Maddening

As always everything here changes or stays maddeningly the same. The walls are the same, so is the food and the level of exhaustion. But John isn't going to be back on TPN - at least not yet. His IV fluids are only going to run 12 hours at a time.

Finally got a chance to talk with Sharon and she with Rothbaum and Hanna. They sound hopeful to get John off TPN and broviac free without doing the STEP procedure. We hope and pray that is how it goes. We have the utmost trust in Dr. Keshen and believe that if STEP is needed he is the best person for the job for John but even he seems to hope it's not necessary.

Sharon may be able to arrange a sit down with all docs involved. I think she called it a Care Conference. We want to know how long John's liver will hold out and therefore how long before the STEP would have to be considered.

When I see Hanna tomorrow though I need to find a way to clearly communicate to him that A. we hope and pray John cane come off TPN without any surgical intervention and B. that we will sit here as long as it takes. I have to be more careful with how things are said around here because I don't want anyone to think that we aren't prepared to sit still and wait. It is the damnable miscommunication around here that drives me insane.

Margaret is our nurse today. She is so nice and so maternal it leaves me nothing to do. So I've had time to write and go for walks and even found 5 yards of Munki Munki Cowboy fabric to buy. I have no clue what I'm going to do with 5 yards of that fabric other than making stuff for John out of it. By the time I get home my sewing room is going to be buried under fabric and such. Mark is going to bring the Fitting book up for me so that I can order the tools and notions that I need to use the book when I finally get home.

John's napping peacefully the crane is moving back and forth outside the window and it's tempting to catch a nap but I think I'll crochet for a while instead. Oh and think about all the things I can don on my new laptop with it gets here.

Good Friday

John's broviac was placed yesterday. Despite it being the 6th line Dr. Keshan said it went in easy. The night went well. Mark's at home, of course, and we miss him but I'm determined to remain positive about things. John looks good. His labs, well his bicarb is now up to 35. Still running D10 w/acetate but have cut acetate in half and since bicarb is continuint to rise and feeds are started we cut the rate from 45 to 20. Today should prove interesting. TPN starts again today - I'm asking for only 12 hours but we'll see how that goes. It's still hard to sit here - but we are going to get out and go do stuff and that will make it easier by a long shot. Dr. Peggy Chern - 1st year resident, ours for a couple more weeks I believe; very good, one of the best that I've seen around here - not that we've seen lots of bad ones, just that she's one of those that is especially good. One of the pastors is supposed to be in tonight. That will make things easier, I need that help focusing on Christ and His Word. I told Mark I feel very disconnected here, and I do, but much of that is my own fault for letting myself be that way.

On To Plan B

Plan A - diluting John's formula and increasing the rate until he could be IV fluid free resulting in puking at 3am. But John is still doing well and we are on to Plan B which if it goes well will also result in no IV fluids. It is necessary that he gets a new broviac central line placed, that should happen on Thursday. Because of necessity of frequent blood draws, and need for quick IV fluids while we are trying to get him stable, he needs a new line. But they are going to give him a little dose of anti-fungal every week to help ward off infection and they are hopeful that we can have the line removed permanently in the next couple of months.

For the moment it looks like we will be discharged on Friday, although they are sounding like they want to keep us close so we may end up at Ronald McDonald house here in town for a while. Every one is trying very seriously to keep John off of TPN - he came off yesterday.

We'll let you know how plan B is going, and if it doesn't work there are already other plans being hatched ;-) Thanks again for your prayers, love and support. In Christ's Love, Mark, Gina and John - who is doing great and smiling lots

3 1/2 tsp Miracle

3 1/2 tsp, 16 mL's a little over 1/2 ounce per hour is the rate increase that John has had on his formula since Friday. This from the child that has until now never made more than 1 mL increase in a day. And it came with no puking, no explosions from the other end, no g-tube leakage and no fussy, upset pumpkin. So John is now at 80% of his caloric needs being met through formula. There is now a real discussion going on about him not needing his broviac replaced - where that will go we don't know at this point, but this is the first time it has even been a possiblity.

Other than this feed increase there is more good news. John has gained weight, the first weight gain since he was discharged from the hospital before Christmas! Just a couple ounces, but the first time the scale has said anything higher at all.

And more good news. Everyone that knows John - and there are lots of people here that do says that he looks better and more healthy than they have ever seen him before - and he does. He looks fantastic. His coloring is beautiful, less jaundiced and his cheeks are nice and rosy. He is talking up a storm, entertaining everyone that looks at him and in general having a great time.

John's last dose of fluconazol is on Wednesday, he is scheduled to have his broviac replaced on Thursday. Also on Thursday we are supposed to be discussing the STEP procedure again, and home on Friday.

How things will actually go is anyones guess from here and all in God's will!!! What we have seen this weekend has been awesome and we thank God for how wonderful our little pumpkin is looking and doing. We also thank Him for each of you, for your love, prayers and support. We'll write again later in the week and let you know how things are going. Love and prayers, Mark, Gina and John - who is now sitting up in his stroller like a big boy (not in the car seat) reaching for the toys on the tray with his one un-IV'ed hand.

John's Weekend

John was admitted to the PICU at 3:45 am on Sunday for severe acidosis. Normal body pH should be 7.35 John's was 7.02, normal body CO2 (bicarb) should be in the lower 20's John's was 7. He scared a whole bunch of people but in the PICU began to recover rapidly and this morning he is doing great with normal numbers, even for other people not just normal John numbers. While in the PICU we also found out that he has RSV. While that can be a devastating illness in babies John seems to be handling it quite well. He has not needed any oxygen support nor other breathing helps and for all the world just sounds like he has a pretty bad cold - which is really what RSV is. He continues on the fluconazol - antifungal drug and other than that seems good. He will probably be moved out of the PICU today and back out on the floor.

The acidosis was brought on by a combination of factors but probably the biggest was being a bit too aggressive in turning down his TPN and pushing his feedings - but the aggressiveness of treatment with John's GI issues is what keeps him chugging along and developing well. The GI docs are now going to address John's feedings by divorcing the two issues 1. his need for caloric intake and 2. his need for fluids. What this means for John is that for the moment he is back on full TPN but once he is out on the floor and ready they will start his g-tube feeds again. As the g-tube feeds increase they will take the caloric things, amino acids and such out of the TPN. Of course this means that he has to have a new broviac central line put in later this week or early next week, but once the caloric things have been completely removed from the TPN his liver will start to recover and his line will be less susceptible to infections. After he is getting all of his calories through his g-tube and/or by mouth then they will start to try to wean him off the IV fluids. This of course is going to take some time and will depend heavily on what John's system can handle.

As always we thank you for keeping John and us in your prayers. We''ll try to send a pic of John out pretty soon. Thanks again, you are all such a blessing to us. In Christ's Love, Mark, Gina and John who even during all the struggles with stuff in the PICU still made the nurses smile and oh and ah.

The Good and the Not So Good

The good news, make that great news is that John is still on the floor and not in the PICU. Also that the yeast has not taken up residence in his eyes.

The not so good news is that last night while giving him blood products to get him ready to have his central line removed this morning he developed a pleural effusion - fluid in his lungs. A little oxygen and lasix and by afternoon he was fine but it delayed having his line removed until tomorrow.

Also on the not so good news part is that an ultrasound of his kidneys showed that has a kidney infection, but the good part is that it is bacterial and they were already treating him with antibiotics appropriate for the infection. Unfortunately his kidney function has dropped some and the kidneys themselves are worse off than the last time they were seen via ultrasound.

Also on the not so good news part is that during the echocardiogram they found a spot in his left ventricle that could be a clot or could be a yeast ball. They won't know for sure for a little bit and some more consulting with cardiology and the infectious disease doctors. This is not compromising his heart function at the moment but if it is yeast it will mean that they will have to treat longer with the antifungal drugs that are so damaging to his already fragile kidneys.

On a good note however his fever is not nearly so high as the last time we went through this. His GI docs are ready to start really pushing feeds as soon as his line is out and expecting that if he can't tolerate them at the rate they hope will work a 5ml per hour increase per day, that they will be able to back down to something a little less aggressive and keep increasing them. John is currently at 55% of his caloric needs being met through g-tube feeds and he needs to be at 80-90% for them to not place another broviac or remove a temporaryily placed one.

Today has been exhausting and although we are holding up okay we are looking forward to a little sleep and a quiet night where they aren't trying to fill him with blood and taking his vitals every 15 or 30 minutes throughout the night. The nursing staff is of course great and has taken great care of John and of us - they make things much easier than they would otherwise be.

Thanks so much for the encouraging notes and prayers. We continue to pray and rely on God's good and gracious will to carry us through this current struggle. In Christ's Love, Mark, Gina and John - who even though so tired he could barely hold his eyes opened managed one small smile before he fell asleep this evening

John's Progress

John was admitted to University in Columbia for a fever on Saturday afternoon. Sunday afternoon we transferred to St. Louis Children's after learning that he has another yeast infection in his blood and will most likely have to have his central line pulled again.

This is the exact same type infection that made him so sick back in November and December with a few exceptions. Dr. Cooperstock, the infectious disease doctor at University in Columbia cultured the yeast out much, much faster than last time. The accompanying urinary tract infection is very minor, not even bad enough to be treatable in a normal kid - but then John is unique, so they are treating. There doesn't seem to be a bacterial infection in his blood also. His fever hasn't gotten as high as last time and keeps coming way down. He is staying hydrated because of very aggressive therapy with IV fluids and with enteral feeds. They did have to start treatment with amphoteracin today. That is an antifungal drug that is very toxic to the kidneys, but at this point there is little choice but to use it and hope for the best. So far that is going well. He is still on the floor, instead of being in the PICU and is still breathing easily, and even having a good many times during the day when his fever is down and he is smiling and carrying-on with the nurses, PCA's and everyone that walks past the window. He is holding up well, and it is our prayer that he continues to do so, of course.

The gastroenterologist that is a liver specialist came by to see him today and to tell us that the situation with his liver enzymes is getting dangerous, but it looks like the g-tube feedings are going well and so he will be pushing them to push him to 80 or 90 % of what he needs calorically through the tube feeds during this hospitalization. Hoping that he can have them remove the broviac central line this time. Once that line is gone these dangerous infections should no longer occur and the damage to his liver should start to reverse itself some. So that means that we could be here for quite some time.

Once again God has already provided the right people to take care of John and people aside from John for us to care for too. One of the PCA's (patient care assistant - nurses' aid type position) came by to talk to Mark today because her mom recently died and she knew that he would take the time to help her understand some of the things that she's been reading in her Bible and to give her some comfort. It is again our prayer that God's will be done for John, that He would strengthen him and us to go through these things and that He would provide opportunity for us to help those here who are hurting - and there are many.

We should be able to send email every day or so and will let you know how things are going here. Thanks so much for keeping John and us in your prayers. In Christ's Love, Mark, Gina and John - who even though he is sick still thinks the med students are his personal fan club and smiles and sticks his tongue out at them when ever he gets a chance