Our Quiverfull - Setbacks

Sep. 6, 2007

Setbacks

I am writing with something of a heavy heart tonight. Noah is just not doing well. He is still having significant pain in a very specific area of his left lower abdomen. He seems sad almost all of the time and seldom wants to do more than be held with his head on my shoulder. He has happy moments but we have to work for them, and they don't last long. He seems to be in a great deal of pain if he is moved at all - if we change his position, pick him up, put him down, etc. He balls up and is extremely tense and whimpering when he is moved, then relaxes more when he is settled into the new position.

Last night he was doing a lot of whimpering and was more lethargic than he had been. By the wee hours of the morning he was running a low grade fever even though his pain medicine contains Tylenol. By breakfast time he was up to a good 101.5 and has stayed at about that level all day. We are alternating Tylenol and Motrin but the fever isn't going any lower. Of course, we don't know how high it would be without the medicine since he has had medicine on board the entire time.

He had blood drawn right away this morning for cultures. Blood was drawn out of his broviac in case the line is infected. They also had to do a veinous blood draw. Noah was true to form and the nurse had a very hard time getting blood. His poor little hand and wrist have some pretty spectacular bruises. If the broviac blood grows out bacteria, then the line is infected. If the veinous blood grows out but the broviac doesn't, then he has infection in his blood stream but the line is still good. If they both grow out, then the line got infected and the infection spread to his bloodstream. Because Noah has had allergic reactions to almost every antibiotic he has ever had, he isn't getting antibiotics right now. He is being watched like a hawk and we should have the results of the cultures tomorrow. If he gets worse, they will have to start antibiotic treatment whether the cultures are back yet or not. If his line is infected it will need to be pulled and he will need more surgery to get a new broviac.

Noah had an upper GI with small bowel follow-through. It did not show any reason why he is having this pain or why he can't tolerate his g-tube feedings. The contrast did move more slowly than it should, but there is nothing that can be done about that. The only drug shown to help this has been pulled from the market because of cardiac side effects.

Since Noah's pain doesn't appear to be related to his GI system, the doctors are considering the possibility of a problem with his pancreas. They will be doing some labs to see how his pancreas is functioning.

When Noah had his big surgery to fix his malrotation and anatomy problems, the surgeon told us that patients with Noah's specific anatomy problems don't always improve as a result of the surgery. The surgery must be done to prevent more serious problems down the road, and without the surgery Noah would never have had a chance for any sort of "normal" feedings, but for some reasons some of these children don't do any better after the surgery than they did before. I am sad to say that it appears that Noah appears to be one of the children who does not improve. At this point he cannot even tolerate half of the feeding volume he was getting before - and the volume he was getting before was woefully inadequate for his needs.

Infection aside and possible pancreas issues aside, it looks like we are going to have to make some hard decisions in the days ahead. One option is to send Noah home on TPN feedings. This isn't a good option because TPN is VERY hard on the liver - sometimes even destroying the liver to the point of needing a transplant. It is also a very big deal and would require daily in home nursing care. Another option is surgery for a stand-alone j-tube. This isn't a good option because the small intestine can tend to twist around that tube which means more surgery - and we already know that if something can go wrong with Noah's intestines, it usually does. It is also possible that this wouldn't help at all and he would still go home on TPN. Right now we are just praying and researching. We don't need to decide immediately.

Our surgeon has also contacted the genetics team with all of this updated information. The geneticists are researching and calling colleagues to see if they can come up with any answers. It may be significant that Noah stopped his excessive sweating when his feedings were stopped, and started again when his feedings were started. If they can come up with other tests to do or any sort of syndrome/diagnosis it might help us decide what is best for Noah.

All I know is that I want my happy baby back. I am tired of watching him hurt without knowing how to help him and without being able to offer him any explanations or hope. I want to blog and complain about all of the mischief he got into - I want him to dump out all of our pots and pans, and unroll all of the toilet paper, and shred my favorite magazine. I want to be tired every night because I was chasing him all day, not exhausted because I watched him suffer all day.

Somany of you have emailed or called with the same question - you want to know how I am doing. I try not to answer anything beyond a simple "I'm OK," or "I'm pretty tired," because I really didn't know how I was doing until tonight. I guess tonight I can finally put words to it - I am feeling like a clay pot, like an earthen vessel. Just a humble and honestly too often weak vessel that is of great value only because of what that vessel holds. The Apostle Paul said it best, and there is no way I can improve on his inspired words - they really say all that I am and hope to be.

For God, who commanded the light to shine out of darkness, hath shined in our hearts, to give the light of the knowledge of the glory of God in the face of Jesus Christ. But we have this treasure in earthen vessels, that the excellency of the power may be of God, and not of us. We are troubled on every side, yet not distressed; we are perplexed, but not in despair; persecuted, but not forsaken; cast down, but not destroyed; always bearing about in the body the dying of the Lord Jesus, that the life also of Jesus might be made manifest in our body. (II Corinthians 4:6-10)

So how am I doing? Sad, but rejoicing in the hope of the glory of God (Romans 5:20). Exhausted, yet able to do all things through Christ who strengthens me (Phil 4:13). I have a heart that is both hurting and kept by the peace that passes all understanding (Phil 4:). I am a weak and humble vessel, but I am filled with the excellency of the power of God.

God is good, all of the time. All of the time, God is good.

Love,
Kate

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Sep. 6, 2007 - Untitled Comment

Posted by Anonymous

Dear Kate,

I know you don't know me at all...but I just want you to know that as a sister in Christ, I'm sending you love and lifting up prayers constantly for your precious son, you and your entire family. ~Yvonne from SHS