exchange and his blood platelet level still remains low.
2-11-06
:Plasma exchange continues again today. The bronch was not preformed because his lungs became agitated with yesterday’s bronch and started to bleed. Tommy will be given today to rest, and the bronch will be postponed until sometime next week. He remains stable and the results of the chest x-rays continue to improve.
2-10-06
:Tommy had another bronch today. The bronch reveiled congestion that still remained in his lungs. The doctors removed what they could, and scheduled another one tomorrow to finish up.
2-9-06
:No evidence for active bleeding, but Tommy continues to have trouble with DIC. Your throughs and prayers are welcome.
2-8-06
:Tommy has NOT been diagnosed with ehrlichia, but is only believed to have it. Tommy only has SOME of the symptoms that ehrlicia prescribes so he has not been fully diagnosed withi this. His illness still remains to be a mystery. The different medications the doctors have tried on him have not had a beneficial effect.. Because some of Tommy’s symptoms match with those of ehrlicia, and because the antibiotics for ehrlicia will not harm him, the doctors seeing if this will work.
2-7-06
:The doctors now believe Tommy has a disease called “ehrlichia” (earl LICK e ah), a tic borne illness. They have tried different antibiotics for different diseases with no improvement, so they believe Tommy has this one. Unfortunately, he is allergic to the most effective form of antibiotic for the ehrlichia called “tracyline.” So as a result, the doctors looked at other possible diseases before they found “rifampin” (rife AM pin) and “levaquin,” antibiotics known to treat ehrlichia. Hopefully, these antibiotics will be effective. This morning, Tommy’s platelets were down to 80,000, so he was given more platelets. Last night, Tommy underwent another successful plasma exchange. The oozing in his lungs has diminished; he still remains on ECMO in stable condition.
2-6-06
:Apparently there is some oozing present in his lungs. The level has gone down some, but there is oozing nonetheless.
2-5-06
:The current platelet count remains around 120,000, which is higher than before. There is still some oozing from his lungs, but overall he is still sick. He’s in stable condition today, which is good.
2-3-06
:Tommy had another bronch today.The results were very favorable. The bleeding that the first discovered caused clotting in his airway. The doctors successfully removed the clots without any further bleeding. As a result, Tommy’s airway is opened. We still haven’t found out exactly what has caused the pneumonia. Everythng else remains stabe with him. Good news for today.
2-2-06
:Tommy continued with another day of the plasma exchange. His blood platelet count is up, so thats good. The doctors have yet to determine the type of virus that he has. All the viral cultivations have returned negative. As a result, he has been taken off some of the antibiotics that he was on earlier. His plasma exchange was successful again today. Tommy continues to remain stable.
2-1-06PM
:Relatively calm night. His condition remains stable, so we are excited about that.
2-1-06
:Last night he remained stable throughout the night. Right now as of 11:15, they are doing the plasma exchange right now which has proved to help him out in the past. We haven’t heard from the doctors, so we assume this is a good sign.
1-31-06PM
:The plasma exchange has been extremely successful. Starting today for the next 4 days, Tommy will be put on the plasma exchange machine for two hours a day to fight the DIC. The internal bleeding in his lungs has stopped and his condition remains stable. The doctors have estimated that he will spend the next 5 days in the PICU in Atlanta and several weeks possibly months in the hospital recovering. We are all very optimistic about the current situatuion.
1-31-06
:Following the bad news with yesterday’s bronch, the doctors adjusted some settings on the heart-lung machine that have helped some. But they also discovered that he has something called “DIC.” The DIC is a blood clotting difficulty that is affecting his lungs. To help with this, the doctors have started a plasma exchange procedure. But other than that, his condition remains stable.
1-30-06 11PM
:11 PM: The bronch results were not good. We found internal bleeding in his lungs. Due to the change in his vital signs, the doctors have determined that he has an infecton somewhere in his body that they are looking for. Apparently, some medicine can take care of the bleeding but they have to find the infection first before they can do anything about it. He also had a rough night last night. But as the doctors explained earlier, there are likely to be several ups and downs before the whole thing is over with.
1-30-06
:As of 2:00 P.M. today, Tommy was undergoing the bronch. We are waiting for the results.He still remains medically sedated, but he is doing fine. He’s on a ventilator, feeding tube, the heart-lung machine and a machine to help his kidneys. As of yesterday, the doctors said that he could be taken off the heart-lung machine today because of his excellent condition, but they are planning on leaving him on it to maximize recovery.
1-28-06
:Tommy has had “one of the best” reactions to the heart and lung machine that the hospital has seen. He’s doing extremely well. The doctors will give Tommy a bronch, a procedure that calls for a camera to be inserted into his airway to look inside his lungs. This will allow the docs to see exactly how well the treatment is doing and if there are any complications that may have arisen.
1-27-06
:Everything is starting to look better. It has been suggested that we keep him in the ICU for another 8 days under sedation and on the external oxidation machine for the best results.
1-26-06
: Tommy Robinson has been diagnosed with Viral Pneumonia. Last Sunday, Tommy was booked in the Pediatric Intensive Care Unit of the Medical Center of Central Georgia until Thursday, when he was transferred to the Egleston hospital of Atlanta, GA.
1-26-06
: Website created