New pics. Abe is doing better but is still on medical unit at Children's. He is on 0.3 liters of oxygen.
When he can tolerate 0.1 liters and show no signs of infection he can be discharged home. His lungs sound clear to the nurses and doctors. This admission has been stressful. He went from all oral feeds either bottle or breast to continous NG tube feeds. He is getting 32 oz daily. My breast milk supply went so low that he required formula. This is difficult for me since it is the one thing with my child that I have control over. He was given 12 hours of Simulac Advance with my permission. We had no other choice since the frozen milk exceeds the hospital standards. The attending doctor recommed Domperidone which is from Canada. I know some women from LLL meeting that have taken it. I am going to inquire about any side effects or adverse reactions. The doctor also mentioned donor milk however I don't feel comfortable with this. Abe had foul smelling diarrhea with Simulac so if he needs formula again then Nutrimagen will be used. The plan is to decrease oxygen by 0.1 every 12 hours. He might go home Monday. Well he just fell asleep so when I finish pumping nap time for mommy too. We hope he is better for the Christmas party for former NICU families at Madigan. It would be a nice for them to see how cute he is and not a sick, fragile baby on deaths door. His smile is so cute but I am his mother.
Tuesday, November 24, 2009
I am typing from phone fo please bear with me. Abe's chest x-ray looked worse on Sunday however the doctors said that it is common for it to not show up right away. He is still in strict isolation. I had vomiting on Saturday night so I had to leave him very unstable. I drank a Sweet Leaf Mint and Honey tea that I got at the hospital. It did not taste right but I drank it. I contacted them and they are going to contact distributor. Could have been an issue with proper lid seal. I got better quickly, that night. I had planned to stick around the hospital until he improved. He is improving however he was requiring 1.5 liter of oxygen, at home he is on 0.1. When I left tonight he was on 1 liter. I wanted the nurses to lower him to half a liter however they did not want to do it while he was sleeping. He is not working as hard to breath but still too much to go home. Also he is in pain. He did play with his toys tonight a little and he made baby noises and smiled. He is on continous ng tube feeds and might go home like that. I am going to ask about changing his antibiotic to oral since he won't go home on iv antibiotics. Also his oxygen requirement needs to be less. He is getting CPT from respiratory. This helps break up the mucus on the lungs. Oh he has right lower lobe pnemonia. He will remain in isolation until the the viral screen is confirmed. He has had some wonderful nurses. I have been too stressed and tired to really help in his care other than pumping the breast milk. I am going to sleep while Glenn waits for the laundry to finish. I have had to wash clothes daily since I only have two shirts and two pants. I am going to give a friend a set of keys to the house and have a "just in case bag packed" Thanks for the support. He is a little fighter. We will post more pics
Saturday, November 21, 2009
New pictures will be available soon. Abe is not spiking fevers any longer, his heart rate and respiratory rate are closer to his normal however he is having episodes of low oxygen saturations. His oxygen was increased from 0.1 to 1 liter. The higher need for oxygen is related to his NG tube feeds and the infection. His left foot was red, hot and swollen. This is the same foot where his blood was drawn. There was potential for a blood clot in his foot however the doctors don't feel that is an issue since his foot is better. When he was desating I thought, "oh no he has a pulmonary emboli (blood clot that travels to the lungs and causes respiratory distress" This was ruled out and more common in adults than infants. The blood cultures that were drawn at Naval Hospital were positive for gram positive rod (e-coli is a gram positive rod) however Children's repeated the culture since it was a heel stick and not a peripheral stick (blood from the veins). He is on a broad spectrum antibiotic so it will be effective against gram + or gram - bacteria. The fact he does not have a fever I would say that the medications are working. His IV went bad so the nurse had to re-start a new one. Thankfully she got it with one stick. He is acting a little more like himself however he still won't show me his dimple, not smiling. Still don't know when he will be discharged home however I doubt it will be before Monday or Tuesday. He is not tolerating NG tube feeds, has low oxygen with it, so he is getting a little breast milk via NG tube, 40 cc/hour. Discharge criteria would: fevers stable, no increased oxygen demand, tolerating NG tube feeds and breathing easily. He is in isolation so it is not recommended for us to have visitors. It will take him some time to recover after he is discharged so we will probably take a break from bible study, MOPS and church.
Friday, November 20, 2009
Abraham is doing a little better. He even put his right hand over his IV. We had to cover it with a sock so he does not pull it out.I put his crinkle book, he loves toys that make the crinkle noise, near him and he started to play with it a little. Then he fell asleep. He has not had a fever since early today. His cheeks are not flush and he is more alert and awake. He is still receiving IV fluids and was started on NG tube feeds at noon today. He will get 4 oz every 3 hours day and night. He is not strong enough to eat orally right now. He is still working really hard to breath and his oxygen saturations are lower. They are going to check with the doctors if he needs his oxygen flow increased. He is still on 0.1 liter (same as home). At home he does decrease to 87-88% however usually without oxygen. He has been holding his legs in the frog position, which could be a neurological sign. Neurosurgery feels that he does not have a VP shunt infection however they are also monitoring him while in-patient. He has a follow up CT scan and appointment scheduled the first week of December. Not sure if I posted this here or on face book however he also has pneumonia. We are not sure when he will be discharged home. However his fevers, respiratory status and nutrition/hydration would all need to be under control. He probably will need NG feeds at home.
Thursday, November 19, 2009
Abe came back postive for influzena type A, most likely H1N1. He was given a dose of antibiotic and started on Tamiflu. He is not doing well with taking his medications orally. He might require NG tube for medications and for feedings. We are going to try the Tamiflu in a small amount of breast milk. He is still working very hard to breath however is looking better and acting more like himself. He has fight in him (good thing for such a sick baby). He is not really wanting to be held and wants to sleep. Not sure where he picked up the flu but interesting that he had dose number 2 of the seasonal flu the day prior to getting punky on us. The flu shot is not a live virus so we think he probably already contracted it before Tuesday. He was a little clingy and fussy Monday night. Please continue to pray that his fever will break and his work of breathing will lessen so he can eat and get the antibodies the breastmilk will provide. I am not sure if Glenn and I will need Tamiflu.
Abe had his second seasonal flu vaccination on Tuesday and Wednesday morning he had a cough. We went to his scheduled appointments then headed back to Bremerton only to miss the 5:30 PM ferry. Had to wait until 6:45 pm and the heat in the Jeep is not working. Abraham was not taking in very much fluids however he could not eat for 3 hours prior to abdominal ultrasound. He took in only 8 oz since midnight so when we got to Bremerton we called pediatrician on-call. (He also had dry lips, flushed checks, fever of 101.1 and decreased urine output). We took him to Bremerton Naval Hosptial where he had blood cultures, IV fluids, chest x-ray, VP shunt series (x-ray that looks at his shunt). He was then transfered to Children's via ambulance. I would have just taken him to the ER when we were in Seattle however I am not sure if Tricare would have allowed this. It would have saved us huge travel time. By the time Abe and I arrived at Children's he was working hard to breath, although maintained his oxygen saturations without increased oxygen requirement. They are not sure what is wrong with him but he is being worked up for RSV, H1N1 and other cold/flu viruses or bacterial infections. His second chest x-ray really was inclusive of pnemonia however his clinical picture shows possible evidence. He can't eat right now however is getting IV fluids. CT scan in the middle of the night showed that his shunt was draining too much CSF so neurosurgery NP, UW grad, :-), reset it to drain slower. He still has fevers, flush checks, working hard to breath and is full of gas. So anti-virals or anti-microbial agents have been started. His heart rate is very high and respiratory rate however he is maintaining his oxygen saturations on 0.1 liters of oxygen (what he uses at home). He is not very interactive, appears to be in pain if moved and just wants to sleep. Neurological causes are also being ruled out. We are not sure when he will be discharged however please pray that he will return to his spunky self. He won't even smile to show me his dimple. He gave me sad lips when I asked him to show it me. His urine output has increased. Glenn is sleeping right now. Abe is in strict contact isolation so I don't think we can have visitors. Glenn and I are healthy. The nurse had to wear a special mask when collecting his nasal swab (test for viruses like H1N1). I am headed back to his room now. We might not make it on Sunday for the baby shower. Depends on his status, if we go home and also if it recommended for him to be around other children and people. He looks like a very sick baby in his crib here at Childrens. Thanks for prayers.